16 replies to this topic

[lnmunn]

Hi   

     Im lauren and was diagnosed with CML ph+ on 1/05/2012. I am currently on gleevec but because of my age they think it is best for a BMT. I just turned 21 and my doctor would like to start working on finding a donor for a BMT and I have no idea where to start and she gave me information but I want to know the best way and where to start. If any of you can help me with this I would greatly appreciate it. I know I need to get started right away because finding my match could be a very long process.

Thank You and God Bless

[mikefromillinois]

Hi Lauren,

Welcome to the community.  I'm pretty new here too and still taking it all in.  My limited understanding is that nowadays only about 5% of folks diagnosed with CML end up needing a BMT - most are managed (well) with meds.  Said differently, BMT is kind of a last result.  I'm curious why it was recommended (so soon) in your case.  I'm sure others here who know much more than I will have some questions.  Please keep coming back.  This site is an amazing source of knowledge and support.

Wishing you good health and many happy days...and God bless you, too!

Mike

[lnmunn]

the med they have me on arnt really working. They are going to try and work on them give me like a super gleevec type thing, but they want me to go ahead and find my match just to be ready.

[Trey]

Almost no Onc would be serious about a Bone Marrow Transplant (BMT) for you at this point without trying the other two approved CML drugs, which are Sprycel and Tasigna (the so-called "super Gleevec" drugs).  And there are other drugs available in clinical trials.  The exception would be if you were diagnosed in Blast Phase CML.  Some people simply do not respond well to Gleevec, but one of the other drugs usually works well for them.

There is no harm having BMT as a backup plan if it makes you feel better about it.  But personally, even if I were your age, I would only have a BMT as a last resort.  There are many hazards and life-long negative effects associated with it.  Here is some more detailed info about BMTs:

http://community.lls.../message/101607

As for the matching process, the docs would first test any siblings.  There is a 25% chance that a sibling will match very well.  If no siblings match, then the Bone Marrow Donor Registry will be searched for initial level matching.  The donor registry does not provide full matching information since full level matching for all potential donors is too expensive.  So even if your docs check the registry, it will not provide full matching information for most potential donors unless they had full matching tests done for some reason.

http://www.abmdr.org/home0.aspx

[lnmunn]

thank you yes it is my last resort but my Onc sent me to Mayo Clinic in Jacksonville to talk with a specialist. I just want a peace of mind and i worry to much lol.

[Happycat]

Hi, Lauren and welcome.

Like others have said, unless you are in blast crisis, I wouldn't be in a huge hurry to do a BMT. That said, wanting to be prepared is understandable. However, I don't have the knowledge to help you, other than to suggest you talk to your oncs and google the National Bone Marrow donor site.

How did you get to the point of BMT being your best option?  Can you share what's been happening?  How high were/are your numbers?  What phase were you diagnosed in - chronic, accelerated or blast?

Traci

[tranier]

Hi Lauren!  Although we primarily call the transplant forum, "home'" now, I want to share my son' BJ s CML journey. To get a more detailed history, you can go to caringbridge.org/visit/bjranier.. I nor BJ would advise any other cml fighter to consider transplant unless absolutely the only and I mean only option...Please be sure you get with a CML specialist to treat this.  There are too many tki choices...I will tell you that transplant does not equal simply a cure...please feel free to email us privately if you'd like more details.

[lymphomajourney]

I would get a second opinion for the reasons the others gave: this usually is a secondary treatment if others don't work although not quite sure for CML (I had mantle cell lymphoma and my first treatment was an auto stem cell transplant, the allo one was done after relapse). Should you go ahead, in Canada, the transplant centre looks after finding the donor should siblings not be a match (my case). Not sure how it works in the US or whether it varies by centre. Good luck, Andrew

[CallMeLucky]

Others have said it and I will reiterate it BMT should be a last resort.  You need to understand why your doctor is recommending this.  Sometimes doctors recommend what they know - keep in mind that CML is a pretty rare disease and you should consult with a CML specialist.  If you speak to a transplant doctor it should not be a surprise when they recommend transplant as the treatment option.

[Pin]

Hi Lauren, welcome It's weird that they want you to go looking yourself for possible matches? But I guess I don't know how it is done! Anyway, I hope they find a different med/dosage for you so that you can keep on going with medication. As others have said, BMTs are hopefully the last resort! Pin xxx.

[lnmunn]

well i have been on gleevec they put me on that hydra something and the was when my wbc was 246 then it went down to wbc 0 and i had to wear a mask after a month now it is going up again they  i have had three opinions on this and they all say the same they want to go ahead and find a donor as a back up i just have trouble with the information they give me they give me so much at one time that i blank and the repeat it but i just watch there mouths move and cant really pay attention i have tried to get someone to go to my appts with me but i have so many and everyone is busy so thats why im on here

[Happycat]

Yes, understand the problem about remembering it all.  You can't write it down fast enough either.  Can you use your phone to record audio?  Might help to be able to replay it all.

Traci

[tranier]

L-

I know that everyone is busy, but I also know that usually if you ask, a family member or friend will be glad to go...I often think we assume it would be "putting" them out...but hear me please when I say this is a 911 part of your life right now!

What state are you in...What hospital are you with?  As soon as this group knows your general local, hopefully they can chime in with some excellent choices for you...Do not delay in getting with a true CML specialist...as a virtual friend I am truly begging you to do this..

[Trey]

If you are saying you were taking both Gleevec and Hydrea at the same time, no wonder your WBC went to zero.  Hydrea and TKI drugs should not be taken at the same time.  I don't see why Oncs even use Hydrea for CML anymore.  There is nothing wrong with simply starting with the TKI drug even when the WBC is very high.  Driving the WBC down too fast usually results in driving it too low as well. 

[pamsouth]

I agree Trey,  I wish I had went straight to Gleevec.  I had 2 million platelets, and was waiting to see if I wanted to do a clinical trial of 400mg vs 800  mg of Gleevec, So I had to wait until then.  So I was on Hydrea for a month, don't remember the dose but I think it was 3 x normal dose.  It brought the platelets down, the side effects were horrid, with rash, swelling, and felt like I had an elephant on my chest and went to the ER.  My blood pressure dropped to an all time low, but my pulse was racing.  My onc would not lower the dose so I did so on my own, in that I could not get rid of the pressure in my chest, until I lowered the dose.

PamSouth

[luvmybees24]

The first choice would be for a full sibling. Do you have any siblings? I have 1 brother and no clue if he matches me but he knows I'd come to him if I needed a BMT.

[Kriso8]

Hi, I had AML and had a stem cell transplant May 19, 2011 from my sister. Unfortunately, six months later I relapsed. They said my sister was too perfect of a match, meaning it wasn't able to recognize the leukemic cells as foreign enough to destroy it. That being said, I was lucky enough to have a match from the bone marrow donation program. My physicians immediately put a search for a match in the donation bank and long and behold I am now in the hospital going through chemo prior to the stem cell transplant this Wednesday, March 7!

I wish everyone th best!