25 replies to this topic

[AliceJane]

Thur I saw Onc. My FISH test was back.....0% leukemic cells. Great news!

Going to lab this wed for deeper test. But she also said they are going to do test to see if I have markers for favorable outcome with bone marrow transplant.  To say I was shocked is understatement.  I am 57 was diagnosed in Sept 07 and understood from begining I was too old for this. She said new studies show age not factor they thought for favorable transplant, new markers are better. So they are testing me.

At first I was super excited, to have transplant and be done with CML, What could be better? But, more than one person has asked,

"Why, you are responding to this med, aren't transplants risky"?

Anyone know anything about transplant for 57 yr old? Markers changes this? I don't know anything.  I don't even know what to ask.

Very confused,

Help!

please

[AliceJane]

Thank you Billie. I have plenty of time. I won't see Onc again til Dec 15 and the tests take 5 weeks to get back and because of Thanksgiving holiday they may not be back by then.. Plus, she told me depending on what test say, I will see Onc transplant specialist who would do this. It is major university Onc group. And my Onc has 13 or 14 other CML paitents, one of them was in original Glevec trials. She did say, it is new cutting edge info and they would be using my own stem cells for transplant. But in case markers are favorable need to know a little of what to ask.

This came out of left field. I was stunned and did not know what to think or say when she mentioned this. I am still stunned and know nothing, but mind is going 90 to nothing.  And before any decision is made I plan to take my daughter with me for back up and support. I don't think this will be a decision I can make alone or quickly.  lol, first stop here!  This is my go to place for questions. Mostly I choose to take meds and ignore CML as much as I can.. I am sick of it.

And all this may be for nothing if markers are not right.

thank you again.

[ritan/]

i can't imagine doing this. even assuming the very best chances, your risk, if you have a matched sibling: 70-90% survival rates. if it is unrelated it's worse.  i'm sure the rates are perhaps better when using your own cells, but i'd still have many many serious questions about WHY this is even a consideration.

http://emedicine.med...rview#aw2aab6b7

youth and being currently healthy both help (ie: your disease is in "remission" as much as CML gets is a plus apparently). don't get me wrong, if things weren't going well, i'd probably feel differently. and i have moments where i desperately wish to not have CML anymore, but i'm not sure i'd be willing to take that risk to get rid of it.

[pammartin]

I am very new to the site, but the only thing I could think of is a precautionary measure or just in case in the future.  There are many people I have talked to that believe a bone marrow transplant is the answer to all CML/Leukemia problems.  I for one am hoping the meds work as long as I do, although there is success with transplant, but if I can take a pill and control this evil I will do just that.  To be honest a transplant frightens me tremedously, the odds are less than perfect.  If I would have to have this done in time, I would, but for now I will pop these dreaded pills and thank the Lord they are working!

Best of luck, I agree with Billie, Trey will be giving you his two cents (worth a heck of a lot more) in the near future.

Pam

[mike43147]

Alice Jane,

In my opinion a transplant should always be the last treatment option.  If you failed the 3 FDA approved drugs, can't get into a clinical trial and have a matched sibling donor then go for the transplant.

I am 55 and failed 2 of the 3 drugs.  Tasigna is holding it's own against the CML.  I have a matched sibling donor and I am not looking forward to a transplant anytime soon.  A stem cell transplant has been discussed with 2 oncologists in the last 17 months.  I went through the entire pre-transplant process before the transplant was put "on hold" 30 days before the scheduled stem cell infusion.  A stem cell transplant has many risks and no doctor can say 100% positive that the transplant will cure your CML.  It's true the survival/success rate is better now for people in our age group but it's not 100% yet.

Good luck

Mike

[CallMeLucky]

So far yoru doctor isn't doing anything wrong, just being prudent.  I was tested for sibling match with my brother.  Turns out we are HLA identical.  This is a nice insurance policy and as my doctor said "we have no plan to use this information, but it is good to know in worst case scenario".  As long as the doctor has not said "you need a transplant", in which case you should always get a second (and maybe third) opinion before embarking on such a difficult procedure.

With today's treatment options, transplant should be the salvage option when all else has failed.  Should you ever get to that point, knowing what your options are ahead of time by doing some preliminary testing now will make you better prepared.  I personally sleep better at night knowing I have a fall back plan with my matched sibling.  I have no intention of ever calling in that card, but I know it is there.  So I don't think there is anything wrong with the doctor doing this testing just to see what your options are.  This of course assumes the testing is covered and you are not paying for it out of pocket.

[LivingWellWithCML]

Hi,

It is my understanding that transplant is the absolute *LAST-RESORT* treatment option, and that's only if all of the TKI options fail and/or CML progresses rapidly and behaves more like ALL.  And remember that there are three TKIs that are FDA approved, and 3rd generation TKIs are not far off.  A Phase III clinical trial for one of them will be reported on in December.  So much progress!

I would also be very careful when assuming transplant as the end-all-be-all cure for CML ... because it's not.  Note that transplant is needed to save lives (and we are following several on this board), but there is a real risk of disease relapse ... even post-transplant.  @Trey can comment on this in more detail, but I follow one CML post-transplant case closely (because this patient and I share the same CML specialist), and the doc started this person on a TKI several months after the transplant as a relapse precaution.  So even with a transplant, one would likely continue on with a TKI anyway.

With all of that said, BMTs are amazing, life-saving procedures - and the more I learn about them, the more I am in awe of the fact that we even know how to do this.  Amazing.

If you are FISH negative and have a low or undetectable PCR, and you are handling TKI side effects - then it's hard to imagine that you'll ever need to be considered for transplant, especially since (I assume) you've been on treatment for about 4 years.

Sounds like you're doing great!

[klassykat54]

I too have been told I need a stem cell transplant. I have CMML. the prognosis for this is a lot less than CML. I have been recieveing chemo for 10 months and am doing geat. Good blood counts and no blasts. I want to just stay on the chemo, or maybe take a break from it since I am in remission, but the doctors are pushing hard for transplant. They found a 10 out of 10 mach (unrelated). then the doctor I had been seeing is no longer  going to see adult patients and introduced me to my new doctor. I think if I said boo he would be afraid. I am afraid of him. He seems so niave. Depending  on what day I have talked to the doctor my chances of survival are somewhere between 51% - 82%. I am 57 and other wise in good health. I work 12 hours a day. I don't know if I should let the doctors push me into this. Any thoughts or comments?

[Trey]

AJ,

Assuming you mean that it took four years to reach CCyR, then that is certainly not speedy.  But you made it.  As long as you continue to now show stable or reducing PCRs fro  now on, then you should be fine.  Maybe you had some high risk factors that made the Onc want to look at the transplant option as a back-up plan.  In that case, nothing wrong with a back-up plan as long as that is all it is.

Although your age would not disqualify you, the risks increase with age of the patient.  Your risks would be significant.  That is why a transplant needs to be a last resort option for CML patients, since the drugs will work for over 95% of us.

You may want to read this:

http://community.lls...e/101557#101557

[Trey]

K-Kat

Unlike CML, CMML can take several forms.  Each type has its own treatment regimens.  I assume you have looked at the L&LS info pamphlet:

http://www.lls.org/c...df/cmmljmml.pdf

You may also want to read my posting on transplants:

http://community.lls...e/101557#101557

[AliceJane]

My history is that Glevec, was having good response for about 9 months, then in one month white blood cell count went to 36,000 from 12,000.from 9,000 previous month. Then went to Sprycel,  6 months after Sprycel my  lung collapsed from fluid. I had been doing great and this was near end of when I finally got to not see Dr for 3 months. Then went throught a year of lung drainings as out patient and ended up in hospital with 14- 16 liters of fluid on each lung.

week on chest tube, then they glued sac to lung, sent me home with fluid still on left lung. Lot of others things happened, I changed Dr. That one was awful.

This Dr. kept me off meds til Feb, all fluid drained from my lung on it's own. There is still some left in my right, trapped she says from not draining all before the glue. We have to watch it, I may have to have it drained at some point. But no new fluid. I was on half dose of Tasigna from Feb til May then full dosage and My FISH stayed at 6% from May til last one done in Oct. %. She did not say this is back up plan. I am so confused. Maybe I misunderstood. She did say something about giving me all options. As I said I was stunned. I did not know what to ask. I would be donor. after they got stem cells from what she referred to as scrubbed bone marrow.

well hell fire and damnation. I am so sick of this. I have not been well or able to halfway function in over 4 yrs. I am worn out. Side effects have been awful with each drug. Dr said some are more susceptable and I seem to be one of the ones having most trouble.  During last month I had some of best days I have had in forever. and I thought this was good news, chance at no more CML. crap.

[AliceJane]

Trey, I am so sorry! I came back to say thank you.  You have always helped me, answered my questions and been patient with me. I found this site a yr or so after my diagnosis. I have not learned the terms or the tests. I just run here when the next crisis hits.

In my defense, I am cancered out. My step son fought 3 yr battle with it and we lost him.  Few years later my husband was diagnosed with lung cancer, 2 yr battle with it. Then when he died I was "greiving my self to death" or so the Drs told me. Til they wanted to commit me to mental hospital and I threw a fit and told them I was sick. While they were humoring me they found white blood cell count was 367,000. In hospital I went, to have DR come in and tell me at 10:30 at night, woke me up to tell me I had leukemia. It has been rough ride since. I just can't with cancer. I was on top of the others but I am so sick most of time. I am not a good patient, I just emotionally cant seem to deal with this.

But you are all here for my next crisis, especially you Trey.

Thank you, Thank you. I am so grateful.

alice

[Trey]

So the Onc was describing an "autologous" or "Auto" transplant where they take your own blood stem cells, try to scrub out the leukemic ones (a shaky proposition), destroy your existing bone marrow, and re-introduce your own blood stem cells to try to start over, hoping they cleaned out all the leukemic stem cells.  Not a very successful process.  Most relapse.  And you still need to wipe out your marrow, which is the risky part of the process.

That is dumb, especially since you are responding OK to drug therapy, just having a long road due to issues requiring drug breaks. 

[jgibbons]

My wife had an auto back in 07' for ALL PH+ and relapsed two weeks shy of one year out.  She was unable to tolerate Gleevec.  She had only just started taking Sprycel when she relapsed.  She had an allo just four months later.  Its been three years since with a lot of complications.  She was 32 when diagnosed.  I'd say if your tolerating the meds stick with them I'd avoid the transplant road unless you absolutely have no choice.

[ritan/]

that's my thought. the only thing i can imagine is that if you are continuing to resopnd very poorly to meds, they may be concerned that they have to do something before you can't take Tasigna anymore.

[AliceJane]

After reading, I am thinking.

She said, "We want you to have all options"

This is first time I have had 0% on FISH. She wanted to do deeper test, first one. I think. She has been surprised at tests I have never had. She was taken aback when I said I have never had bone marrow. She came in as my Dr last Dec, she was taking no more patients but took me on as fav to another Dr after he took me over after treatment of my ONC in hospital. He was  gastro Dr. who showed me so much compasion, and called me at home at 6:30 at night after my Dr got mad at me for questioning him and sent me home ASAP.  He never criticized the other ONC. but he went above and beyond to help me find another ONC. Has his assistant to come in room call and find one and concentrated on finding me on that was good and close to me. She comes to my town one day a week and they were excited cause she had so many CML patients. When assistant found her, they kept me in his office extra hour finding her and he talked to her to tell her circumstance and she took me on. He even had assistance call and ask another Dr about her.  Then she took me, Rushed appointment, worked me in ASAP

sorry, I have to include some history. It has been very rough road in lots of ways. I am still traumatized from way last ONC treated me and that he stood at end of my bed in hospital and lied to me amoung other stuff that I just can't get into. Trying hard to forget..

Anyway, back to subject at hand. She is sending me for my first deeper than FISH test that we know of and she said while you are in Memphis at main lab we will do tests for markers for bone marrow transplant, we want you to have all options. I got excited and asked about doner. She told me and repeated, we want you to have all options.

I bet I overreacted, thinking I might get to have no CML when in truth this is just back up, for just in case.

sorry.

"tests that we know of"  When I changed DR. he ignored requests Dr and me for his records.  My new Onc asked me how I wanted to proceed:

She said, I have all tests and results from your hospital stays, At diagnosis and for Chest tube and gastro procedures. I can start from new with this and we can go from there"  I chose to just let him be. I just can't with him. He was my husbands onc and based on what happened to me and things I remembered with his treatment of my husband. I now believe my husband died to soon. He ignored me then only I already had CML and did not know it and did not push it after my husbands death and me getting sicker and sicker. He and the 2 other DR. that were also my husbands. One had already dropped me as soon as CML diagnosis hit and she found out she was wrong and I was not grieving to death. Then my Onc buddy the gastro sent me home with celiac diagnosis. HE was wrong and by time I was in hospital I had lost 60 lbs and was starving to death from thrush that he missed that had spread to my esphosgus(sp) all way to my stomack. These three DRs may have cost my husband his life and almost cost me mine. But I did not put it all together til I was in hospital last year. I was just so sick and greiving too.

again, sorry, I am trying to explain best I can. It is a mess, and I already had PTSD from childhood trumas and this tiggered another bout with that...... lol, I am a mess. But lucky to be alive, I don't think that is overstating what happened and why I am having such bad time dealing.

please be patient with me and thank you all.

Message was edited by: Alice Decker about :tests that we know of

[ritan/]

i totally dream of being able to say "i used to have leukemia" too. so i totally get it. and honestly, one of my concerns about my current onc is that in spite of having 5 siblings, 4 of whom could undoubtedly donate if needed, he has never even suggested they get tests to see if they are matches. it's as if he wants to assume that nothing will go wrong. (i'm not good at that reponse).

if that is what is going on, is: hey let's find out if this is a feasible option--that's GOOD. you should know all your options. and honestly, it should be that way. for you and for all of us. we should be told about hte options for treatment, told about the risks etc, and offered lots of support in making treatment decisions.

HUGS.... i'm so glad you're getting good treatment now, with an onc that is listening to you!

[simone4]

Hi Alice Jane.  I am so sorry you are going through this turmoil.  Is the Tasigna

making you sicker?  Can you live with it? This are questions I ask myself about

Gleevec. If you can live with the side-effects then maybe that is your best option.

You have gone through so much in your life, I don't want to see you in another

mess with these doctors. I think of you often and our conversation about "hollering"

out to you to bring you back.  I'm glad you came back to the boards, because

everyone here wants a good outcome for you.

I took care of both of my parents

while walking around with CML for a year.  Two weeks after the burial of my papa,

I was dx. He was a cardiologist and kept telling me that I was so pale and tired,

that I must get checked out.  I couldn't stop, just like you with your husband.

You are tired and weary of this, I know.  Just stay near, o.k.?

Simone

[AliceJane]

Hey, yes I remember, lol, good to hollor at you again.

I know it is my retriggered PTSD that causes me to avoid CML. I see it as root of all evil, better it than person, I guess.

Anyway the bad onc did not want me on any meds, at all. Except what he gave me . But I talked to my new ONc.last week about this and she said, that is NOT my choice, you go back and get you therpist and new Dr (my old physc. was wonderful but as moved on) Tell him about CML, give him my name and we will work together to find you a med to take. She said you have been throught enough, and most of it you have white knuckled by yourself. NO more! and she scolded me cause I had not told her how bad I feel. She said, we can work on anything but I have to tell her. See that is thing, old Dr had me trained not to "bother" him with other issues. His attitude, meds where keeping me alive, be grateful, indure side effects.  She said we will know where we are when tests come back and then we need to work on having better quality of life.

I am exhausted all time, that may be because I need anti depressant or side effect of combo,  I hurt all the time, that may be side effect or it may be cause he took me off all meds and it is Fibromyalgia pain coming back.  I can barely walk, that we think is cause I have had no treatment for degenerative disk disease since CML diagnosis. Plus we still have locked in fluid to deal with, cause he took me off of chest tube before it was all drained. So I get out of breath and can't do much. Taking out garbage has me gasping. Tagina hurts my stomach, but I can adapt, I learned to take it with Sprite, that helps me burp and doesn't hurt so much.

New Dr wants me to use all Drs and resources at hand. This is new to me. Cause I had not talked to her about all of this til last visit.  LOL, I have trust issues. I had been scolded by former Dr so much.  She said we have some "mystery solving" ahead of us. But she hugged me and said "We are going to do all we can to have you feel good again" She is concerned about fluid trapped in lung, but we are watching it and she thinks I need a break and to feel better before we do anymore procedures. She is very concerned about all I wnt through and wants to give me time to get stonger and feel better, if we can. But she seems to be very concerned that the fluid problem will come back. She says I had one of worst cases that she had ever heard of.

I can live with all I have now. As long as I live. My motto and I live it is;

Life is NOT fair, shit happens, but suffereing is optional.

I don't suffer, I amuse myself with books and movies and my grands. But all in all, I am bump on a stump. 

Other stuff, but surprisingly, I am happy most of the time. I know that sounds odd. But I have learned to adapt and find humor in almost all of it.

.