I have had my follow up visit with the transplant team and they have found 6 x 100% matches in their 30s. So this is good and also humbling to think that complete strangers would do this for you.
I have been told that right now the risk outweighs the benefit and I should go and enjoy my life and maintain my fitness levels . I am 54 years old and have always been fairly fit and healthy, although not as strong as I used to be. My 3 factors for a SCT are MF progression to AML, my symptoms becoming a burden, or me becoming transfusion dependent. I suppose age is also a factor. For now my platelets are normal and haemoglobin the baseline normal. My neutrophils however are only 0,9, so trying to monitor and increase these.
My question to those that have had SCT, is what was your deciding factor and at what age did you have it done? I think I am trying to map in my mind what the future has in store. Thanks. Penny
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UKZA
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I was almost 61. Prof Harrison told me that I was a good candidate for SCT, which influenced my decision to go ahead. I was also advised that it was best to go ahead while I still felt well, rather than to wait until the disease had progressed further. This felt strange as I would be giving up relatively good health for a potentially lower quality of life, as my transplant consultant warned me. However, he didn't try to influence me either way, just set out all the facts about the experience and the possible negative consequences. When he told me that SCT has a 20% mortality rate, I asked him what makes the difference and he replied that those who don't make it usually have an existing comorbidity, such as COPD. There are no guarantees for healthy people but I took that to mean that the odds were good. Having had the experience, even though it was really tough, I have absolutely no regrets.
Hi, I was 59. I've posted about the decision to have the SCT on this forum before; I think it's possible to read my previous posts. To be brief I had essentially run out of road with treatment and was needing more and more transfusions, both Hgb and platelets. Quality of life was low and dropping. Despite being a higher risk due to some existing comorbidities I persuaded my consultant to give the green light. In all truth I doubt if be writing this had I not had the STC. I count my lucky stars every day. I wish you well for the future.
hi. I note that you say you are trying to improve your neutrophil count. My last count (because of chemo) was 0.4. There was talk of giving me a growth hormone to raise white cell levels but it didn’t happen. How are you trying to do it?
I wish you all the best with your SCT when it happens and hopefully you’ll get the timing spot on
In hospital, when my neutrophils were very low, I was given a drug, by injection, called GCSF (I think that's what they said). It worked but almost too well and gave me a neutrophil count of 10 at one point.
Thank you. I think that was what they were talking about giving me. They might give it to me alongside my next cycle of chemo depending on how well my counts have recovered.
I read your earlier post when you were told you had progressed to MF. I remember this myself and being given lots of prognoses of life expectancy . When it was 14 years then 9 and I was 70 it didn't seem so bad but then they said 3 years. As you are a lot younger that must be a different kettle of fish. I had no trouble from GVHD and would say that by my 100 days plus the chemo ( so about 3-4 months) I was much better and was beginning to do most of the things I could do before. If you get significant GVHD I think recovery is a lot slower. My husband was able to visit me daily as he is retired. I had my transplant at Bristol and they have a policy of discharging you to a flat they provide in Bristol as I lived more than 30 minutes away. He was holed up there with me. If you are lucky with your recovery, then in 3-4 months you could be well past the worst and be in a better place than you are now
Hi UKZA. Had very similar dilemma back in 2010, aged 57, although somewhat simpler as Ruxoliitinib (still in trials) and some other wonder drugs didn’t exist and I had no other transplantees to talk to. Indeed four months out I was asked by my (brilliant) MF consultant to talk to my first ever SCT buddy as ‘we have no-one else’.
I could feel my spleen as it was like a tennis ball below my rib cage and my HGB was 8.5 (sometimes people record it as 85). My prognosis was 2-8 years with a median survival of 5 years, but again before Rux’ helped with the symptoms. I was told I would have to transplant (SCT) within three years, but chose to go ahead as I didn’t like what was going on inside my body. MF can move at variable speeds and some have done really well on drugs. I blogged the first year as I was asked to by some American friends who wanted to know if I was going to survive! I wrote ‘my diagnosis to three months out’ story back in 2011, happy to share a link if it might help.
SCT is the only potential cure. If it becomes an imperative then choosing the right moment is key as you don’t want to go in to a tough set of treatments with your body struggling. I was always led to believe that transfusion dependency was a negative factor. I don’t know the current suvival estimates but I was given a 60% chance of success, with 20% chance of relapse and 20% chance of not making it out of hospital. Unfortunately, there is no magic guarantee of success and I have many SCT buddies who are fine and have lost some along the way. GVHD is another consideration.
Currently I ski, I run, Kayak, look after granddaughters (the most tiring activity of all!) and travel. I am 12 years out and have met others with a longer track record.
There are several lovely people here who have been through SCT successfully who will no doubt chip in, as well as some in a similar stage to you. Ask away and we will help. If you want to chat, I am always happy to do so with anyone considering this.
Good luck with your decision.
Chris H Watford (aka the princess Leia version as my male body is driven by lady stem cells)
thank you for your reply, I would love to read your blog, if you are happy to share the link with me. Your lady cells seem to have done you well over the last 12 years. 😀
The blog is a whole year from going in to hospital and not readily available on line. I have posted my story below removing pictures, in two parts. Chris
Chris BMT
Zhen | July 1, 2011 at 12:04 pm | Categories: Uncategorized | URL: wp.me/p1wOgO-8m
B>TO B(MT)OR NOT TO B(MT), that was the question.
by Chris Harper
Chris BMT
Zhen | July 1, 2011 at 12:04 pm | Categories: Uncategorized | URL: wp.me/p1wOgO-8m
TO B(MT)OR NOT TO B(MT), that was the question.
by Chris Harper
Hi, I'm Chris, 58 years old reasonably fit as I like to run and kayak, and am fittest of my friends and family in my generation. In April 2010 I was on post Xmas diet and was feeling how slim I was when I noticed a lump below my rib cage that didn‘t fit with how I remembered my human anatomy. I went to the doctor on Thursday. But not before having a search on the Internet and frightening myself silly, thanks Wiki! “Mobile spleen”, my doctor’s registrar said “but we will send you for a scan”. On Friday, the radiologist started his ultrasound and asked, “Had any blood tests recently? No, ok, we will do some as a Haematologist is coming in this afternoon and your spleen is enlarged”.
I was called into see the Haematologist on Monday. “You have Myelofibrosis (MF) and low Haemoglobin (HGB); I can see it in the blood tests”. I had read about MF, acute and chronic so what does that mean. “Let’s do a Bone Marrow Biopsy, and then discuss it.” On Wednesday, the Biopsy was done under local, slight ping as Haematologist nailed it but not an issue. Now even better read on the internet, I asked for a prognosis. “Results in 10 days, then we discuss that”. But the Haematologist is not available for four weeks so I must wait! My Doctor checked when the results were due and relayed the Haematologist’s view, I would be okay until Xmas (8 months away) and then all bets were off.
Try relaying that to the wife, kids and extended family! Three weeks of starting to pack up to leave things tidy for when I depart the planet!
When I saw the Haematologist they talked about MF and the few patients they had with it, while I asked various questions. “Drugs can mitigate but not cure and bone marrow transplant (BMT) is unproven and highly risky”. I asked about prognosis and was asked “Do you really want to know? “ Many words came to mind but I settled for yes! 2-8 years survival, median 5 and you seem better than median. “Would you like a second opinion?” Yes! Referred to leading UK specialist, and the one I wanted to see. My last comment was I thought I had less than a year, “Whatever gave you that idea?” I was too emotional to find the appropriate words and left the hospital in a part stupor.
My choice of specialist related to an email Lesley sent in our first MF research. Sent to the MPDVoice website with a query, we were referred to a doctor and got a brief guiding response from a UK renowned specialist the same evening. That was the person for me, Claire Harrison!
The bottom line on BMTAt the MF consultation in July I got good background information and a simple statement of fact. “Drugs can help but not cure and work well on some but not everybody. BMT is the only potential cure but has risks. You are reaching the top age limit for a mini allogenic BMT (in UK) and your fitness makes you a good candidate. If you were my father or husband, that is what I would recommend for you.” This simply was another confirmation step on a decision Lesley and I had made after our early internet research. “I will refer you to my friend at University College Hospital, best in London.”
The BMT consultancy in September was reasonably straightforward. I got the details of the process, short, medium and longer term, the survival odds and many questions answered. One in 5 does not survive the process. Risk of failure or relapse is also one in five. Three in five are successful. Then there was the risk of Graft Versus Host Disease, to various degrees, afterwards. Overall nothing new arose, and impressed by consultant and specialist nurse co-ordinator, I agreed to go ahead at this meeting.
The process begins
We needed to find a donor so my two sisters were checked first but didn’t match. Several weeks later the co-ordinator phoned and told me I had a 10/10 match for January. Next we had two failed attempts, one couldn’t match dates and on the second I started a cold on my first day, which stalled the process until, the end of February, where my chemo started on my 58th birthday.
I checked in to my first room on the 16th floor of UCH.I could see the flats where I was born less than a mile away! Then I was moved to a room overlooking the city of London from where I could see locations where I had spent half of my working life. This was so I could be near the nurse’s station for special monitoring as the chosen drug regime (the gold standard for MF in Europe I was told), Fludarabine, Busulfan and then ATG (Thymoglobuline) is not used frequently as they have lots of BMT patients but not that many with MF.
Six days of intravenous chemo, then three of ATG conditioning. It seemed easy until day 7 at 1715 when my body was bushwacked and I went into a twilight zone of headaches, sore throats, diarrhea, hourly loo trips, shivering and many other unpleasant reactions, with very little sleep, for the next 3 days. Things started to settle on the day I got my new stem cells and then I had two more twilight days before starting to improve. Whilst I found these days very difficult I simply remembered what the doctors had said “You are going to feel more ill than you have ever done before” . They were right! Some days I ate, others I didn’t because I couldn’t swallow (ice lollies (popsicles) were great for my throat). Now began cell watch as we watched them drop so that I became neutropenic and then rise. The counts for HGB, Platelets, Neutrofils and White Blood Cells, would help determine my release date, alongside my general health.
I got apologies from doctors and nurses for doing various bits and pieces at all times of the day. My response was always the same; you are saving my life, do whatever you have to do whenever you have to do it and I will handle it. Even though I was often wired up intravenously, sometimes for a few days, I got up every day as much as I could and they had to find me a 15 minute shower slot every day. The nursing staff team, truly multi-national, were brilliant. Always cheerful, friendly and supportive, nothing was too much trouble. However, my best nurse was Lesley who stayed and slept on a sofa in the room, or during my twilight days sitting in a chair sleeping with her head on my bed.
Lady Cells gradually improved and I noticed that a week after receiving my donor cells, my spleen had reduced from five fingers below my ribs to one, something I was told would take weeks. I thought that things were going slowly and perhaps I had received my donor stem cells from a female who was now “late for the date”. One of the doctors confirmed it was a lady donor, the only information I was allowed. Lesley hoped that this would help me like going shopping and watching Grey’s Anatomy, but I explained to her that there were simply not enough lady cells in the world.
Going home On day 15 after transplant I was changed from a mixture of intravenous drugs and pills, to just pills, but forty a day! Two days later I was told I could go home, loaded with emergency contact numbers, but would be attending regular clinics. Standing in the hospital reception, waiting to go home, I felt the four weeks spent in hospital drift away as if they had not happened.
I left with a limp as my big right toe and left knee both became very painful with 3 days to go, believed to be an inflammatory response related to the return of neutrofils adhering to old wounds.
I couldn’t do much at home as I felt really tired and cold all of the time, frequently shivering despite multiple clothing layers, reasonable weather and the heating on. Walking was still an issue and I exacerbated this by jarring my back by missing a step down. I really walked like Quasimodo for a week until that settled. I found that my taste buds were shot and some favourite drink/food was no longer palatable.
Recovery—cold truth So began regular hospital check up visits, every Monday and Thursday, a very early start as I was given private transport by the hospital to protect me from infection. I had an additional day most weeks if I needed blood transfusions for low HGB. I had a number of continuing minor problems like shivering, tiredness, lethargy, dry mouth, that, toe excepted, were par for the course. Overall I was told that I was doing well for so soon after transplant and had been the third quickest out of hospital for my treatment regimen. During this early period I had good days and bad days, being able to walk for an hour one day and having no desire to walk anywhere on another. Being cold and shivering were a constant. Sometimes I could concentrate and do things and others not; this was probably due to chemo brain. But as time has progressed I felt better.
Almost normalI am now 12 weeks post transplant and for the last three I have felt almost normal. My son has taken advantage of my new found energy and I have been decorating, plumbing and doing other DIY activities in his flat without feeling tired.
My HGB is continuing to drop slowly but I haven’t had a transfusion for three weeks. My Chimerism - carrying two types of genetically different cells - was checked and two of the three main cells, T and N, are 100% donor with some residue of me in the B cells; the likely cause of HGB issues. The doctors can see immature cells in my blood, a clear indication that my bone marrow is getting started. I did have level 4 scarring of the bone marrow another potential factor in slow marrow development. People criticise the National Health Service in this country but I have nothing but praise for the doctors and nurses I met along the way and the treatment I received. Even the food I received was okay!
I used the MPD chat site to get information in the early days and now have more friends around the world. I now write a small email based blog on the site to give back and share with others considering BMT; currently there are at least six.
.Small price to payI have lost weight, muscle tone and of course hair which continues to go and I will soon be completely body bald like an oven ready chicken. I am very careful who I mix with and stay away from young children, and their parents/grandparents as my immune system is compromised and I must wait 12-18 months before I can be re-immunised against childhood diseases. I must not mix with people in close proximity or use public transport so am restricted socially but I consider this a small price to pay. I still have a long way to go but feel confident about the future.
Biography
Chris Harper, 58, live near London. Very happily married to Lesley for 36 years we have two sons, Ben and Matt, both Policemen. Worked for the same company for 33 years in IT, 13 as a senior manager, but took early retirement seven years ago when I felt that hard work, integrity and fairness no longer counted for anything. Now spend time helping family, friends and older company pensioners. I have completed three London marathons raising money for charities and plan another when recovered. I enjoy skiing, kayaking and world-wide travelling, the rough end - backpacking and overland tours, but will be confined to the UK because of BMT for 12-18 months. But with our motor caravan there is so much to see in the UK.
Thank you so much for this. I shall have a good read at my leisure and also share this with my husband. Just scrolled to the end and am really interested to note that your sons are both in the police force, what a coincidence, I have 2 daughters in the police force. Thanks again
This brought back some memories for me, although as is often pointed out to me, all patients' journeys are slightly different. The feeling of being more ill than ever before is common to all of us I think. Thanks for sharing this, Jennie
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Start of SCT journey
SCT journey update No.4
