Hi Andy

Great that your posting from Greece, we are in need of some sun, as soon as our son finishes his GCSE's we might take off.
Surely there will be a drug that will crack through that stubborn exterior for both of you. There has to be. Chris's pp's are very similar to yours. You say you had a very high plasma % at one stage ? Did that just…[Read more]

Dai

You are a bit of a superstar on here and I'm grateful that you have taken the time to post. Yes we are still reeling from the news and and after hours of looking last week, I stopped trying to find anyone else who had been in this situation because like you say it's pretty unheard of.
You mention about his regime stopping but we ran out of…[Read more]

Hi Helen

No nothing daft. Chris was extremely fit until he started chemo in March last year, he ran marathons, did long distance cycle rides etc but since the sct we go for a walk most days couple of miles miles at most and he does gentle exercises to strengthen his weakened muscles at home. He has got a 10 day pass for the local fitness centre…[Read more]

Hi Tom,Megan,San,Mavis, Chris and David

Thanks to you all for taking the time to reply to our plight. We have great friends and family but hearing from people who really know how it feels does lift you and give you strength. Last Tuesday was the worst day we've ever had, and for a couple of days after you wonder if you will ever recover,but you…[Read more]

Hi Wendy

I've been trying to find out about muk 5, Dr Cavet did mention something but to be honest it was a bit of a blur. When Chris goes for bloods on Tuesday he said to call in if we had any questions. But yes that would be an obstacle if we got velcade and knowing our luck we would. How ironic that the drug that worked best for him had to…[Read more]

Hi Carol

Thanks for that, yes it does give us hope.I'm just worried that because Chris has had pretty much everything prior to sct that it won't work this time round. It's strange how his pp's have never been over 40 yet have such high plasma % yet a mm friend of ours had pp's of 70 and only 30% plasma. Anyway it's just numbers isn't it at the…[Read more]

Hi Eve

His neuts are good 3.8, they have been good since he came out of hospital. Platelets 35 still low but slowly climbing. HG 7.8 so low.

No he didn't have a bmb prior to transplant which we didn't realise at the time but now realise that most people do ?? They just went from his pp's and other blood results. Chris is IGG type.

School…[Read more]

Hi Eve

I appreciate you taking the time to reply Eve,thanks so much for the advice.
We feel like we did when Chris got diagnosed that horrible gut wrenching feeling, only worse because we had so much hope back then. I can't beleive that after melphelan the myeloma has not moved. What else is going to work if the strongest drug available…[Read more]

Hi Eve

Thanks very much for that I'll contact Ellen to find out more about Muk5, I wonder why our consultant hasn't mentioned it ?
He only managed to harvest enough cells for 1 transplant so no chance of another.

Thanks again

Christine

Hi Eva

Thanks for that but we have been down that route Chris was scheduled to have a full allo in January 2013 he had a perfect match unrelated donor, but our consultant stopped it 3 days before he was due to go in as the myeloma wasnt stable enough and therefore the risk too great.
The mini allo has been ruled out this week as the the % of…[Read more]

Hi Eva

Thanks for the advice. I looked on the Dana Farber website and am going to order the recommendations for PN, will be interesting to see what happens. He is exercising walking, cycling etc so just got to carry on. He is qualified to teach hairdressing at FE level so thats one thing he may look at doing on a part-time basis.

We will get…[Read more]

Dai

Thank you for the advice. We do have plan B which is to erect a "Man Cave" at the bottom of the garden where Chris would invite select customers in to do barbering in one half and in the other half he would be restoring/buying/selling the second love of his life his beloved motorbikes. He has spent the last fifteen years building up a very…[Read more]

Dai

Chris's allo has been postponed due to rising levels in the space of time its taken to organise the donor etc.He has been admitted as an in-patient for intensive chemo last week and is now on a short course of Thalidomide, so we are keeping a close eye on the PN.

It has eased a little but it's doubtful that it will go away. It's a cruel…[Read more]

Hi Susan
Chris was on Velcade and symptoms were pain both dull and shooting in his feet and legs, fizzing in his feet and numbness but no weakness. Hope that helps but check with your doc as it needs keeping an eye on.

Christine

Hi Sarah
Sorry only just seen this post. When did Henry start with the PN ? How have they decided that it's permanent ? Chris's symptoms are just starting to slightly subside after 6 weeks he's had an acupuncture session and got another booked in. It's a real nuisance and no let up with the pain.

Thanks for replying and hope the chest…[Read more]

Hi Graham

Thanks for the reply. I did think whether Acupuncture would be any good. Apparently they offer complementary therapies at The Christie when Chris goes in for his transplant but hopefully it will be better by then.

I'm always mithering about drinking but it must be hard to keep drinking that much fluid !!!!

Take care

Christine

Hi Terry

Thanks very much for your message. After trying allsorts of pain relief the morphine was the last straw, he said he wanted some clarity of thought so stopped them all apart from co-codamol because he was stumbling through each day like a zombie. Chris is still kind of working as he has his own hairdressers so cutting hair bombed out of…[Read more]

Thanks Gill

The doc has put him on morphine today so that should work, he was going to cut my hair tonight I might leave it a day or two !!!!! I have been massaging his feet for him.

Christine