[HelenRParticipant]

Hi Tom,

My heart goes out to you, having to do it not once but twice.

Thanks also for finding out what happened: as someone who hasn't had an SCT but has little stem-cell ready-meals parcelled out and on ice somewhere in a hospital in East London, I dread to think of any kind of systemic failure which would mean they were all actually wasted. It sounds like there are at least systems to pick that up, and I suppose human error is inevitable… just so scary when so much depends on it! I'm glad at least that you were able to find out now when you could re-do it immediately, not years down the line.

Good luck with Round 2! You really deserve some sort of extra myeloma medal for the double whammy….

Helen

[VickiParticipant]

Tom

Good luck with this next collection, Colin winced when I told him about your circumstaces, in fact he looked really upset, as one who has been there. You have been on our minds…..you are a star for taking things so well….wishing you all the very very best

Colin and Vicki xx

[MothasParticipant]

Colin, Vicki and HelenR

I'm good, I had my first 2 injections last night so I'm already a quarter of the way there. I know there is pain to come but with pain comes results.

I should also say at this point that UCLH have been totally transparant with me and extremely supportive. I was a little sad about the error, but overall up until this point, the treatment I've had there has been absolutely top rate.

[eveParticipant]

Hi young Tom

That is what you need honesty ,we know mistakes happen,but often if its explained it is more acceptable,there must be other people in the same boat, (no pain no gain ):-S a little bit of pain never hurt anyone>:-( ra ra ra,sorry do not believe it,get the pain relieve out. ( I am a coward) So I do feel for you.

The rest will be a bit easier after all of this. My best wishers and thoughts are with you.Eve

[MothasParticipant]

Eve, they packed me off home with a big carrier bag of pain killers of many varieties. I'm like you, no point in suffering if there's some relief available.

[scott9Participant]

Hi Tom,

I've just seen what has happened to you and all I can say is HOLY MOSES!. Life is tough enough for us without that happening. Huge sympathy from me. At least you should still be OK for stem cells second time round. I have to start my GCSF injections next Saturday – two in the morning and two in the evening. For four days – I'll feel like a pin cushion. Then if it works (second time lucky?)I'll be hooked up to the machine the following Wed, Thur and Fri. I believe I have to be in the hospital from 0830 till 1700 each of those days. Seriously not looking forward to that.

Nil desperandum and keep fighting.

Scott

[tonyfParticipant]

Hi young Tom & Scott.
I've just checked back on the events around my stem cell harvest. Like you both I had the GCSF injections, two at a time for 4 days. Then at 6.00pm the evening before stem cell collection I was given an injection called Mozobil ( also known as Plexifor )
This evidently helps to improve the release of the stem cells.
I had to return for a second day of stem cell collection, so at 6.00pm that first evening I was given another Mozobil injection.
Enough cells were collected over the two days and I was admitted the following week for the transplant.
I am not sure if all hospitals give this Mozobil injection, evidently the cost per injection is £5000 yes £5000!
My hospital is the Leicester Royal Infirmary and that exercise cost them £10,000, so perhaps not every authority give Mozobil as standard.
Scott, lying still for that length of time is uncomfortable but heck it's worth it when they tell you some months down the line that the transplant was a success and you are in remission.
Good luck to both of you.
Regards
Tony F

[MothasParticipant]

So yesterday I had my sem cells collected. Again!

After four days of mega, GCSF injections I managed to produce 2.1 million of things. Not as good as the 8.7, I managed a couple of weeks back but enough not to have to go back today.

This time round I didn't suffer anywhere near the pain I did previously prior to collection. Some mild pulsating around the back and hips but not even worthy of a paracetamol. I felt a bit out of sorts but no temperature or nausea.

Last night I had a whopping headache and was very tired. Today, i feel better.

So on we go, I'm expecting to get them back within a week or so.

tom

[bandityogaParticipant]

Hi Tom

Glad things went well and hopefully the SCT will go ahead as planned this time.

Wishing you well

Maureen

[jmsmythParticipant]

Hi Tom glad you got the cells and hope everything goes to plan. After what you have been through you deserve a very easy ride.
My best wishes
Jean x

[VickiParticipant]

Hi Tom,

So pleased you got the right number! Good luck with the sct…..you deserve all the luck in the world given what you went through to get here 🙂

Vicki and Colin xx

[tomParticipant]

Hey Young Tom

Lord knows how I missed these last posts of yours???? but Bloody hell that just aint Good enough to have spoilt your Cells >:-(
But am pleased you got another go so fast.
Pleased you got enough albeit fewer than last one, I hope they sort out the problem they had and alerted all other transplant Hospitals.

Stay strong Young Tom

Tom Onwards and Upwards

[Kazzam2Participant]

Hi tom,

Not been on for a while. This is great news, hope all goes well for you.

Best wishes 🙂 Love Karen
xx

[Author]

Posts