I empathise hugely.
Tomorrow I see my specialist, I try to put it to the back of my mind before I actually cross the threshold of the hospital. But it's hard not to run through a few scenarios beforehand.

Lost your parking space. Not good, no tablets for that I'm afraid.

all the best

tom

Good luck with it David.
Yes, I have a blood test on the day of the injection too.

I'm in my third cycle of it now, and have tolerated it well.

I did get a couple of eye infections, apparently it's one of the rarer side effects, they call it "velcade eyes"
I've had some very mild neuropathy and a little bit of nausea for 48 hours…[Read more]

I'm just about to finish my third cycle of velcade subcut.
The injection itself is in to the fleshy part of the stomach and is not too painful.

The first couple of cycles i tolerated really well with only minor kickback from side effects. Tiredness some afternoons and a bit of nausea occasionally but nothing too bad.

My third cycle this has…[Read more]

Hi Andy, I can't answer this I'm afraid but I would hazard a guess that having myeloma shouldn't affect you at all.

However, if you are undergoing treatment you may be advised not to drive if you are taking certain combinations of drugs. I'm having the same PAD treatment as you will be and nobody has told me not to drive.

Welcome to the club mate, bad luck!

I'm having PAD too at UCLH leading to a stem cell transplant soon'ish.
I've nearly finished my third cycle so if you want any advice or insights drop me a message.

Tom

Hi Rebecca, as far as my understanding and research goes, it depends on genetics rather than age as to whether your myeloma is counted or diagnosed as 'aggressive'.

My consultant at UCLH actually told me that the younger you are, the better your prognosis, and that's backed up by the statistics that I've found.

I'm 47 and was diagnosed with…[Read more]

Yes from what I can glean from the project it's about finding much more effective ways of tracking the hidden components of myeloma that can ambush at later stages. In doing so they can target treatments much earlier and blatt the little buggers effectively clearing out the residual disease.

So this is progress in testing regimes which in…[Read more]

Hi Ali
I've done 2 or 3 of these.

I'm not an expert but I would have thought that you have been asked for 24hrs worth of urine because they need it over that time period to be certain if there are any proteins being produced.

And yes, it is possible for myleloma to be active even with a negative BJ test. I've had a recent BJ test, a bone…[Read more]

Ted I believe that Diverticulitus – if that's what you've got, can be treated by antibiotics if it hasn't gone too far. So you may not need an operation.

I think it's a bit of a post code lottery with zometa.
Some people seem to be almost permanently on it, others only for a year or two.

Ted last year I had a colonoscopy as I developed diverticulitus which without going into too much detail is a cyst which grows out of the colon. I wasn't given much choice as it could have been fatal.

I had, had a year of prior treatment with chemo and radiotherapy for my plasmacytoma and the specialist thought that the combo of drugs had…[Read more]

Yes this has been bought up recently, a one stop thread for people looking for insights into the various treatment experiences that other MM patients have experienced.

On other forums you can make threads permanent, i.e. they stick at the top of the page regardless of what other threads have been started. If we are to do this here this should…[Read more]

Keith I don't know you of course, but you come across as someone with great dignity and strength. Keep fighting.

That's shocking really isn't it.

I considered taking early retirement as someone with a terminal disease but looking at my pension to qualify for 'sick pension' you practically have to be dead. It's the Teachers Pension Scheme and the medical assessments are done by ATOS. Don't laugh.

The other Tom

Thanks for the kind words everyone. Next week I'll be halfway through my second cycle. It's gone quickly and then perhaps straight into my stem cell transplant. Blimey.

Given I'm interested in tracking all my data I'm wondering if anyone knows of where the costings for specialists might be found, hours etc. Even specific treatments such as SCT.…[Read more]

Hi Trish, sorry to hear your news.

I'm taking velcade at the moment. I've had 3 injections along with Dex and Adriamycin as part of my PAD treatment.

The first couple of weeks, I had no side effects whatsoever. This week I notice a mild neuropathy (tingling in my hands) and I've felt a bit nauseous with headaches the last couple of days. I…[Read more]

Great news, congratulations. My SCT is looming so it's great to hear news like this.

Grayham stick in there mate. I was diagnosed just before xmas with full MM after previously having plascmacytoma. I'm having induction therapy of Velcade, Doxyrubicin and Dex for two cycles followed by a Stem Cell transplant, sometime around April I guess if all goes well.

I wouldn't take much notice of the 'give him another 4 years' type…[Read more]