Hi Jen

What great news about your pp levels – how many cycles was that on? I am hoping desperately for that to happen to me. I got hit on my second dose of velcade yesterday. Was fine till I got home and then flaked out totally and was very emotional. It was out of the blue too, as I hadn't expected anythimg much for a couple or weeks!!!…[Read more]

Good luck for next week Sandra, will be thinking of you and hoping those blighters have come down more than they've gone up!!!!

Love
Debs x

Hi Gill,

I think it is REALLY individual. I was up at 32 when I was first diagnosed but was still asymptomatic. It rose to 50 before I started treatment (and even then it was touch and go whether I really had bone pain). I know others who didn't start treatment until their pp was 70. I think it's about the other symptoms surrounding you, and…[Read more]

Ah Gaye,
You made me chuckle on a weekend I don't feel much up to that 🙂
I wouldn't worry one bit….sometimes I think they probably wish we did treat them more like our friends….It's what I'm working on with mine anyway!!
Better what you put than love, hugs and smooches….now that might have sent her running!!!
Hope you're feeling…[Read more]

HI Jean

I am a new be to this site and also to mm,my partner is on his 29 day of cdt.He has had pain in his right side for a long time,he originally thought he had broken ribs.When it was first diagnosed the damage to the large bones were in shoulder blades and skull plus spine,these showed on skeleton exray and mri scan. ct scan has not been…[Read more]

Dear Gaye you have been in my thoughts a lot lately , I am so sorry to hear you havent yet hsd any relief after your rt You must be exhausted . Heres hoping you dont have to put up with it too much longer lots of love Bridget x

Hi Amanda

I'm glad you got it sorted. I hope it is as helpful to you as it was for me.

Best wishes
Jean x

Hi Jen well after last week this week is so much better The soreness and tenderness lasted all week though .I am convinced it is dex in combination with revlimid that is the culprit .I am also on a reduced dose now ,15mg and the tiredness is less of a problem I know what you mean about the shakes , it really is annoying Still hopefully next month…[Read more]

Hi Sandra I was 52 when diagnosed and I was told that an allo was too dangerous for me , mind you it wasnt just based on age but rather the amount of damage already done. I was surprised as UCH London is a major teaching hospital and my local docs had suggested an allo as a possibility. David it was Shirley who had her allo recently love Bridget x

Hi Edo I suppose they are checking your dads blood results regularly? Last year my father-in-law became extremely confused and it was because his sodium levels were very low, it might be worth double checking they are watching out for that .I do hope things improve soon love Bridget

Hi Nigel sounds as if you are doing well on velcade long may it continue !! love Bridget

Hi Edo its possible your dad may just need a little longer to get used to the idea of having myeloma , the other infections etc must complicate things He does sound like a very strong minded person so hopefully the anti-depressants will be the jolt he needs. It is always hard to see our loved ones going through something like this and feel…[Read more]

I thought I'd give another update, just in case it helps those undertaking the trial.
It seems like I have plateau'd with my treatment on revlimid – my paraprotein has dropped from 50 to 23 and my bone marrow only by about 15%. Perhaps I'd have done better with more side effects??!!

Anyway, all the results are back now and they classed me as…[Read more]

Hi again.
If you call macmillan they should be able to help with a counsellor….and remember if one doesn't work, try another- it's important to have one you get on with.
I have also heard similar things about doncaster. Don't be hasty but if you're not sure your mum is getting the right treatment, and if she can face the journey you are…[Read more]

Hello amanda

I know it must be hard for you if you love your mum, have you tried the
Local hospice or Mcmillan I am sure they would help with some concelling

Good Luck JO

Hi Gill

I hope Sephen gets many many more years. I really admire your attitude to this bl**dy awful disease – I wish I could be more like you. Take care and may your God bless you.

Love Jean xx

Hi Amanda

Here in Belfast counselling is available, it was arranged through the Cancer Resource Center. I went to counselling when Frank was first diagnosed. I went for about 6 months and it really helped me. I had to go back again to see the counsellor iddle of last year afor about 2 months. Declan (the consellor was brilliant) and the…[Read more]

Hello Jill
I had shingles last summer terribly painful I am really sympathetic for your mum I think she was a bit late for the antivirol but the doctor could have offered her some aciclovir cream I tried an old treatment which was dabbing the pustals with cider vinegar you smell a bit chip shoppy but it worked better than camomile and dried it up…[Read more]

Hi everyone, thanks for the replies. Since I posted this things got worse, last Monday his back gave out and he ended up sofa bound. He has been there ever since, with the exception of a couple of painful trips to the loo.

He refused to do anything about the pain, insisting he had pulled a muscle. Eventually his girlfriend made a GP appt for…[Read more]

So glad that it has arrived for you Gaye!!

As Tom would say, 'onwards and upwards'!
Debs x