SCT journey update No.3

[LFCLove]

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.

[Mishie14]

You are so close to ‘T day’ and doing well. I am happy for you! You are in thoughts and prayers all will go well.

[LFCLove in reply to Mishie14]

Many thanks and hope your journey, although bumpy will resolve to an acceptable level.

🙏

[Hatchie]

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?

Keep the updates coming. Hope it all goes well.

[LFCLove in reply to Hatchie]

Hi, not sure what the differences are in the ratios between Oz and UK but my matches are both 12/12So my consultant is extremely happy!

There are more and more people getting tested and registering so who knows what's around the corner!

Good luck in your journey.

Am 69 and living on the east coast.

🤓

[Spanelmad]

Keeping everything crossed for T day

[jointpain]

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!!

[Misty-3]

Good luck! All the best! Praying for you🙏

[lizzziep]

Hope all goes well 🙏🏻🤞😊

[Scaredy_cat]

Wishing you well. The first 2-3 months are hard. Mychart sounds wonderful

[RedCardRob]

Hope all goes well and good luck.

[Exeter21]

well done new technology & treatment is amazing these days so good luck . Yes My Charts is really good I use it too .👌. Julia . Exeter UK 👌

[KLCTJC]

Will keep praying for you!!!! Hoping everything goes well!!! Keep us posted

[MFBMT2011]

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.

Chris (with the Princess Leia stem cells)

[LFCLove in reply to MFBMT2011]

Hi Chris, many thanks, that’s good to know.

Long may you continue to progress. I hope all goes smoothly but I’d be surprised if there were no bumps along the way 🤞🏻

All power to you and all others going along their own journeys.🤓

[Meatloaf9]

Wishing you nothing but the BEST. Keep your eye on the prize, a cure.

[Tortina]

Hello

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 .

Stay positive and look to the future .

Standing you my very best wishes .

Tortina

[LFCLove in reply to Tortina]

Thank you Tortina it is much appreciated ❤️

[JediReject]

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.

Regards - Chris

[LFCLove in reply to JediReject]

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.

🤓

[JediReject in reply to LFCLove]

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. . . .

[LFCLove in reply to JediReject]

Hi Chris, my nurse practitioner responded after a chat with my consultant and am advised to continue Ruxo right up to my chemo. So no tapering needed.

🤓

[JediReject in reply to LFCLove]

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 🙂.

Cheers -Chris

[LFCLove in reply to JediReject]

Cheers Chris I will do my very best.Eyes on the prize.......

[ETinNYC]

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.

[Bullace]

All the very best to you as you go through the transplant process. I hope it goes as smoothly as possible for you. Hilary

[Dodders]

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!

[LFCLove in reply to Dodders]

Happy 5th Anniversary Dodders!

Will raise one later🤓

[JediReject in reply to Dodders]

Happy Re-Birthday Dodders. . 5 years is a key milestone so well done! 🎉🎂

[SRH55]

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.

I was weaned of Rux before my transplant.

Good luck.

[LFCLove in reply to SRH55]

Thanks for the advice! So pleased you are progressing well. Long May it continue.

I did check with my team and am told there is no need to taper off the Rux. There are different schools of thought on this.

🤓

[SRH55 in reply to LFCLove]

At least you’ve got an answer to that, I agree there are different schools of thoughts.

[Leighcox85]

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

[LFCLove in reply to Leighcox85]

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…..

Good luck with your progress.👍

🤓