I'm 25, recently diagnosed with pre-B cell acute lymphoblastic leukemia. I'm Ph-, but have a few other abnormalities in my cyto-genetics. I've been through induction, gotten into remission and I'm in a consolidation phase. Currently I'm on a 3-year chemo protocol which will give me about a 50-60% chance of relapse. My hematologist thinks I'm doing great on chemo so far and thinks I'll maintain remission very well. However, she had me meet with a transplant doc to have a Plan B, but after the meeting it seems like a transplant is a better option for my case - not to mention I won't be on chemo for 3 years. Plus the BMT doc projects a 20-25% chance of relapse if I get the transplant. Now I'm in a dilemma: chemo or transplant? My sister is a match for me and having been in remission for a few months makes my chances of accepting the transplant pretty good. But should I risk using "Plan B" to achieve a lower relapse rate or go through with chemo for the next few years and have a higher chance I'll relapse and have to get a transplant anyway? Anyone have any personal stories about long-term effects of either chemo or transplant? Advice? Recommendations? Pros and cons?
I think it's time for a third opinion. There are some obvious cons at this point. Right now, the only thing that could get you is a relapse. Transplants bring a lot of other potential nasties with them. A lot of folks die without relapsing, in fact, as often as not they die in remission.
Now, if the weight of medical opinion is that you should have a transplant, go on and get one. They are doing very well with them these days and, I believe, a majority of us are making it. If they think you need one, you probably do.
Still, that you're doing well and your local onc seems to think you've got a good shot at remission without a transplant, the transplant seems like an unnecessary risk. It just really comes down to which dice the majority of docs think you ought to roll and your personal preference.
The main concern I would have with three years of chemo is how often I'd be pushed back into neutropenia and what the risks of serious, life-threatening infections might be.
Overall, I'm glad my docs didn't give me much of a choice. Made the decision a whole lot easier.
I agree with getting the third opinion. Three years is a long time to go through chemo and a lot can happen in that time frame. Being neutropenic brings its own complications into the mix.
Being young has its advantages. It will help you to withstand the chemo better. At the same time, it can help you get through a transplant more easily. If you go through 3 years of chemo and then need a transplant, your body will have been beaten up by the chemo and might give you a rougher ride.
IPlus the BMT doc projects a 20-25% chance of relapse if I get the transplant.
They gave me a 75% chance of survival the first year. It was 85% the second year. I'm one of the rare cases that relapsed after 4 years (less than a 1% chance) but was able to come through that (obviously).
I didn't have a choice about the transplant but I can understand your dilemma. I was 48 when I had my transplant so even if I had had a choice my age would have weighed heavily on my decision. I think the best route is to get a third opinion. There are a wide variety of complications that can come from a transplant. They may present those complications to you. Keep in mind that you may or may not experience them. Either way you go, your path will be based on your body's chemistry so gather as much information as you can.
My biggest decision was where to have the transplant, I gathered information on different centers and decided to go with the Hutch in Seattle. I based the decision on the information I read about the different centers, the opinion of my doc (he recommended the Hutch), and I'll admit a gut feel that I was supposed to go to the Hutch. Once I made the decision I decided I wouldn't play the what if game.
My husband was 24 at the time of dx 12/22/10 with pre B ALL ph-. He went into remission immediately after induction. His brother was a match, and that was the deciding factor for his doctors. They all agreed that because Josh was Nate's match, transplant was the best option. It gave him about a 75% chance of long term survival (including all the nasty stuff like relapse, GVHD, infection, etc.). Nate had his transplant on 3/2/2011. It went off without a hitch. He recently had his one year appointment and BMB and all is good in his neighborhood. 100% engrafted, 100% cancer free, etc. He deals with some minor chronic GVH issues, but the biggest struggle for him now is his mental health.
No one knows for sure what their fate holds, but for Nate and our family, transplant was the right decision.
I definately suggest getting another opinion on what to do from the people who know best.
Also make sure, like Kelly said, that if you do opt for BMT, to be comfortable with the medical facility. Nate had his at Mass General in Boston and I think they are the #3 hospital in the country, and the head of the BMT team is the #1 hematologist oncolost rated in the country. But most importantly, Nate liked his doctors, his nurses, and felt comfortable.
Best of luck!
It certainly makes it easier when they agree.
It is normal to be nervous about the transplant. Nate and I were extremely ervous at first, but then as we got closer to his admit date we just wanted to get it the heck over with.
I asked Nate and he basically said to just be patient with yourself. Be prepared to feel like crap and to be scared and lonely and tired and all that bad stuff. But keep your eyes on the prize. bring things to distract yourself. Nate had videogames and he also had me get him a remote control helicopter. He spent hours sitting in bed attempting to fly the darn thing without it crashing into the wall. Eventually it just got stuck under the treadmill in his room and he called it a day lol.
As for me, I can only advise you to what I WISH Nate had done. I wish he had done PT more when they asked him to. I wish he walked on his treadmill and got out of bed more often, like the docs and PT wanted, so that he would have recovered faster. But he just didnt have the energy.
Please keep us all posted on your journey and let us know when you have questions, concerns, fears, etc. This forum has been a godsend to me and many others. We're here for you.
Find out as much as you want to know about the transplant process. Are you going to have a BMT, SCT or what?
That's about all the homework I'd recommend for now. It's easier to answer questions than launch into a monologue about what the process is like. In addition, you get information that's relevant to your concerns and not a bunch of drivel that you couldn't care less about.
We're here to help support you however we can. Let us know what you need.
I think the transplant is probably the smarter idea. I'd certainly weight the opinions of a transplanter and a hematologist heavier on this particular subject than I would an onc that deals with the whole schemer of cancers. Nothing against the onc, just that the other two should know a lot more about this specific type of cancer and its treatment.
I am a survivor of adult ALL who was diagnosed at the age of 30. This is a rather odd dilemma that a remission places us in. The answer is as much an individual as our disease. However, I think three factors are of greater importance than others. First, your age and overall health. Younger people with above average overall health can take more than an older person in terms of treatment. Second, the severity of your disease. All cases of leukemia are, of course, serious, but those with unfavorable cytogenetics stand a greater chance of relapse than others. Third, the ease with which patients obtain a first remission. Studies show that cases which respond to chemo and patients who achieve remission after the first round, stand an improved chance of achieving another after a relapse. Going into transplant in remission is a very important factor in the final outcome.
In my case, I achieved remission after one round of chemo and went on to complete 8 cycles of consolidation therapy. I had a bad case of CNS disease and that is where I relapsed during the maintenance phase. Two and a half years after my initial diagnosis, I had a successful BMT from my brother. I am 8 years out from the transplant doing well. Had it not been for the CNS issues, I likely would have made it through without the transplant. This, I suppose, is where the individual natures of our diseases begin to show.
Hope this helps,
Thanks all for your support! Just more of an update: I'm getting a SCT from my sister sometime in the beginning of June. I've been in remission since the middle of January and have completed two cycles of consolidation chemo. My hematologist and BMT doc want me to finish out this third cycle of chemo before doing the transplant. So far everything looks pretty good and they expect the transplant to go very well. I have abnormal cytogenetics, but not the "bad" abnormalities, and have been handling the chemo very well. However, I'm still terrified of the worst case scenario - the transplant won't work or I'll get a really bad GVHDs. Did anyone get any long term issues from a transplant?
A lot of us wind up with long-term issues but only a very few of those issues are significant to our quality of life. To be clear, there are a few people who post here who've had a really rough time of it over an extended period. Most of us don't.
Yeah, the worst case scenarios happen. But they don't happen often these days. I wish you smooth sailing.
One thing to keep in mind with the GVH is to make sure that you keep your medical team informed. If you notice anything out of the ordinary, don't hestitate to mention it to the team. Often people will ignore small changes or minor pains that can develop into something bigger. Sometimes we don't want to be considered a whiner but after your transplant, it's important to stay on top of things. Clue your caregiver into this also. You will be in a weakened state so your caregiver may notice things before you do.