Hi All,

That’s really fantastic news, Dawn, that your SCT has produced such an excellent result, even though you had to go through a lot of unpleasantness to get there. Really delighted that you’ve now got over the nasty effects of the high dose chemo. Like Ian, I’ve wondered if you get a better result from the SCT if you have a bad time; but…[Read more]

Hi folks,

I’ve been hanging back from posting until I’d got my first blood test results since being discharged from the Freeman after my SCT. Well, I’ve now got them and, while my blood counts are fine, my PPQ has gone up to 13g/l (it had been hovering around 9 before I went in). Not what we’d been hoping but, I guess we’ll have to wait for…[Read more]

Hi Mervyn,

I came home from my SCT just a week ago and, apart from feeling rather queasy during the night after the Melphalan, I had no significant side effects at all! I guess I was really lucky. One of the consultants said some people just sail through the whole thing so I do hope you’ll be one of them. But if not, you’ll be very well taken…[Read more]

Dear Andrea,

I’m  so sorry to hear you’ve been having such a rotten time lately. You must have been thinking you were “out of the woods” so long after the SCT. You were doing so well! Just shows how unpredictable our situation can be, I guess. I hope the antibiotic sorts things out for you quickly and you can get on with recovering fully from…[Read more]

Hi Andrea, Dawn, Ian and Polly,

I’m finding this a difficult post to compose in case it sounds rather “what was all the fuss about”, as I know people often have a really rough time with their SCTs. If it comes across like that I do apologise; it isn’t my intention.

I’m back home again after my SCT and feeling fine. I have to say I think I have…[Read more]

Hi Andrea, Dawn, Ian and Polly,

Delighted to hear your recovery is going so well, Andrea, and that you are managing well on the CTD, Dawn. Sorry to hear about your carpel tunnel syndrome, though, Andrea. One of our daughters is troubled by that and finds it a real nuisance.

I have, at last, got a date for my SCT – 23rd June. The week before last…[Read more]

Hi Andrea, Ian, Dawn and all,

Apologies for not posting for a while; been trying to get out for walks etc. and the garden is demanding attention now, too. Life seems to be busier than ever or maybe my brain has slowed down, so I’m simply getting less done in a day!!

The Newcastle Information Day organised by MUK (in Gateshead!) was excellent,…[Read more]

Hi Dawn, and all,

That’s excellent, Dawn!  Sounds like your Myeloma is responding well to the CTD. Keep it up!

I’m not sure if the cytogenetic testing is done for everyone, or only certain places or in special circumstances. No-one has mentioned it to me here. My wife and I are going to the Infoday in Newcastle on Saturday, so I’ll ask the…[Read more]

Hi Andrea. Ian and Dawn,

Brilliant that your PP has gone down, Andrea. Hope it stays down for a long time! You are sounding good in your posts, so I’m guessing you are feeling much stronger.

Unfortunately, my last PP test showed a rise again, from 8 to 9g/l. However, I don’t get any decimal places quoted, so I suppose it could have gone from 8.9…[Read more]

Hi Dawn, Andrea, Ian and All,

What a shame you’ve had to start treatment, Dawn. I was a bit fed-up when my MGUS diagnosis changed to Myeloma last June. I, too, was on CTD; six three-week cycles, back to back, and didn’t actually find it too much of a problem. I had a couple of odd rashes early on, that came and went away within a week or so. I…[Read more]

Hi Andrea,

Just spotted your post that your SCT was going to happen, indeed will have happened, in February after all. Hope it’s going well and hasn’t been too bad going through the “rubbish” phase that everyone warns about!

The very best of luck with the outcome. Spring and, with luck, better weather, will greet you when you’re discharged. Enjoy!

Peter

Hello again Andrea, Ian and everyone,

Apologies for not posting for a while, too many distractions and uncertainties. Hope you are both doing ok, and you were able to enjoy your son’s wedding, Andrea, while waiting for your SCT. Have you actually got a firm date for that yet?

Regarding my VCD treatment; the first cycle dropped my PP from 12 to…[Read more]

Hi Andrea, Ian, everyone,

Good to hear from you again, Andrea, although I’m sorry to hear your SCT has been delayed. Like me, you’d probably rather have got it done and over with. On the positive side, I guess you can look forward to your son’s wedding without thinking about your SCT happening  just afterwards.

It’s interesting how treatments…[Read more]

Hi Folks,

The sister queried my having a cold with the consultant this morning, and the decision is to start the treatment as planned tomorrow, and if we need to stop, we’ll stop! Apparently, they need to see an 80% fall in PP level from the original at diagnosis before I go in for the SCT. She said not to worry about the FLCs. They are always…[Read more]

Hi Ian and Andrea,

My case was discussed by the MDT at the Freeman Hospital in Newcastle on Friday. I had a call from the Specialist Nurse (Sister? – I’m a bit unsure about uniforms and statuses!) at lunchtime. She said my PP result had come back from the lab as 11g/l. I thought that was great, it was coming down again (from the 13.1g/l they had…[Read more]

Hi Ian,

Thanks for that info. It’s looking like I may not be on the agenda for the MDT meeting this Friday as my PP result doesn’t seem to have come back from the lab yet, so it will probably be another week before I find out for definite what’s in store!

How did you find the Velcade in comparison with the CTD? I’ve not come across “CTDa”…[Read more]

Hi Andrea,

Many thanks for your reply. Sorry to hear your PP didn’t stay down too. I didn’t have the Cyclo prime before the stem cell collection, just the G-CSF injections for four days. Did the cyclo lower your PP level again, and has it stayed down? I had another blood test just before Christmas to see whether my PP level had continued to rise,…[Read more]