Stem cell transplant

[Leighcox85]

I haven’t posted for a while as things have gotten very complicated for me recently my partner was diagnosed with stomach cancer and around the same time I ran out of options and stem is my last shot I have held off as long as I can so my partner could have surgery and get back on his feet but my dates been set for 2 weeks time the 29 of April the thing I wanted to ask is if any of my fellow mf friends that went on to stem cell had complications I have liver disease variceal bleeds blood clots and a huge spleen when I went to see my stem cell transplant team my conversation was very grim and my chances of coming out of hospital alive are small her words were if she took 100 patients like me down she would be happy come back with 1 I have a 5 per cent chance iam young so that goes in my favour and I have a 12/12 match but iam high risk for icu and graft host is there others like me iam really scared I won’t make it and would love some positive stories sorry for long post but I feel I have get it out of my head hope everyone is doing well x

[Heidi-W]

Dear Leigh

So sorry to hear about your partner and that your only option now is stem cell transplant. I've not had one yet (post PV MF) but hope some of the experienced folk on here will make contact with you. Just wanted to wish you all the very best for the transplant procedure and please keep us up to date with your progress.

Best wishes

Heidi

[Scaredy_cat]

I agree it does look grim. Which country are you in?

I had my SCT Jan 2023. I was 70. I too had a very large spleen and they irradiated it before the transplant. I had a portal vein thrombosis about 20 years ago. I didn't have any other health complications. So far all is going well for me. However you will need someone to be with you as you recover. Have you got anyone other than your partner who can do that? I spent about 6 weeks in hospital and then was discharged to a local flat for a couple of months where my husband helped out with my care. Obviously I improved and could eventually do a lot myself but it would have been very hard without him. Can you get a second opinion about the risks and statistics?

[Leighcox85 in reply to Scaredy_cat]

iam in the uk I have London st guys involved but will be having my sct in Birmingham Queen Elizabeth iam 37 I was diagnosed with mf at 24 after having my son I was intially refused sct but got a second opinion and now iam going ahead as I have no other options available to me I have followed your story and read most of your posts you’ve done amazing and you have me a lot of hope I think iam just scared it’s so close now

[pheebee in reply to Leighcox85]

My friend in her late 50's had advanced breast cancer and during her treatment they discovered she also had smouldering myeloma. She went to Birmingham QE a year ago for a SCT and they were brilliant. She is doing very well now. You will be in extremely good hands there. Remember that doctors always put the worse case senario to you.

[KLCTJC]

I do not have a personal story, but I do have a patient who had primary MF who had a stem cell transplant and he did great. He had it a few years ago now and is doing so well I think he is going to get to stop the transplant medications. You would never know he had it. He sees me every 6mos for skin exams. I expect next time I see him he will be off of his medication. I hope this helps! Just to let you know success stories are out there. Trying to send some positive hope your way. Will be thinking and praying for you.

[brightlys]

I'm so sorry to hear what you are going through. I don't have any experiences with this, but I just wanted to say that I'm holsing you in my thoughts and hoping you have successful procedure.

[Simon96]

Hi Leigh, sorry to read that you and your partner have been going through a very rough time.

Best wishes with your transplant. The doctors would not have offered it to you if there was not a chance of success. Where there is a chance, there is hope. Hang on to that.

The transplant process is tough, but nothing to fear. Take it one day at a time. and try not to cross bridges before you come to them - easier said than done!

Kia kaha, Simon

[Wyebird]

oh dear, I’m coming through a long and arduous road of turmoil and grief but yours definately exceeds it. You will be surprised by the mentally and physical energy you will find to endure this. It’s hard but channelling your energy on you is most important.

I think when others tell you the same it will give you courage and peace of mind to do just that.

I’m sending you more hugs and best wishes than there are in the sky.

[MFBMT2011]

Had my SCT 13 years ago but did not have your challenges. While it seems a difficult devision, as it is a tough route, a small chance of survival is better than none. Age is on your side and you have a good match, This is your fighting chance, so be positive and set your sights on survival.

Best wishes. Chris H

[Tortina]

Hi there ,

Having read your post I really feel for you .

Are you under a good mpn specialist ? If so I would probably listen to their advice as to which way to go forward . I had my SCT last july and prior to the process I did ask my consultant what she would do if she was in my shoes . I had stage 2 myelofibrosis . Without hesitation she said she would definitely have the SCT . That was good enough for me .

It’s not been an easy ride afterwards as I had an issue with my Chimerism but I don’t regret having my SCT . In fact I’m pleased I had it .

You will definitely need support post transplant as it takes a few months to get back on your feet .

Ultimately it is your decision but your consultant should have a lot of experience and know which is the best route for you to take .

I send you my best wishes and wish you all the best .

Tortina

[Cazbolac]

I have not had a stem cell transplant yet but, after reading your post, I just wanted to send you my sincere best wishes. Try and be positive as they say it goes a long way in the recovery route. I wish you well.

[Cookiewoman]

I don’t have a personal story to share but you and your family are in my thoughts and prayers. Sending hugs and good wishes.

[Janis12]

I have no experience of this but from an 'amateur' point of view I see you have age on your side and a good match, that has to be a real positive. You must also be worried about your husbands situation. Best wishes to you both....onwards and upwards!!!

[Anag]

I’m truly sorry about all these difficulties in your life. You seem to be a strong, resilient person, though. That is something that works well in your favour. 🙂 wheat eh going gets tough, the tough get going.

There are many issues. Liver: Detox detox detox. Healthy eating is not enough. All organs must be as strong as possible to carry you through. All chemicals out of the home and off your body and well as none in your body. Cleanest diet, no sugars or grains and little animal protein. Worst of all foods in pork, ham,… fires up the immune system and so sonniger shades. Get good sources of fats for energy, best olive oil, grass fed, organic butter, avocados,… If you’re able to, get to a functional doctor asap, one who will prepare you for this procedure by cleaning and strengthening your body. Two weeks is a very short time!

I have beat so many odds in my life in every way, where all said to me, it will be impossible. I almost always found a way through.

If you are a believer, pray and ask God or your higher power to flood you with light and warmth. Meditate, love your partner, breath together, laugh together. Every day is so precious! Don’t waste it, make plans and may you both come through this. 🙏 Anag

[william-Indo]

You are in right hospital and have perfect match donor.

Be brave and keep optimist thinking, will be advantages for your opportunity get cure.

Too much stress will increasing your cortisol.

Wish you all the best.

Cheers

[Mortysdad]

I have found that when I get overwhelmed with the "what ifs" from my situation, that the living one day at a time mantra puts me back in focus about just what's in front of me. I also have found much comfort in practicing the tenants of the Serenity prayer which seems to work whether you are a person of faith or not: "Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference". For me, the power comes from me assessing which column something falls in, moving a worry into the right column and leaving it there becomes key. I have found that when I can stop worrying about those things I cannot change, I have more strength, desire, and clarity to parse out those things I can. Sending you, and all my fellow journeyer's much love, peace, and hope, as love being the greatest, brings forth the peace and supplies us with our hope.

[Minify]

I will be thinking of you on April 29. Focus on the good things you have going for you - your age, a 12/12 match, and imagine yourself strong and free in 6 months time. I know you are scared, and we here in this support group are pulling for you. Stay strong. God bless you.

[Dodders]

Hi, I had my SCT nearly 5 years ago. I had gastric varices, portal vein thrombosis, spleen below my navel and a less than ideal heart function. I had some difficulties post SCT but now I'm doing well, and I've got my life back. It's never an easy decision but for me, knowing what was likely to happen within a few years, it felt like the only option. I was 56 then. I have previously posted on here on this forum a few times about my SCT and I think it's possible for you to still read them; it was tough at times, but I've zero regrets. I really wish you all the best.

[Leighcox85]

I wanted say thank you to everyone that replied to me I feel a lot more positive I had my Hickman line put in yesterday and tomorrow is the big day I go into hospital to begin sct so scared but I also have hope now after reading your stories so thank you so much for that it’s what I needed to hear some positive things I will try to update you all as I go on and wish you all the best in your journeys to x