[christinepughParticipant]

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 but is just going to try a swim and see how he goes. He did cycle to the hospital during his stem cell harvest to the amusement of the nurses but he hasn't had the energy to get on his bike since.

Christine x

[christinepughParticipant]

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 do.

I wish I could remove my brain to stop it thinking things I don't want it to think.
In the end I'm here to support Chris and be strong for him which he really deserves, so getting the help and good wishes from this forum plays a big part in enabling me to do that, so thank you again.

Christine Xx

[christinepughParticipant]

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 be stopped due to side effects. Sods law or what !!

Hope you are doin ok Wendy, I'll check on your posts when I've sent this.

Take Care

Christine X

[christinepughParticipant]

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 end of the day.Dr Cavet knows Chris will try anything he said he is going to contact his peers in the UK and see what they say.

I'm really glad that it has worked for you though and hope it continues to do so.

Christine X

[christinepughParticipant]

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 have been great, I told them a while ago about Chris.

Take care

Christine

[christinepughParticipant]

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 didn't do it ??
Velcade worked really well for Chris then the dreaded neuropathy kicked in.
I thought you had to have enough cells harvested for two sct's prior to the first one ?

I too am "Slim" Chris's nickname for me, can't really remember why !

Once I've got over the shock I'll get going, we are not giving up, no way.

Christine

Christine

[christinepughParticipant]

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

[christinepughParticipant]

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 myeloma at 60% is again too high a risk. Thing is he hasn't had a bone marrow biopsy for over 12 months so we have nothing to compare it to. We asked if there was a chance that it would continue to drop as it was only day 50, but the consultant wasn't hopeful.
Christine

[christinepughParticipant]

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 there I'm sure, just some days the mountain to climb seems higher than other days.

Christine x

[christinepughParticipant]

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 successful business that he loves so it's really tough to let it go when you are only 47. This period is definitely the worst for him as he has been so positive but after so many kicks its harder to pick yourself up after each one.

Christine x

[christinepughParticipant]

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 blow that a side effect takes away from you the things that you love. Chris was very fit before the treatment but muscle wastage and feeling generally crap has prevented him from running and cycling. He was walking every day which he now finds difficult because of the PN. Annoying for you.

Christine

[christinepughParticipant]

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

[christinepughParticipant]

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 infections stay away for Henry.

Christine

[christinepughParticipant]

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

[christinepughParticipant]

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 your mind isn't good for business !
He's not on any chemotherapy at the moment just waiting to go in on 13th Jan for his full allo. He had 4 cycles of Velcade, which he only achieved partial remission from but good enough for the allo according to our consultant.

He has a Royal Enfield motorbike in bits in the garage so hopefully he will be tinkering like you very soon.

Christine

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