Hi David
Revlamid and Velcade are manufactured by two different pharmaceutical companies
Revlamid is like thalidomide you take it in tablet form. for 21 days then a week off. Velcade you get in an injection at hospital twice a week for 3 weeks then a week off.
Not everyone is able to tolerate one or the other, but velcade means your are…[Read more]

Hi NIgel,
I understand that the funding for velcade is quite complex and if like my husband you do not respond to the velcade then the manufacturers pay for it not the NHS.
I believe that this was the reason he had to have his 4th cycle even though prior to the fourth cycle he was not responding. So essentially by completing the 4th cycle the…[Read more]

Jean
I strongly suggest you contact the help line and get a take two pack. It is for you to give to your GP in order that they can better understand MM it is produced by Myeloma UK and if it does nothing else it will help another poor should who might not get diagnosed until much later because GPs rarely see a case of mm therefore cannot diagnose…[Read more]

Dear Dai I know how devastating it is to be told the beast is back and it seems very unfair to have had a relatively short remission. Once treatment starts it becomes easier to accept and just get on with it Go and do something nice this week and put mm to the back of your mind for a while Love to you and Janet Bridget x

Poor Nigel
I think you just have to give in to the lethargy and fatigue until you hit a day when its not there. No good fighting against it and no good worrying as that does not help.
Give yourself the time to heal and it will pay dividends. Like the new photo by the way.
Min

Dai
Im so sorry to hear your news. I /we know all too well how bad you feel. Peter only got 5 months of remission which is nothing and classed officially as a failure of SCT. Following which he had 4 cycles of velcade which induced DVTs in him, accompanied by pulmonary embolisms so beware of breathlessness on velcade to make matters worse it…[Read more]

Brilliant just what I needed on a Monday morning thankyou for making me laugh out loud Bridget

Dear Jean,
I think you have to play the little woman and ask him to do it for you! Even if its just to make an appointment for when your return, then you wont need worry the whole time;
Peters persistant pain in his side was his myeloma returning and we ignored just like Frank. Its a shame they don't flag up pains in a side as a mm warning…[Read more]

Hi Jean please dont apologise for letting off steam we all need to do it at some point. I am glad Frank is going to get his pain checked out , if there is one thing I have learnt in the last 4 years its not to ignore a persistent pain Could you phone his pecialist nurse about it or would that upset Frank? My husband is equally stubborn where his…[Read more]

I wouldn't worry Gaye,
My sons next door neighbour is a Dr, and she like everyone else these days is just a person with extra special skills that she has worked hard to get.
She thinks my son is special because he is a captain on a MN ship. He can do things she cant and vice versa in there own field.
When it comes down to it we are all just…[Read more]

Hi Nigel you have just got to go with the flow! Have a nice day chilling on the sofa tomorrow is another day love Bridget

Dear Gaye I had to smile when I read your post as I have done something very similiar. Unfortunately mine was a complaint e-mail!! It didnt do any good either. I hope you are having a nice weekend , the sun is trying to shine here yippee love Bridget x

Dear Gaye you have been in my thoughts a lot lately , I am so sorry to hear you havent yet hsd any relief after your rt You must be exhausted . Heres hoping you dont have to put up with it too much longer lots of love Bridget x

Hi Jen well after last week this week is so much better The soreness and tenderness lasted all week though .I am convinced it is dex in combination with revlimid that is the culprit .I am also on a reduced dose now ,15mg and the tiredness is less of a problem I know what you mean about the shakes , it really is annoying Still hopefully next month…[Read more]

Hi Sandra I was 52 when diagnosed and I was told that an allo was too dangerous for me , mind you it wasnt just based on age but rather the amount of damage already done. I was surprised as UCH London is a major teaching hospital and my local docs had suggested an allo as a possibility. David it was Shirley who had her allo recently love Bridget x

Hi Jen,
Peter has just started the 3rd cycle of Revlamid and mornings are 'achey' still but I think once the dex has stopped he will pick up again. The dreaded dex brings its own very unique side effects which seem to amplify everything.
I know now that once the effects of dex wear off he copes better with the Revlamid, his dose had been reduced…[Read more]

Hi Edo,
I would not be too concerned about the free light chains. I read your posts again, did he have just once cycle of Revlimid before going off on holiday with no further Revlamid until his return? Is this why he had the velcade added to the Revlamid? My husbands light chains were at over 8thousand when it was decided to put him on Revlamid,…[Read more]

Hi Edo I suppose they are checking your dads blood results regularly? Last year my father-in-law became extremely confused and it was because his sodium levels were very low, it might be worth double checking they are watching out for that .I do hope things improve soon love Bridget

Hi Nigel sounds as if you are doing well on velcade long may it continue !! love Bridget

Hi Edo its possible your dad may just need a little longer to get used to the idea of having myeloma , the other infections etc must complicate things He does sound like a very strong minded person so hopefully the anti-depressants will be the jolt he needs. It is always hard to see our loved ones going through something like this and feel…[Read more]