Hi Eve and Helen.

Helen I hope the strong painkillers didn’t spoil your trip to Cornwall. I know they work killing the pain but I find they space me out and zombiefie, if that’s not a word it should be, me. Back pain? Not feeling up to much? I think that is a complaint a lot of us have unfortunately.
I’m starting my 8th cycle of Pomalidomide and…[Read more]

Hi Maureen.
When I stared out Revlimid I was just on Rev and Dex. Cyclophosphamide was added to the mix a little later. Initially my PPs didn’t move much but, I think I’m quoting Dai here, Rev is known to be a slow starter. Anyway I ended up having 22 cycles of it.
Dex actually fights myeloma in its own way and sometimes is used on its own.…[Read more]

Hi Fiona.
I was put forward for an Allo over 2 years ago because I didn’t respond to any treatments. At the time it was regarded as a matter of urgency. A match was found and detailed blood analysis was done. Unfortunately the match wasn’t exact and I was told though the mortality rate was 20% in this case I’d probably not make it out of hospital!…[Read more]

His kidneys must of recovered well because they don’t usually prescribe CDT if there’s any kidney problems. Velcade is the usually the drug used for people with kidney problems. Steroids can bring on diabetes.

Every day is a gift

Andy xx

Wow Fiona.
Philip has been through the mill. Like you said in your original post he’s had no respite.
It’s strange how different levels of PPs cause problems. I read online of someone who gets problems when they go above 5!
I was put forward for an Allo unfortunately the only match they found wasn’t quite good enough. Luckily I got 22 cycles out…[Read more]

Hi Fiona.
Seems as though I read something that wasn’t there. I’m sorry.
Why is the doctor pushing Philip along the Allo route isn’t an Auto SCT an option?
What was his last treatment? Was it Velcade because that in some cases works well at getting the paraproteins down but doesn’t keep them down for very long.
Which ever route Philip goes down I…[Read more]

Hi Loopyladye.
First of all welcome to the forum though I know you’d rather not need to be here.
I know what you mean about the relief of diagnosis. I had a bad back for 18 months before I was finally diagnosed and it was a relief to know I wasn’t imagining it and it had a name then came the shock as it sank in I had an incurable cancer.
I was in…[Read more]

Hi all.
I agree with all that Chrissie and Rebecca say.
Though I’m not as optimistic as Chrissie about a daily tablet to maintain our condition. My reason? It’s because myeloma isn’t a single disease or maybe that it’s not caused by a single entity. That is why we all have different journeys and react differently to different drugs. Genetics are…[Read more]

Hi everyone.
Welcome to the new newcomers to the forum.
Nikki – myeloma is cancer of the bone marrow, plasma cells in reality. They go wonky, for want of a better word, and start producing paraproteins, which serve no useful purpose.
They compete with your white cells I think and this is why you will become susceptible to infections and find it…[Read more]

Hi Fiona.
I was diagnosed Oct 2011 with my PPs at 49 the lowest my PPs have been was 11.4 but not for very long.
Never been in remission and went through all the standard treatment in a few months none of them worked. Then went onto Revilimid which wasn’t widely available at the time and got 22 cycles of stability before that ended. I’m now on…[Read more]

Hi Maureen.
I can understand what you mean about using up the treatments available too quickly. I got through most of the standard treatments in six months and none worked. I was put on Revlimid as a last hope, it wasn’t standard treatment then, and after a slow start plus the introduction of cyclophosphamide it got my PPs down to the mid teens.…[Read more]

Hi David.
You do seem to be giving the medics a run for their money. Boring out your prostate doesn’t sound like fun! and now a lump of flesh to be removed as well! Makes having you two teeth extracted sound like a walk in the park.
You’ll be glad when July is over.
I get to see my consultant at the end of the month I wonder what she’s got in…[Read more]

Morning Nikki and Wendy.
First of all steroids will give you lots of sleepless nights it’s a very common side effect of Dex. They lift you up and you’ll talk a lot! Maybe eat more than usual and possibly even work around the house doing odd things! Then you’ll crash and become moody and argumentative. Such is the joys of dexamethasone. Oh and…[Read more]

Hiya Vicki
I only take Dex once a week now. 40mg every Tuesday! So I’m usually awake Tuesday nights and part of Wednesday night. Though it’s not been to bad this week.
My PPs showed a slight rise at the end of last cycle tut guess I’ll never get them down to single figures. I feel ok though my back is starting to let me down again.
I’m sure…[Read more]

Hi David.
Hope your visit re prostate goes ok.
I’ve had a catheter in for at least 2.5 years now guess I’m used to it now! Though it can be a nuisance at times especially in a pub!
My appointments seem to be piling up and they’re spread over the next 5 months though none clash with anything planned as yet. My main worry is my back review in…[Read more]

Hi Nikki and Wendy
Welcome to the club that none of us would choose to join.
First multiple myeloma as you may already know is a cancer of the blood marrow. It called multiple myeloma because it can present in many different places. The most common first symptom is back pain. Which was my introduction to meyloma. Other indications are broken bones…[Read more]

Hi James.
There are so many variables involved with myeloma that it’s hard to give you any information without knowing your circumstances.
That fact that you had Velcade then a SCT suggests you may of had kidney problems, that’s if Velcade was your first line of treatment. After your SCT you sound like you were put on a maintenance dose of…[Read more]

Hiya Vicki and Colin
Just reread your initial post. If your consultant is leaving it for 6 weeks before Colin’s next blood test I would say he’s not to worried. He probably thinks it’s blip caused by the infection but can’t come out and say it in case he’s wrong. The blip could also be caused in the lab because no two test can be exactly the same…[Read more]

Hi David.
It does bu**er about with your plans having to fit in hospital appointments around life. My memory ain’t what it was and I have to rely on Steph to keep everything flowing as smooth as possible.
Sorry to hear you prostate cancer is causing you problems.
Are you sure you just don’t have an aversion to dentists and your doing anything to…[Read more]

Hiya Vicki
I wouldn’t worry about a one off raised reading. There’s loads of reasons why that could of happened from Colin’s illness to a mistake in the lab! Even if it is an upward trend it could take a long time before Colin needs treating. If Colin is feeling good and the rise isn’t causing any problems I think they’ll just monitor the…[Read more]