Hi all, just to give you an update on my journey towards my *Allogenic Stem cell transplant, my transplant team @ Addenbrookes Hospital are working towards me starting chemotherapy at the end of July with the transplant taking place approx one week later at start of August.
I have one more appointment with my consultant mid July to check bloods, lung function and heart (ECG).
Am still on Allopurinol (300mg daily) and Ruxolitinib (20mg twice daily) and still tolerating this.
Obviously there are many hurdles throughout this process including the fantastic donors who have been contacted, retested and will have the stem cells collected in their home countries for transportation back to Addenbrookes ready for “T” day!
There are many reasons why my dates could be pushed back but 🤞🏻🤞🏻
Must say that I’m still apprehensive and nervous and just can’t wait to start……….
I’m sure this is normal🫣
The journey has been made so much easier with both Guys and Addenbrookes using “MyChart” which is an app and website which allows me to securely and easily access my health records, letters, visits, test results and keeps you updated.
Love to all
🤓
*Transplant from an unrelated donor.
Written by
LFCLove
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Hi, I'm both existed and anxious for you. Did you get a 10/10 match? I keep delaying transplant because the best match they can find for me is an unrelated 9/10. I'm only 43 so hopefully I have time..... How old are you?
Hope everything goes well for you! I still find it difficult to comprehend that you were given a prognosis of how long you might survive, and how short a time it was. Well it looks like you will 'live forever' well done!!
I am 13 years out from SCT. Mine was delayed twice, once through a dates issue (close to Xmas) and once when I caught a cold, so a combination meaning two months delay. From then on it was all systems go. The chemo part was straightforward, the first 7 days of a 10 day cycle. The last 3 days were conditioning and quite a challenge for my body; exhausting but manageable as I faced a variety of conditions at the same time. I guess it depends on what chemo' regime is used. Mine was Busulphan, Fludarabine and Thymoglobulin (Rabbit); it might have moved on since then.
I was 58 years old and treated at UCH. One of my buddies had a successful SCT at Addenbrooks and I wish you the same. Best wishes.
I am 69 and had my stem cell transplant in mid July last year at the age of 68 .
I had myelofibrosis stage 2 . Fortunately one of my 3 siblings was a good match.
I was told In January last year that my median life expectancy was 35 months .
Like you I had all the necessary checks early last year after the hospital found the match and then went forward and had the transplant . I'm so pleased that I did . It can be tough at times both mentally and physically but definitely worth it I can understand your apprehension but keep looking forward .
If the hospital didn’t think you were fit enough or a good candidate with a good chance for a positive outcome then they wouldn’t offer you the opportunity of a transplant .
I feel like I’ve got my future back .
I’m sure that you will be well looked after and supported by the team at Addenbrookes . I had my transplant in Nottingham and the whole team are amazing .
Hi LFCLove, , have you been given a plan for tapering down your Ruxolitinib? If not and your next appointment is mid July then it leaves very little time with your dosage to wean off it prior to your start date. I recall I had weeks of tapering and a rigid plan to follow to gradually reduce my doses. If it's in hand great and other than that I wish you well going forward.
Hi Chris, I’ve not heard anything regards tapering but asked my consultant if and when this would start. However I have read several articles which mention shortened tapering times before conditioning starts even down to 14 days.
As my last appointment is approx 18 days before conditioning starts, I may find out at the appt. what dosage and tapering events to follow.
I’ll update you when I find out and thanks for mentioning it thou.
Well it was in the early days of Rux and things have moved on substantially since I 'volunteered' to undergo SCT. It mightn't matter too much to leave it till last minute when you're having conditioning anyway so perhaps that's why. . . .
Makes life easier by far , , obviously with something like this learning through past experience and practice comes into play which is a bonus for others down the line What I will reiterate is that the process is all doable, just play your part by trusting your care team and sticking to the regime which can be a tad demanding at times. And try hard to do it with a smile even though you might not feel like it 🙂.
LFCLove, Wishing you all the best as you go through this whole transplant process. Though there may be difficult days ahead, there will be good ones beyond those! Stay strong, keep your spirits up and know that all of us are wishing you well! Hugs from NYC.
Wishing you the very best for your planned T Day. By coincidence tomorrow is my 5th anniversary/rebirthday, and I shall be celebrating with a glass or two of fizzington!
Sending very best wishes to you. I had my SCT at the beginning of August last year, I was 68, there were tough times, but so far I’m doing pretty well. A bit of advice, take your own pillow with you - I was so glad I did!!
I had my SCT delayed once, for 2 weeks, I assumed the donor may have some sort of issue, but I will be forever grateful to her.
good luck with your transplant iam on day 48 I have been home nearly 2 weeks I was so scared and I did extremely well it’s hard but so worth it I did have a complication I got vod and overloaded with fluid but they have medications to get you through anything I was also unrelated 12/12 match but I was at Queen Elizabeth Birmingham you will be absolutely fine iam sure of it and when the hard bit comes just remember it only gets better from that point I was told my transplant was one of the most dangerous they had performed due to my other conditions and complications I had a small survival chance and I got through fine so if I can so can you
Cheers buddy, has alleviated some of my apprehensions. I know it’s going to be tough, but it’s like when I’ve run a marathon, very nervous before the race starts, then it’s just about finding a pace that suits and don’t be distracted…..
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start of my SCT journey 
