On the subject of transplants

[Guest guest]

On the subject of transplants my perspective is that while there has been

lots of progress made in improving the chances of survival with a

transplant, there is still some way to go. However, I would not be so quick

to say they should not be considered at all. There are thousands upon

thousands of people in this world who have gone through transplants and have

done very well. I have many friends who have had NHL and are doing very

well post autologus transplant. There are many children who have had AML or

ALL and do very well through transplants.

Unfortunately some do relapse which indicates that not all the mysteries of

cancer has revealed itself to us yet. That being said I have known several

co-workers who are post transplant and doing quite well. Some days I almost

envy them. They are completely drug free and happily re-building their

lives and not looking back too much. They go through the usual anxiety that

we go through from time to time as check up time approaches, but being

completely un-tethered by drugs and no real residual side effects to speak

of, they have an opportunity to be free from the constant reminder of cancer

by taking pills and noticing the side effects.

Yes, I have known of many people to who have not made it quite to the other

side of transplant, one was a close friend who I had known for 25 years and

was dxed with CML just 5 months after me. He developed menningeal leukemia

and needed to undergo a transplant. It was a poorly matched MUD, but he had

not other options.

Making the decision to go through a SCT isn't easy, but it is something that

I have spent some time thinking about as an exercise to know what I would if

it were me. In these days of Gleevec, if you are responding well then the

decision is probably quite easy to stay with it. The other options are

higher dose IM, or BMS and now AMN trials. That being said I know of some

patients who just decided that they didn't want a life of drugs and side

effects and went for the transplant anyway, and a few years out, are doing

just fine. If it were me, if I were much younger (I am 48) and had a

perfect sibling match, and not doing well with IM, I'd probably investigate

a transplant.

In Danes case in particular, it is good to see that he is doing pretty well

considering, and I am hoping that this bout of GVHD brings on GVL and gets

him beyond CML.

In all cases it is up to the patient to gather as much information as they

feel comfortable with, keeping in mind that there are some people out there

who do not want to know it all. We cannot " force-feed " information to

people, but we do have a responsibility to keep our minds open and realize

that we are not all the same and approach our decision making differently.

We need to remember that we need to celebrate our differences.

Sometimes we forget that CML is a very complex disease and for all the

progress that has been made, we do not have all the answers..

Peace, Love, and all good things to everyone.

Cheryl-Anne