[gillhoganParticipant]

Dave was diagnosed last September. Has gone through chemo etc and has had his stem cell harvest. We have read so many good and bad experiences! He is now 95% clear and feeling great. Feels really hard to go back to feeling rubbish again. He now has to make a decision whether to have the SCT. Can anyone help please!!!!
Gill

[mandyphillips41Participant]

Hi Gill

I was diagnosed last October, I am in hospital now having had my SCT today. I was on the clinical trials prior to this and I must confess the side effects I suffered were really rough. My feelings are what choices do I have so after talking to myself, reading other peoples journeys I decided I didn't really have any other choice. I am on day 4 today and have been told that by approx. day 10 I will probably lose my hair and be pretty poorly – I just don't know exactly how long I will be poorly for but I am in here for 28 days so probably feel bad for about 10 – 14 days. So if 2 weeks is what it takes then I decided after the past 7 months I can do 14 days standing on my head.
My understanding is (and again I may be wrong) that there will be no remission without the SCT.. My nurse will be in to see me soon, she is lovely and explains things so well so I will ask her opinion on your question is you would like me to?
Mandy x

[tonyfParticipant]

Hello Gill and Dave. I am 68, was diagnosed end March 2012. Had lenalidomide, cyclophosphamide, dex and ranitidine for five months, no further drugs until December when there was an aborted attempt to harvest stem cells ( got an infection ) harvest restarted mid January with the transplant beginning February.
Like you Dave during those months that I was not taking drugs I felt fantastic, there was a lot of family stuff going on and I just joined in, great.
Right from the outset the ambition was to go for the stem cell transplant, so I just went for it!
The transplant team gave us the worst case scenario regarding the effects of the treatment, but I only felt rough for about a week, stayed in hospital for just about 3 weeks and recovered at home. Within a month I was country walking the dog and driving short distances, took a while to visit the supermarket and socialise, but now it's back to normal.
Last visit to clinic told me that I am in partial remission, all bloods ok, parap 2.2, hoping next visit will be even better.
I admit to still feeling occasionally fatigued and do worry if the SCT has been a success and worry about the long term.
I don't regret having the SCT, if I was in your shoes, go for it, short term feeling rubbish will soon pass.
Hope you make the right decision.
Regards Tony F

[tomParticipant]

Hi Gill and Dave

It isn't a walk in the park but its a doable, I had mine in Dec 09 and am now still in remission and doing great thanks to my SCT.
Would I do it again ? In a heartbeat.

Good Luck with it all.

Tom Onwards and Upwards xx

[AlexBParticipant]

I had an SCT in march. Chemo (PAD) had got me into PR, appeared stable and no longer producing symptoms. But my consultant told me I'd be more likely to get better remission, for longer, with SCT.

It's not an easy experience – but not impossible either. 2 and a half months on, I feel very good – certainly better than I did on chemo alone – and my PR has turned into VGPR, with counts still falling. Assuming I get a few years remission out of it, I'd say its easily worth it.

[PeterJamesParticipant]

Hi Gill & Dave
Without a doubt , go for it
I had mine at the Christie on 17 th Jan this year , in for 16 days
The first 10 days or so aren't the happiest of your life , but so what
Once your neuts. start to rise from zero , you are on your way back, to this world & back hoe when they pass 1
Yes it leaves you somewhat bald ,tired & I was some weeks getting back onto solid food
But it is life extending & leaves my in GPR with a pp of three
Now nearly four months on from my escape I feel very fit & well
Any minute I will be 71 , the new 40
All the best
Peter

[gillhoganParticipant]

Dear all,

Thank you so much for taking the time to reply to my question. Dave had a meeting with the Transplant nurse, and after reading your comments ,has agreed to the treatment. I think deep down he knew it was the best way forward but hearing your positive messages has reduced his anxiety a little!
Hopefully he will be admitted within the next two weeks. So thank you again on behalf of us both.
Gill

[tonyfParticipant]

Dear Dave & Gill. I am sure that you have made the right decision. I hope it all goes ahead inthe next couple of weeks.
Remember if you have any fears about the transplant process or any worries about the after effects, just ask the forum.
Good luck.
Regards
Tony F

[MicheleParticipant]

Hello Dave and Gill

I know it's a very hard decision to make at the stage you're at. When I was told that my CTD treatment had knocked my PP count down from 46 to "a trace" in 6 months, I wondered if I should delay my SCT as I couldn't see how using my first batch of stem cells up could benefit me at that point.

However, I then thought "My myeloma has just been beaten down by drugs and is on the back foot now", so I decided to go for it. I could have left it until a relapse, but by that point I thought the myeloma is gaining strength again and may be harder to deal with.

Am I glad I did? In a word, yes.

I've got to be honest, the SCT isn't pleasant but it's only for a very short period of time and once those neutrophils pick up, if you're like me, you'll be feeling great again in a couple of months.
15 months on, I haven't looked back and the horrible experience has dimmed long into the past.

All the best to you both and keep in touch on here so that we can help you along!

Michele

[tomParticipant]

Hi Gill and Dave

Am pleased you mad your choice, and I hope you get many a year out of it.
Good Luck in your Road to Remission.

Tom Onwards and Upwards x

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