Brilliant Sharon,
Pleased to hear you now have a plan. Do you have help with your children ? I hope your not struggling on your own.
little ones are so exhausting and cant understand why mum is not well.
I can tell you that when my husband was 1st on Thalidomide he too was having a bad time but he started it in August and had a drug holiday…[Read more]

Hi Joe,
My description of Peter when people ask is he's 'coming on' meaning he is definatly not as bad as he was, he is not at his best by any means but he is somewhere in the middle.
He is gaining weight, gaining strength, and gaining an appetite too. We are back at clininc next Tuesday when he will be told the day for his 2nd transplant.…[Read more]

Hello Eve
I dont think the apprehension ever goes. I alway keep everything crossed when we go to clinics but my method is expect the worst and if its better its a bonus if its as I expect its not such a sad great shock.
Fail to prepare …. prepare to fail… Ever the pessimist never the optimist .
Good news is always welcome of course but…[Read more]

Hee hee I got Peter the cinema thing with his DLA last week and its brill… Means I can buy extra popcorn as I havent paid to get in … BONUS but had to watch Harry Potter … not my cup of tea. But cant complain wanted to get him out to the blu** house as I was going up the wall. Oh forgot to say Bridget we used to put some books on the legs…[Read more]

Dai
OMG Peter had dreaful DVT in both legs with velcade which turned into many clots in his lungs. Too many for them to count. Pulmanary embolisms.

There is a simple blood test called a D Dimer or D diamond test which takes no time at all for the results. Following which a scan ( type pregnant women get) for the clots.
In his case he had big…[Read more]

Hello Eve
Well I took your advise and got the appiances myself and wooden worktops too, just getting the units and fitting from an expert…. I am almost an expert myself (not at fitting but know all I can know having spent far too many hours into the wee small hours doing research)
Thanks for the advise and hope Slim is doing well. You will be…[Read more]

Hi Sharon
Hang on in there, first things first, Im sorry your having such a dreadful experience on Thalidomide. It is not a pleasant drug for anyone, and the knowledge that it is being used to fight cancer is mindblowing.
Sharon I do think you need some help from someone who can talk you through this and suggest tommorow you ring the freephone…[Read more]

I Bridget,
I dont know how I missed this post ( Well I do I have been researching kitchen appiances, benches and workmen etc. So i have been buried in the computer with an occasional visit to outlets etc. I hope by now your legs have got a little better, but if they have not Peters specialist told him he could take up to 200 mg a day NOT ALL…[Read more]

Hi Sarah,
I know your feeling very apprehensive at this time, but you know they can do some amazing things in hospital these days.
I am sure they will do what ever is needed to get Gordon back on his tractor. Well maybe get him home first.
I look back a few weeks to when Peter was soooo ill unable to get his breath his heart racing at break…[Read more]

Im sorry to hear of Stephens infection. I sincerely hope he gets over it quickly, and is back home with your soon.
How is he otherwise Gill? is he recovering from his SCT? I remember you saying he was finding the 2nd one a struggle.
Peter will be going in soon for his 2nd one and wondered how long it may be. I believe the recovery time the 2nd…[Read more]

Oh Dear Sue,
I think you need to get him to take the Dex first thing in the morning so its worn off by bedtime.
Peter had just one dose of melphalan it was a mega mega dose. If you imagine when you get a dose for a stem cell harvest your given a 15% ratio per square mtr of body mass and he was given 70%. not quite the same quantity as for a…[Read more]

Hi looby loo
Your poor Dad, has a lot on his plate and must feel exhausted. The treatment regime on its own along with the disease is very tiring, and coping with your mums condition must be really stressful for him.
Speak to a Macmillan nurse, see if she can get any respite care for your mum at a day care centre to give your dad a break of…[Read more]

Best of luck for Michael, hope it works. don't know about the Dex at lunchtime though, bet he is still awake now with it! Cant beat talking to the TV, doesn't answer back, bit like my dogs!
What else does he take with the Bendamustine? anything we haven't heard of before? Peter is recovering from his mega dose of melphalan and no doubt will…[Read more]

Its all good news Dai, and I can understand your being a little disappointed but…..Everything you read about these drugs are that the smaller the dose the better the result because smaller doses prevents the side effects which make the quality of life worse. The side effect I mean
I think I have read or listened to something on here, about…[Read more]

Hear hear Its very useful for hospital appointments but Peter is not venturing very far these days. Although he did drag me to the cinema earlier this week for his Harry Potter fix.

Min

Hi Peggy
Good luck with your mammoth pill party! someone wrote on here to put them all in a carton of yogurt then they go down easier.
£40 0000 Because your worth it…..Revlamid is so easy to use from the point of view of your not tied to attending a clinic or day unit twice a week. so much less tying. But still makes you very tired…[Read more]

Hi Sarah,
On heavens if its not one thing its another with these men of ours. They cant just get one thing wrong with them it has to be a dramatic illness and one that drives us the carer out of our mind!
Blue badge… 5 days best thing we ever got out of him getting the blu*y illness. Now he has it you need to go on and get the other things…[Read more]

Hi Martin,
Sorry to hear about your Dad, my husband has MM and kidney damage from it, along with bone damage.
In truth I think only a Dr can give you the answer you want, but even then as mm is not something like High blood pressure where they know if they give you x then the result wilt be Y .
MM is far more complicated and unpredictable. But…[Read more]

Hi Pam
I can´t add any more to the comments you have already received. Just wanted to say how sorry I am that you are going through this awful time and wish you all well in the weeks to come.

Very best wishes

Carol xxx

Sorry Jet typing error,don't watch the screen oops it was GCSF injections, just to help the stem cells that are being transplanted and make a few more.
ps like the bold bald look it suits you
Min