Have to type a little larger to see what I'm doing here. Had hemorrhages in both eyes due to low platelets when I was first dx'd in late Nov 2011.
Had my first induction then, a 7+3, and stayed in the hospital until 12/26 due to serious infections. The 14-day BMB showed zero blasts, and everything looked very hopeful. But then the 30-day BMB showed 8% blasts.
It was decided to give me a 2nd, mini- induction (5+2) in Jan 2012. (These first inductions consisted of cytarabine and the -rubicin twins.) The follow-up BMB showed 13% blasts.
I went back in mid-Feb 2012 for a 3rd induction consisting of mitoxantrone and etoposide. The 14-day BMB, done on March 2nd, showed 9% blasts.
At this point my chief oncologist (U. of Utah, Huntsman Cancer Center, VA) is calling my AML "refractory" but says he will be 'consulting with colleagues.' The general plan is that I will be re-admitted next week for what could be a 4th attempt at induction and CR.
My end goal is a bone marrow transplant. I have a 100% matched sibling, and have been provisionally accepted for the Seattle VA transplant program. Just need to clean up the blasts and maintain CR in order for them to take me in.
Has anyone else taken multiple induction attempts this far? If so, what works?
I also have FLT3. One cycle of chemo. The prelim BMB report I got today show no leukemia cells. It's day 14 for me. the next BMB will be day 21. So what I've thought about is what will it take if I relapse, to be be able to get a stem cell transplant. Sorry I can't offer experience on "refractory".
I'm in a clinical trial at Stanford Cancer Institute. I'm 64. I've had hi-dose cytarabine , clofarabine and neoprene as a primer, over 5 days. The trial limits to up to 2 inductions and up to 3 consolidations using the same meds.
Keep up your efforts.
Was told today to expect a 2nd post-chemo bmb in a few days. As far a treatment at Stanford - I've been impressed. My main side effect from one of the chemos was heavy fluid retention. It's given me shortness of breath. When I first brought it up, the docs very quickly responded to check that it wasn't something more serious, including an EKG, x-rays, ultrasounds.
My induction/consolidation is part of a clinical study. I'm dealing with quite a number of doctors, fellows, residents, study coordinators. Makes me feel I need to stay focused each day on what I want to know. There's a heirarchy and I don't know who's necessarily going to give the me the best answer.
The food is pretty good with lots of choices. I've been able to maintain an appetite for 4 weeks.
Lots of choices on the food? Wow!
Sounds like you're trying to stay on top of things with regard to your treatment. That's good. When you stay involved you get the best care.
The fluid retention issue has hit me during each of my first three inductions. I drink a lot of water to keep hydrated and they always have me on a maintenance drip IV with 5% dextrose. So I've always had a standing PRN order for a Lasix 'water pill' when my daily weight exceeds my base weight by 2 lbs.
Good luck on your next BMB. Hang tough, stay positive and keep up your sense of humor. You can't fight AML without a smile on your face.
Hi and welcome, Bob. Sorry you had to find us.
I think it's pretty rare to have someone go through four inductions. At least, not many who pass through here have gone through them. I understand why the doc is calling it refractory. But you have responded to chemo before. I'm thinking they must have a new combo they are considering for you.
Are you/your doctor in contact with the Hutch in Seattle? I understand that the Seattle VA program has help from their docs. I would certainly want them to be consulted in how to get me ready to make it to transplant.
I think it's good news that you went from 13% to 9%. I hope they're able to get you close enough for the transplant. Please keep us updated.
Hello, and thanks for the encouragement, Tex,
Update on my situation. Met with my oncologist this morning. He's readmitting me on March 14th for a 4th round of induction. It will be three days of cytarabine and idarubicin, plus five days of Nexavar (sorafenib).
I'd been doing a lot of research during my past week at home, and had been consistently finding Nexavar as the best solution for refractory AML with FLT3. So when I met with him, I was all prepared to argue my case for receiving Nexavar. I brought it up almost immediately, and he said, "Yes, that's what we're giving you." That made my day!
So it's back to the hospital for another 3 weeks or so. I can take it, although I may have to talk to the dietitian about the food.
If you're able to get a dietician to change her/his menu, you will get my vote for Man of the Decade. It would certainly indicate you're staying incredibly strong through treatment.
Glad you feel comfortable about your treatment. That always helps.
Fight the good fight and keep us posted.
Chemo started yesterday afternoon. It was delayed by an hour because they needed to put some stuff in my chest port to clear out the fibrinogens that grow in there between hospitalizations. Otherwise it was a very smooth admission...the nurses had a room for me immediately -- even had my name written on the door -- and were all set up with the wristbands, blood tests and all the other initial stuff they do. They even had my pajamas laid out, except that they gave me two pairs of pants instead of pants and shirt, and I had to go out to the nursing station and tell them I didn't have four legs.
Just had an interruption. The oncologist came in to see me. Said my white cells are already starting to drop, from 3.2 yesterday to 2.6 today. Get ready for a rough ride!
Have been up walking twice already today. Had to take my short route, because the lady in the clinic down the hall is the Wicked Witch of the West. She tells me to get back to my room because patients with active chemo IVs are banned from the hallways, according to hospital rules. She's right about that, although my own docs and nurses want me up and walking as much as I can tolerate.
Getting a higher dose of the chemo drug Cytarabine. The last two times I had it, it dripped into me at 5mls per hour. Now they have it cranked up to 23mls per hour. Oncologist says that can make me dizzier, so I'll have to watch it on the walks. Will keep getting this drug until Saturday afternoon. Have already had two doses of the Nexavar, which will hopefully knock down the FLT3 gene during this chemo treatment and get me closer to Seattle for the BMT.
Take care and keep in touch. Also, keep positive, keep the faith, and keep your fingers crossed for all of us to succeed.
Yeah, they can't have any spills of the corrosive poison they're pouring into us, can they? I was allowed in the cancer floor's halls but was not allowed on any other floor. At least the charge nurse smiled when I came by.
Keep being careful but keep walking. I'm convinced it makes the transplant experience better for many of us.
Keep us posted.
It is Saturday on Easter weekend. My 24th day of this admission. Appropriately, a day of being in limbo.
Had my bone marrow biopsy on Good Friday. It was the first one since my fourth induction attempt. It is the one that tells me if the season is over or if I go on to the playoffs. No word on the score yet.
I'm slowly but steadily climbing out of neutropenia. No fevers for the past five days. Starting to get my taste buds back...the taste of hospital food now ranges from really bad potluck fare to very old roadkill. I'm walking as often as I can, but also taking more naps than I'd like to admit. I rationalize by telling myself the sleep is need to rebuild the marrow and immune system. Maybe it's true.
It's a little harder to keep a smile on my face this weekend, a little harder to keep the nurses entertained. Gotta work on that. Gotta think happy thoughts and give the smile a kick start.
Hoping to get out of here by Tuesday, and hopefully with good biopsy results. Keep your fingers crossed for me.
Thanks for the update, I have been wondering how you were getting along. It sounds like the whole thing's getting pretty old. Those damn fevers really wring a person out, not to mention the fact that trying to sleep in the hospital is a cruel joke.
I've sure got my fingers crossed that the BMB reveals the score you need to advance to the playoffs! Wishing you the best Easter possible; I'm hoping that you find an opportunity to smile, and that your counts continue to climb so you can enjoy something decent to eat in the near future.
Hang in there, we're pulling for you.
Less than 5% is remission. That's great, Bob. Now, you have to hold remission awhile. I hope the folks in Seattle give you the green light. Transplants aren't easy but mine is the only reason I'm here to write to you today.
I never had taste bud issues. With the taste of some of the hospital meals, maybe I wouldn't have minded have it intermittently.
Happy Easter, Bob. I don't know that it's a day for Limbo, so much as a day to remember that anything is possible.
Just got the word from the oncologist. The preliminary biopsy result is the best ever at this many days after chemo....3%.
I may be able to go home tomorrow, but perhaps only for 2-3 days. The plan right now is that they will pull me back in to the hospital for additional chemo. Depending on the morphology results, it may be a brief consolidation treatment (about 1 week) to maintain remission, or a 5th round of induction treatment (another 3-4 weeks in hospital) if they need to push the blast count even lower.
The docs here will be consulting with the transplant center in Seattle before deciding what to do, so there may even be a third alternative. It's all up in the air, but for right now the news is very good. My thanks to all who have pulling for me.