This is the area we all have to deal with. I am sorry it is so grey right now for you. I would definitely ask for your initial report and your subsequent ones. Perhaps getting all your results and going to someone new might be a good idea. Just having them look over the results and giving you their opinion without any pre conceived notions. This is a dilemma most everyone on this board had to decide between unless they were clearly in need of a BMT. Wish I had more to offer in support. I am sure it is frustrating. My Dr. (Who created the 7+3 protocol) Has been practicing for 54 years in Leukemia and was definitely in favor of chemo only for me. I am one year in remission and if I relapse then I will have the same choice you are facing. Hang in there. Ed

Hi Phil,
Your first bone marrow biopsy results is what they base your treatment path on. Praise God, your bone marrow has responded to the treatment and that is why you have had no leukemic cells or cytogenic changes. My first bone marrow showed a t (3,11), then after treatment each bone marrow biopsy showed normal cytogenics until October, then the t(3,11) came back. I had normal blood counts and less than 5% blasts in the marrow but because my cytogenics were changing I had to go back into treatment. My Oncologist gives me a copy of my bone marrow report, also the RN in the Onc office has been super in sending me copies of what I need. You should be able to get a copy of all of your reports, it is not easy to keep it straight and having copies has helped me immensely. Hope this helps a little.
Take Care
Suzanne

Thanks Ed and Suzanne, i guess im just confused as far as when i asked about the FLT3 everyone is saying no i didnt have it but i guess my initial report shows i did. I have to go to the transplant doctor this wednesday im gonna try and find out more exact answers..

Phil,

OMG. This has to be straightened out PRONTO. The latter two cytogenetic markers are good to have. FLT-3 is not good. Transplant is always recommended for FLT-3, but it usually is not associated with the positive markers. I don't know what they mean when they say you are in remission, so maybe you don't need a transplant. We are all in remission technically before we get our transplants. This is where I do not know what to say. YOU MUST GET A STRAIGHT STORY!!! You deserve to know what is going on. Please let us all know when you know.

Cliff

Cliff.. if you dont mind me asking what do you mean when you say its not usually associated with? I was doing some research on the internet on the 3 markers and remember reading that. Im assuming they mean remission because no signs of lukemia cells in my BMB's. My guess is good as yours.
So... if my first BMB shows FLT3 then i have it no matter what my BMB's show after the chemo correct? If my first doesnt show FLT3 then my lukemia isnt as bad?

Cliff... i forgot to mention the pharmacist said all my cytogenitics i listed were "negative" makes me an intermediate risk?

I guess theres negative and positive?

Phil,
How frustrating. You have got to get something in writing, I think, about the results of your BMB.

When I was first diagnosed, I was in a lower risk category (in terms of the ctyogenics). There was no talk of transplant. When I went to talk to researchers at U of Michigan, they mentioned (although I hadn't even thought to ask) that no one would have transplanted me with my cytogenics because I was in a lower risk category. No questions or choices for the doctors in my very straightforward case--chemo only and no transplant. I got into remission and had my consolidation treatments. All was well and going according to plan.

When I relapsed, (cause the risk is always there even if it is lower) then the road to transplant was clear. That was the only treatment option for longterm survival.

I would venture that the decision about transplant that was made based on your cytogenics at the time of your diagnosis. The goal for beginning the transplant process is to get into remission first.

This is how I understood the situation with cytogenics and transplant. The idea is that with intermediate or higher risk cytogenics, your risk of relapse is greater compared with low risk types. My guess is that different transplant clinics may use somewhat different criteria for determining who is the best candidate for transplant in the intermediate risk categories, but high risk category patients are generally always steered toward transplant if they can withstand it and low risk category patients are not regardless of overall health.

Since FLT3 is higher risk, you should know. Absolutely see it in writing in your reports and nail the doctors down on that. If not FLT3, then it may be that your cytogenics still point toward transplant because of greater risk of relapse. It's better to act against relapse than to wait for it to happen and then go to the next treatment option IF relapse is likely. At least this is how it was explained to me.

Since you have a right to see your records, you should get a copy of them and get someone to explain what you're reading. I know that I didn't know anything (and I mean anything) about leukemia or really anything related to medicine. I was in the dark and had to ask so many questions and have so many thing explained (sometimes more than once).

I am frustrated for you not knowing something so crucial to your diagnosis and then wondering if you really need a transplant.

Don't let your remission status derail your plans for transplant. That doesn;t mean that chemo only is the best route to go.

Keep us posted when you get a hold of some records and a doctor who can clear up your questions.

Keep your eyes focused on transplant as you get your questions answered.

Cliff can correct any misinformation in my post, which I welcome, but at lease this is was the general picture I got from the transplant team.

Therese

Hi Phil,
Cliff didn't answer yet so I will try to give an answer to your question. Leukemic cells/blasts all have certain mutations (like FLT3, CEBPA, NPM1 and others) and sometimes chromosomal abnormalities (translocations, deletions, duplications etc). These changes make normal bone marrow stem cell cancerous. Because you are in remission, they don't see and detect any leukemic cells, so they don't see any mutations and chromosomal changes. Normal bone marrow cells don't have them.
I also find it strange what this oncologist told you. You HAVE to be in remission to proceed with the transplant. And remission for most patients is not forever, unfortunately. But, you know, maybe he is just general oncologist who deals with everything and doesn't know AML in depth. This is very possible. or maybe he meant that only patients who relapsed are recommended for the transplant. It used to be this way, but things changed. I am sure your transplant team is more aware of the situation. Sometimes you have to educate your doctors. You do need a transplant with FLT3. It is wonderful that you were able to achieve remission with this mutation. But even in remission you still are considered FLT3 positive. I hope it helps and wish you all the best.

Yes, please get the copy of the original cytogenetics report where it is clearly stated what kind of mutations you have. I forgot to mention this. Again, all the best.

Tashka thank you for explaining, im just trying to figure out why when i asked if i was FLT3 then everyone said... no. I assume that makes a big difference. I think they were just looking at my most recent BMB and answering me instead of going off my first. Im gonna dig deeper into this, i just dont understand the part about the FLT3 being associated with the others? I assume that its unusual to have all three?

Phil,

Sorry I wasn't around. My daughters both came back from Montreal, where they were visiting my son who is getting his PhD up there. So my wife and I met them at my daughter's apartment near Hartford, CT and we had a nice dinner and brought home so many pastries from Montreal that I dare not eat them. I am getting too fat.

Your cytogenetics are indeed a mystery. As Trish said, when you are in remission, there are no malignant blasts, so I don't know where they are getting the cytogenetic information. Also, if you are FLT-3, you need to know that. That was the only question I had for my oncologist. I no longer see him, because at Sloan Kettering, the oncologist that gets you into remission for a transplant is replaced by a transplant specialist. I have never asked again about my genetics, because I have been told from the first biopsy post-transplant that I am 100% donor. So my bone marrow has been completely replaced.

Phil, I am no oncologist, but I try to answer questions to help everyone here, and if I don't know the answer, I can quickly access the scientific papers that discuss the issue at hand. I try not to read about my own situation, because I don't feel that it is worth the anxiety. The only issue for you, as I see it, is getting a straight story and finding out why the information has been contradictory. After that, you have to have faith in your doctor (obviously I know you have faith in God) and put yourself in his or her hands. I do that every time my doctor makes a recommendation. I follow it, because I know that I am informed about anything that leads to a decision point. I went to the nephrologist, although I thought there was nothing really wrong with my kidneys, because she told me to go. I was not happy to find out that my kidney function has been diminished by some aspect of my treatment or course after treatment.

Please let me know in the AM as soon as you know what is going on. I hate conflicting information, and I hate being given a choice of treatment, because I am not knowledgeable enough to know which would be the correct choice.

One other thing Phil....if you were truly FLT-3, why would you even be a candidate for a reduced dose conditioning trial, when FLT-3 has to be given the big guns treatment? I will try my best to "translate" what you are told, but as I have said before on this website, you must not let your doctor out of your room until you UNDERSTAND what he is saying -- medical jargon is USELESS. Never feel afraid to ask 1000 questions. If he or she does not like that, then that is just tough. You have a right to be informed.

Thinking of you, as always,
Cliff

Phil,

Please, as Cliff suggested, get to the bottom of this issue. Get the actual document. Cytogenetic analysis is done separately from BMB, but the material that is used comes from BMB. Your cytogenetics are unusual. The only thing I can tell you is that my father had FLT3 and NPM1. I know a couple of other people who had both of these mutations. I am not sure about having all three. Get the document and let us know what it says. There has to be something in there that warranted your transplant preparation. Transplants are not just offered to anyone, doctors usually have a valid reason for them.

Thank you Cliff and Tashka..

Cliff congrats on your son! Thats great. I really appreciate everyones input. My Onc happend to stop by lastnight for another patient and he poked his head in and said hi, i didnt get a chance to talk to him. I think when i go to the transplant doc this wednesday im gonna try and find get details. My Onc said dont worry about coming tonthe appt. I had sched with him today since ive been admitted.

As you mentioned Cliff if i am FLT3 then why am i being considered for the trial? Only thing i can i figure the "low" dose is still highat enough to do the job. Theyve been kinda pushy about me signing up for it maybe thats why because i have such odd cytogenetics and there wanting to see the results. If im not FLT3 then does it change my risk factor? Im gonna have plenty of questions and im gonna stop by the records dept and get copies of everything. I guess i worry i dont wanna insult any of my docs i do like them a lot but, im not happy about all this confusion. It seems like everyone would be on the same for page and something as important as cytogenetics wouldnt be a hard answer, heck im not a ONC and know you cant use your last BMB to tell a patient if there FLT3 or not. Why would they do that?

Phil,

What bothers me this morning is that I see you had a poor night sleep, judging from the times you posted. This will all become clarified, whether you had slept well or poorly, SO SLEEP WELL each night, even if you have to be medicated (i call it pillulated) to sleep.

When your do doctors (usually a team in a teaching hospital) comes in, ask politely if "I can have a few minutes of your time to discuss my cytogenetics and their implications. I need to have each of the abnormalities explained to me, so that I can have an educated idea as to what I can anticipate. To date, there appears to be a bit of confusion about my cytogenetics. Am I or am I not FLT-3? If so, why was I not informed. I have learned enough about my disease to understand what FLT-3 means. I would also like an explanation about the other markers that I may have as well. I am sorry to be direct with my questions, but I do much better when I am informed." (obviously, something like that....you must be direct with some physicians. They can treat the patient as if he is a dunce, just because he has not been informed or because when he is informed his is being given medical jargon. Even my own doctor, at our first meeting, was using terms I would have avoided and I had to "translate" for my wife, who is a very intelligent person, but not versed in medical terms. So get the info on what ever level is necessary. BUT GET IT!

Phil, you are one strong Dude. Do not let the medical establishment give you the run around. You are not just a number, you are PHIL MEEKS. There are no others! (I hear your wife in the background saying....than God") LOL. We have to find something funny about all of this.

I predict great numbers this AM. But do not run out of the hospital until you become the Albert Einstein of cytogenetics. I mean it.

Cliff

Ok... I spoke to the doc today and got a copy of my "original" BMB report.. here it goes.

I was negative FLT3, I was negative NPM1 which isnt a good thing, i was negative for CEPA which isnt a good thing. It was explained to me that they "think" i had MDS for awhile and it changed over to AML but there is no way of knowing since they didnt catch it before it changed. There going off of my health issues, feeling tired and such and the BMB showed i had 58% blasts cells.
The actual report reads:
Leukemia translocation panel testing was negative for recureent cytogenteic abnormalities. The overall morphology and immunophenotype support an acute myeloid Leukemia; however the blast being negative for CD34 is highly suspicious for them having NPM1 and/or FLT3 mutations. Testing for these mutations along with CEBPA mutation analysis is currently pending and these results will be reported as an addendum. Cytogenetic studies are also pending and will follow as an addendum."

So.. it was explained to me that i need a transplant due to the fact they think i had MDS which puts me in intermediate risk factor. If i had CEBPA and NPM1 then i wouldnt have to have the transplant.

what do you guys think ??