I've got a CLL buddy who has just been diagnosed with myelodysplastic syndrome, which is basically bone marrow failure. I'm not clear if this is transformation of her CLL or a secondary malignancy. Either way, she is facing a decision about undergoing an autologous bone marrow transplant.
She is in her late 60s which is on the cusp of eligibility for the procedure. She is physically fit, eats right, and has no other comorbidities that I know of. She has outstanding care at Lombardi Cancer Center in Washington DC and at Johns Hopkins in Baltimore.
She has been given the grim survival facts and is pretty depressed. She is more worried about surviving the BMT than anything else.
I am looking for positive BMT survival stories to help cheer her up, especially for older patients in their late 60s. Anybody have a good story to offer to her?
Thanks!
Geoff, Washington DC
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Eagle5327
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Hi Geoff, I have known a few patients in their mid 60s who went for transplant, unfortunately none were successful.
I was turned down for a HSCT at age 65 during my Richter's years, due to age. The cut off in the province I was in was 65, so I didn't qualify and an auto transplant was offered, but they are quite poor in RT.
I'm sure there are some older transplant patients, I hope you find a few. Not certain MDS/AML is a true CLL driven transformation or a factor of treatment and bone marrow damage.
Sorry, I don't have any good survival stories but perhaps try the HU Leukaemia Care site or Bloodwise who cater for MDS patients. I do have a friend who has had 2 autotransplants for myeloma. The first gave her a 5 year remission and she's just had the second one.
Your friend's situation is tricky for a few reasons.
- Her age is definitely borderline but they are probably looking at her biological age which, if she's fit, has no comorbidities and eats well, is probably lower than her chronological age.
- MDS is very hard to treat, especially if it has arisen as a result of previous chemotherapy.
- Auto transplants with a mini conditioning regime in MDS are probably the safest transplants but not likely to be curative as there is no graft versus MDS effect.
- Autotransplants in CLL were tried many years ago and they led to MDS developing in approx 8% of patients.
However, this is just a broad overview and her Drs must be confident or they would not have recommended this course of action.
I'm wishing your CLL friend all the very best, whatever treatment option she chooses.
I have been approved for stem cell transplant, if I want to go through with.
I was in molecular remission from CLL for 29 months but therapy related F in FCR caused the A M L to be found on Feb 14/19. The number I was presented with, was 20% survival of the procedure(I am white, male, over 71 years) otherwise in very good health.
Seems to me living with AML and having a relatively good quality of life is much superior to going thru 2-6 months of extremely horrible conditions|( where I could die) and then to be monitored for another 18 months.
I am thinking 18 months of watch and wait, do as much as I can daily and live my life to the fullest with nothing to hold me back, is a far superior choice that I can make,
Any one out there having to make these life or death decisions, that can shed some light on your decision making thoughts would be very much appreciated
Hi Bassmaster, I remember you posting a little while ago and I was sorry to hear that you had developed AML. You had just started some liposomal daunorubicin amongst other things and I hope that has put you in remission.
These decisions about intensive treatment are the most difficult ones we will ever face and everyone will have their own priorities in life. Some people will want life at any cost and others value quality of life over length. No one can say what they will decide until they have to make their own decision but I know of patients who have put themselves through treatment because it's what their loved ones wanted them to do. That isn't good so I hope you are able to have open discussions with your loved ones about your wishes.
MartyR posted recently about making a similar decision to yourself and you might find the post and replies helpful. healthunlocked.com/cllsuppo....
You're in a slightly different position as you hopefully have many months yet and perhaps other, non curative, treatment options will be offered that can give you a good quality of life whilst extending it. Low dose (LD) AraC is sometimes a good option with few side effects and it can be given at home. Although your AML is harder to treat than non treatment related AML, if you are starting from a point of remission you should have good results. Here is a bit more info: ncbi.nlm.nih.gov/pmc/articl...
Please don't disappear from the site, we will worry about you.
I came thru the Vyxeos treatment one day less than their minimum with only one slight fever(18 hours worth but 48 hours worth of antibiotics) and one tongue lesion, I lost 16 lbs of muscle mass and after three rounds of treatment(days 1 3 and 5) they got 98% of the blast.
I finished the last two consolidation treatments a week ago last Thursday with NO SIDE EFFECTS and thus far the blood count numbers are dropping as expected.
Life is pretty good.
I went thru two pair of running shoes as they told me walking is my get out of jail pass(LOL) and it made a huge difference to me. One day I did 5.4 miles walking the halls
Now is decision time to go or no go -Stem Cells. My heart and head tell me NO stem cells and my family and friends will back me a 100% either way I move. This window of opportunity is mine but really a very short window. I have been blessed my whole life with words of wisdom from the least expected places.
If you have hope you can cope and if you cope you can heal.
"If you have hope you can cope and if you cope you can heal" - that is so true.
You have done brilliantly well so far and your doctors would not offer you the opportunity of transplant if they did not think you were fit enough and able to cope with it. (It looks bad on their data if their patients die within 30 days of treatment and the CQC tut very loudly!)
The key thing is the conditioning regime which is the treatment that prepares you for transplant and that can be tailored to the patient so that it's not too toxic. However, that reduces the chance of success slightly and people with treatment related AML tend to have 'bad' genetics. which makes things slightly harder.
Before this window of opportunity closes forever, your doctor is the best person to help you make this decision. It might help to ask him/her what does he see that's in your favour in proceeding to transplant and what are the adverse features. If you decide not to proceed then what options do you have available to you that he could offer. He also needs to be honest with you about infection rates and other possible complications of transplant.
I think I mentioned before that I have a friend who is nearly 70 and nowhere near as fit as you who has had a second transplant last year. It was tough, very tough at times but she's glad she did it.
Whatever your ultimate decision it must be what feels right for you and I wish you all the very best.
Love your attitude. Life is for the living, for sure. Super glad you're approaching such a tough time so well.
Unfortunately my friend died shortly after I posted last year. She had decided to go through with a transplant but her MDS was so aggressive that the window of opportunity disappeared before she could begin. Her reasons for proceeding were different than yours, though -- she had a husband with dementia and was extremely worried about him. (Their kids have now stepped up and he is being taken care of in her absence.)
For yourself, best of good luck with your decision. I wish I had experiences or knowledge to help but I don't. Sorry I can't help more.
You got some great insights from Jackie above -- but this particular conversation thread is old and our exchanges just now are buried from people not on this thread.
How about re-posting the text of your original question above as a brand-new conversation on HU? Posing the question to the whole community would help you benefit from everyone's experiences and support. I hope you do.
Wishing you the best. Please stay online and keep us posted --
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UPDATE: Mom's CLL transformed to PLL
GailCat3
Road to a BMT... oops just got there (Day +101)
Stick or Twist...Not Really.
