23 replies to this topic

[alexamay09]

Hi everyone

I am hoping to draw on your expertise (especially you Trey if you don't mind).  I have had my 9 month cyto-genetic blood tests done today so will have to wait a few weeks for results.  My last at just over 6 months showed 12 per cent bcr-abl.

My doc has arranged for me to get an appointment with the bone marrow transplant team in Glasgow.  She knows full well how I feel about bmt, but insists that they feel I should meet the team so that we have things in place if 'things don't go as well as we hope'.  The team are going to send me out an appointment which I think will be for the 2nd half of July as I am going off on holiday at the start of July.  Apparently the first meeting consists of having blood taken and then a discussion with the doctors.  My daughter who is pretty savvy is going along with me.

However, I really need to know what questions I should be asking during this 'discussion' and I thought you might help me with this.  It would be much appreciated.

Alex

[Tex]

A few years ago we asked forum contributors to submit questions they wished they'd asked before transplant.  I have the compiled list of questions and will be glad to e-mail them to you if you'll e-mail me (so I can reply).  My e-mail address is in my profile.

Blessings

[Trey]

You should first read the following overview I wrote as an introduction to bone marrow transplant:

http://community.lls.org/docs/DOC-1375

Some questions would include:

1) At what point would drug treatment be deemed to have failed and transplant become necessary?

2) Would preliminary matching be done now and full matching done after a transplant decision?

3) What is the minimum level of matching  used for transplants? [NOTE: Will likely put it in terms such as 7/10 or similar.  Read link above to understand the HLA allele matching issue] 

4) What specific BMT protocol would be used?  [What types of chemo, radiation, etc would be used?]

5) What is the survival rate for transplant for all types of leukemia at your facility?  What about CML only?

6) If I were your loved one, would you proceed with a BMT?  Under what conditions?

[alexamay09]

Thankyou Tex and Trey. I have now a better idea of what to ask. I am hoping that before too long we will have ponatanib and bosutinib in the UK, so their will hopefully be other options. I know Glasgow favours the ric transplant and i wouldnt consider a full blown one unless it offered the only hope. Alex

[Tex]

I'm assuming you have CML?  I really don't know what type they might prefer over there or even here, really.  They look at a mess of stuff before they even sit down to talk about the treatment.  And it is common practice over here to have an interdisciplinary group docs sit down and discuss each patient to decide if, A) they are indeed a candidate for transplant (the criteria doesn't seem to be too stiff, few are ever turned down and you'd have to be on your last leg before they'd even consider you a non-candidate.

Still, having the group of docs discuss the case helps them come up with what sometimes almost seems to be an individualized conditioning regimen.  I hope that's common practice over there, as well.

I was in the joint with a CML patient who was doing great the last we heard.  I'm very sure he had a full myeloblative.  The docs do sometimes offer a choice of conditioning but that's really rare.  If an auto is possible, you do that.  If it's not, you go with the full myeloblastic conditioning.  The way they (docs)/we (patients) tend to look at it is that full myeloblation is always there if the auto fails but it's always better if you can keep your original equipment.  It's a pain in the butt but you want to take the least life threatening course of action whenever possible.

So, I guess I'm saying, "Yeah!  Take the auto if you can and have to."  One thing I would hate to ever have to do is go through transplant again.  But I would in a minute if the docs thought that was my only option.

Just remember that with any major risk like this, you're rolling the dice.  There is simply no way to predict the outcome.  I hope they'll be better at that someday.  Hell, I hope they'll have a better way of resolving all leukemias than this brutal process.  But it's very survivable these days.  They get better all the time.  I've been posting here over eight years now and I've witnessed the survival rate improve incredibly since the first group of transplantees I got to know.

I just posted some links on my response to Trey with the edit.  You  might want to go back and look at those.  The Be the Match organization is a top place to learn about anything and everything related to marrow transplants.  Then you come talk to us when it blows out your brain.

[Susan61]

Hi Tex: My experience with getting a BMT, was after failing the initial treatment of Interferon and Ara-C for 4 months I was immediately sent for 2 opinions for a BMT.  They put me through all the preliminary testing, and I did not have a sibling match.  I was then put into the Unrelated Donor Registry.  They found a match for me, but at that time they were doing the clinical trial for the Gleevec.  I refused the BMT, and went into the trial.  I have had CML now for almost 15 years, and been PCRU now for 11 years next month provided my PCR test shows PCRU again.

   My advice is to try the different TKI drugs before proceeding to a BMT as long as you have gotten to a cytogenetic response.  Alexa said she has not been able to get to a cytogentic response yet, and I assume that is why they are pushing to the BMT for her.

   I wish you the best Alexa in whatever they decide to do.

[mariebow]

Tex what was the one most worst side effect or  should I say the worst experience for you associated with the your transplant.

[alexamay09]

Hi susan

I will exhaust all options first. Am in no hurry for bmt. I have had partial cytogenrtic response.  12 per cent bcr abl at about 6.5 months. Had my 9 month test on Friday. Hoping the downward trend will continue. Considering I was 43 per cent at 3months I thought that was good progress. Anyway if I do stop responding to sprycel I want another crack at tasigna. And I hope ponatinib will be available here before I evrr need to consider bmt. Then in a few years bosutinib should be around in the UK.  I wouldnt consider a full blown bmt anyway. The risk of it failing is not one I want to deal with. I read about a study too where 23 patients had ric transplant followed by gleevec for a year. Only 7 were free from any sign of CML at the end though 19 were alive 3 years later.

Anyways I will resist transplant till therr is nothing else for me to try. I will ask quite  a few questions whrn I meet the team though, and now have a bettrr idea of what is important.

X

[Tex]

I want to apologize to all of you.  This site is so slow I've taken to finding threads off the main page because the various forums take forever to show up on this pitiful software.  Thus, I found a transplant piece but didn't realize it wasn't from the transplant forum.  Not sure what I want to apologize for but it's probably just being unaware of where I was.

Having gone through a transplant, I would prefer to get my information on it from someone who's been through one.  Well, actually I'd prefer to get it from someone who's done many.    The National Marrow Donor Program has excellent material on all aspects of every form of transplant and the diseases involved.  They'll give you a step-by-step, if you want one.  You can also find out a lot of information about the hospitals in the US.  I don't know if they have info about any hospitals in other countries but they might have some links. 

You can find some info on the centers at http://nmdp.org.  That's just a referral portal to the National Marrow Donor Program (the US registry) these days but it still has a link or two you might find interesting.  For info about specific hospitals, you might just start off at http://bethematch.org.

I apologize for the deleted post.  When I realized where I was it seemed terribly inappropriate.

I will try to mind my manners better when visiting in the future.

[Tex]

I'm really stupid about CML.  I assume PCRU is a good thing?  I hope?   The only experience I remember having with a PCR was making sure my CMV hadn't reactivated when I was on immune suppression following my transplant.

Transplants certainly aren't necessary for everybody.  And they are -- more or less -- last ditch efforts when it becomes apparent to the docs that the meds aren't working or aren't going to work/  Of course, the patient can disagree.  There's a guy over on the AML board (well, he posts on his anniversary every year now).  He was told he needed a transplant or he'd die.  He declined and, as I mentioned, he let's us know he's still chugging along every year.

You might never need one.  I hope you don't.  They're more survivable these days but it can still be a helluva ride.

Speaking of survival, since I'm here I'll mention today is the ninth anniversary of my transplant.  My wife seems to still be in favor of me living so I consider this a good thing.

Blessings

[Tex]

The one worst thing?  Good question.  Great question, really.  There are so many events and categories to choose from.

I'd say the most miserable I felt was when I was developing graft vs host disease (GVHD) of the gut.  The most frustrating has been the fact that I'm still fatigued over half the time.  However, one thing to always keep in mind is that everyone's transplant experience is really and truly unique.  When we start sharing war stories, it's rare that someone chimes in with "Yeah, that happened to me, too."  Even when we have the same symptoms there are a myriad of issues the symptoms could represent.

Are you considering a transplant?  If so, I hope this helps.  And I want to let all of you know that when transplant becomes an issue of discussion, we have a lot of very supportive folks on the transplant forum who will be glad to help walk you through this.

Blessings

[Tex]

alexamay09 wrote:
Anyways I will resist transplant till therr is nothing else for me to try

The one thing I want to point out is that a transplant will only be helpful for as long a time as the disease doesn't progress too far.  Once it gets to terminal, transplants most likely won't be there as an alternative.

That is the devil in the machine.  It's a completely unknown variable we have to figure in to our decisions.  I mentioned Donnie, the non-transplanted survivor.  On the other hand, there is every reason to believe I would have been dead as a doornail for at least eight years now if I'd not had mine.

Blessings

[Susan61]

Hi:  You understand the whole process, and your going in the right direction before considering a BMT.

I wish you the best on your next blood test that you continue getting where you need to be.

Not everyone reaches the same plateau at the same time.  Some are slower than others, but as long as you have the proper care you will be okay.

Susan

[Susan61]

Hi Tex:  Once you get to a cytogenetic response, then you can get tested strictly through your blood work with no more bone marrow biopsies which I have done now since 2001.  I only get a PCR test now to check my status every 6 months, but I still get my routine blood work every 3 months.  Once you have gotten to PCRU, it means you are undetected.  It does not mean you do not still have leukemia cells floating around, but they are too small for them to detect.  At this point your chances of relapsing are very minimal.  That is why we continue to take our TKI drugs to keep the CML under control.

    When I went to New York to get into the clinical trial for Gleevec, I sat down with the doctor who was running the trial.  He said to try the Gleevec before trying a BMT.  He was very blunt with me.  He said with a unrelated donor, and your age and other health problems you will not survive a BMT.  He said if the Gleevec does not work for you, then we will cross that bridge when we come to it for a BMT.

   Congratulations on your 9th Anniversary of your Transplant.

   Blessings to you too.

Susan

[mariebow]

No Tex, I do not have to get a transplant.  And I hope I never do, but we never know in this life what will happen to us in the future.  I just hope and pray I never have to go that route, or any family member, but knowledge is a good thing.   I never would have thought I would have gotten leukemia either.  I have read posts of some who have had them, and it is something to hear about their journey.

[mariebow]

Congrats on your 9th year.

[Tex]

Oh, yes, co-morbidities can really mess up the transplant approach.  With my particular AML all the docs felt that it would just keep relapsing until it became refractory.  Then it would be too late to do one, which is why I emphasized that these things need to be taken into consideration.

I don't know what your age is, they are doing transplants on septuagenarians in Seattle, or they were the last time I checked.  But other health issues make the whole conditioning chemo an issue, even before they get into all of the issues that can crop up during recovery.

I'm getting the PCRU is similar to NED with the acknowledgement that the disease is actually is still present.  It seems like that has to be a good place to be so congratulations.  The types might be different and the dangers varied but we're all in this blood cancer crap together.

Blessings

[Tex]

mariebow wrote:
I never would have thought I would have gotten leukemia either.

Yeah, I think that catches most of us a bit off guard.   I hope you never need one either.  It's good to know there are extraordinary efforts they can take on our behalf, though, should they become necessary.

Blessings

[CallMeLucky]

Tex

With CML, they have a few levels to track how we are holding against the disease.  First they look at blood normalizing, then they look at cells under microscope.  CML is driven by a single genetic mutation (at least in the chronic phase, blast phase is like AML or ALL and then there are many mutations).  The mutation is a translocation between chromosome 9 and 22 (i.e. the "Philadelphia Chromosome")  Once they can't find the Philadelphia Chromosome under a microscope anymore, they move to molecular testing - PCR.  The PCR looks for the oncogene produced by the Philadelphia Chromosome, BCR-ABL.  CML treatment progress is measured by 10 fold decreases in BCR-ABL level.  Ideally you want to achieve a 3-log reduction.  So if the typical CML patient is 100% PCR on diagnosis, the treatment goal is to get to 0.1%.  The PCR is only so sensitive so once you get to about 4.5 log reduction the test can no longer detect any BCR-ABL, it is still there, but the test can't pick it up.  In this case the test result will say "BCR-ABL negative or undetectable".  This is where we get PCRu = PCR Undetectable.  It is the best we can hope for at this point and it means the disease is under control with drug therapy.  As long as we hold the disease to a low level, in theory we can live a long time with the disease, the catch is staying on the drug and holding the response.

[alexamay09]

Yes congratulations Tex. I know that transplant is the best option for some leukemias but reckon for cml it should be on the back burner. I take on board what you say about timing though. I read yesterday that ponatinib is in the process of being licenced in Europe so if need be that would be my next choice of treatment. Then hopefully I can hang on for bosutinib. Interestingly they are trialling a vaccine here too.  Meantime I am assuming that as long as my bcr-abl count continues to reduce that is good and there would be no reason to rush into anything.

Alex