Hi Tina,

I have been there, re: back, spinal tumour, so I have great sympathy… but IMHO the medics have got it right. I had several high doses of radiotherapy a year before I was diagnosed with mm and stlll, a year later my stem cells had not recovered and I struggled to raise 2.1 million cells after 5 intensive, expensively boosted days in…[Read more]

Thanks Paul,

As always I'll keep in touch with progression for those that follow behind… and that list has grown an awful lot in the past three years.:-D Unfortunately.:-(

Dai.

Hi Bridget & Andy,

My shoulder is improving daily, so I am assuming that the Rev is doing its work. Now the the sharp pain has gone I have been left with a dull ache that pulls if I stretch out and up – so I try not to.;-)

Yesterday was a real boost… very, very early days but the indication is that I am tolerating the treatment with no…[Read more]

Hi Tina,

What exactly is your treatment plan? Is this your initial frontline treatment and have they mooted radiotherapy for your spine tumour?

Dai.

Hi Bridget,

You make me happy when skies are grey :-D. What a difference a few days of sunshine makes… I am hoping for a balmy, sunny, comfortable summer… for me, for you, for London and the olympics and for all those people who cannot get out and about and whose world revolves outside their window… seeing good weather is almost (but not…[Read more]

Hi Eve & Slim,

Time and distance… two strange phenomena. Last year must seem like a million miles away for you both… what with bloods and readings that contradicted each other, seemingly getting better but actually getting nowhere and Slim having to put up with strange and painful ways of measuring his mm…

…but here you are on the…[Read more]

Dear Nicola,

You must feel desperately cheated that your Dad has not had the chance to fight his way through the available treatments… and your Dad will be feeling the same. I am sure that there are many of us here who know that there were times of touch and go for us… but we got the chance to move on.

Even at this seemingly late stage…[Read more]

The very best of luck Andy… it sounds like a determined blast from the medics to get those pp's down a bit more… enough to set a plateau for your SCT (20 ish?).8-)

Although your pp's are resisting the treatments they are not moving either… so it sounds like a stand off. I am sure this rather drastic set too will do the job… and you…[Read more]

Hi Amelie,

They don't collect stem cells for a specific number of transplants… 2 is usually the maximum and that is determined by how may cells get harvested.

They usually hope for approx. 5 million = 2.5 per transplant. I, for instance struggled over 5 days on the harvesting machines, including two late night dashes back into the…[Read more]

Many commiserations on that score Tina.. that's how I started… but they failed to diagnose MM at the time and blasted the tumour with several high doses of radiotherapy over a six day period (A double dose on the Saturday, Sunday to rest and then single high doses Monday to Friday inclusive).

It did the job.. but fried nearly every stem…[Read more]

Hi Amelie,

I am glad that John is going to receive his 2nd SCT. They will use Velcade because it has a good chance of getting him to the right level but its effects last far less than Revlimid, which is a long term therapy (rather than a short term knock back). Revlimid will more than likely be John's next treatment… but the good news is…[Read more]

Hi Keith,

I trained on the early Macs (very basic computing skills) circa 1990/92 and fell in ove with them but settled for a PC at home.

My big dilemma came in 1998…. when I finally went for a custom built Gateway PC… which was a wonderfully easy to use machine, over a Mac. I finally switched to Macs (desktop and laptop in 2006 and I…[Read more]

Hi Helen,

That's alright then.;-)

On my second week, with my second Dexday yesterday… so feeling tired but not much sleep.:-/

My shoulder is improving slowly, so I am hoping that that is the Rev doing its work 😎 . I have also felt a little sore in the areas of my ribs where pain was recurring, so once again I hope that that is the…[Read more]

Hi Mavis,

I just checked in and looked up and down this thread a few times because I know I answered earlier… ???

Still, it's either in the ether or otherwise I binned instead of sending… its 'Dexday' TM, so nothing would surprise me.;-)

CDT was not exactly pleasant… putting chemo-chemicals into your body and asking them to seek…[Read more]

Hi Nicola,

Velcade worked brilliantly for me… I had six infusions but nearly all the good work was done in the first 2 or 3 cycles… including bringing my kappa light chains (Bence Jones Myeloma) to 0 and deleting a secondary tumour on my sternum on the way.

The downside was that as soon as they took me off the treatment my myeloma…[Read more]

Hi Chris,

I'm glad to see that your pp's are dropping steadily… the more i see and hear about mm the more convinced I am in the 'sure but steady' aspect of treatment and response. In America the medics seem to follow the 'little but often' approach and they are getting much, much better results than us… + they are also not slaves to the…[Read more]

Hi Mavis,

My consultant hasn't ordered any new scans etc., saying that while it might be a coincidence, where myeloma is a factor she doesn't believe in coincidences. Remembering that this is not in isolation… I do have other, older areas that have flared up at this time, specifically in my ribs.

I go back next Monday (week tomorrow) for…[Read more]

Hi Tom,

I was due to start Rev & Dex on January 9th but I was (easily) persuaded to hold off on the chance of getting on an active trial for Carfilzomib (of which I have heard nothing but praise). To qualify I had to have 0.5% myeloma present in my urine.. which I didn't manage to achieve over 3 x 24hour urine collection tests conducted over…[Read more]

I'm having a rough few days at the beginning of my Revlimid & Dexamethasone regime… not helped by a 'frozen shoulder' which in truth is a new area of mm. So, while I am feeling a bit sorry for myself I know that a couple of decent nights sleep, a bit of pain management and upkeep of my liquids will soon have me feeling much better.

The…[Read more]