Hi James.

Your right I got it wrong apparently different patients show their in different readings. Some can only have their myeloma measured by bone marrow biopsy. I do know they don’t take any reading in isolation. Some have high paraprotein levels and aren’t treated immediately others have low paraprotein levels and get treated straight away…[Read more]

Hi Susie.

No advice really. I took my cyclophosomide on Sundays so I could be off colour Mon, Tue, Wed, and sometimes Thursday so I could enjoy the weekend when Steph was off. That only happened weeks 2 & 3 of each cycle due to the Dex effect week one. I took my Cyclo with lots of water but even though I was on Cyclophosamide over two years I…[Read more]

Hi Jean.

They seem very strict criteria for Mikes PPs. Though I think I achieved it and I’ve just started my 12th cycle I guess it depends on the criteria by which you qualify for Pomalidomide. Is Mike on a trial?

My wife still works and is sneezing all the time but remarkably I’m doing ok.

I hope everything goes well.

Every day is a…[Read more]

Hi Helen.

It’s my steroid night as you may of found it’s taken weekly every week with Pomalidomide or at least I am. Pomalidomide seems to have a good response track record so hopefully it’ll get you to SCT. You didn’t have a great time after your last SCT but I guess time is what we want. It was two years ago the Prof. was looking at an Allo for…[Read more]

Hi Jeff.

I was on anticoagulants, I still am, before my kyphoplasty and my consultant and surgeon had differing views on it. In the end I think my consultant “won” because I was only off my tinzaparin for 24 hours pre-op. Though they did check my blood for clotting before going ahead.

Hi Vicki and Colin.

I think it’s just a remote possibility…[Read more]

When I was on CTD, my specialist told me that my skin would be extra sensitive to sunlight and that I should protect myself.
I don’t think applying fake tan would be a good idea either owing to the chemicals in it. I say this because I was also told not to colour my hair because of the chemicals in the dye.

Once the chemo’s out of the system,…[Read more]

I have to agree I would wish to smoulder forever, but don’t want to wait for treatment until there are signs/symptoms organ damage.

I have found the article online but will take a couple of read through’s to grasp the key concepts so thanks to Mike for the helpful précis of updated criteria.

I wonder what my Consultant will make of this and…[Read more]

Hiya Bernard, yep, been there, done that.
I would suggest that you read as much as you can on the subject, preferably from myeloma UK.
As for me, I was very nervous after the transplant specialist gave me the sequence of events and all the things that ‘could’ happen to the body after the transplant.
The harvest was easy, it took two sessions to…[Read more]

Hi James.

I was diagnosed at the beginning of October 2011 and Revilimid got my readings the lowest they had been till then though not spectacularly low. We measure paraproteins here but I think it’s the same as your immunoglobulina Gg reading. Mine was 11.7 I don’t get a reading for much else I just ask my specialist nurse if my are ok and if…[Read more]

Hi Susie.

It’s Tuesday night time for my usual Dex fueled ramblings.

I thought about you today as I got cramp in my feet and legs. It wasn’t too bad and it was expected as I’d taken my last Pomalidomide tablet Monday and it’s a regular end of cycle occurrence as it was when I was on Revilimid. I also got cramp in my fingers, how that happens…[Read more]

Hiive Helen.

No need to apologise life does continue outside the myeloma bubble sometimes it’s good other times it’s not so good and the forum takes a backseat for a time. I’m sorry to hear about your dad. Never an easy time. Steph’s dad died last month so we have some idea of what you’ve been through. I got officially finished from work in June…[Read more]

Hi Jeff.

I too suffer from a sore neck from time to time and this I again put down to over doing it a bit and the damage to my spine. I also find I get muscle soreness easily now from doing things I’m not used to now and upsetting my resting muscles – poor things.

Regarding the sweats I get them sometimes but that’s due to the steroids and…[Read more]

Hi Helen

A painful BMB is not pleasant, even the bruise afterwards can make you wince with pain when you turn in bed or sit back on a cushion. I hope your house survey goes well. I don’t think I could face the effort and energy required to move house again, especially with the large quantity of junk we have managed to accumulate over the years.…[Read more]

Hi Jeff,

I hope your operation on Monday goes OK and offers you some relief in your pain. I’m so sorry to read about your arthritis. Last year, my elderly father suddenly started to lose his mobility. Eventually after nearly nine months of investigations, scans, tests/MRI, he was diagnosed with arthritis in his lower spine which appears to…[Read more]

Vikki last of my post went missing. Rabbiting on too much. Hope things go week for Colin and Maureen hope thing also go well for Ian. I always thi k of Colin, Ian and Frank as SCT buddies

Keep in touch
Love Jean x

Hi Vikki

Has Colin started the treatment yet? Frank got lots of cells but consultant put them all back as she said that he’s too old to have a second transplant. I still think that consultant went ahead with transplant – PP’s had been dropping for months and as his next birthday would be 70 – the cut off point – she went ahead.

Vikki Frank…[Read more]

Hi Vicki

Like yourself I’m not often on the forum. Looked in a few weeks ago and saw Maureen’s post and also wondered how Colin was doing. I’m sorry to hear that he’s having a hard time. Those bloody shingles are awful. Frank had them a few months ago and Dr put him on pregablim. Has Colin been taking them. Frank can’t get off them as he has…[Read more]

Hi Fuzz

Well you are showing some signs,that could be a number of diseases,a simple blood and urine test should show the possibility of Myeloma.

Doctors only come across Myeloma once in a life time as there are only 3000 cases a year in GB.

I would make a note of your weight and height,plus how many times you feel sick,your kidney functions…[Read more]

Hi Vicki

Nice to hear from you, I think you are doing the best thing not coming on here to much when you are in remission ,best to lock the Myeloma away in a cupboard mentally ,and enjoy life as much as you can,because we all know it finds you in the end,so enjoy today.

I have good and bad days,try to keep myself busy and out of the house,after…[Read more]