[MothasParticipant]

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

[MothasParticipant]

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 plascmacytoma around 18 months ago that has since developed into full MM.
I'm having PAD in the lead up to an SCT.

[MothasParticipant]

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 combination with the new drugs we'll see much more targeted and effective treatments. Good news all round.

tom

[MothasParticipant]

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 marrow test and multiple blood tests. All of which show no detectable level of myeloma. The only indication I have it is in bone damage in my back and ribs shown by an MRI scan i had before xmas.

If you have any concerns I would advise you contact your specialist again to discuss what happened.

all the best

Tom

[MothasParticipant]

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.

[MothasParticipant]

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.

[MothasParticipant]

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 killed off a lot of the good bacteria in my gut and left me vulnerable to infection.

It was a very difficult period and I spent a week and a half in UCLH and took around 3 months to recover.

I can't really offer any advise just this anecdote I'm afraid but the important thing to do is let everyone you come into contact with at the NHS have a complete picture of your condition and any treatment you may have had.

At UCLH I told the gastro surgeon and he liaised with my MM specialist (who also came see me in hospital).

[MothasParticipant]

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 be an option.

[MothasParticipant]

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

[MothasParticipant]

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

[MothasParticipant]

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. Would be very interesting to know.

again many thanks.

[MothasParticipant]

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 take domperidone for the nausea which is quite effective.

Velcade is meant to be a very effective treatment. I have one more injection this month and start my second cycle the following week.

[MothasParticipant]

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

[MothasParticipant]

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 statistics, much of the stuff about survival you see on the web and quoted at you refers to patients who may have been treated 10 or 15 years ago and since then there have been massive improvements in treatment. In the states they are debating whether MM will soon be reclassified from a fatal illness to a chronic one. More up to date statistics mention good average survival rates of 7-10 years and upwards. With lots of new treatments coming on stream in the near future that will push that average up even more, hopefully we're looking at a cure and I believe we have reason for cautious optimism.

I'm 47 and am determined to draw my bloody pension!

Thanks for the links to your photographs.

Tom

[MothasParticipant]

It looks like a bit of a false alarm, on that front Eva so one less thing to worry about. Thanks for your concern.

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