Transplant or not?! I’m being offered a choice at this time. Tough decision

[Murry33]

I have myleofibrosis very high platelets high white count low hemoglobin... blasts in my blood have increased to 5% my spleen is normal. Off all meds and no other symptoms. I’m 56 and was diagnosed withET about 15 yrs ago

[Paul123456]

Hi Murry

What does your Hem advise? Have you been DIPPS assessed?

Are you in good health? And why no meds if Platelets so high?

Best Paul

[Murry33 in reply to Paul123456]

Hi Paul. My name is actually Mary. I was in anagrlide for years then hydrea for almost 3 years when it stopped working. Was on jackafi for a couple months but the MPN specialist I see feels you don’t need to treat just high platelets so he told me to stop taking it. My platelets change constantly but remain high. He feels transplant is my only option unless I want to do interferon but depression runs in my family so I really don’t want to try that. He says with my age and overall good health that I would be a candidate for transplant but we always have to look at the fact that if it doesn’t work.... anyway I am in the US which maybe different for treatment. Thanks for your reply Paul

[Paul123456]

Mary

Have you had a gene panel test to help your MF risking? I posted a group of links last week, one on SCT criteria and timing. Might be worth having a look. I thought quite reassuring, especially re Graft versus Host.

And it does appear they can retry if doesn’t work first time providing fit and healthy enough.

Best Paul

[Murry33 in reply to Paul123456]

Sounds great. I’ll have to check it out

[Paul123456 in reply to Murry33]

Please check this out as well.

ncbi.nlm.nih.gov/pubmed/295...

Counters some of the Ruxo scare stories.

[MFBMT2011]

Hello Mary I am one of the transplantees (SCT) on this site and had mine in the uk seven years ago, one year after Myelofibrosis diagnosis when I was 57. Although you aren’t showing other symptoms your blood counts are clearly a concern. Yes SCT is risky but the only curative option. I have been buddying potential transplantees for 6.5 years and while many of these transplantees are now fine, and my friends, I have also lost others along the way. However I have also lost others who chose not to go that route as ultimately MF does that. Quite often SCT is the clearly the only future option but if left too late can be too challenging for the body.

Happy to share my transplant story with you. Happy to answer any questions and also talk to you directly if it helps.

SCT is risky but better tackled while fit to do so rather than as a last minute potential save.

Good luck with making your decision.

Chris Harper

[Murry33 in reply to MFBMT2011]

I am happy to hear from someone who has actually gone through the process!!! I very much appreciate all the info and while it is difficult to feel fine and make the decision to go in for the transplant I do very much agree that being stronger and more fit will help with the outcome. I will get in touch with you if I have any questions. Thanks again!

Mary

[light]

Hi Murry33, recently I come across some new developments and new ways of transplants in USA. I would go with second and even third opinion. There are some very good doc's there, Prof. Mesa at Mayo clinic Az, Prof. Srdjan Verstovsek Huston Cancer centre,. I would check with them before you make decision on transplant.

Wishing you well.

[Murry33 in reply to light]

Thank you so much for your response. I was in the process of trying to find a dr for another opinion. Thanks again!

[JediReject]

Hi Mary, I agree with what's been said and advised by the others especially in respect of seeking a second opinion as the enormity of your decision can't be under-estimated. It's one I faced after living with MF for 10 years. I think the blast cell count is significant as it shows progression. I was high risk of transformation to Acute Mylogenous Leukemia which if happened would of meant a double chemo whammy, first to halt the the AML and second to prepare for the new Stem Cells. That's how I understood ir.

So it kind of made my decision easier and I wanted to be as fit as possible le as Chris said above.I will say again that there us nothing to fear from the Transplant process itself. But we are all different and it is a gamble but as MF doesn't go away I thought it was one worth taking. Had my SCT in Sept 2015.

Good Luck with your decision and beyond. Chris

[Murry33 in reply to JediReject]

Thanks Chris. I really appreciate al the responses that I am getting This forum really has some useful information 😊

[JediReject]

My pleasure and like others very happy to help where I can. I got and still get fantastic support from the good folk here and I have respect for them all.

I hope the advice helps you determine your way forward in the short term as you don't need to be rushed into anything until you're ready.I think It's best if you are 100% committed before you undergo a SCT. . . . .

[Murry33 in reply to JediReject]

I agree. Thanks again!

[crapaud in reply to JediReject]

Good to hear from you my friend - hope things are turning for the better.

Take care

Gary

[crapaud]

Hello Merry,

I fully agree with Chris (JediReject) - it is better to be 100% committed and pretty sure of yourself before undertaking an SCT. Let's be honest, it is not a walk in the park but as the other Chris pointed out it can for many be a life saver.

After being diagnosed with MF+MDS-u I was faced with the decision of having a SCT in 2015 or face a high risk of AML.

Got 2 opinions from respected sources and in view of my otherwise good health went ahead with the transplant.

Once I made the decision I put myself into 'go for it - make this work ' mode.

I personally think it is important to make a positive firm decision (either go/no-go) - but live by the decision and assume your choice.

Best of luck in your road ahead.

Crapaud

[Babeth]

Overall how are you feeling? If you’re feeling? How’s the pain level? I would ask myself these questions and then decide.