Lori,

FLT 3 is not the devastating news it used to be, don't get me wrong no sugar coating there are better cytogenetics I'd rather have.
That said here I am 13 months post transplant also flt3 and there are a few of us on this board.
For all of us flt3s on this board transplant was the way to go and it will probably be the way forward for Keir also. He is young very young and will handle the transplant regime just fine.
I don't know of any flt3 that was treated with just chemo always remember cure is the ultimate goal.

My prayers are with you.

Planxty

Thank you. I have to admit - I feel devastated any way and this was more bad news : ( I felt so hopeful yesterday and today - crash.

I realize he will need a bone marrow transplant and always assumed that was a possibility. I've tried to read as many of the posts here as I could, and see that many people are taking clinical trial meds. But when I asked about that today the doctor felt it was premature to discuss it. I realize that standing in the room with 8 residents is not a good situation to discuss the more complex things but I"m left here so scared.

Lori,

Praying daily for you and keir. Before I joined this site, bmt scared me. Ever though toss I am on a chemo track, I realize a bmt may be in my future. The amazing warriors on this site have convinced me that it can be a very good thing in the sense of cure. Keir will prevail and conquer the flt3 demon!

Peace and blessings,

Julie

From what I'm understanding, the fact that Keir's age (29) and health (good, all his chem screens show his organs are operating fine) means he is a good candidate for a bmt.

What I'm scared about is how to proceed. I know he needs one for a realistic shot at a cure. I am trying to find out how to talk to the doctors knowledgeably. Keir is simply not able to do the research and he's not as medically knowledgeable at this point so I'm doing the advocacy in partnership with him, but as the voice, I guess. I have read about inhibitors, should I bring them up? Clinical trials? I don't know what I don't know. Right now I'm just upset to learn this news today and wondering if it puts him at a much poorer prognosis.

And I apparently made a mistake. I was trying to research inhibitors, etc., and came across stuff like "most AML patients will eventually die of their disease."

I apologize for this but - help! I am feeling pretty shattered and confused by all this again.

Hi Lori,

I don't have much to add, but I do want to comment on the last comment. You said you read "most AML patients will eventually die of their disease." Take that statement and stomp on it, throw it out the window, flush it down the toilet, pretend you never even read it... People are beating AML everyday. It's a nonsense statement and does no one any good to give it a second read. I know it can be hard at times, but please try to stay positive. Strength being sent your way.

Twoboyz, I am so sorry I posted that; I wish I could delete it. It was the first article I read and I realized I had to stop reading right then but of course it was too late.

I am trying to see if I can talk to the attending here that I feel is most supportive but there are five attendings and it seems to be hard to get to the one not "on" rounds.

Lori,
Relax, it's fine. We all long to be survivors. You know I am flt 3 positive. Transplant is the only way to go here and then, post transplant inhibitors/little longer recovery and more hands on post care in terms of follow up.
I was busy having a pity party for myself yesterday and I am always looking at ways to beat this, but I have read the same Internet stats you read and the comments are not positive. Last night I just broke, it happens, but today I blame it on low platelets, so I guess neededing a transfusion made me sad. My husband, while I was sad, reminded me last night that when I was unconscious and really sick in ICU, the docs told him they never saw someone with a bigger will to live, I was unconscious at that point and I did not know that I was fighting, but apparently deep within me there is a fighter.. I ignore the articles and stats now because I know two things, God determines the when and there are new treatments being discovered literally every day.
I am sorry the docs dumped the news and then left. They should have come with the news completely prepared to sit for an hour or five to discuss "what this means".
The first question is, when do you get Keir on the transplant list. Make it happen yesterday and be persistent. Get everyone tested now. I was found not to have a match, so I had to get a different type of transplant called a haplo (half match) -again OPTIONS. A parent can potentially be a donor, the reverse is not always true. I had a researcher on board from October and he coordinated with my transplant group about the ideas for inhibitors post transplant. I was pushy, assertive, some may say a pain in the behind, but, I was going to be involved somehow. I was lucky to have a team that invited my curiosity.
Hang in there. Write a list of questions and then get answers.
Peace and hugs,
Andrea

Lori,

Let me be very frank with you. I know your pain, because as I told you, my eldest daughter is 29 and when I look at her and experience the intense love that only a parent can feel, I can only imagine the anxiety that you are experiencing.

I developed AML when I was twice Keir's age. My health was excellent and I was one of those gym obsessed people who refuse to believe that they are the age that they are. My parents, who are now in their early 90s, are vigorous and two braniacs. When I got my diagnosis, I was in shock. I didn't know whether I felt more sorry for myself or my family. Although I am a physician and am able to understand a great deal of what is in the AML literature, I chose NOT to read any of it and to silence a loving sister who was frantically combing the Internet for information about AML and survival statistics. I do not know what subclass of AML I had. Such knowledge would not help me through my illness. I have no idea what the survival statistics are for someone who gets AML at 58, nor do I care.

I do know that my cytogenetics placed my need for a transplant right in the middle...not good enough for chemo only, but not bad enough to require a transplant. However, that was what was suggested and I am now 2 years post allograft. Whoever says that most people succumb to their AML must be living either on another planet or in a time warp. More and more of us have been cured of our disease and have returned to a normal life - a normal life that is lived with increased zest and appreciation for the most trivial things that make us human.

It would be inappropriate for me to tell you to take a blase attitude toward Keir's treatment and his recovery. If Keir were my son, I would likely be wringing my hands. That's what parents do, but is not necessarily what is best for you or Keir. The road is rough, the street signs are blurry, the potholes rampant, and the speed bumps numerous. But you and Keir will learn how to navigate this treacherous course with your eyes always focused on the finish line -- good health. There is a finish line out there for Keir and I want you to sigh with relief when he crosses it.

DO NOT be afraid to ask questions to Keir's doctors, especially if he is reticent. You and your son should understand what types of treatments are out there as adjuncts to the usual chemotherapy and transplant therapies. Keir is young; I am not. I got through it, and so will he. Ask your doctor to explain everything to you without quoting statistics or other USELESS bits of data. Just ask "what path are we taking, and what are the advantages of this line of treatment? What are the options, if any? What are the LIKELY side effects of therapy (not a list of every little thing that has ever been reported as a side effect). What precautions will Keir and the rest of us have to take when he is discharged between chenotherapy cycles. What can Keir do to maximize retention of his muscle mass and strength? What foods are good, if tolerated?" These are forward looking questions that will move your thought process along. You know what Keir has and so does he. Don't dwell on the present; look to the future. You, as well as Keir, will need support to get through all of this, so reach out to those who love you. You'd bbe surprised what good friends can do to help.

We are all here for both of you We have all weathered some or all of the storm, and our collective experience is intended to orient you to the realities of AML and its treatment, rather than waste your time with half-truths and hearsay, Keir will get through this and so will you. We will make sure of that.

Love,

Cliff

I want to thank each of you. I felt increasingly derailed by this news, and I really haven't had time to get my footing in all of this yet, so I guess derailing is not too difficult.

Cliff, I agree that reading statistics won't tell me anything about Keir's particular situation. I think - like many perhaps? - I seek reassurance via statistics and finding the opposite fuels a kind of panic. A bad cycle.

I was upset at having to ask the doctors about this status information; no one had informed me that he was positive until I asked today. Here at Rush, when you are an inpatient, the attendings (I think there are five) round and take turns. So you see a lot of different doctors and can go a long time without seeing the ones you saw initially. However, I asked to speak by phone to his "primary" attending, someone whom I'm told is excellent at explaining things, Dr. P Venugopal. I guess I felt some shock; I assumed that if there was something that significant about Keir's situation, we'd have been informed. It's all confusing to someone who is not really sure what needs to be asked, and I greatly appreciated the list of questions.

I wish, so badly, this was me instead of my son. It is a special kind of torment to watch your child endure this and to fear so for them. But I also know I need to gather myself to help him get through this.

At this point, should I be asking about inhibitors, clinical trials, etc?

Hi Lori - to add to what everyone is saying here, IGNORE the stats. Do not place anything by them. Keir is young, healthy and a fighter - and will do great!

When my dad was diagnosed with AML FLT3, he first went through 2 rounds of chemo. The first was the regular Ara-C and Dauna Rubicin (sp?), and then when he relapsed they did a more potent cocktail. We spoke to a lot of people after the first relapse about whether to go to a trial or do more chemo - we spoke to 2 different doctors at 2 different hospitals (one at Sloan and the other at Cornell) and they both had different recommendations. Eventually, my dad made the decision and wanted to try the "conventional" chemo route one more time, since he did go into remission the first time.

When he relapsed for the second time, he was placed on a clinical trial, which is what he is on now (Plexxicon, at Cornell in NYC).

Like Andrea says, you have options. First get him on the list for a donor. Then ask a TON of questions!

Hang in there Lori, and stay positive. Sending you prayers and a big hug.

Lori,

It is appropriate to ask about options, protocols, and trials. When I said that I didn't want to know statistics, I was not saying that I did not want to know what their plans were for me and what my treatments would entail.

Do not worry about Keir getting a transplant. He is young and will handle things better than I. The ironic thing is that 5 minutes after I wrote my last post, the hospital contacted me with the name and location of my donor (in Eibelstadt, Germany). It makes all of this so surreal. What does a 60 year old doctor have in common with a 33 year old German man? We are blood brothers (I should say blood clones!)

Lori, the way the attendings rotate on the wards (at Memorial Sloan Kettering) is much like the way they do it at Rush. Sometimes you crave speaking with a particular doctor, one with whom you have developed an empathic relationship and who speaks to you as an equal. I would definitely speak to the doctor you like. If necessary, call his office and tell his secretary that you want to speak to him.

Write down all of your questions. Some doctors hate when a patient does that, but I don't. I know that the anxiety can make you forget what you wanted to ask.

Hang in there.

CLiff

Thank you Cliff. I wrote down a lot of things and now am just waiting here for him to call. I know this is all premature, but if, say, Keir would benefit from Cornell's clinical trial, what do I need to do to maximize his chances of getting to be in it? ( When I was caregiver for someone else who was seeing a melanoma expert, they didn't really let us know about clinical trials not run by them. I would desperately search clinical trials.gov but not being a doctor, it was incredibly hard to figure out which ones to pursue).

I'm sorry to sound so hysterical here; I'm embarrassed. I've been alone here with Keir for going on four weeks and am finding it difficult to do without someone to talk to and so am over-using this board - I apologize, truly. I am very grateful for what has gone right - Keir has c-diff but the flagyl seems to be working, and no other infections, his counts have begun to come up (day 20 now) and he feels pretty good except for some fatigue. His bmb was good. I recognize all these as good, and I appreciate your comments about the murky road. I am hoping Dr. Venugopal will be able to provide some answers that calm me as well.

Lori: I also have FLT3 (or as one of the doctors says, I am a "flitter.") I have learned not to dread it. Everything here that everyone says is very helpful. I would encourage you to contact BE THE MATCH. My doctor (head of the transplant unit her at The James at Ohio State) put me in touch with them, and they offered about a dozen pamphlets to read about just about every aspect of the transplant. It was a bit overwhelming to read it all, but it really ,really helped me have informed conversations with the doctor. It's all free, and they sent everything quite promptly. They have a web site, but your hospital will also be able to give you their address. They sent DVD;s from survivors who talked about the process and they just have a lot of good information. It's not easy reading. I am being admitted on Thursday to begin the transplant process, and I won't say I am not scared. But this is definitely the best chance I have for both survival and quality of life. Kier is about 40 years younger than I am so he will have a much easier time. Keep in touch. My thoughts are with you both.

Shoshone

SBPH, may I ask if your dad was a bone marrow transplant candidate or how he decided on that route of treatment? Shoshone, thank you for the information. It is all so overwhelming; I keep using that word but I feel like we were standing on the beach watching the beautiful waves when suddenly a tidal wave hit. And every time we manage to make it to shore, another one sweeps us off.

I will be sending you all possible healing thoughts and positive energy and prayers as you commence your transplant!

I'm still nervously awaiting the doctor's call. He is calling the room phone, so I hope it's soon because I can't use Keir's bathroom and I don't want to leave the room in case he calls. Been waiting on this couch nearly four hours as the nurse thought he'd call "very soon"! I am learning there is a different timetable for all this, definitely. I wish my husband could be here with me; it's hard being the person getting all the info and news with Keir and then trying to pass along what was said, minus my interpretation.

Keir continues to feel better. It is good to see him laughing as he watches something on his computer. He was up a lot last night with diarrhea, with me doling out fresh clothes and support, so I think we are both a little worn down today generally by everything. I remember reading- on one of the other threads - something Ed posted about a study out of New York (maybe Sloan Kettering?) that said that post bmt FLT3 patients did not have a higher relapse rate compared with non FLT3 patients? I can't find it again, but does that sound correct?