[MothasParticipant]

Scott I took it before I started treatment.

I asked my specialist about it and she said it probably wont do any harm but there's no substantial research to suggest it is effective in it's anti-myeloma properties either.

I was also advised to stop taking all supplements during treatment so as not to interfere with the effects of chemo, so I'm not taking curcumin currently. The specialist said they simply don't know enough about possible contradictions with chemo treatment and best to be safe than sorry.

I will be taking it again from around March which will be 9 months post SCT.

Tom

[MothasParticipant]

>:-)

Yes nearly a monty and a half now 🙂

[MothasParticipant]

>:-)

Yes nearly a monty and a half now 🙂

[MothasParticipant]

Christine that's great news. I wonder if there might have been an error with his previous blood tests. It can happen.

[MothasParticipant]

We have proposed these kinds of dedicated threads before but they never seem to happen.

My personal preference would be to keep the dedicated science research threads separate from the self-help stuff as former has a firmer basis in a proven knowledge base.

[MothasParticipant]

The actual process itself is fairly straightforward and all takes around 5 weeks including collection and return of cells and isolation. But most people have an 'induction' therapy prior to that which can take several months. This involves various cycles of chemo.

If you go to the macmillan resource section at this link:

http://www.myeloma.org.uk/patient-services/myeloma-uk-publications/myeloma-treatment/high-dose-therapy-and-stem-cell-transplantation/

You will find a very useful PDF document that goes into great depth.

Tom

[MothasParticipant]

I'm not on PADIMAC but I've received the same treatment as those that are on it at UCLH.

You start with an induction chemo treatment of Velcade, Dex, Adriamycin and then go on to a stem cell transplant which I've just had.

It's supposed to be a state of the art treatment but like everything myeloma related it works better for some than others.

Let me know if you have any specific questions.

Tom

[MothasParticipant]

An hour and a half of poking. Yikes, the two I've had have taken about half an hour.
I'm due one in around 3 weeks time and I'll be having sedation this time.

The person doing it has to be pretty strong as they need to dig deep into the bone.

[MothasParticipant]

I met someone at the UCLH clinic a couple of months back who'd had MM for 10 years too.
Thanks David.

[MothasParticipant]

I think this is new research Eve. This specifically deals with relapse in the round not just for higher risk patients and it looks at why proteasome inhibitors are eventually surpassed. I think it's important stuff and the fact that it is already going into clinical trials and may be amenable to existing treatments is very promising.

[MothasParticipant]

Before mine developed I was always told to look out for increased need to pass water, weight loss, aches and pains.
But Tom is right, best way of finding out are blood and other tests such as MRI and bone marrow biopsy.

[MothasParticipant]

Eva were you a member of the TPS (teachers pension scheme)?
I'd heard it was extremely difficult to get anything out of them unless you could 'prove' you were 6 months from death.

[MothasParticipant]

Scott, day by day.

The last couple of weeks I'm feeling much more myself and plan a limited return to work at the end of the month. It gets easier.

Are you home yet?

[MothasParticipant]

Barry, I had my SCT about a month before you at the beginning of July at UCLH.

The immediate period of recovery can be pretty unpleasant but now nearly 10 weeks on I feel pretty good. I'm eating normally and doing around 45 minutes of exercise everyday. I plan to return to work at the end of the month (initially only a day a week).

Take it a day at a time, and the fact that you're dreaming of cheese salad sandwich is a good sign! Why is hospital food so revolting?

You're bloods will rise and you'll be home soon enough.

Best of luck with it.

Tom

[MothasParticipant]

Aciclovir is the anti viral I take to ward of shingles.

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