Hi Helen

You are awake late this evening? It’s good to hear from you, but I’m so sorry to hear your light chains are increasing which must be so concerning for you. What are your current numbers? Can your current medication be increased or modified? I see panobinostat has just been approved by NICE to be used with velcade and dex for patients…[Read more]

Hi Jan
How is the velcade going now? Got the sickness under control yet? It’s not nice trying to balance all the side effects.. I think I feel worse trying to deal with the vagaries of the constipation caused by this and the runs caused by that- so that sometimes I just stay at home because I can’t plan a route that includes enough toilets!!!
I…[Read more]

Hi Helen
No sorry I don,t have patten,but you could treat the bulge as a finger,get the patten off a glove pattern .

I am out on my lonesome for Christmas,I don,t want my girls to start thinking who,s going to have mum,they have threatened me with forcing me to have a micro chip,so they can keep track of me..
Laying ghost to rest!!! Cannot go to…[Read more]

Dear Eve
Ha ha ha – do you have the pattern for this!!! I wonder what people would say – it’s almost worth it for the laugh, my husband could have worn them last week in freezing Austria. Are you back in the uk for Christmas or still away. Any newzealanders visitors? None of ours are making the trip this year, too many babies and no money, but…[Read more]

Hi Andy
I’m back from Austria – very nice, beautiful, clean pretty chocolate boxy villages and gorgeous Salzburg, did some walks in the snow and the Christmas markets. Quite festive, but very cold -7 at night and -4 during the day.
Good to see you recovering well, got all your Christmas shopping done yet? I haven’t – clueless as to what to get!…[Read more]

Hi Andy
I’m back from Austria – very nice, beautiful, clean pretty chocolate boxy villages and gorgeous Salzburg, did some walks in the snow and the Christmas markets. Quite festive, but very cold -7 at night and -4 during the day.
Good to see you recovering well, got all your Christmas shopping done yet? I haven’t – clueless as to what to get!…[Read more]

Hi Laura

I am so sorry for your loss,before a consent form is signed the doctor has to explain all the risk involved,you tend to be bombarded with information ,so in the light of this I would say it was explained and because of the amount of info you have to listen too,it’s been said but not regested. I do think information like this should be…[Read more]

Hi Maureen

I’ve just lost my last three attempts at replying to your post and my computer is jamming again as I write. I am so happy that you are leading a more normal life now that Ian is in remission with his myeloma. You must be relieved he is only having to see his consultant every eight weeks and that his myeloma levels are holding well.…[Read more]

Hi Helen

That’s great news about your son managing to obtain a job with apple. I hope he enjoys the work and can also enjoy some music work during evenings/weekends to keep his interest and motivation going to eventually find a career in the music industry. He should be able to help you with your problems accessing the internet. I swopped my…[Read more]

Hi Andy and Helen

Andy good to know you are much much better,when that drinking arm starts working,then I know you are fine, I hope you are helping Tom,by drinking his measure,he looks good,even though he is in a hospital bed,bet he has the nurses in stitches.

Helen no one ever gives up hope!! I look on it as an acceptance,that the miracle cure…[Read more]

Dear Eve
I do hope I don’t really sound as though I’m giving up on hope, I’m not, though I suppose that the constant round of treatment is getting very wearing at times and it becomes more difficult to sound as optimistic as I used to. Soon it will be 5 years – when I say it like that it sounds like a long time really and I’m pretty well despite…[Read more]

Hi Jan
I seem to have been absent again, I blame the poor internet signal I am subject to here! I must get this iPad seen to! Number one son has job with apple care now so will get him to fix it I think! The music business is now an evening thing, I think he realises that until he gets his lucky break he has to earn a living somehow!
How is the…[Read more]

Hi Andy
Good to see you back on form again, are you getting out and walking to the pub yet or just rambling round the house? It’s not nice being so poorly but we are so at risk of infections with the dex and the pomalidomide, my neutrophils have been at 1 or less for a year now. I’ve completed a full year on pomalidomide now, started cycle 14…[Read more]

Hi Pav

Don’t know if I will be of any help. Myeloma is a very I dividuL disease. My husband, like yourself, a routine blood blood test and something showed up and doctor sent him to haematologist. They did a bone marrow test and told him that it showed myeloma but he was smouldering. That was in 2006 and up until 2013 he was still not showing…[Read more]

Laura I’m truly devastated to read your post. The risks were explained to us before my husband had SCT but to be honest I don’t think they registered with me. Although my husband has been in remission for over two years, he said he would never do it again. I’m truly sorry for your loss

Jean xx

Hi Andy

It’s so good to hear that you are now fit enough to be back on Pomalidamide and that you are making an good steady recovery after your exhausting intensive care treatment in hospital. I can’t imagine just how tough and worrying it must have been for you and your family over the last month. I hope the tough physio treatment manages to…[Read more]

Hi

I hope your father’s treatment is going Ok with VDC. I started my first relapse treatment of VDC about the same time as your dad. I have experienced a range of various side effects, but fortunately have not experienced a headache.

Both the Velcade and/or the dex might be responsible for his headaches. If you look on the Myeloma Beacon…[Read more]

Hi,

I wondered whether your husband is also taking an antibiotic with his pomalidamide? I ask because
I’ve just started on my first relapse treatment of VCD and during the end of the first two weeks I developed a full pin head body rash, with an angry red skin and raised temperature. I felt as though I was burning up from inside and ended up…[Read more]

Hi Maureen

I think it’s a great decision for you both to go away for a few days in Harrogate and just enjoy yourselves, especially with the weather still being quite mild. Relaxing on holiday is such a good way to unwind, relax and forget about myeloma concerns.

The first Velcade cycle was eventful. The nausea medication is excellent, which…[Read more]