Hello Jeff
I had been taking Gabapentin for 5 years ever since I had a severe case of shingles which actually put me into hospital, however recently something has been causing me to get severe muscle spasms in my hands and upper body ( this is something I had before MM when taking Amitriptyline) as gaba is in the same mode I stopped taking and the…[Read more]

Hi Jeff

I can’t make up my mind about gabapentin, I have been taking it for several years following shingles and sciatic nerve damage, but lately it has been giving me some bad side effects one is muscle spasm in my hands and neck  especially at night which prevents me sleeping if  I stop so do the shakes so I haven’t taken it now for a month o…[Read more]

Hi Vicki

I think its a good idea to go for the SCT, I know some can get a good remission from it.

I also had a vertebrae collapse in the thoracic area with wqs very painful at the time, but as it did not cause any damage all I had was 5 sessions of radio therapy and lost a bit more in height was 5’11” now 5’9″ 🙂 so tell Colin hes not a…[Read more]

Hello Vicki

I don’t mind you can ask me anything, My problems started in 2003, in 2004 I went private to find out what the problem with my back, after a MRI scan it showed a fracture of L5 vertebrae , transferred to the NHS the same surgeon found I had a plasmactyoma had an operation and radiotheraphy, in 2005 MM kicked in had a SCT in 2005 t…[Read more]

I agree I must admit I get confused when reading some postings, there is such a range of drug combinations, better to spell it out correctly so we can all understand exactly what treatments are being used. Every time I start a new regime if its not different its administered a different way, but still life goes on.

I’m a long way from from you but all signed………..I think we get spoilt here in Exeter the haematology dept is first class ans always there on the the end of the phone if you need help, and the local charity ELF (Exeter Leukaemia fund) is an integral part as well and raised thousands of pounds funding lots of equipment and projects.

I hope…[Read more]

Hello

I have always been aware of it but never know if there is any truth in it, but I have grapefruit for breakfast regularly even when I am on on chemo, ( been on both Velcade and Revlimid over the years) but never had any problems.

Best ask your consultant I suppose but I’m not sure if even they know for sure.

Pete

hi

I have just started cycle 2 of  Velcade, cyclophosphamide but this time the steroids are Prednisolone which I seem to tolerate much better. I am not getting many side effects to date (fingers crossed) which I did when taking Dex.

But not being a medical expert on the subject of steroids, I just wonder why its nearly always Dex if Pred has le…[Read more]

Congratulations on both….it is a roller-coaster on myeloma and you are dealing with it with the right attitude.

Hi Tom

As RichardB said keep  positive. I was in the same position as you but that was in 2005 and I’m still here thanks to good treatment from the local haematology depth.

Hi Tom

I had about the same remission from my act in 2005 but with  the new drugs around I’m still here  although just have started another course of Velcade which I hope will keep me going so I hope whatever treatment  you have works for you.

Good news Andy,  let’s  hope all keeps well just  keep positive,  I’m in my 10th year and currently on another course of  velcade starting cycle 2 on Tuesday,  so I’m hoping it’s works  the same as last time.

Hello David

I am glad the rev is working for you, it did for me the first time and gave me 2 years in remission but this time it appears not to so next week I start a new regime Velcade,prenisilone, cyclophamide, this is a repeat of what I had several years ago and gave me 4 years of remission, I know I can’t expect that again but just hope it…[Read more]

Hi Robert

Sorry to hear your about your condition and as Carol said hope you smolder as long as possible, however in the event you need treatment progress has come on in leaps and bounds since I was diagnosed in 2004 although some of the side effects are not good, have to say they have kept me going, I have to start another regime next week but…[Read more]

Hi Emma

Sorry to hear you have myeloma in someone so young, however I think it would help you to contact the Macmillan nurses and/or your local CAB they are a mine of information and are very helpful in giving advice and help when you have personal problems of all types.

Regards Peter

So do I , it did last time but nothing is certain with myeloma

Pete

I hope all keeps going well, my first five cycles gave me another two years in remission, but as always with mm it comes back so I am on it again now and it seems to be working again but will find out more today.