Stem cell replacement

[Grizly]

Has anyone traveled down the road of having stem cell/bone marrow transplant?

I have MF It looks like it maybe a possibility for me.

[Dodders]

Hi Grizly, yes I had stem cell transplant in June 2019 to treat MF. I've previously written a couple of longish posts about my experience. Rather like MPNs themselves I would say that the 'road' journey is going to be one that varies somewhat from patient to patient. I'd be happy to try and answer any specific questions you may have about my trip!

[Grizly in reply to Dodders]

Thank you for your reply I have read your posts with interest

[MFBMT2011]

Me too. Just passed the ten year anniversary of my SCT and the basic process hasn’t changed much although there can be different chemotherapy regimes depending on countries/hospitals. Many have travelled that path and there are a few of us here who can help and answer questions but it would help us if we know basics like your age and where you live for starters. If you google Chris Harper stem cell transplant you will find a version of my story. It is a tough journey and can be risky but is worth it. Best wishes.

Chris

[Grizly in reply to MFBMT2011]

Thank you Chris for replying. I’m a 68 yr old male from South Wales. 2 years ago I was referred to a Haematologist as a routine blood test showed some issues. Thinking I was just anemic and would be given iron tablets. Only to be told that I might have MF and to confirm the diagnosis I had a bone marrow biopsy. Thinking back before my diagnosis I was on a cruise in the Caribbean when I developed night sweats believe me I was sweating for Wales. At the time I put this down to having some sort of Norovirus and thought nothing of it as it did not last. That was the only symptom My last blood test showed low haemoglobin and my platelets dropped to 80. I have not received any blood transfusion yet. This is still all new even after 2 yrs. I guess burying my head in the sand reflex. Now I feel I must confront my demons and look to the future what ever that holds.

[MFBMT2011 in reply to Grizly]

Happy to chat if it helps. Chris

[suzanneh in reply to MFBMT2011]

Thank you Chris I have just read your story.

[MFBMT2011 in reply to suzanneh]

Happy to chat if it helps. Chris

[suzanneh]

Like you I have MF and I am having an allogenic SCT end of April. I understand it is a rocky road but it is one I am prepared to take. I am 68years old female living in North of England.

[Grizly in reply to suzanneh]

Thank you for replying Suzanne like you I’m 68 I live in South Wales and I’m going for blood works to day to start my journey. I wish you all the very best on your journey.Wayne

[suzanneh in reply to Grizly]

Thank you Wayne. We all need to be positive. They wouldn’t do a SCT if they didn’t think we would benefit from it.

I have a good medical team around me and I believe in them. I wish you all the very best and good luck. Suzanne

[Otterfield]

Thank you for asking this question. I was diagnosed with post ET MF last year and my consultant has mentioned SCT but we haven't discussed it in detail. To be honest I'm a bit scared to bring it up but I think you are right to confront the demons. I am 59 and female.

[crapaud]

Hello Grizzly,I also went down the SCT route 5 yrs or so ago following a MF/MDS-U.

Sometimes issues with gvhd made things a little rough but got through that now.

Although ´science ´ advances every day questions concerning age may mean you shouldn’t hesitate too long before making a decision.

[MFBMT2011]

General health and fitness matter more than age. SCT is not suitable for all and there are various tests before final decisions are made whether it can go ahead. A 70 year old cousin with ALL was checked for SCT but told his heart and kidneys were not good enough to progress. If SCT is discussed as an option it is worth finding out more. Even if the result is “it is not appropriate” knowledge of that might help with decisions on future drugs or trials. And of course you need to find a match. My SCT was MUD (matched unrelated donor) as I did not match my sisters.

[suzanneh in reply to MFBMT2011]

Yes they do lots of tests to make sure your body is fit enough. I am lucky to have a sibling donor.

[socrates_8]

Hey Grizly...

Seems you've received a few replies already, however, I have another for you too if you'd like...

One of our MPN-MATE committee members, (Warwick), is presently 28 Days into his Allogenic Stem Cell Transplant (ASCT), here in Australia, and he is slowly beginning to have a more positive outlook...

Warwick just wrote the following Post on MATES, (Link below):

mpn-mate.com/forum/viewtopi...

Warwick is NOT visiting MPN VOICE at the moment, but you can reply to him via MATES Forum if you wish...

Best wishes

Steve

Re: WARWICK's ASCT Journey Begins Today...

Post by Warwick » Thu Mar 18, 2021 10:45 am

Thanks for all the support its quite amazing you have people in the UK through MPN Voice and all over the world supporting me.

I am now at day 28 post trsnsplant and whilst the declaration of Engraftment day has not yet occurred my white cells are edging up. My white cells are now 0.4 and nuetrophils are 0.3. Neutrophils of 0.5 are my ticket to be able to meet up with family and friends off the haemotology ward which for good reasons is close to quarrantine conditions 1 visitor at at a time and only 2 nominated visitors. The last week was characterised by nausea which is now getting under control but thankfully my headaches are subsiding as my cerebral brain fluid starts to equalise after my lumbar puncture leak.

I am having the routine bone marrow biopsy on Monday. I joked with the doctors not to take too much out as we have worked too hard to grow it they got the humour.

Its likely that my enlarged spleen is sucking up the new cells so the bone marrow biopsy will provide a more accurate tool to determine the progress of my new marrow. The docs are confident my spleen will continue to reduce to a normal size.

I enjoyed a night free of the IV drip for the first time. Iam back on the drip now as i will be having my daily blood tranfusion.

I am staying patient and each day i am thankfull to my unknown bone marrow donar and all the blood donars.

Best wishes and I hope today is a good day for you too.

Warwick

[Grizly in reply to socrates_8]

Thanks for your response. The posts I’ve received have been positive and are very helpful in this scary time. I wish my new friends all the very best and my thoughts are with anyone who has to travel down this path.

[socrates_8]

Hey Grizly...

You are correct of course... There are many very supportive & most knowledgeable people here & if you ever do have to take this journey, I am certain a great many of us here will be right there with you...

Best wishes buddy...

Steve