People are worried after yesterday's post that I am going to flush my unused Exjade down the toilet.
I didn't really mean it. I meant it more symbolically, if that makes sense. Like, "I'm gonna wash that man right out of my hair."
Don't worry, they are still on my dining room table.
I am going to take them to the pharmacist.
A concerned friend sent this to me:
• A recent study shows that 80 percent of US streams contain small amounts of human medicines
• Sewage systems cannot remove these medicines from water that is released into lakes, rivers or oceans.
• Fish and other aquatic animals have shown adverse effects from medicines in the water.
• And, even very small amounts of medicine have been found in drinking water.
If anyone is wondering about this, the DEA has a whole fact sheet on it.
Showing posts with label Exjade. Show all posts
Showing posts with label Exjade. Show all posts
Sunday, October 25, 2015
Saturday, October 24, 2015
Victory!
In subsequent matches, if one of us said "5-2," it was shorthand for "don't slack off."
I was thinking about this recently when eyeing my stock of Exjade (deferasirox) and thinking, as I have done most mornings for some six years, how much I did not want to take any more. But with my ferritin in the 800's the last time we checked, it was the home stretch, and I pushed myself to take it some more.
Five pills dissolved in water every day. Drink on an empty stomach. Feel queasy. Wait 30 minutes before eating. Even the reps who called from Express Scripts were annoying, repeating the instructions s-l-o-w-l-y.
In case you missed it: Exjade binds to iron and carries it out of the body. The price that Accredo charges – $8,114.90 per 30-day supply – is thankfully covered by my insurance. When I felt like skipping, I thought of the risks of the ferritin overload that had resulted from multiple transfusions.
If you are still with me, the point is this: Yesterday I got a call from the nurse practitioner who was covering for Melissa, who was not in the office. She said the prescription had come up for renewal and Dr. Alyea said I was done! I think my ferritin level was 742, close enough to normal and low enough that the small amount of blood loss during ECP will take care of it. I believe that when I started, it was around 8,000. Normal for women is 11 to 307 (nanograms per milliliter).
I psyched myself up on this homestretch for nothing. I guess psyching myself up most mornings for the past six years was enough.
Meanwhile, I have nearly $10,000 worth of pills left. You hate to waste something so valuable, but I'm afraid they are going to go down the toilet.
Saturday, September 19, 2015
Numbers go in the right direction, skin softens up
A few days ago, Melissa emailed me saying she had asked Diane at ECP to check on the kidney function that was elevated last week.
That was a little disquieting since I thought I was done with all that, but then I realized it was most likely due to dehydration. Taken to the extreme, dehydration can even cause kidney failure. I wrote her and asked if that was the reason; she said yes and apologized for not having mentioned that effect of dehydration.
In any case, I worked hard during the week to ameliorate the problem. Also it wasn't as humid so I probably did not lose that much in sweat. Just as George congratulates us on having a "mature shot" in tennis, I gave myself a little recognition for having a mature reaction to the email about my kidney function, in other words, I didn't jump to the conclusion that something dire was wrong.
I never got those results, although I did find out that my hematocrit was back down to around where it should be – 31 – compared to the high of 35, which, although usually normal, suggested dehydration in me because I have been lower due to the ECP.
In a follow-up email, Melissa told me the good news that my ferritin is down to 877. That is very big news because I have been working hard on that by making myself take Exjade most mornings to reduce the level, which I think was as high as 6,000 after all those blood transfusions. (Normal is 12-300 nanograms per milliliter.) I wish I could share that with Patricia.
I drove myself in on Thursday because I had a dermatology appointment at 1 p.m. at another location before my 3 p.m. ECP at Dana-Farber, and although on paper it might have worked out to take the rides, I could see a disaster waiting to happen if I went that route. Dr. Alyea had predicted that my skin would have sprouted nasty things due to my sun exposure over the summer, but in fact Dr. Lin only saw a few things to which she gave a light zap.
She said she could see that the ECP is helping my skin; pressing on my abdomen, she explained to a resident that I had previously had a hardening of the area – scleroderma – and now it is getting softer.
She did, however, tell me to apply chemotherapy cream to a flaky spot on my upper lip. I had a Mohs procedure to remove a squamous cell cancer there, and while it should be gone, the flakiness suggests that perhaps some is left. Hopefully the cream will take care of it so I don't have to get that surgery again.
Then it was on to ECP, where the needle went in fine, as compared to last week, when dehydration had caused my vein to flatten out, thereby requiring two unpleasant sticks.
My nurse on Thursday, Esther, is a pillow fluffer par excellence. She is the best one at getting me as comfortable as can be for the three hours that I am immobilized with my arm outstretched.
When I have the time, as I did on Thursday, I like to go onto the other side and thank the platelet donors and tell them the story of how an anonymous donor saved my life when I was at death's door.
Everyone seemed pleased, except for the nurse who, upon seeing my Metrocard bag, asked if I was a Yankee fan and was disappointed when said no.
That was a little disquieting since I thought I was done with all that, but then I realized it was most likely due to dehydration. Taken to the extreme, dehydration can even cause kidney failure. I wrote her and asked if that was the reason; she said yes and apologized for not having mentioned that effect of dehydration.
In any case, I worked hard during the week to ameliorate the problem. Also it wasn't as humid so I probably did not lose that much in sweat. Just as George congratulates us on having a "mature shot" in tennis, I gave myself a little recognition for having a mature reaction to the email about my kidney function, in other words, I didn't jump to the conclusion that something dire was wrong.
I never got those results, although I did find out that my hematocrit was back down to around where it should be – 31 – compared to the high of 35, which, although usually normal, suggested dehydration in me because I have been lower due to the ECP.
In a follow-up email, Melissa told me the good news that my ferritin is down to 877. That is very big news because I have been working hard on that by making myself take Exjade most mornings to reduce the level, which I think was as high as 6,000 after all those blood transfusions. (Normal is 12-300 nanograms per milliliter.) I wish I could share that with Patricia.
I drove myself in on Thursday because I had a dermatology appointment at 1 p.m. at another location before my 3 p.m. ECP at Dana-Farber, and although on paper it might have worked out to take the rides, I could see a disaster waiting to happen if I went that route. Dr. Alyea had predicted that my skin would have sprouted nasty things due to my sun exposure over the summer, but in fact Dr. Lin only saw a few things to which she gave a light zap.
She said she could see that the ECP is helping my skin; pressing on my abdomen, she explained to a resident that I had previously had a hardening of the area – scleroderma – and now it is getting softer.
She did, however, tell me to apply chemotherapy cream to a flaky spot on my upper lip. I had a Mohs procedure to remove a squamous cell cancer there, and while it should be gone, the flakiness suggests that perhaps some is left. Hopefully the cream will take care of it so I don't have to get that surgery again.
Then it was on to ECP, where the needle went in fine, as compared to last week, when dehydration had caused my vein to flatten out, thereby requiring two unpleasant sticks.
My nurse on Thursday, Esther, is a pillow fluffer par excellence. She is the best one at getting me as comfortable as can be for the three hours that I am immobilized with my arm outstretched.
When I have the time, as I did on Thursday, I like to go onto the other side and thank the platelet donors and tell them the story of how an anonymous donor saved my life when I was at death's door.
Everyone seemed pleased, except for the nurse who, upon seeing my Metrocard bag, asked if I was a Yankee fan and was disappointed when said no.
Sunday, August 30, 2015
When bad things lead to good outcomes
I had a lovely brunch yesterday with my friend Bev Bloomberg at Jake's in Northampton, where I reminisced about how Jim and I, when living in Florence, used to bring our newspapers down there.
When the conversation turned to seemingly bad events that had led to positive outcomes, I realized I had a new medical adventure that was turning out differently than I expected, namely the ECP, or photopheresis to treat my graft vs. host of the skin.
I was dismayed when I learned in May that I had to do this for two consecutive days for three hours at a time for 12 weeks and then one day a week for another three months (where I am now) and then after that with decreasing frequency.
But in addition to improving my overall movement and my tennis game, it has led to meeting a new group of warm, funny, caring nurses and another great doctor, William Savage, medical director of the Kraft Family Blood Donor Center. He is so easy-going and friendly. The first time I was in there I was squirming in my chair with that big needle in my arm and couldn't believe I could last for three hours, but he said, "Just make yourself as bored as you can get, and the time will pass."
Actually (except for the matter of the big needle and keeping my arm straight), I can now say, although it is hard to believe, that it is pleasant to be there. The nurses fuss around, arranging your pillows, bringing a warm blanket, joking and sharing their stories. I mostly read the New York Times on my computer, or watch a little something on Netflix, or read a bit of a New Yorker or a few pages of a book. It's hard to turn pages with one hand. Most often, I fall asleep.
Dr. Savage is especially interested in the changes in my tennis game. First thing he says when he walks by is, "How is your tennis game"? I'm the only tennis player who has passed through there. I said maybe they'll do a study on me. I also told him that I'm moving better in yoga because my skin is less tight.
The other things that came up with Bev were:
#1 Bad thing: losing 12 teeth due to being immunosupressed for so long, with the positive outcome of one of the surgeons seeing a suspicious spot on my tongue and that spot turning out to be precancerous cells. I'm not saying it was fun to have a piece of my tongue scooped out – it hurt like hell for a long time afterwards – but that was the end of it, and I was saved from a worse outcome. I thought about this when beautiful Ann Gregory survived a blood cancer and a bone marrow transplant but succumbed to a squamous cell cancer that started undetected on her tongue.
#2 Bad thing: missing my cousin Nancy's 60th birthday bash in California due to double pneumonia that landed me at Brigham and Women's Hospital instead of on a plane going west. Positive outcome: a scan to find out the extent of the pneumonia led to the discovery of a small kidney lesion (euphemism for cancer) that otherwise would have gone undetected and most likely led to full-blown kidney cancer. A surgeon was able to remove a small section of my kidney. Not that it was fun to have that kidney resection surgery on Katie's birthday two years ago – and again, I remember standing in my kitchen crying hysterically because the pain medicine wasn't working and the doctor's office hadn't returned my calls – but now all I have is the scar and the memory of another narrow escape.
As I write this I can hardly believe this all happened to me.
But it did, and I just want to say, you just never know how things will turn out.
When the conversation turned to seemingly bad events that had led to positive outcomes, I realized I had a new medical adventure that was turning out differently than I expected, namely the ECP, or photopheresis to treat my graft vs. host of the skin.
I was dismayed when I learned in May that I had to do this for two consecutive days for three hours at a time for 12 weeks and then one day a week for another three months (where I am now) and then after that with decreasing frequency.
But in addition to improving my overall movement and my tennis game, it has led to meeting a new group of warm, funny, caring nurses and another great doctor, William Savage, medical director of the Kraft Family Blood Donor Center. He is so easy-going and friendly. The first time I was in there I was squirming in my chair with that big needle in my arm and couldn't believe I could last for three hours, but he said, "Just make yourself as bored as you can get, and the time will pass."
Actually (except for the matter of the big needle and keeping my arm straight), I can now say, although it is hard to believe, that it is pleasant to be there. The nurses fuss around, arranging your pillows, bringing a warm blanket, joking and sharing their stories. I mostly read the New York Times on my computer, or watch a little something on Netflix, or read a bit of a New Yorker or a few pages of a book. It's hard to turn pages with one hand. Most often, I fall asleep.
Dr. Savage is especially interested in the changes in my tennis game. First thing he says when he walks by is, "How is your tennis game"? I'm the only tennis player who has passed through there. I said maybe they'll do a study on me. I also told him that I'm moving better in yoga because my skin is less tight.
The other things that came up with Bev were:
#1 Bad thing: losing 12 teeth due to being immunosupressed for so long, with the positive outcome of one of the surgeons seeing a suspicious spot on my tongue and that spot turning out to be precancerous cells. I'm not saying it was fun to have a piece of my tongue scooped out – it hurt like hell for a long time afterwards – but that was the end of it, and I was saved from a worse outcome. I thought about this when beautiful Ann Gregory survived a blood cancer and a bone marrow transplant but succumbed to a squamous cell cancer that started undetected on her tongue.
#2 Bad thing: missing my cousin Nancy's 60th birthday bash in California due to double pneumonia that landed me at Brigham and Women's Hospital instead of on a plane going west. Positive outcome: a scan to find out the extent of the pneumonia led to the discovery of a small kidney lesion (euphemism for cancer) that otherwise would have gone undetected and most likely led to full-blown kidney cancer. A surgeon was able to remove a small section of my kidney. Not that it was fun to have that kidney resection surgery on Katie's birthday two years ago – and again, I remember standing in my kitchen crying hysterically because the pain medicine wasn't working and the doctor's office hadn't returned my calls – but now all I have is the scar and the memory of another narrow escape.
As I write this I can hardly believe this all happened to me.
But it did, and I just want to say, you just never know how things will turn out.
Wednesday, March 25, 2015
(Nurse) Friend for a day
Well, actually, she was only my friend for about an hour and a half, but she made my bimonthly therapeutic phlebotomy as pleasant as can be yesterday at Baystate Health, where we chatted away the time about this and that and touched on such important topics as my nurse Lynn having the same name as my mother, only spelled differently.
It was much better in the new location in a hospital setting as opposed to where it was formerly done in the blood donor center.
I had a bed and a nice nurse to sit with me, and although this is not a good photo of me, I am posting the selfie for fun.
(Note to grammar checkers: I double checked the most common use of bimonthly and it is every two months, although it can also but less often mean twice a month.)
I always felt out of place in the blood donor center, where through no fault of my own I am dumping blood rather than donating it like the good souls in the other chairs.
Plus, the nurses who I dealt with yesterday understood where I am coming from and took the time to reassure me by giving me a second finger stick when I was not happy with the hemoglobin count from the first one.
To back up: One time when I went to the donor center for this procedure, my hemoglobin measured 11. My orders from Dana-Farber required it to be 11.3 or above, so they said they couldn't do it. Also they seemed to forget why I was there, because the phlebotomist, when seeing the low level, said, "Good news, you don't have to be drawn."
I had carved out a chunk of my day to do this, and I asked if they would please recheck it because previously this had happened at the Kraft Blood Center at Dana-Farber and when they rechecked after I warmed up my hands, it was fine.
The phlebotomist made a big production, calling in her supervisor and even paging a doctor, who all said it was a good stick and they saw no reason to take the seconds needed to try again.
Yesterday the finger stick showed 11.4. It was high enough to draw, but although I know realistically that after six years I am safe, an aberration can still put me into a reflexive panic mode. Just a few weeks ago my tests at Dana-Farber showed a normal level, (12-something, in the low normal range of 12 to 15.5, but normal is normal) and I wondered how it could drop so quickly.
The nurse who had tested it yesterday let me run my other hand under hot water and sit on it for a minute or two, and viola`, "You'll be much happier this time," she said, because it read 12.2.
I could have had an extra-strength day by taking the Exjade in the morning, but I treated myself to a day off.
Lynn said to take it easy for the next 48 hours. I wondered if maybe I could just go Pilates today because that it not too strenuous. She said that actually it is, and I said, oh yes, the hundred...
Struggling to stay awake at the end of my short drive home from Springfield, I pulled into the Big Y parking lot in South Hadley to take a nap.
This morning, a cup of coffee and a piece of orange almond cake at the Thirsty Mind while writing a piece for the Vassar Quarterly helped pick me up. Twice around the lake and a walk through campus with Maddie and a friend saved me from following up on my notion that I should at least go to the pool.
It was much better in the new location in a hospital setting as opposed to where it was formerly done in the blood donor center.
 |
| My nurse, Lynn Schwartz, and me |
I had a bed and a nice nurse to sit with me, and although this is not a good photo of me, I am posting the selfie for fun.
(Note to grammar checkers: I double checked the most common use of bimonthly and it is every two months, although it can also but less often mean twice a month.)
I always felt out of place in the blood donor center, where through no fault of my own I am dumping blood rather than donating it like the good souls in the other chairs.
Plus, the nurses who I dealt with yesterday understood where I am coming from and took the time to reassure me by giving me a second finger stick when I was not happy with the hemoglobin count from the first one.
To back up: One time when I went to the donor center for this procedure, my hemoglobin measured 11. My orders from Dana-Farber required it to be 11.3 or above, so they said they couldn't do it. Also they seemed to forget why I was there, because the phlebotomist, when seeing the low level, said, "Good news, you don't have to be drawn."
I had carved out a chunk of my day to do this, and I asked if they would please recheck it because previously this had happened at the Kraft Blood Center at Dana-Farber and when they rechecked after I warmed up my hands, it was fine.
The phlebotomist made a big production, calling in her supervisor and even paging a doctor, who all said it was a good stick and they saw no reason to take the seconds needed to try again.
Yesterday the finger stick showed 11.4. It was high enough to draw, but although I know realistically that after six years I am safe, an aberration can still put me into a reflexive panic mode. Just a few weeks ago my tests at Dana-Farber showed a normal level, (12-something, in the low normal range of 12 to 15.5, but normal is normal) and I wondered how it could drop so quickly.
The nurse who had tested it yesterday let me run my other hand under hot water and sit on it for a minute or two, and viola`, "You'll be much happier this time," she said, because it read 12.2.
I could have had an extra-strength day by taking the Exjade in the morning, but I treated myself to a day off.
Lynn said to take it easy for the next 48 hours. I wondered if maybe I could just go Pilates today because that it not too strenuous. She said that actually it is, and I said, oh yes, the hundred...
Struggling to stay awake at the end of my short drive home from Springfield, I pulled into the Big Y parking lot in South Hadley to take a nap.
This morning, a cup of coffee and a piece of orange almond cake at the Thirsty Mind while writing a piece for the Vassar Quarterly helped pick me up. Twice around the lake and a walk through campus with Maddie and a friend saved me from following up on my notion that I should at least go to the pool.
Wednesday, March 18, 2015
How not to start your day
How would you like to start your day?
(a) With a smile
(b) With a gulp of something awful, then a grimace and a groan.
You probably answered (a). I would chose that too, and on special occasions I do, forgoing (b), which is caused by mixing 5 tablets of Exjade in water, doing the gulp thing, and then, to do it right and thereby prolong the distasteful task, adding more water to absorb the little leftover pieces and drinking some more.
Then, wait 30 minutes while it does its work of removing excess iron from the body through a process called chelating in which it attaches to the iron and carries it out.
During which time, drink coffee (the wonder drug!) to mask the nausea.
I bring this up because although I no longer report my counts, which thankfully is very yesterday since most everything is where it is supposed to be, I noticed at my appointment Thursday that my ferritin had gone up, while the point of this battle is to make it go down.
It was 1832 (normal is 10-170) compared to about 1400 three months ago.
Melissa said that by taking the Exjade and getting a therapeutic phlebotomy every two months, I am doing all the right things. The number is influenced by other factors, such as graft vs. host disease, and we don't want to do any more for that because it would mean taking more prednisone.
All is well, though.
The timer just went off and I can eat my toast.
(a) With a smile
(b) With a gulp of something awful, then a grimace and a groan.
You probably answered (a). I would chose that too, and on special occasions I do, forgoing (b), which is caused by mixing 5 tablets of Exjade in water, doing the gulp thing, and then, to do it right and thereby prolong the distasteful task, adding more water to absorb the little leftover pieces and drinking some more.
Then, wait 30 minutes while it does its work of removing excess iron from the body through a process called chelating in which it attaches to the iron and carries it out.
During which time, drink coffee (the wonder drug!) to mask the nausea.
I bring this up because although I no longer report my counts, which thankfully is very yesterday since most everything is where it is supposed to be, I noticed at my appointment Thursday that my ferritin had gone up, while the point of this battle is to make it go down.
It was 1832 (normal is 10-170) compared to about 1400 three months ago.
Melissa said that by taking the Exjade and getting a therapeutic phlebotomy every two months, I am doing all the right things. The number is influenced by other factors, such as graft vs. host disease, and we don't want to do any more for that because it would mean taking more prednisone.
All is well, though.
The timer just went off and I can eat my toast.
Friday, December 19, 2014
Ferritn fight going well
Sometimes I find a reason to skip a day or to put it off until later in the day. For example if I have to leave the house early and don't have the time to wait for 30 minutes to eat after I dissolve the five pills in 7 ounces of water. After chugging it down I get a burst of instant nausea and heartburn. A nice way to start your day.
But then I remind myself why I need to keep taking this very expensive drug (luckily covered by insurance) whose trade name is deferasirox. I must keep chipping away at my high ferritin level so that my liver can have relief from all that stored iron resulting from so many blood transfusions.
For motivation, I need only look at the list of the problems that according the Iron Disorders Institute are caused by iron overload: Excess iron in vital organs, even in mild cases of iron overload, increases the risk for liver disease (cirrhosis, cancer), heart attack or heart failure, diabetes mellitus, osteoarthritis, osteoporosis, metabolic syndrome, hypothyroidism, hypogonadism, numerous symptoms and in some cases premature death. Iron mismanagement resulting in overload can accelerate such neurodegenerative diseases as Alzheimer’s, early-onset Parkinson’s, Huntington’s, epilepsy and multiple sclerosis.
The results of my latest ferritin test were still pending on my last visit to Dana-Farber. So Melissa emailed them to me this week, and I am happy to report that the level is down to 1601.
This might not seem great considering that normal ferritin range for women is 11 to 307 (nanograms per milliliter). I forget what mine was when I started this process, but I know it was around 6,000 or even 7,000. When it goes below 1,000 I will really see the light at the end of the tunnel.
I wish that I could share this with PJ. It was one of the things that we compared. She was the one who suggested addressing it additionally with therapeutic phlebotomy, something else that I like to put off until I remind myself of the benefits. It has been working out for me to get this done at the Kraft Blood Donor Center at Brigham and Women's when I have another appointment and am staying overnight. But I am overdue and need to schlep over to Baystate to get it done again asap.
PJ and I had our own little support group for these things. You can't expect most people to jump for joy when you tell them your ferritin is down. Only someone experiencing this battle can really get it. But I am sure my health care team can. I look forward to the day when I can toss my leftover pills in the trash. That is like throwing away gold, but I imagine the manufacturer, Novartis, does not want them returned.
Maybe I can do it ceremoniously at Dana-Farber. That would feel good.
Wednesday, April 23, 2014
Wondering about soaring drug costs
The problem of soaring drug costs always comes with the question: Does research and development really cost that much?
Many of us are lucky to have insurance that makes our medicine affordable. We don't have to choose between medicine and food or rent.
I don't take as many pills as I did in the early days post-transplant, but I still take a ton: almost 20 a day.
I thought about this when I was scanning the drug summary sent to me by my prescription plan, which thankfully covers most of my costs. Down the list I go. A couple cost under $10, one costs $251.94, and another $665.82.
Then I get to the dreaded Exjade, the five pills daily dissolved in water and chugged on an empty stomach, resulting in 30 minutes of nausea while it does its job of scurrying down to my liver, bonding with the harmful ferritin resulting from iron overload and sending it out of my system.
The true cost: $6,779.68 for a 30-day supply.
I said to myself, "You have got to be kidding me!"
I have been taking it for a long time, but I guess I didn't look at the price.
I dropped one on the floor the other day and threw it out, but I guess I should have thought twice.
When I think of skipping a day, I usually make myself take it by focusing on the good it is doing me. This iron overload can end up making you really sick. My ability to afford it is another reason to appreciate it even more.
Many of us are lucky to have insurance that makes our medicine affordable. We don't have to choose between medicine and food or rent.
I don't take as many pills as I did in the early days post-transplant, but I still take a ton: almost 20 a day.
I thought about this when I was scanning the drug summary sent to me by my prescription plan, which thankfully covers most of my costs. Down the list I go. A couple cost under $10, one costs $251.94, and another $665.82.
Then I get to the dreaded Exjade, the five pills daily dissolved in water and chugged on an empty stomach, resulting in 30 minutes of nausea while it does its job of scurrying down to my liver, bonding with the harmful ferritin resulting from iron overload and sending it out of my system.
The true cost: $6,779.68 for a 30-day supply.
I said to myself, "You have got to be kidding me!"
I have been taking it for a long time, but I guess I didn't look at the price.
I dropped one on the floor the other day and threw it out, but I guess I should have thought twice.
When I think of skipping a day, I usually make myself take it by focusing on the good it is doing me. This iron overload can end up making you really sick. My ability to afford it is another reason to appreciate it even more.
Tuesday, October 8, 2013
Tongue tale, cont.
I made out well at Dana-Farber yesterday, starting with my appointment with Dr. Goguen, the one that had made me most concerned.
She said the spot on my tongue was much smaller. She said these words which are welcome to any patient with a problem: "I am not impressed." At our previous appointment, she had said she might have to biopsy my tongue, and I was relieved that that didn't happen.
Next it was on to the Kraft Blood Donor Center for therapeutic phlebotomy to reduce the amount of ferritin in my system. I passed the time talking to the phlebotomist, who liked my Spanish leather boots so much that she bent down under my feet to see if she could find the maker's name. I sat next to a woman who has been donating platelets on and off for 15 years. Very admirable.
Then I ate lunch with my friend Wendy, who had driven me to Boston. It was fun having her company, and also important for me to not drive back after getting a pint of blood taken out.
My regular checkup was fine. I have a normal white blood count and hematocrit. Platelets were 127. The normal range is 155-410, but being over 100 is good for me.
My ferritin – the protein that stores iron in your body so it can use it later – is still outrageously high at 4582; normal is 10-170. Ferritin is stored in many types of cells, including liver cells, where an excess amount can cause serious damage.
I am going to have to go back on Exjade, five pills dissolved in water on an empty stomach, and no food for 30 minutes after.
I have been off Exjade for quite a while because it makes me feel so sick. A friend who also had multiple bone marrow transplants, and countless transfusions, said she plowed through with taking eight months of Exjade and now her levels are normal.
I tricked my senses this morning after taking Exjade by making strong coffee and deeply inhaling the smell. I guess that will be my morning routine for a while.
She said the spot on my tongue was much smaller. She said these words which are welcome to any patient with a problem: "I am not impressed." At our previous appointment, she had said she might have to biopsy my tongue, and I was relieved that that didn't happen.
Next it was on to the Kraft Blood Donor Center for therapeutic phlebotomy to reduce the amount of ferritin in my system. I passed the time talking to the phlebotomist, who liked my Spanish leather boots so much that she bent down under my feet to see if she could find the maker's name. I sat next to a woman who has been donating platelets on and off for 15 years. Very admirable.
Then I ate lunch with my friend Wendy, who had driven me to Boston. It was fun having her company, and also important for me to not drive back after getting a pint of blood taken out.
My regular checkup was fine. I have a normal white blood count and hematocrit. Platelets were 127. The normal range is 155-410, but being over 100 is good for me.
My ferritin – the protein that stores iron in your body so it can use it later – is still outrageously high at 4582; normal is 10-170. Ferritin is stored in many types of cells, including liver cells, where an excess amount can cause serious damage.
I am going to have to go back on Exjade, five pills dissolved in water on an empty stomach, and no food for 30 minutes after.
I have been off Exjade for quite a while because it makes me feel so sick. A friend who also had multiple bone marrow transplants, and countless transfusions, said she plowed through with taking eight months of Exjade and now her levels are normal.
I tricked my senses this morning after taking Exjade by making strong coffee and deeply inhaling the smell. I guess that will be my morning routine for a while.
Monday, August 19, 2013
The trouble with my tongue
It turns out that the problem with my tongue is thrush, a yeast infection brought on by all the antibiotics I have taken recently, both to treat my pneumonia and given routinely with the kidney surgery.
Dr. Goguen prescribed lozenges and a mouthwash. If it isn't gone in a month she will have to do a biopsy, but she seemed pretty certain that won't be necessary. This is a big relief because the surgeon who removed my tooth on Thursday wrote down that he saw signs of dysplasia: abnormal cells. Naturally that made me suspect that I might need more surgery on my tongue.
After that I went across the street to the Kraft Blood Donor Center for my "therapeutic phlebotomy," withdrawal of a bag of blood to help lower the amount of excess ferritin being stored in my liver due to all the transfusions I had. I am trying to schedule this once a month instead of taking a daily dose of the nauseating Exjade, which also lowers ferritin over a long time period.
So far, so good. The only problem left to address was the painful sores on my lips. Katie, who had driven me to Boston, went with me back to Dana-Farber so that Dr. Alyea and Melissa could take a look. The viral culture came back negative, so it is a mystery. I am going to try increasing my dosage of Valtrex, the anti-viral I already take. I tried this a couple of weeks ago to no avail, but they want me to try it again. In the meantime Melissa is scheduling me with one of their dentists who deals with this kind of thing.
So, another specialist. Sigh.
Meanwhile, Dr. Alyea said he might consider a topical steroid if it comes to that.
Back home, I could barely eat my dinner...again. I open my mouth wide enough to get food in without touching my lips, and then I nibble with my front teeth like a little rabbit. Last week's extraction makes it difficult to chew on the right side, which is sore, and the left side is already missing three teeth.
In a mother-child role reversal, Katie said I had to eat something. She pulled the applesauce out of the refrigerator, brought a bowl and spoon over and asked me how much. Washing the applesauce down with ice cream, I am feeling better now.
Dr. Goguen prescribed lozenges and a mouthwash. If it isn't gone in a month she will have to do a biopsy, but she seemed pretty certain that won't be necessary. This is a big relief because the surgeon who removed my tooth on Thursday wrote down that he saw signs of dysplasia: abnormal cells. Naturally that made me suspect that I might need more surgery on my tongue.
After that I went across the street to the Kraft Blood Donor Center for my "therapeutic phlebotomy," withdrawal of a bag of blood to help lower the amount of excess ferritin being stored in my liver due to all the transfusions I had. I am trying to schedule this once a month instead of taking a daily dose of the nauseating Exjade, which also lowers ferritin over a long time period.
So far, so good. The only problem left to address was the painful sores on my lips. Katie, who had driven me to Boston, went with me back to Dana-Farber so that Dr. Alyea and Melissa could take a look. The viral culture came back negative, so it is a mystery. I am going to try increasing my dosage of Valtrex, the anti-viral I already take. I tried this a couple of weeks ago to no avail, but they want me to try it again. In the meantime Melissa is scheduling me with one of their dentists who deals with this kind of thing.
So, another specialist. Sigh.
Meanwhile, Dr. Alyea said he might consider a topical steroid if it comes to that.
Back home, I could barely eat my dinner...again. I open my mouth wide enough to get food in without touching my lips, and then I nibble with my front teeth like a little rabbit. Last week's extraction makes it difficult to chew on the right side, which is sore, and the left side is already missing three teeth.
In a mother-child role reversal, Katie said I had to eat something. She pulled the applesauce out of the refrigerator, brought a bowl and spoon over and asked me how much. Washing the applesauce down with ice cream, I am feeling better now.
Tuesday, February 5, 2013
Testing, testing
I like to group my appointments in Boston in clusters so that I can minimize driving back and forth, but when it comes down to it, it can amount to a tiring day or two.
I have one appointment on Wednesday and four on Thursday, like so:
On Wednesday I go to Mass. Eye and Ear to see the specialist who has been watching out for Graft vs. Host of the eye. When I started seeing him, my eyes felt scratchy, but with twice daily drops of Restatis, they feel fine now, so I think I'm OK. Sometime that day I hope to see Katie and check out her new digs, which I haven't seen yet.
Thursday is the busy day. I start out in nuclear medicine with a two-hour "gastric emptying and motility scan" to try to find out why I am still throwing up. I'm not sure what they do, but I have the impression I might come out glowing.
I thought I was done with throwing up, but unfortunately it has come back at the most inappropriate times. Yesterday I went to a tennis clinic, ran into the bathroom to throw up, and then returned and finished the clinic. Melissa said the endoscopy ruled out anything serious, and this could be something that can be fixed with a pill. Also, she said that after transplant this sometimes happens to people like me who immune systems have been manipulated.
I will have to tell Dr. Alyea, a fellow tennis player, that this is harming my tennis game. I play tentatively because I am afraid I might jar my insides. I have even been demoted from the more competitive Friday 9 a.m. tennis round robin to the easier 10:30 one. In the overall scheme of things, this is no big deal, but as a competitive person, it bothers me. My father would understand. I have a match coming up on Sunday and hope to find a solution before that.
Next up on Thursday is my check-up with Melissa, followed by "therapeutic phlebotomy" in the blood donor center. The plan is to take out some blood to lower the amount of ferritin – stored iron – in my liver, a substitute for taking the nauseating Exjade, which adds to my throw-up problems. The blood will be donated to the trash.
After that I go to another location to see my dermatologist, who has scheduled another PDT, or photo-dynamic therapy, to burn the top layer of skin off my face in order to get rid of the little pre-cancerous spots that keep popping up. This is a fun procedure where they put a chemical on your face, wrap you up like a mummy and have you sit there for an hour before putting you under a burning light.
On Saturday I will go to Meghan's wedding shower looking like a lobster. If anyone asks, I can tell them I took a quick trip to Puerto Rico.
I have one appointment on Wednesday and four on Thursday, like so:
On Wednesday I go to Mass. Eye and Ear to see the specialist who has been watching out for Graft vs. Host of the eye. When I started seeing him, my eyes felt scratchy, but with twice daily drops of Restatis, they feel fine now, so I think I'm OK. Sometime that day I hope to see Katie and check out her new digs, which I haven't seen yet.
Thursday is the busy day. I start out in nuclear medicine with a two-hour "gastric emptying and motility scan" to try to find out why I am still throwing up. I'm not sure what they do, but I have the impression I might come out glowing.
I thought I was done with throwing up, but unfortunately it has come back at the most inappropriate times. Yesterday I went to a tennis clinic, ran into the bathroom to throw up, and then returned and finished the clinic. Melissa said the endoscopy ruled out anything serious, and this could be something that can be fixed with a pill. Also, she said that after transplant this sometimes happens to people like me who immune systems have been manipulated.
I will have to tell Dr. Alyea, a fellow tennis player, that this is harming my tennis game. I play tentatively because I am afraid I might jar my insides. I have even been demoted from the more competitive Friday 9 a.m. tennis round robin to the easier 10:30 one. In the overall scheme of things, this is no big deal, but as a competitive person, it bothers me. My father would understand. I have a match coming up on Sunday and hope to find a solution before that.
Next up on Thursday is my check-up with Melissa, followed by "therapeutic phlebotomy" in the blood donor center. The plan is to take out some blood to lower the amount of ferritin – stored iron – in my liver, a substitute for taking the nauseating Exjade, which adds to my throw-up problems. The blood will be donated to the trash.
After that I go to another location to see my dermatologist, who has scheduled another PDT, or photo-dynamic therapy, to burn the top layer of skin off my face in order to get rid of the little pre-cancerous spots that keep popping up. This is a fun procedure where they put a chemical on your face, wrap you up like a mummy and have you sit there for an hour before putting you under a burning light.
On Saturday I will go to Meghan's wedding shower looking like a lobster. If anyone asks, I can tell them I took a quick trip to Puerto Rico.
Monday, January 21, 2013
Update
This is a short post just to say I'm feeling better although still not quite myself.
I stopped the Exjade and increased my prednisone – 20 mg. for two days, 10 mg. for three days and then the day after tomorrow, back to 5 mg.
It's amazing what a little tinkering can do.
I think I'll try to bring the oil can and go to yoga tonight.
I haven't throw up since Wednesday. Something to be thankful for!
I lost some weight again because I wasn't eating much, but I'm eating more again: a cheeseburger with potato skins, an egg with a bagel and blueberry pancakes. Yum.
Just watched the inauguration. Very inspiring and fun to see the who's who of politics.
I stopped the Exjade and increased my prednisone – 20 mg. for two days, 10 mg. for three days and then the day after tomorrow, back to 5 mg.
It's amazing what a little tinkering can do.
I think I'll try to bring the oil can and go to yoga tonight.
I haven't throw up since Wednesday. Something to be thankful for!
I lost some weight again because I wasn't eating much, but I'm eating more again: a cheeseburger with potato skins, an egg with a bagel and blueberry pancakes. Yum.
Just watched the inauguration. Very inspiring and fun to see the who's who of politics.
Friday, January 18, 2013
Adventures in Boston
I am not talking about the kinds of adventures I had in Europe, but rather about going to Dana-Farber yesterday and to Brigham and Women's hospital today.
There is nothing seriously wrong with me. It's just that I have been haunted by the throwing up sickness for about a week. I called Melissa and she said it did not sound like flu because I have no other symptoms. But I could feel that I was getting dehydrated, and she said to go see her, have some blood work done and get some fluids.
Ativan helps, but I couldn't take it while driving. Joe had an important meeting or he would have taken me. Plus, he knows what it's like for me to throw up in his car...into a plastic bag with a hole in the bottom, no less. I wouldn't have asked anyone else, so I set out yesterday with my plastic bag and some saltines.
I made it in OK and was relieved to see that my labs are fine.
After getting that out of the way, I told Melissa that my reason for coming was really to show her my new Spanish boots. She said that she had noticed them right away, so I was very gratified...although still nauseous.
First in the line of suspects is the Exjade. I didn't take it during my trip and felt just fine. As soon as I took it at home, up it came. I took a break for a couple of days, downed the five pills dissolved in water again, and got sick again. She said to just stop taking it. Free at last!
Since my hematocrit continues to be normal, on my next visit I will schedule a "therapeutic phlebotomy" appointment as another way to get rid of the excess ferritin that accumulated in my liver after multiple blood transfusions.
Dr. Alyea came over while I was in the infusion room and asked if I had watched any of the Australian Open. When he talks tennis I know that I am not making medical history. He was accompanied by another doctor and introduced me as an excellent tennis player. I told him that wouldn't have described me during the past week, and he said we'd get my insides straightened out so I can get back on my game.
He said I should take a booster of increased prednisone for about five days because when you're on a low dose like mine – 5 mgs. a day – your body can forget to produce enough on its own (or something like that) and a booster would help me feel better.
Meanwhile, on to the award for the most annoying nurse of the day:
When she was reviewing my medications before the endoscopy today, she asked why I take the drug Kayexalate. I said I take it because my potassium was high, but with a once-a-week dose it is fine.
"Are you in kidney failure?" she asked. "That's what high potassium means," she said, or something like that.
I told her that I was in kidney failure three-and-a-half years ago but that I am fine now.
She eyed me suspiciously, as though I had no clue whether I was in kidney failure or not.
After the procedure when she was removing my IV, she started in on me again.
"Have you ever seen a nephrologist?" she asked. Since I happen to have seen a nephrologist (a doctor who specializes in kidney care) I knew what that meant, although when I first heard I was seeing one of those, I thought they said I was seeing a necrologist in preparation for my death.
I repeated that my kidneys are FINE.
With that she finished up with my discharge instructions. And wearing the Massachusetts Academy of Ballet sweatpants that I had put on earlier in the morning, I pirouetted out of the hospital.
Thursday, December 13, 2012
Laments of a pill-popper
One down, 21 to go.
When I learned that my insurance no longer covers magnesium, I thought it was a good time to ask Melissa if I still needed to take it. She said I could stop.
My 21 pills does not include the once-weekly solution of Kayexalate, the grainy stuff I dissolve in water to keep my once-high potassium within normal limits. It's not as nauseating as the Exjade I take to lower my ferritin, but it's pretty gross.
Organizing my meds for my trip to Spain, and making sure I have enough plus extras, is a bit of a task.
If I read all the side effects of all my pills, I would probably freak out.
I take several drugs as preventatives because the prednisone inhibits my immune system.
When I saw the infectious disease specialist Dr. Marty on Monday, I asked him, "When can I stop taking the Valtrex (an anti-viral)"?
Answer: "When you stop taking prednisone."
I already knew what he would say because I have asked before, yet I couldn't help but ask again. Dr. Marty just smiled.
I suppose I would get the same answer to the question, "When can I stop taking the Bactrim (an anti-bacterial used to prevent pneumonia)"?
And "When will little things stop popping up on my hands and face (and tongue) that sometimes turn into skin cancers?"
OK, so, the big question: "When can I stop taking prednisone?"
Answer: When my liver function returns to normal.
Melissa said on Monday that although my numbers were a little lower (a good direction in this instance), they were not low enough to change my prednisone dose.
It's only five mg. a day, down from a high of 20 when I was all puffed up, but still, you can see the effect it has on everything else, including weakening the muscles in my legs.
I shouldn't complain. I am alive and well and going to Spain on Sunday, toting my pills minus one.
When I learned that my insurance no longer covers magnesium, I thought it was a good time to ask Melissa if I still needed to take it. She said I could stop.
My 21 pills does not include the once-weekly solution of Kayexalate, the grainy stuff I dissolve in water to keep my once-high potassium within normal limits. It's not as nauseating as the Exjade I take to lower my ferritin, but it's pretty gross.
Organizing my meds for my trip to Spain, and making sure I have enough plus extras, is a bit of a task.
If I read all the side effects of all my pills, I would probably freak out.
I take several drugs as preventatives because the prednisone inhibits my immune system.
When I saw the infectious disease specialist Dr. Marty on Monday, I asked him, "When can I stop taking the Valtrex (an anti-viral)"?
Answer: "When you stop taking prednisone."
I already knew what he would say because I have asked before, yet I couldn't help but ask again. Dr. Marty just smiled.
I suppose I would get the same answer to the question, "When can I stop taking the Bactrim (an anti-bacterial used to prevent pneumonia)"?
And "When will little things stop popping up on my hands and face (and tongue) that sometimes turn into skin cancers?"
OK, so, the big question: "When can I stop taking prednisone?"
Answer: When my liver function returns to normal.
Melissa said on Monday that although my numbers were a little lower (a good direction in this instance), they were not low enough to change my prednisone dose.
It's only five mg. a day, down from a high of 20 when I was all puffed up, but still, you can see the effect it has on everything else, including weakening the muscles in my legs.
I shouldn't complain. I am alive and well and going to Spain on Sunday, toting my pills minus one.
Tuesday, December 11, 2012
Counts are good
I read a very hopeful story yesterday about a young girl with leukemia, near death after chemotherapy had failed to keep her in remission, who received an experimental treatment that gave her a new chance at life.
Last April, when Emma Whitehead was six, doctors at Children's Hospital in Philadelphia gave her a disabled form of the virus that causes AIDS in an attempt to reprogram her immune system. The experiment worked, and seven months later she remains cancer free.
The New York Times ran a beautiful photo of Emma and her mother smiling together. It's always encouraging to read about promising new cancer treatments, and it caught my eye especially because it was about leukemia.
Coincidentally, I read the story while waiting to be called in for my two-month checkup at Dana-Farber. I had driven to Boston that morning through fog and pouring rain, fueled by glazed Munchkins and coffee.
My counts were good – about the same as last time – except that my platelets went down a little, to 86, out of a normal range of 155-410. But they have bounced around in the same vicinity for a long time, and my doctors remain unconcerned.
My hematocrit – 35.7 – was normal for the third time in a row, qualifying me for getting a pint of blood taken out to lower my ferritin. In an odd way, I was looking forward to it. Anything to take even a little less of the nauseating Exjade, which is the main way of lowering ferritin.
Melissa was about to schedule the "blood-letting" but then said I should wait until the next time because the procedure would make me a little anemic, which would not be good right before I go away.
I'm leaving on Sunday.
Yikes!
Last April, when Emma Whitehead was six, doctors at Children's Hospital in Philadelphia gave her a disabled form of the virus that causes AIDS in an attempt to reprogram her immune system. The experiment worked, and seven months later she remains cancer free.
The New York Times ran a beautiful photo of Emma and her mother smiling together. It's always encouraging to read about promising new cancer treatments, and it caught my eye especially because it was about leukemia.
Coincidentally, I read the story while waiting to be called in for my two-month checkup at Dana-Farber. I had driven to Boston that morning through fog and pouring rain, fueled by glazed Munchkins and coffee.
My counts were good – about the same as last time – except that my platelets went down a little, to 86, out of a normal range of 155-410. But they have bounced around in the same vicinity for a long time, and my doctors remain unconcerned.
My hematocrit – 35.7 – was normal for the third time in a row, qualifying me for getting a pint of blood taken out to lower my ferritin. In an odd way, I was looking forward to it. Anything to take even a little less of the nauseating Exjade, which is the main way of lowering ferritin.
Melissa was about to schedule the "blood-letting" but then said I should wait until the next time because the procedure would make me a little anemic, which would not be good right before I go away.
I'm leaving on Sunday.
Yikes!
Thursday, October 18, 2012
Upstairs downstairs
Q: Why do wild turkeys cross the road?
A: They are just strolling around Boston, looking for peanut shells, trash and whatever else they can find to eat.
I began to wonder about this Monday when I was driving to my appointment at Dana-Farber and four turkeys crossed in front of me, right in downtown Boston, causing me to stop short in traffic. The first one saw me coming and turned around, but three were oblivious and kept going, so the first one joined them.
Luckily the driver behind me stopped soon enough that he did not rear-end me. The turkeys took their time getting to the other side, and, puzzled at the sighting, I took the next turn to Dana-Farber. This naturally took my mind off the usual check-up anxiety.
I googled "why do turkeys live in downtown Boston?" and sure enough there was a story in Boston.com about turkeys having gotten used to residential and urban living in the past few years. Who knew?
Anyway, I got to Dana-Farber without hitting any turkeys.
After getting my blood drawn, I went to the 11th floor and got my tongue checked by the doctor who had removed a small scoop of it. She gave my mouth a clean bill of health.
I went down to the eighth floor for my appointment with Melissa, who was running late, so it was back to the 11th floor for my flu shot, then back down to the eighth. I was getting used to the elevators.
Everything was good. First of all, I gained seven pounds in a month. If you're just stopping by the blog, I need to say that is a good thing. People are not usually happy about gaining weight, but in my case that was the goal since I had lost about 15 pounds in four months.
My hematocrit was normal (35.6) for the first time in ages, earning me the opportunity, if it stays normal, to have a "blood letting" (sans leaches) next time to lower my ferritin. I'm not sure what the technical term is. I take a nauseating medicine called Exjade every morning, and the level – which is high from all the transfusions I got – has gone down some, but it is still way above normal.
I was happy to see that my platelets had inched up to 95 (normal is 155-410), which is still low but high for me.
In my body's topsy turvy way, my potassium level has been high; many people eat potassium-rich foods and drink potassium-rich beverages so they can get enough potassium. I take another potion to lower it and keep in with normal range. It was a little high, possibly due to too many tomatoes over the summer and fall.
Due to still-elevated though steady liver enzymes, I need to stay on prednisone. It's a low dose, 5 mgs a day, but still, it would be nice to get off.
I stayed over at Diane and David's so I could see my dermatologist, Dr. Lin, in the morning. She said my skin had cleared up well after the PDT (face fry) and suggested we keep ahead of the game and do another one in six months before little scaly things appear again.
Lucky me!
A: They are just strolling around Boston, looking for peanut shells, trash and whatever else they can find to eat.
I began to wonder about this Monday when I was driving to my appointment at Dana-Farber and four turkeys crossed in front of me, right in downtown Boston, causing me to stop short in traffic. The first one saw me coming and turned around, but three were oblivious and kept going, so the first one joined them.
Luckily the driver behind me stopped soon enough that he did not rear-end me. The turkeys took their time getting to the other side, and, puzzled at the sighting, I took the next turn to Dana-Farber. This naturally took my mind off the usual check-up anxiety.
I googled "why do turkeys live in downtown Boston?" and sure enough there was a story in Boston.com about turkeys having gotten used to residential and urban living in the past few years. Who knew?
Anyway, I got to Dana-Farber without hitting any turkeys.
After getting my blood drawn, I went to the 11th floor and got my tongue checked by the doctor who had removed a small scoop of it. She gave my mouth a clean bill of health.
I went down to the eighth floor for my appointment with Melissa, who was running late, so it was back to the 11th floor for my flu shot, then back down to the eighth. I was getting used to the elevators.
Everything was good. First of all, I gained seven pounds in a month. If you're just stopping by the blog, I need to say that is a good thing. People are not usually happy about gaining weight, but in my case that was the goal since I had lost about 15 pounds in four months.
My hematocrit was normal (35.6) for the first time in ages, earning me the opportunity, if it stays normal, to have a "blood letting" (sans leaches) next time to lower my ferritin. I'm not sure what the technical term is. I take a nauseating medicine called Exjade every morning, and the level – which is high from all the transfusions I got – has gone down some, but it is still way above normal.
I was happy to see that my platelets had inched up to 95 (normal is 155-410), which is still low but high for me.
In my body's topsy turvy way, my potassium level has been high; many people eat potassium-rich foods and drink potassium-rich beverages so they can get enough potassium. I take another potion to lower it and keep in with normal range. It was a little high, possibly due to too many tomatoes over the summer and fall.
Due to still-elevated though steady liver enzymes, I need to stay on prednisone. It's a low dose, 5 mgs a day, but still, it would be nice to get off.
I stayed over at Diane and David's so I could see my dermatologist, Dr. Lin, in the morning. She said my skin had cleared up well after the PDT (face fry) and suggested we keep ahead of the game and do another one in six months before little scaly things appear again.
Lucky me!
Sunday, November 13, 2011
Back to Exjade (sigh)
My daily dose of Exjade takes my mind totally off my worries, in a not very positive way.
I took it today after a break of several months. You dissolve five pills in water, drink it on an empty stomach, and wait 30 minutes to eat. Normally if you take a bitter pill, you can pop something in your mouth to take the taste away. But with Exjade, you are left feeling like you are going to vomit while knowing you won't get the relief of doing so. You can just mutter to yourself, distract yourself, clean the kitchen, tap your foot, complain to anyone who is around, whatever, until your time is up.
This is nothing compared to the nausea after chemotherapy, but still, it's not a great way to start the day.
Exjade decreases your level of ferritin, a protein that stores iron in your body. People like me who have had multiple blood transfusions end up with excess ferritin; the consequences can be really really bad, including such things as cirrhosis of the liver and increased risk of liver cancer, heart failure and abnormal rhythms, and decreased insulin leading to diabetes.
A normal ferritin range for women is 12-150 nanograms per milliter. After I finished getting transfusions, my level was about 10,000. Due to blood draws before check-ups and a period of Exjade use, my level is down to about 7,000. Quite a ways to go.
One means of treatment is a good old-fashioned blood-letting, minus the leaches. Patients undergo "therapeutic phlebotomy" during which a prescribed amount of blood is removed, usually a couple of times a week.
My doctors favor the use of Exjade, which binds to iron and removes it from the bloodstream. It takes months and months to work.
When Melissa told me at my check-up last Monday that it was time to restart, I took the bottle out of the cabinet and placed it on my counter. It took days for me to actually see it, meaning I had selective vision that made me forget until after I had already eaten. Then the day passed, and before I knew it, I had procrastinated yet another day.
Today I decided I meant business, and after re-reading about the potentially devastating effects of high ferritin, I am determined to keep up with it. Even if it means starting my day with a miserable half-hour.
I took it today after a break of several months. You dissolve five pills in water, drink it on an empty stomach, and wait 30 minutes to eat. Normally if you take a bitter pill, you can pop something in your mouth to take the taste away. But with Exjade, you are left feeling like you are going to vomit while knowing you won't get the relief of doing so. You can just mutter to yourself, distract yourself, clean the kitchen, tap your foot, complain to anyone who is around, whatever, until your time is up.
This is nothing compared to the nausea after chemotherapy, but still, it's not a great way to start the day.
Exjade decreases your level of ferritin, a protein that stores iron in your body. People like me who have had multiple blood transfusions end up with excess ferritin; the consequences can be really really bad, including such things as cirrhosis of the liver and increased risk of liver cancer, heart failure and abnormal rhythms, and decreased insulin leading to diabetes.
A normal ferritin range for women is 12-150 nanograms per milliter. After I finished getting transfusions, my level was about 10,000. Due to blood draws before check-ups and a period of Exjade use, my level is down to about 7,000. Quite a ways to go.
One means of treatment is a good old-fashioned blood-letting, minus the leaches. Patients undergo "therapeutic phlebotomy" during which a prescribed amount of blood is removed, usually a couple of times a week.
My doctors favor the use of Exjade, which binds to iron and removes it from the bloodstream. It takes months and months to work.
When Melissa told me at my check-up last Monday that it was time to restart, I took the bottle out of the cabinet and placed it on my counter. It took days for me to actually see it, meaning I had selective vision that made me forget until after I had already eaten. Then the day passed, and before I knew it, I had procrastinated yet another day.
Today I decided I meant business, and after re-reading about the potentially devastating effects of high ferritin, I am determined to keep up with it. Even if it means starting my day with a miserable half-hour.
Saturday, July 23, 2011
Exjade and other excitement
Inspired by PJ's post that seven months of Exjade had finally lowered her ferritin levels to normal, I asked Melissa at my last appointment if I should restart.
The stuff had upset my stomach, and they had given me quite a long break, but she said yes, I should restart. I placed the bottle on the counter and eyed it for a couple of days, and earlier this week I decided to give it a try. You dissolve five tablets in water, chug it on an empty stomach, and wait 30 minutes to eat.
It doesn't taste as bad as Kayexalate, the powder I dissolve to lower my potassium level. That stuff has the grainy consistency of sand mixed in water. But it doesn't make me queasy the way Exjade does.
Still, as PJ and I discussed, it's something I can do for my liver, where ferritin is stored. I can't do anything about the GVHD in my liver (except continue taking my prednisone) but I do have control over this.
The other day after I drank my first glass of Exjade, I immediately felt like I was going to throw up, and I lay on the couch talking to PJ until I felt better.
The same day, like a mad dog or an Englishman, I played two sets of tennis under the (hot hot hot) midday sun. I didn't plan it; I am playing with a group of women who play from 11 to 12:30, and I didn't want to bag out. It was actually fine for most of the time, except near the end we were all tired hitting terrible shots and confessed to thinking the same thing: "Can we stop now?"
We ate some watermelon, drank a lot of water and went on our way. There was no long-lasting effect.
Respectful of the heat wave, I haven't tried running. I even skipped a dog walk one day. Yesterday, however, I did walk Maddie in the morning, around 9:30. I thought it was early enough, but I came home dripping with sweat and not feeling well.
This morning it took a while for the sun to come out, so under cover of clouds, I took her again around the same time. It was much better, so I tried jogging a short distance. She's mostly good about it, but it's hard to get far with her on the leash, what with sniffing and needing to say hello to people.
I don't let her to go over to everyone, but she seemed to really want to stop to be petted by a nice older woman who had just walked. She said she lives at a nearby retirement village and goes once around each lake on most days.
She was very worried about the fact that there are lilies on the lower lake, a sign, she said, that there is something wrong with the water. (She was going to ask somebody official about this.)
Plus, although the nasty goose is still there, she said the ducks have moved to the upper lake. I can't say I have noticed, but when I walk there I'm not looking that closely for runaway ducks.
I kind of lost track when she was telling me a story about watching the mother feed the babies, but still, I enjoyed our 10 minutes together. You don't have these little conversations if you are dogless and concentrating on running.
The stuff had upset my stomach, and they had given me quite a long break, but she said yes, I should restart. I placed the bottle on the counter and eyed it for a couple of days, and earlier this week I decided to give it a try. You dissolve five tablets in water, chug it on an empty stomach, and wait 30 minutes to eat.
It doesn't taste as bad as Kayexalate, the powder I dissolve to lower my potassium level. That stuff has the grainy consistency of sand mixed in water. But it doesn't make me queasy the way Exjade does.
Still, as PJ and I discussed, it's something I can do for my liver, where ferritin is stored. I can't do anything about the GVHD in my liver (except continue taking my prednisone) but I do have control over this.
The other day after I drank my first glass of Exjade, I immediately felt like I was going to throw up, and I lay on the couch talking to PJ until I felt better.
The same day, like a mad dog or an Englishman, I played two sets of tennis under the (hot hot hot) midday sun. I didn't plan it; I am playing with a group of women who play from 11 to 12:30, and I didn't want to bag out. It was actually fine for most of the time, except near the end we were all tired hitting terrible shots and confessed to thinking the same thing: "Can we stop now?"
We ate some watermelon, drank a lot of water and went on our way. There was no long-lasting effect.
Respectful of the heat wave, I haven't tried running. I even skipped a dog walk one day. Yesterday, however, I did walk Maddie in the morning, around 9:30. I thought it was early enough, but I came home dripping with sweat and not feeling well.
This morning it took a while for the sun to come out, so under cover of clouds, I took her again around the same time. It was much better, so I tried jogging a short distance. She's mostly good about it, but it's hard to get far with her on the leash, what with sniffing and needing to say hello to people.
I don't let her to go over to everyone, but she seemed to really want to stop to be petted by a nice older woman who had just walked. She said she lives at a nearby retirement village and goes once around each lake on most days.
She was very worried about the fact that there are lilies on the lower lake, a sign, she said, that there is something wrong with the water. (She was going to ask somebody official about this.)
Plus, although the nasty goose is still there, she said the ducks have moved to the upper lake. I can't say I have noticed, but when I walk there I'm not looking that closely for runaway ducks.
I kind of lost track when she was telling me a story about watching the mother feed the babies, but still, I enjoyed our 10 minutes together. You don't have these little conversations if you are dogless and concentrating on running.
Tuesday, July 12, 2011
Good tennis, good counts
Ben and I enjoyed our second annual trip to the Hall of Fame Tennis Championships in Newport, R.I., Sunday, watching 6'9" John Isner defeat 5'6" Olivier Rochus 6-3, 7-6 (6) on Newport's grass courts.
The setting is so intimate that, in addition to seeing the players up close and personal, you get to keep an eye on all the other action, such as the tiny ball boy who seemed to put a big effort into jumping to give Isner a towel.
Isner has one of the fastest serves in tennis (140 mph), and you could practically hear it whiz through the air. On occasion, his serve did something wacky and still stayed in, and he turned to give our section a funny smile, which earned a ripple of laughter.
Rochus, who is from Belgium, is the shortest player on the tour; Isner, an American, is the second tallest (6'10" Ivo Karlovic of Croatia is the tallest). When we are tossing our trivia around, Ben and I will now be able to say that the match we saw had the greatest height differential in an ATP World Tour final. (Yeah, I'm sure this will come up a lot).
The day also included lunch at a restaurant with a view of boats on the water and a drive into Newport with spectacular views of Narragansett Bay. Also, of course, it was a great to spend the time with Ben.
So that was Sunday.
Yesterday, Katie drove with me to Boston for my appointments at Dana-Farber. (As many parents know, travel time is a great time to catch up with a child, so I enjoyed the ride with her. Next time I'll get Joe.)
Everything went well.
I spent a lot of time dozing in chairs while waiting to be seen; the new building was supposed to improve wait times, but I guess they're not there yet. Anyway...
My counts were good, with the caveat, when considering the platelets, that they're OK for me:
WBC: 9 (normal=3.8-9.2)
Hemoglobin: 11 (normal=11.9-15.0)
Hematocrit: 31.6 (normal=34.8-43.6)
Platelets: 76 (normal=155-410)
The platelets are about the same as at my last visit, six weeks ago. I asked Melissa why they weren't going up; she said they are not concerned and that there could be several (benign) influencing factors.
When glancing over the counts back home, I did almost fall off my chair when I looked at the ferritin level: 6,766, very high when considering that normal range is 10-170.
I knew that from all my transfusions my level of ferritin – the protein that stores iron in the body – was high, but frankly, I had never asked how high. I had been taking daily doses of Exjade, a drug that decreases ferritin levels, but I took a break while dealing with other matters. (I was happy to stop because it's a pain to take. You have to dissolve five pills in water, chug the stuff down and then wait half an hour to eat.)
Melissa said my level is actually lower now; it was around 10,000 at one point. But she said it's as good a time as any to restart. So here I go.
I also met with Dr. Laura Goguen, the surgeon who operated on my tongue. She said it is healing very nicely. She also said my continuing discomfort makes sense due to the number of nerve endings on the tongue, but there's nothing much to do about it if I don't want to pop Tylenol all day. At least at this point it is more background noise than sharp pain the way it was in the beginning.
After the long day in the car and at the clinic, I went for a run when I got home. It was still pretty hot and humid, but it felt good to move. I went about 2 1/2 miles, which included twice around the lake plus there and back. Dripping sweat, I came home and walked Maddie probably another half-mile.
You don't normally think about it when your feet don't hurt, but I am still so close to the experience of them killing me that I appreciate the absence of pain.
I think I will maintain the 2 1/2 miles for a while and then add another half when I'm confident that all systems are in order.
The setting is so intimate that, in addition to seeing the players up close and personal, you get to keep an eye on all the other action, such as the tiny ball boy who seemed to put a big effort into jumping to give Isner a towel.
Isner has one of the fastest serves in tennis (140 mph), and you could practically hear it whiz through the air. On occasion, his serve did something wacky and still stayed in, and he turned to give our section a funny smile, which earned a ripple of laughter.
Rochus, who is from Belgium, is the shortest player on the tour; Isner, an American, is the second tallest (6'10" Ivo Karlovic of Croatia is the tallest). When we are tossing our trivia around, Ben and I will now be able to say that the match we saw had the greatest height differential in an ATP World Tour final. (Yeah, I'm sure this will come up a lot).
The day also included lunch at a restaurant with a view of boats on the water and a drive into Newport with spectacular views of Narragansett Bay. Also, of course, it was a great to spend the time with Ben.
So that was Sunday.
Yesterday, Katie drove with me to Boston for my appointments at Dana-Farber. (As many parents know, travel time is a great time to catch up with a child, so I enjoyed the ride with her. Next time I'll get Joe.)
Everything went well.
I spent a lot of time dozing in chairs while waiting to be seen; the new building was supposed to improve wait times, but I guess they're not there yet. Anyway...
My counts were good, with the caveat, when considering the platelets, that they're OK for me:
WBC: 9 (normal=3.8-9.2)
Hemoglobin: 11 (normal=11.9-15.0)
Hematocrit: 31.6 (normal=34.8-43.6)
Platelets: 76 (normal=155-410)
The platelets are about the same as at my last visit, six weeks ago. I asked Melissa why they weren't going up; she said they are not concerned and that there could be several (benign) influencing factors.
When glancing over the counts back home, I did almost fall off my chair when I looked at the ferritin level: 6,766, very high when considering that normal range is 10-170.
I knew that from all my transfusions my level of ferritin – the protein that stores iron in the body – was high, but frankly, I had never asked how high. I had been taking daily doses of Exjade, a drug that decreases ferritin levels, but I took a break while dealing with other matters. (I was happy to stop because it's a pain to take. You have to dissolve five pills in water, chug the stuff down and then wait half an hour to eat.)
Melissa said my level is actually lower now; it was around 10,000 at one point. But she said it's as good a time as any to restart. So here I go.
I also met with Dr. Laura Goguen, the surgeon who operated on my tongue. She said it is healing very nicely. She also said my continuing discomfort makes sense due to the number of nerve endings on the tongue, but there's nothing much to do about it if I don't want to pop Tylenol all day. At least at this point it is more background noise than sharp pain the way it was in the beginning.
After the long day in the car and at the clinic, I went for a run when I got home. It was still pretty hot and humid, but it felt good to move. I went about 2 1/2 miles, which included twice around the lake plus there and back. Dripping sweat, I came home and walked Maddie probably another half-mile.
You don't normally think about it when your feet don't hurt, but I am still so close to the experience of them killing me that I appreciate the absence of pain.
I think I will maintain the 2 1/2 miles for a while and then add another half when I'm confident that all systems are in order.
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