Hi Dee,

Thankfully I have never suffered with kidney problems, although my Myeloma, the Bence Jones (light chain) Myeloma, is supposed to be 'high risk' for kidney problems.:-(

In a nutshell there are two main kinds of Myeloma:

Heavy Chain: Measured by the amount of Paraproteins in the blood.

Light Chain: Measured by the amount of…[Read more]

Hi Scott,

I am on Cycle 6 and my light chains have yet to settle which is a bit disconcerting but while they are yo-yoing up and down they seem to be staying within the same parameters as the beginning… so my consultant 'is not panicking'. I asked her about my Dex dosage and she said she won't consider a reduction until my light chains come…[Read more]

Hi Tina,

I have had quite a few dizziness attacks over the past four years, similar to your experience after a sudden move or burst of energy. I can't directly recall if they occurred after coming off treatment but they tended to be a series of 'one offs' rather than a continuous bout.

I have always blamed my medication but if your attacks…[Read more]

Hi Amelie,

I subscribe to the newsletter for the information regarding new drugs and treatments but I have not tried to engage with their members board because we are always a year to eighteen months behind and so there is no dialogue that we can share on an equal basis. 🙁

The most interesting concept to come from the USA is there belief…[Read more]

Hi Jo,

Sounds like you had a good time, even if some of it was through your grandson's eyes. I have only visited the IOW once, for a three day stay when my then Brother-in-Law was a prison officer at one of the high security prisons. I said in 1978 that I would definitely go back because what I saw of the Island was very attractive… but…[Read more]

Ouch!!!! 4 hours??? I'd be writing a horror story, never mind a letter. Slim's veins must be akin to optic fibres. When is he due to have it out? At least that shouldbe much easier. If it looks like being a rough job I'd ask for a sedative at the very least.>:-(

I had mine (badly as itturned out) fitted by a radiologist Doctor whohad the…[Read more]

Great news Mari, Stephen has done well to get to 2.1m… exactly the same as me. Due to my extended week on the harvester my Hickman Line fitting had to be moved but they had already booked me in for my Mephalan for the following Wednesday (presuming my HL had been fitted on the previous Friday).:-P

So I had to have my Mephalan and rinse…[Read more]

Come wind and rain, blow and drench,
Drizzle and fan the leaves on the trees
For I am well and well enough
To take whatever you bring with ease
But Summer is here despite your trials
And look the sun has found a space
That I may walk my garden path
Enjoying the warmth from Sol's bright face

Hi Eve,

All's well here and it looks like…[Read more]

Hi Amelie,

When Calgene were granted their European licence the 7% risk was not known… that evidence was gathered during the first couple of years in use. The European licencees then asked for further evidence/trials from Calgene who decided instead to withdraw Revlimid as a partner drug and maintenance drug to concentrate on its values as a…[Read more]

I asked my consultant about Curcumin last year, just as I was about to start my Velcade treatment. Unlike her she gave a big sigh and placed her hands on her desk. Not verbatim but this is the gist of her reply:

'I am sure that there are a number of supplements and vitamins that will help Myeloma patients with their general health… but they…[Read more]

Back to the Day Case Unit for blood tests and check up. Eveerything's back to normal in the stomach and bowels, my HGB remains at 9.0 (10.1 on Monday, 9.0on Wednesday) but it should start to pick up now that I am returning to normal. The good news is that my Neutrofils are improving (1.5 on Monday, 2.3 on Wednesday and 3.5 today) todays 3.5 is…[Read more]

Hi Stephen,

Unfortunately it looks like I lost my bet which was for Tuesday 17th and your first show was actually Monday 16th with that 0.03. Still, I'm happy to lose because it got you home a day earlier. Your readings will go from strength to strength each day now but please take it very easy for the first few weeks at home.

Surrounded…[Read more]

Hi Amelie,

John may get quite a good remission from his SCT and after that there is Velcade, if he hasn't already had it, Revlimid and the a number of now trialled but by then licensed shorter term treatments which will take him into end of life procedures… but that could be years to come. 😎

Reconcile yourself to the fact that MM is…[Read more]

Hi Keith,

You are of course completely right… all MMers deserve the right to be treated equally but we know for certain that that is most definitely not the case. It is not a deliberate course of action, I know that. It is, in most cases a result of an unfair post-code lottery. Those authorities with higher funding tend to produce…[Read more]

Brilliant.

I am glad you are out and at home. As Woody Guthrie said:

[b]'Take it easy but take it'.[/b]

Now… for the important Q. When did you first achieve 0.1 or more? I placed a considerable bet with myself that it would be Tuesday the 17th.

I hope I am right because I will treat myself with my winnings 😀 but either way I…[Read more]

[quote]'I may look ok but inside I'm dying'[/quote]

Thanks Andy… I suppose we all have felt like saying that at one stage or another… but because I believe in the law of attraction… i.e. we get what we think… these days I prefer to think:

'I may look ok but I have a terminal disease… but a terminal that is several stations down the…[Read more]

Hi Mari & Ali,

As someone who spent 5 days on the harvester plus 2 midnight returns to the hospital for Plerixafor injections my sympathy levels are muted. I was more than happy to spend the time on the machine and the midnight flits, even though I was tired and each trip was a 40 mile round journey. I don't mean to sound harsh but my mantra…[Read more]

Hi Eve,

Last winter Janet had two colds, one with a cough that seemed to last an age but I didn't catch either of them. I don't understand why I didn't catch her colds but I am grateful that I didn't.

My stomach bug is/was just that… our Grandson, who stayed with us last Friday has been off colour these past few days, complaining of…[Read more]