Well, I have been below the radar lately but it’s time to update you all. I was diagnosed moth PMF in April 2020 and declined quite quickly. I have CALR with ASXL1 mutation. I went through rapidly increasing dose of Peg INF but moved over to Ruxolitinib when my platelet count dropped. The rux helped with the symptoms but also reduced my spleen down from 22cm to 18cm which qualified me for the Stem Cell transplant.
The donor register search drew a total blank and both my sisters were just 50% matches. The haematologist was satisfied to proceed with one of them but I suggested testing my adult daughters. Both were also 50% match but being younger and neither having had a pregnancy made them better candidates. The consultant decided to go with my younger daughter and plans were started to transplant in November 2021, but Covid-19 staff shortage impacted and this was deferred until March 2022. This was also pushed back due to the impact of staff absence due to Covid-19 and the date for 26th May 2022 was finally set.
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ConniesDad
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The ongoing delays meant repeatedly undergoing the pre transplant health tests but as the agreed date approached my daughter has her harvest days arranged and I ( growing steadily weaker) prepared for admission. I was having fresh cells so would start my chemotherapy prior to the harvest. I was admitted to hospital on 26/05 and had 4 days of chemotherapy followed by one day of total body radiotherapy. The following day (1st June) I had the infusion of stem cells; 2 bags of them and the doctors were happy with the volume and quality of the cells. Over the following days and weeks I went through a myriad of emotions and swung from feeling quite fit and healthy to feeling totally wretched and back again. But everything was progressing well and after 3 weeks and 3 days I was discharged home under the care of the outpatient unit with twice weekly visits. By the end of July the consultants were extremely impressed and happy with my rate of recovery and have started to reduce my medication and have also reduced me to one monitoring visit per week.
I am feeling quite well. My last chimerism test shows 100% donor cells and I am now waiting for a second chimerism result and bone marrow biopsy results to identify whether the cancer cells have been eradicated.
Still a long way to go but a fantastic recovery so far. I am still building back my strength but my quality of life has improved dramatically already and I am looking forward to a busy future
hi ConniesDad, excellent news, so glad you are feeling better already, and what an amazing daughter you have. Keep on getting better and stronger, best wishes, Maz
This is wonderful news. I am so pleased for you and your family. Really interesting to read your story.Best wishes for your continued recovery and big shout out for your wonderful daughter.
I thought you would have been there before me tbh but things take strange routes sometimes. I don’t envy you with what is ahead of you but I wouldn’t hesitate to go through it again if I needed to. I’m keeping everything crossed for you and will keep you in my thoughts. Good luck and see you out the other side. Garry x
Thanks for sharing this wonderful news! It’s great to hear positive news on this site. Kudos to your daughter who has given you the best gift of all, life. You are so blessed. May you continue to regain your strength over time.
Garry has already had his transplant. As I understand it, Donors have carefully monitored treatment to increase production of stem cells before they are harvested.I assume you are talking about hyperbaric oxygen treatment? It is used for compression sickness and some other specific conditions. However, there are risks, which must be greater if it's used outside a proper medical setting. Also, various claims have been made for it (eg as treatment for autism), for which there is no evidence.
I suppose what I'm saying is, we need to be really careful about what we use and recommend.
It's not my place or intention to question your decisions about your own health care. I have read a little about about hyperbaric oxygen therapy and, for myself, I wouldn't use it unless I had one of the specific conditions for which it is a proven therapy. I don't know enough about bioresonance to have an informed opinion.
Stem cells for transplant are harvested from blood, from bone marrow or from cord blood, not from adipose tissue. I think it's most often from blood, using apheresis, following carefully supervised treatment under the haematology department.
My point in commenting is really to say that I don't think we should be suggesting controversial or risky treatments to one another in this group, although there's nothing wrong with describing our own choices and experiences.
On a different note in your reply, the donor does not need to experience a marrow, only a blood draw, is that right? That would be a much better experience for the donor.
I believe so, but it's not as simple as a blood draw. In my pre transplant check ups, they found that I had excess peripheral stem cells (not uncommon in MF). So I had apheresis to remove about 5 million to be frozen as an insurance in case of graft failure. If they had to be used, I would still have MF but at least I would still be here. Apheresis involved taking blood from one arm, passing it through a machine to extract only stem cells (identified by weight I think) and then putting it back in the other arm.
It took about five hours.
So stem cell donation is a big commitment, but not at all painful. Just rather boring - it's essential to have a book/magazine or whatever to keep you sane!
My daughter had apheresis just as you described Jennie but had to have it on 2 consecutive days. She also had to have daily injections for 5 days to stimulate her stem cell production to ensure that there were enough cells peripherally in her blood stream. She described the process as mildly uncomfortable, having to remain seated and connected to the machine for approximately 6 hours each day but in no way painful and as you mentioned an extremely boring process. I’m so glad she went through this to give me a chance to live longer but if there was any risk to her I would not have allowed her to do it, nor would her doctor, I believe.
I understand your concerns. It’s important to think about how some will interpret what we write. Thanks.
I always look for other treatments thatdont harm the body. After years of working on my health, the progression of my ET in the last year seems to have slowed and stopped. since my dental cavitation treatment on May 2, my thrombocytes are lower by an average of 250for 2,5 months already. My doctor reduced my Anagrelide from 4 to 3 a day! Hopefully, this trend will continue in the next months?
stem cells are sometimes removed from fat, then multiplied and reinjected, ie, in the knee, for meniscus healing. In the US, they must be reinjected into the body within 24 hours, (US medical guidelines). In Mexico, the mult. process is up to 5 days- more effective.
I just did my second HBO treatment on Monday and I am breathing freer and am stronger. my third tomorrow. If I continue to benefit, I will continue. My positive response to HBO may be Due to my beta thalassaemia: blood cells low, small, don’t function as well as normal ones.
Bioresonance is an accepted therapy in Austria. My daughter‘s been fighting 4 stems of chronic Lyme for 4 years and the only normal treatments -years of antibiotic treatments and cortisone injections into the knee. She was getting sicker and sicker. She left high school at 15 because she could hardly stand. She’s now doing her Matura (A levels) thanks to BR (Quint System developed in Austria).
It’s so amazing that you have so many stem cells! Regarding the apheresis/freezing, I will speak to my doctors about this. 🙂
I'm glad you have been helped by the treatments you have chosen. I knew that stem cells could be extracted from fat but obviously this thread is about SCT, hence my description of apheresis.
They would only need to do that for people having an SCT. Having so many excess peripheral stem cells is an MF related thing, as my consultant explained it. In my case it was an advantage, but having them in blood circulation isn't a normal, healthy thing, which is why donors have treatment to stimulate stem cell production.
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