AML Awareness Day: A lot to know

The Leukemia and Lymphoma Society (LLS) sent an email stating that today is AML Awareness Day. Who knew?

The letter states:

"Acute myeloid leukemia (AML) is a complex, rapidly progressing cancer that has seen few advances in treatment even as therapies for other blood cancers have taken remarkable leaps forward. Since the 1960s, five-year survival rates for many blood cancers have doubled, tripled and even quadrupled. Today, only one in four AML patients survives five years after diagnosis.

"AML is one of the deadliest blood cancers and the most commonly diagnosed form of leukemia in adults. It is extremely complicated to treat because it is not a single disease, but a group of more than 10 different major subtypes and other rare mutations. With advances in genomics, we can now identify and target specific types of AML. This precision medicine approach is the key to new therapies for patients."

It goes on to give details of its Beat AML Master Clinical Trial, which employs precision medicine to give the right therapy to each patient based on specific AML subtype. 

The website Know AML  states, "Know AML was initiated on the 2 December 2016 in San Diego, CA during the American Society of Hematology (ASH) 58th annual meeting.

"During ASH, a collective of AML patient leaders, professional representatives and industry supporters gathered to formalize how to mark AML World Awareness Day 2017. Their aim was to raise awareness and education in AML to Patients, Carers & Families, Healthcare Professionals and the General Public."

The website suggests different ways for people to help spread awareness of the treatment and support options available. They want you to wear red and black, and, "Everyone is encouraged to share their activities, so if you could film or photograph wearing red and black and then share it on social media using #KnowAML, you will appear on our activity wall.

Some points:

1: Carers is actually a word. I thought the word was caregivers but I looked it up and saw the shortened version.

2. Colors are silly. Not going to wear red and black. In any case all I can think of is Stendhal's"Le Rouge et Le Noir," which, like the author of this story, I read when I was about 17. 

3. Yesterday when I went to have my blood pressure checked, my internist said he didn't know anything about it. I'm all for AML awareness, but it's kind of grandiose to start something and call it World Awareness Day. (By the way it was down to 128/82. He said that was pretty good, not great. I was surprised because I thought it was good. They have changed the guidelines to make it even lower but he said it was good enough and he wasn't increasing my dose of blood pressure medication.)

4. This caught my eye from the LLS email: "Today, only one in four AML patients survives five years after diagnosis." Not that I need reminding, but it reminds me how lucky I am to be alive.

5. When a whole bunch of information comes at you, it's useful to look at where it's coming from.

The LLS trial has the backing of the FDA and is a led by blood cancer researchers from leading medical centers with input from drug companies. Know AML is chock full of studies by leading researchers, but the supporters are all drug companies. This made me leery about a potential bias towards certain treatments from which they would benefit.

For example, in this story about a 70-year-old with symptoms, he is quoted as saying, "My new oncologist recommended the same decades-old standard of care for AML, which is an aggressive chemotherapy regimen. I knew the treatment would have harsh side effects and would not cure my AML.”

First of all, nobody talks like that, a sign that somebody wrote it.

I wondered, how did he KNOW the traditional regimen wouldn't work, besides the concern over his age?

He went with a targeted therapy offered through a clinical trail, using a drug that would only go after the cancer cells instead of the kind of chemo that I had, which wreaked havoc in my system.

Great that they can have more alternatives now.

The story was generated by Celgene, a global pharmaceutical company, a sponsor of the Know AML venture along with three other pharmaceutical companies. 

The professional sponsors are European LeukemiaNet and Haematology Nurses and Healthcare Professionals Group , totally legit, but the major backing of "big pharma," could at least make you wonder.

6. If this is too much information for you, the reader, I apologize.

It was also probably too much for me. For example when I started reading about 10-year survival rates for patients with different mutations and with different kinds of treatments, I realized I was getting into territory that has always made me uncomfortable.

I never wanted to know all that stuff.

My late great friend Patricia did want to know, and we used to have lively discussions about how to decide what is too much information, or too little, or the right amount.

I'm sorry that she is not here to discuss this great big information dump. We probably would have laughed about it, thereby smoothing over our discomfort.

Relieved

A weight lifted off my shoulders when I found out almost by accident that my health insurance covers transportation to and from medical appointments.

That's right, taxis from South Hadley to Dana-Farber and back. Not only can I start it next week, I could have used it all along. And to get around to Margaret's or Diane's for spending the night, I can use The Ride, an MBTA program costing only $3 per ride.

I wish I had known about this before. It would have saved miles on my car, money spent on gas,  and fatigue and stress while driving.  But, cliche appropriate here: It's not good to look a gift horse in the mouth.

Esther, my nurse on Monday, had heard me talking to a representative from the Leukemia and Lymphoma Society about a patient travel assistance program application that I was trying to fill out with one hand. She said that Dana-Farber had helped other patients resolve transportation issues, and she offered to email Tammy Weitzman, one of the Dana-Farber social workers. Tammy called me immediately and said that a woman named Hannah-who-works-very-quickly would get on it, and sure enough, the next day Hannah called and said she had taken care of it.

I talked to Hannah today to get the phone numbers for making reservations and another for setting up a Ride account and depositing money into it. My pickup in South Hadley is scheduled for noon on Monday. Thankfully I can sit back and let someone else handle the traffic.

By the way, Hannah is Hannah Kitzmiller. She works in Patient and Family Programs and Services.

Four ECP sessions down. Only 20 to go.

It was quiet Monday in the section of the Kraft Blood Donor Center devoted to ECP, but yesterday morning the place was humming with activity. I dozed on and off through it. A nice pathologist who walked around checking on us said you just have to get into the groove of boredom.

The needle in my arm hurt on and off but felt better with a heating pad on it. The challenging part is  hardly moving for three hours.

It took a few minutes for me to straighten up after getting out of the chair.

"Oil me," I said.

On losing a friend to leukemia

Patricia and her "therapy dog," Buck.

Shortly after I started my blog five years ago, PJ appeared out of the Ethernet to say that we were doppelgangers.

We were both runners, we both had three children of roughly the same age, and we both were treated at Dana-Farber for the same cancer – acute myeloid leukemia, or AML.

Over the years we competed about who had had the worst and most: the most bone marrow transplants (I won with 4-2), most falls (we lost count), skin cancers (don’t know) worst rashes (hers) and most teeth lost (me, 11-4). Then there was the too-many-to-count column: pills swallowed, tests taken, specialists seen. We made light of these ordeals, using humor as an antidote to the pain, the anxiety, the fear.

She was feisty, funny, smart and compassionate. So I was just so sad when I read her husband Marty’s email on Sunday saying that she had died the day before. After eight years of doing battle, she had relapsed a second time, and there was nothing else to do. She died peacefully in a hospice in Brooklyn.

PJ – aka Patricia Jempty– was funny even in the way she named her blog: The Plog.

She was so proud of her children, posting photos of the family at milestone events and Thanksgiving dinners. She got to many of those, but not enough.

We each visited the other upon our first relapses when hospitalized at separate times on the same floor at Brigham and Women’s Hospital. The last time I saw her was at the New York apartment where she and Marty had lived for a time. She made us the perfect cup of cappuccino.

Most every Sunday she called Ann, another blog friend with leukemia, who writes on Ann’s Fight. PJ had a horrible case of Graft-vs. Host Disease – trouble with her eyes, an almost unbearable rash, and weakness like I have had from the prednisone prescribed to control the GVHD. She went to yoga, fell down, got up and returned.

She colored her hair and got a manicure to fight malaise when, as she wrote, she felt trapped in the wrong body, having gotten puffed up from prednisone like I did. She participated in the Leukemia andLymphoma Society’s Team in Training effort to raise money for fighting blood cancers and run the New York Marathon. She did it in memory of Dori Brown, who died in 2011 from AML and whose husband, Jim, ran for and wrote about the woman with the beautiful smile on his blog, Run for Dori. In describing her bond with all of us, PJ wrote of “the sisterhood of leukemia and transplant.”

She ran a good part of the marathon, tripped and fell, picked herself up, stopped to have brunch with a friend whose apartment was on the way and then walked more of the course with Marty. She always felt better with him at her side.

Her most recent dog, a Bouvier des Flandres in a long line of them, was blind, but she learned how to deal with this. He knocked her down when near the end she was very weak, but she didn’t complain. After their children were grown, she and Marty had sold their house in Rhode Island with the garden that she loved and moved to New York so they could go out on the town. She wrote about the delicious food she cooked in their tiny apartment and about the great restaurant meals they shared with friends and later about how they bought a house in the country to enjoy the peace and quiet, the sounds of the birds and brook, a place for the dog to run.

She was a voracious reader, posting perceptive observations on her other blog, Word in the Woods. She called David Foster Wallace’s 1,079-page book “Infinite Jest” her Waterloo. We talked about it on the phone. I said I wanted to read it but had never tried. She said she was going to tear it in half, throw part on the floor and read it in pieces. I think she got through a good chunk.

That is how I will remember her, always finding a way.

First blood cancer support group a success

Last night I went to the first meeting of the new Western New England Blood Cancer Support Group organized by the Leukemia and Lymphoma Society, and although I can't even sketch out the details due to confidentiality, I can say that I already found support in hearing stories that were even more crazy and mixed up than mine, the kind you can only hear from people with blood cancers.

Out in the world you don't hear much about blood cancers, and the only kindred spirits I know are my fellow leukemia bloggers, PJ and Anne.

The group is for family members, friends, survivors and patients. (Some people don't like the word "patients" because whether you have gone through it or are going through it, you are a survivor, but it serves a purpose of showing what stage of the process people are in.)

I was able to offer support, giving some tips on this and that and serving in my role as a Dana-Farber cheerleader, assuring people that the geniuses out there, luckily so close to home, will figure it out if anyone can.

I am getting the name of a patient about to get her third bone marrow transplant out in Minnesota. Naturally she is scared about it, and I am living proof that it can work. Also, not that I don't think of my donor, Denise, all the time, but I heard some stories that made me more thankful for her, if that is possible.

Being Jewish (is this a Jewish thing, or maybe a reporter's thing?) I had a bisl of food before so that I shouldn't starve in the dinner time meeting, but there was a nice spread of food.

I got home just in time to see the exciting overtime in the Bruins game, in which they beat the Red Wings 3-2, and then I stayed up to watch the interviews. Sorry to state the obvious, but there are real people under those helmets. I like actually seeing their faces.

Too wound up to go to sleep, I stayed up and watched a bit of The Tonight Show with Jimmy Fallon and got my first look at his dancing Panda. I also saw Aerosmith's Steven Tyler sing the message on the answering machine of a woman whose name was picked out of a hat. Called up to the stage, she giggled and smiled. Really fun.

The support group is facilitated by oncology professionals including Dr. Jay Burton of Springfield Medical Associates, a fellow AML survivor. More information is available by emailing cancersurvivorship@gmail.com. Meetings are scheduled for the fourth Thursday of the month at St. John's Church Parish Center in Agawam.

Support for blood cancer survivors

Support groups for survivors of blood cancers are usually connected to major cancer centers which are not that easily accessible to people in places like Western Massachusetts, but Dr. Jay Burton of Springfield Medical Associates hopes to remedy that by starting a group in Agawam.

He spoke last night at St. John's Church Parish Center at a dinner sponsored by the Leukemia and Lymphoma Society. When I got the invitation via e-mail I didn't expect many people to be there. I was totally surprised to see a parking lot full of cars, and, inside, some 200 people, a combination of survivors, new patients, friends and family and other interested people.

I'm not sure if I would have joined a support group early on, but if I had wanted to, there wouldn't have been any available around here. There are breast cancer support groups and general cancer groups, but nothing specific to people fighting blood cancers. The only people who are on the same page as me when it comes to post-transplant issues are the friends I have met through the blogosphere, PJ and Anne. I know PJ in real life now too because we both went to Dana-Farber and both live in the Northeast, but it would be helpful to meet other people dealing with Graft vs. Host Disease.

I am blessed to have a large and wonderful support system, but really, how many people want to sit around and compare notes about lost teeth, tingling feet, messed up skin, side effects of prednisone, numbers of falls,  etc.?

Chances are I'd be able to help some newbies out, also.

I'm looking forward to attending the first support group meeting, which is scheduled for April 24 at the church in Agawam.

Goodbye Dori

The Internet provides immediate closeness to people with this terrible disease. You don't have to get to a support group or plan meetings. Click and you have found a new kindred spirit.

That's the way it was with Dori Brown, who died Tuesday of AML, the same kind of leukemia that I had. We never met or even talked, but thanks to the words of husband Jim on his blog Run for Dori, I felt like I knew her. I also felt like a knew Jim. He is a runner who participated in races benefiting the Leukemia and Lymphoma Society and other organizations seeking a cure for blood cancers, and he drew attention to the need for more people to become bone marrow donors.

He chronicled in words and pictures Dori's four-year battle with leukemia, letting us into their life as parents to two children, writing about the effects on the kids, and as an extra benefit to runners, taking us with him on his runs on the good days and the bad days and speaking candidly about how they helped him, or didn't, depending on the day. He gave a full picture of a family going through the leukemia journey.

Dori's smile was always with us, most often in photos showing her having fun with her family. Jim's writing was expressive yet never excessive, realistic and informative and showed how this couple navigated the ups and downs with grace.

I loved it when he wrote after she came home from the hospital for the last time that she was the most beautiful cancer patient he had ever seen. She seemed tremendously warm and loving, like someone who  really enjoyed and appreciated life. And without ever being maudlin, Jim wrote about how much he loved her. You could also see how much her kids, Will and Kathryn, loved her, and you could see how they have the strength to be OK.

I really thought Dori was going to make it. When I saw Jim's latest headline, "Rest in Peace," I was floored. And there was Dori's smiling face. I'll miss her, and him too. It would be understandable if he signed off from the blog, but I hope he continues writing for a while so that his big support group can keep in touch.

Leukemia threatens another life ... on film

Catherine Deneuve plays a woman with leukemia in a new movie

Tonight I heard an interview on NPR with Catherine Deneuve, known as the grande dame of French cinema and considered by many to be one of the most beautiful women in the world. I've followed her career since being transfixed by her performance in 1967's "Belle de Jour."

Now 65 and still beautiful, she plays the "monstrously complex" matriarch of a large, dysfunctional family in the new French movie, "A Christmas Tale." Her character has a rare form of leukemia, which killed her young son and now threatens her own life. It turns out that her black-sheep son is a perfect match for being a bone marrow donor. He says he doesn't love his mother. She says that's fine, because she doesn't love him. Obviously their relationship is complex and they love each other in their own ways.

In the interview, Deneuve discusses the complex relationships in the film and answers a question about how it has been for her to age on film in front of so many people. She replies that it is much easier for women to age gracefully in Europe than in the U.S. It's not a new thought, but still, it's interesting to hear it from her.

As for the film, I don't know how the story plays out, because the NPR story and print interviews don't give it away.

I do know that fatal blood cancers -- most often leukemia -  are "popular" in movies (and novels), including "Sisterhood of the Traveling Pants," "Terms of Endearment," "Love Story," "Dying Young," "Rainmaker" and a long list of others. I'm not sure why this is. Because leukemia and lymphoma sound mysterious, or romantic? Or maybe because they are a way of giving a character cancer without having to say the "C" word? (Although in the movie Deneuve's character presents herself by saying, "I'm the one with cancer.")

One google search for leukemia and movies turned up 48 entries!

I wonder if people have any thoughts about this.

Is blogging good for your health?

I looked into this question in a guest post that I wrote for the Leukemia and Lymphoma Society's blog.

I wrote about how I started my blog (with an April Fool's joke), how PJ helped me start navigating the system, and how I discovered the positives: connecting with kindred spirits, finding support and providing it, easing isolation, telling funny or (I hope) meaningful stories, and framing my thoughts in a way that often helped me find the silver lining.

I also wrote about the negatives: the sadness in forming connections with people who don't make it or coming upon blogs carried on by relatives of those who died, reading of other patients' medical problems and then worrying that I might develop those problems too, feeling neglected when I don't get enough comments, and spending too much time on the computer.

Another "con" that I didn't write about is the tendency to assume all of my friends and family want to read it and comment. Some do, which is fun, but others don't. We're an older group that didn't grow up with all this computer stuff; not too long ago, I didn't even know what a blog was, and some of my friends don't want to ever know, let alone participate in one. I tend to get a little obnoxious when I really want someone to read it, or when I'm just too tired (or sick of hearing myself talk) to explain the results of my latest clinic visit. Sometimes I say, "The details are on the blog," but really they want to hear it from me.

Sometimes I blather on.