The Leukemia & Lymphoma Society - Fighting Blood Cancers

This Question is Possibly Answered

10 Replies Last post: Nov 6, 2009 5:49 PM by RickSavola  
RickSavola   8 posts since
Nov 1, 2009
Currently Being Moderated

Nov 6, 2009 4:02 AM

To transplant, or not to transplant ?

   Without going into the complete story, recently my mother was diagnosed with CMML. She is currently on the fourth cycle of the Vidaza treatment. Anyway's we're not getting the kinda results that were hoped for. Her oncologist suggested we go to City of Hope, which we did yesterday.

   I appreciated the doctor telling us like it was, he said because my mom is 68 yrs. old , that he has reservations about her being able to handle the chemo that is necessary before the transplant. When he said without the transplant, at best she would have one year and possibly two. It took my breathe away..... and so now between myself and my brother and my mom we've been discussing what's best. Take a chance on the transplant and hope her body can handle the chemo ? or hope the Vidaza works and if not , clinical trials ?  This is the question I put to you , I'm thinking that if this is the way it MUST be, I would rather her enjoy the time she has and with most of her physical fuction's intact. I don't want to see her wither away in a hospital bed because of chemo. Nothing would sadden me more than to see my mother go, and I don't want you to think I wouldn't want her cured, but at what cost?      Any response to this from anyone would be appreciated..... WIth Respect,  Rick

stagsgirl   109 posts since
Oct 13, 2009
Currently Being Moderated
1. Nov 6, 2009 9:07 AM in response to: RickSavola
Re: To transplant, or not to transplant ?

Hi Rick. I'm so sorry to hear about your mom's diagnosis.  You have definitely come to the right place for support and information.  Unfortunately, there are many people here whose parents have been diagnosed with a blood disease around the same age as your mom.  The results of treatment for those patients seem to vary dramatically.  All I can tell you is to ask lots of questions, get all the facts, talk to your mom about what she wants, and go with your heart.

You seem to appreciate the unpredictability of this disease and the transplant process.  My dad was diagnosed with AML, a type of leukemia, at age 65.  He did very well with chemo and got into remission quickly. Then, we were given a similar scenario as your family was - without a transplant, the doctors felt his remission would only last 1-2 years. At first my dad was going to take a chance and not get a transplant. Then, his three sisters were tested and one turned out to be a "perfect match".  (Do you know whether your mom has a sibling match yet?) I think that was a turning point which caused the doctors to tell us that his odds were slightly better with the sibling stem cell transplant. So my dad went ahead with it. It was a "mini-transplant", which uses less chemo than a full tranplant. They do these mini's for older patients, I believe.  He did remarkably well with that, and his blood counts came back up very quickly.  Now for the bad news.  About 6 months after the transplant, my dad took a sudden turn for the worse.  He struggled with transplant-related complications for about 9 months before he passed away.  Now, I'm not trying to scare you, but the reality is, there is no way to predict which patients will do okay and which will have problems. I feel that the transplant is a roll of the dice. So in a sense, it comes down to what the patient wants to do and how much "fight" they have in them. My dad chose to discontinue treatment at a point where some others might have continued to fight - so, maybe your mom is a real "fighter" and it's worth going for it.

I hope this helps.  Keep us posted on your mom.

Leslie

Tex   3,858 posts since
Apr 3, 2009
Currently Being Moderated
2. Nov 6, 2009 10:35 AM in response to: RickSavola
Re: To transplant, or not to transplant ?

I think it comes down to how your mom feels about fighting it.  I was younger but I wasn't checking out without a fight.  Now, if there are clinical trials, you might want to look at those closely.

 

But I want to suggest you make a trip up to Seattle.  Seattle Cancer Care Alliance has been pushing the envelope on age-related concerns for as long as I've known them.  I went through my transplant with a guy who was about your mom's age five years ago and, so far as I know, he's doing well.

 

I'm having a hard time understanding how the doc is coming at this from an age perspective only.  Many people in their 60s and 70s have great innards and can handle chemo quite easily.  Now, if the doc looked at her heart, lungs, liver and/or kidneys and said it's problematic, I'd understand.

 

I guess that's all I have to offer.  I hope it helps more than confuse things.

 

Blessings

pamd   1,346 posts since
Apr 3, 2009
Currently Being Moderated
3. Nov 6, 2009 11:17 AM in response to: RickSavola
Re: To transplant, or not to transplant ?

Rick, Stagsgirl's response was right on. It truly is hard to predict the outcome of a transplant. Mine has gone terrifically well (so far) with a matched donor from the registry, I'm at 16 months. I did not have any complications at all (age 52 at time of transplant), but every transplant is so different, you just can't predict. As she said, they will probably suggest a "mini" transplant which hopes to be a little less difficult for older people. This is certainly a difficult decision to make. I was an AML patient, so I didn't have a Vidaza-like drug as an option, my choice was pretty clearcut (after I relapsed, allo transplant was pretty much my only hope). When you've got the option to see what the Vidaza does, if anything, that muddies up the waters.

 

I think if I were you, I would read everything I could about "mini" transplants, how they differ from full allo transplants (which I had) and how they are the same, the risks involved, etc. I can tell you that my hospital (U of NE) does them into a patient's early 70s, though I couldn't quote you the success rate. City of Hope is a great hospital (we've had others here go there) but you might want to seek even another opinion and another team's advice, just to have even more information in your arsenal to make a decision. I know this isn't much help, but whatever you all decide, we are here to support you in whatever way we can.

 

Pam

Lovey   84 posts since
Apr 29, 2009
Currently Being Moderated
4. Nov 6, 2009 11:50 AM in response to: RickSavola
Re: To transplant, or not to transplant ?

Rick,

This is a difficult decision indeed. My husband is Day +14 from his transplant and we think he's coming home today.  He's 66 and was dx'd 2 and a half years ago with CMML. In August we learned it turned to AML. I am assuming your Mom's diagnosis is now AML as well? When Burt was CMML they originally said to prepare for transplant. Our insurance didn't cover transplant as a treatment for CMML but they were not ready to begin the actual process at that time anyway so we didn't need to pursue it, they just wanted us prepared. They did watch and wait for about 6 - 12 months and then when it got worse they put him on hydroxeurea which worked for over a year.  In the meantime we did go through the HLA typing of my husbands siblings and he had a match.

 

When the diagnosis changed to AML, that was in fact covered by our insurance and we began to continue that process. My husband never considered NOT having the transplant (I can not say the same). My husband had a week of chemo in August (Ara-C and Idirubicin). The goal was to get him in remission. It didn't quite work so there was much debate as to what to do next, more chemo or straight to transplant.  The consideration for us was that CMML weakens the bone marrow so more chemo would have been hard. My husband had only chemo just before the transplant (no radiaiton) primarily becuase of his age.  There were some days along the way that he wondered why he made the decision to do the transplant. He said he was deceived into thinking it wouldn't be so bad (when I asked him by whom, he said himself). There is no doubt it is a risky procedure. There is no doubt without it, my husband would have had the same time prognosis as your Mom.

 

My husband feels tired and weak and occassionally sorry for himself, but he is alive, is not in any pain and has a good prognosis ahead. As he was preparing to do the transplant I read a lot of bad stories on these boards that had me brace for a very hard experience. Our bar was very low and I'm glad it was as we were very pleasantly surprised at the relative ease with which Burt got through this (at least to this point). I feared the worst in this process, that he would spend his last days in the hospital feeling awful, instead, I sit here writing, telling you I'm taking him home today. We don't know what his future holds, we don't know what our own holds. I can tell you now, I'm glad my husband choose to do this.

 

I've had a lot of support and encouragement from people on this board which has helped tremendously. If I can pay it forward, let me know. Good luck and take care.

KyGuy   1,255 posts since
Apr 3, 2009
Currently Being Moderated
5. Nov 6, 2009 2:33 PM in response to: RickSavola
Re: To transplant, or not to transplant ?

Rick,

 

I'm sorry the hear about your mother.  I don't know much about CMML - I was AML.  I'd check into other opinions as well.  Seattle is a great resource (fhcrc.org).  I had my transplant there almost 2.5 years ago.  Their research is top notch.  Does your mother have other health concerns?  That may play into the opinion you received.  Read as much material as you can on the transplant process.  As others have said, every case is different so the material will sound scary but keep in mind that many have made it through the process.  A mini-transplant is worth pursuing.

 

Vidaza helped me get into remission when I relapsed.  I know that they use it quite often on older patients because it has fewer side effects.  I was 48 when I had my transplant so my story is quite different.

 

Keep us posted.

 

Kelly

More Like This

  • Retrieving data ...