Stem Cell Transplant

[lebowski42]

I heard this can cure PV. Why the he is this not legal in the USA?! Obviously I can't fly to Panama to get this done and can't afford it. I'm sick of being fatigued!

[Chaz1]

I'm not sure about the legality of it in the states but in the UK it is not used as a cure for PV, mainly I believe is not only is it obviously very expensive the knock on effects of a stem cell transplant can often be worse than living with PV itself. It's not a simple as swapping out a few cells & merrily skipping off into the sunset. There is the risks of rejection of the donor cells, the risks of developing other conditions. I believe it's quite an invasive procedure to prepare the body to accept the donated cells.

Whilst people have the procedure for treatment of MF, not in all cases but usually it seems to lead to that point, it's not seen as an option for other MPNs because of the long term affects.

I have read a few bits about it & it scared the hell out of me, there obviously is also the fact that you have to find a donor who matches closely enough to be viable. If the transplant fails I think (but don't quote me) that you either need to find another donor sharpish ir prepare to put your affairs in order. (sorry to be bluntl

Whilst we'd love it to be a cure & allow life to get back as it was before I think it creates a lot more issues than it necessarily solves although obviously when they are used now they are literally doing it to safe that persons life.

There is a few people in the forum who have had transplants, have a search & see their stories. I follow a few people on Instagram who have had transplants for other blood cancers, they are open about how the journey is.

Have you discussed your fatigue management with your consultant, whilst there is no easy answer & it won't go away there are steps you can take to try & manage it. Sending best wishes.

[Karol_Rua]

Hello, I don't know you or your medical history but you have PV and have fatigue as a symptom. Obviously, you're probably concerned about your future health too BUT, knowing people who've undergone stem cell transplants, I question whether you're sufficiently ill to undergo something so torturous and physically and emotionally challenging in contrast to living with PV. As a transplant recipient, I tire of people assuming, wrongly, that once you have your transplant, everything is 'fine' and 'back to normal'. Being a transplant recipient is like having a fulltime very busy job...daily immunosuppressant medication, daily monitoring, very regular blood tests and dealing with infections as a consequence of immuno therapy. My life revolves around being a transplant recipient to the extent that having ET for 19 years isn't even a daily consideration. I believe to undergo a stem cell transplant, one must literally have run out of all other options...

If you're there, I'm sorry. If you're not, don't believe a transplant is the panacea you think it is.

Best wishes,

Karol

[Aneliv9 in reply to Karol_Rua]

You had ET for 19 years and then progressed to MF??

[Karol_Rua in reply to Aneliv9]

No, still have ET. There were investigations 3 years ago as I had MF sympoms but thankfully no progression.

Karol

[Cja1956]

What do you mean when you say it’s not “legal” in the US? I was diagnosed at age 52, 12 years ago with ET Jak 2 positive and then MF intermediate 1 last year. Most of us on this forum suffer with fatigue, but 2 years ago, I developed anemia and I could barely function. My hematologist at the time couldn’t figure out what to do so I finally went for a second opinion to an mpn specialist. A second BMB confirmed my suspicions. She told me that I’ll probably need a SCT within 2-5 years and sent me for a consult with a transplant specialist. SCTs are, indeed, very risky, and as I understand it, doctors like to wait until you are at a certain point, to even consider it. My doctor told us that there’s only a 50/50 chance of even surviving it, and not everyone is a candidate. There is new research going on all the time for people with mpns, so don’t give up hope. Maybe it’s time to switch doctors. I no longer have anemia and I feel better than I have in years. I’m hoping to never need an SCT, as it is only a last resort.

Best wishes.

[Mocha38 in reply to Cja1956]

Hi CJA1956

Just wondering how did you get rid of your anemia? I’m slightly anaemic. Thanks

[Cja1956 in reply to Mocha38]

So, last September, when I had my BMB, my hemoglobin was at 8.9. I started going weekly to my new hematologist and if my hmg was below 10.2, I got an EPO injection. She also took me off Jakafi and put me on a new medication called fedratinib. I was already on Hydrea. The weekly visits went on for about 4 months and my hemoglobin kept rising. Now I only go once every couple of months. My last visit in June my hmg was 11.9. 😊

All the best,

Cindy

[Mocha38 in reply to Cja1956]

Thanks for your reply. I have MF JAK2 -ve , and on Pegasys and low dose Hydrea. My HB is around 10 but my Dr doesn’t seem to worry too much. I’m taking some Folic Acid, Vit B12, and B6. And iron on & off hoping it will help to raise the HB . I’m glad your medicine is working for you. Is the EPO injection invasive at all?

Keep well and stay safe.

[Cja1956 in reply to Mocha38]

No, the EPO injections don’t hurt at all and there were no side effects. They really helped and I haven’t had one in 7 months. Neither of my hematologists wanted me to take iron. I just take a multivitamin every day, fedratinib, hydrea, and baby aspirin.

I hope you continue to stay safe and feel well.

[Mocha38 in reply to Cja1956]

Thank you so much Cja1956

[lebowski42]

I wasn't aware of any of that and was pretty angry yesterday. Thanks for the info.

[IrishSarah in reply to lebowski42]

I think everyone has those angry days sometimes, you wouldn’t be human if you were a beacon of positivity 24/7 @lebowski42! Sorry to hear the fatigue is getting on top of you at the moment, it’s really tough to deal with when you don’t see light at the end of the tunnel 💚

[Cja1956 in reply to lebowski42]

It is understandable that you are angry. The fatigue and brain fog is difficult to deal with. I had to leave teaching because of it. I now sell insurance because I can make my own hours and work from home. Talk to your doctor about it. I had to adjust my medication many times over the years because sometimes the medications exacerbate your fatigue. I hope you find some answers soon.