[MothasParticipant]

Dai that's great, Velcade is a powerful treatment as my consultant keeps telling me. I'm delighted for you, you've had a great response.

t

[MothasParticipant]

Carol, I was initially diagnosed with a plasmacytoma in my right scapula a couple of years ago. It was a large mass that did quite a lot of damage to the shoulder region. I also have a small lesion in my left scapula.

so yes you are right, commonly damage from MM occurs in the spinal and rib areas, but not exclusively.

I can't help with CTD i'm afraid as I had PAD.

all the best

tom

[MothasParticipant]

Dear people, I hope you don't mind if I don't respond to each of you separately.

As far as I can make out there was a problem with the preservative they used to store the SCs in the lab. They used a preservative protocol not currently employed by the hospital trust so it didn't match when it came back. Basically this lead to 'clumping' of cells and they didn't want to risk using them.

It's all a bit vague at the moment but I hope to find out more later.

I will be starting the mobilisation injections again in two days time (thursday) they've given me a double-dose (2 injections) over 4 days. They aim to collect on Monday.

@Dai
To sue or not to sue. I'm not really the type, I did very briefly toy with the idea but will settle for an explanation of what went wrong and assurances that protocols are in place for it not to happen again. I was reading a book about someone with cancer who did go this route and spent so much time, energy and emotion doing it, ultimately they felt it was unproductive. I fully accept that for some this is absolutely the right way to go though.

Dai, I will also be seeking clarification about how many SCs I might have to harvest next week. I do seem to have responded well to the stimulation before so hopefully they'll be able to extract some again. Given they've booked me in for another collection next week they obviously feel there's a good chance. Fingers crossed.

How do I feel this morning? Demoralised and fed up. One of the positive side-effects of 'this bloody disease' (TBD) is that it has taught me resilience though, so in the spirit of Dai's 'responsible adult agreement' (please let me indulge it to the full).

Fuck it. We go on, and we stick it to the disease!

tom

[MothasParticipant]

Dear everyone thanks for the sympathy.

As Helen points out at least they found me before the chemo.
I'm due to start mobilising injections this week with collection next Monday. Great joy.

I don't blame the NHS, sh*t happens, apparently it was a whole batch of folk not just me..

At least I know what's coming and hope to avoid hospital this time..

Thanks again for the collective wisdom.

T.

[MothasParticipant]

We're not allowed to swear on this site so this will have to do £$$$@@@**!!??.

so I go in today, have the picc line fitted, wait for the doc to give me the go-ahead for the melphalan. I'd already 'checked into' the UCLH hotel.

I then get called into a side room and told unfortunately there had been a mistake with the preservative in the lab and my 8.7 million stem cells were unusable. I will now have to go through stem mobilisation and collection all over again.

I didn't weep but I could of.

Back at home really p&%%%% off.

[MothasParticipant]

Ha, ha, yes i've packed plenty of pyjamas peter. I'm all ready to go and will be updating on the site.

[MothasParticipant]

Sonny thanks for the tips, I'm all ready to go Mephalan tomorrow, stem cells back on tuesday.
Sort of looking forward to checking into the UCLH hotel…. 🙂

[MothasParticipant]

Thanks John, yes please raise a glass of beer for me as I wont be able to have one for a while.

[MothasParticipant]

Wow! Something to aim for! Congrats all round.

I've just packed and ready to go in for early tomorrow.

Well done Geoff.

[MothasParticipant]

Phil, Tony, Dai, Helen, San, Vicki and Colin

Again thanks for everyone's collective support and wisdom, I'm on and ready for monday!
I will update on the board, people can also get extended narratives on my website.

🙂

http://bloodandbones.org/

[MothasParticipant]

Hi Eve, liz, wendy, Tom senior, Vicki and colin, Tony, Helen, Mavis,

I was more non-plussed than anything I think. I did manage a nonchalant response 'we're all going to die at some point' smiled and walked off. He was genuinely on a wind-up and wanted a rise from someone. What a sad and weird character.

We've all faced this kind of idiocy at some point, I thank you for your collective wisdom.

all the best

Tom

[MothasParticipant]

Enjoyed reading that. Had to do it in stages mind 😉

Glad your super smart young doc found a way forward for you dai.
All strength to you.

[MothasParticipant]

Michele, Ali, Tom, Scott, Jen

Well it's on, I'm booked into UCLH monday to have my high does Mephalan and the stem cells back on tuesday.
They're doing it in ambulatory care so they put you up in the UCLH 'hotel' and which is right next door to the centre and you go in every day for monitoring. At about day 5 they take admit you.

thanks all for the kind words, and the mouthwash tip is engraved in my brain.

t.

[MothasParticipant]

@san, Vicki and Colin, Maureen, Andy,

Thanks for the kind comments. I?m managed to time my treatment for the emergence of some decent weather. It?s good for the mood.

@ David

Tom senior suits him. I?m sure he?s secretly delighted 😉

@Helen

I?m not feeling too bad at the minute. Every now and then a bit tired but I?m sure it?s all to come. The nurse said to expect bone pain as a side effect of the GCSF injections so something else to watch out for.

@ Denis, Mari

Thanks for the good wishes. It?s hard to believe (and stomach) how we end up at this point sometimes. 18 months ago I was happily toddling along without a care in the world.

Stiff upper lip and all that.

Tom

[MothasParticipant]

It's great here, I just wish we didn't have to meet like this 🙂

tom (not to be confused with tom senior)

[Author]

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