Hi Jenny
Its nice to hear your dad is taking little steps towards getting better. You cant rush this thing, and particularly so given his age and his new health problems.
I read you original post and was alarmed at the comments of the nurse who spoke to you. Myeloma is one of the rare cancers, and its difficult to know what she knows of it, was…[Read more]

Dear Gaye
You are an inspiration to all of us, and I do hope the new drug, works for you. Why do they have to give them such long names?
Let us know what Poma…die! is tablet or infusion?
I am curious to know, what drugs if any that you have been through have not worked on you? and what happened next so to speak. Do you have bone damage? or…[Read more]

Oh I do love a bit of good news, congratulations granny.
I am right now lying in bed with my grandaughter who as I type is breaking out in more spots……Just discovered she has chicken pox. Poor sould. I think I should be worried. but I am more worried about her. Peter is home so hope I dont take it home to him. He is on acyclavore so possibly…[Read more]

Good heavens Kieth you do have to do some travelling for your treatments. Jane Conn did peters harvest and transplant and we see her most visits to ward 36, she is truly lovely woman as are all the staff. Peter had his Bypass done in RVI and they were great too. How long did you stay in after transplant. Peter wa:-| s out the same day and lately I…[Read more]

Hi Dai,
I got the same e mail, and at the same time I got an e mail from Gill,with no content,signed webteam that I had sent her a few weeks ago! something is going on. Though the similar e mail refers to the myelomaforums.com which I may have registered at a long time ago. the Gill one refered to this site.
Time to do a virus check me…[Read more]

Hi Keith no I did mean the second dose or second injection three days after the 1st.
It took some weeks before it got really bad enough to complain in loud voice and be heard. But as he had managed to break his hand that seamed to be a bigger priority.
And it did work for a while; at first there was no response; then a few cycles later his…[Read more]

Well Kieth by now you will have had the 1st of your velcade and dex and will know all about the routine. Or lack of it, Peters first velcade was quite disorganised. He has his last one today, and mostly felt quite good and looks really healthy, belied by the fact that the velcade no longer works effectively!
The problem he had was after the…[Read more]

Hi Bridget,
Im pleased to here they are moving apace with your RT. Peter had just one massive blast when he had it, at the outset of his diagnosis. It left him feeling like he wanted to throw up, and he had a red mark where they gave him a temporary tatoo, to they could hit the right spot. The red mark was a little like sunburn and after/sun took…[Read more]

Shirls,
I wish you all the best for the future. I hope by now your back into the routine of home and family after your sojourn in hospital. Dont rush it take you time and enjoy yourself. Keep Well
Min

I will let you in on my secret Bridget giving up smoking was something I kept promising myself when Peter was diagnosed. I watched him stuggle thru his transplant and decided then if he could put up with that I could give up smoking. humph. to help me I enlisted the help of an electronic cigerette. Looked like a real ciggy, produced vapour instead…[Read more]

Hi Amelie.
I dont think you can take chances with this disease and flu, I think John should see a Dr and get some Tamiflu, and or Aciclivor anything else he may recommend. He still has a very immature immune system which will need some help.
I dont have myeloma my husband does, but I did have flu about two months ago for the first time in my…[Read more]

I think I am going mad bridget I remember typing an ansa to you and now cannot find it.. so excuse me if I appear crazy. Excuse me if I have posted it somewhere wrong. I have obviously overdosed on luxury chocolates that have been telling me to eat them for two weeks now! n order that I could no longer be tempted by them. apart from feeling…[Read more]

Dear Sean You must be gutted by the news about your transplant. I know how upset Peter was with just 5months with no meds
Peter gets the full disability allowance including car. The price 4 crushed vertebra a life on pain killers and kidney problems, and of course myeloma. He had never previously claimed any allowances in 43yrs as a worker.…[Read more]

HI KIETH AND GILL.
Peter is well into his velcade now and so far the only side effects have been. Hiccups…and DVTs but todays appointment with a brand new registrar (who's English left much to be desired, and clothing looked like it was from a charity shop) hit him with bombshell the bad news that his numbers have gone thru the roof since…[Read more]

Sorry to hear your news, its a bummer. Shame you had to join the relapse group But on the plus side you know the drill, and new treatments are better than old and hopefully longer lasting too.
Min

Hi Gill
Peter is in the middle of his 4th cycle of velcade. Im afraid the dreaded dex is taken throughout the courses.
I read all the information regarding the lowering of doses etc and under the skin instead of iv. Initialy I thought oh that ineresting as it means he can give himself them, as he does with the heparin he has to inject daily…[Read more]

I recommended them to my brothers neighbour who has a 12yr old border collie and she just sent me a message of thanks to say they have made a big difference to her dog too.

Hi Sarah
I know what you mean. I wanted to give up work when Peter was diagnosed and decided the human contact at work was going to keep me sane. More recently I received a letter from M& S where I worked 20yrs ago to tell me they are gong to pay my pension next month when I reach 60. I decided then that once the mortgage was finished the M and…[Read more]

Jenny
The booklets you would like to see can be found and downloaded they are to left of this page near to the top under the Title 'Myeloma Library' Hope this will help you to understand better.
Min