[petesilverParticipant]

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 only effect is my legs really ache but painkillers help with that, but I really  don’t know what the answer is, I have tried morphine patches but they are just mind benders and cause so more problems than they solve.

Peter

[petesilverParticipant]

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 alone.

I agree the diagnosis of MM is somewhat hit and miss and doctors need to be more aware when a patient complains of a persistent bad back, I know many MM patients who suffered a long time before being diagnosed, enough of that now Its water under the bridge. Jut keep as positive  as you can which can be hard sometimes I know.

Peter

[petesilverParticipant]

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 this only gave me a remission period of about 15 months, I never produced enough stem cells to have any in reserve and since then it has been Velcade or Revlimid both have given me better periods of remission. At moment I am on Velcade (injection), Prednislone (steriods) 40mg twice a week, Cyclo 1x 50mg every day.

Is it working I don’t know yet, side effects not to bad a bit tired sometimes, a bit nausea but otherwise I don’t feel to bad this is after 2 cycles I start cycle 3 on Tuesday.

My general health is so so, I am 74 so no spring chicken The op on my back  left me with painful legs due to damage of the sciatic nerve for which I take painkillers daily, walking and bending gets difficult at times I but i still keep as active as I can and manage to do my favourite hobby of lawn bowling and short mat bowling when I am not going through treatments,if my legs were ok I could do a lot more still that’s life and I make the most of what I got as having mm over 10 years I feel very fortunate, the thing with MM is every one is different and what works for one does not work for another,sometime I think we are just guinea pigs in the nicest possible way, but I can’t complain i’m still here.

I hope all goes well for Colin.

Peter

[petesilverParticipant]

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.

[petesilverParticipant]

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 all goes well

Peter

[petesilverParticipant]

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

[petesilverParticipant]

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 less side effects, but we are in the hands of our consultants.

I hope your husband is feeling better.

Pete

[petesilverParticipant]

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

[petesilverParticipant]

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.

[petesilverParticipant]

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.

[petesilverParticipant]

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.

[petesilverParticipant]

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 works.

My main concern at the moment is the PN in my feet but I know there is no chance of the changing which was result of chemo and I always worry about any pains I get as I have had two two vertebrae collapses and a broken femur which was repaired using a rod inside the bone and a by-lateral scaffold in my back, but after saying all this I am still fairly active for a 74 year old I still like my gardening and I play Bowls outdoors in summer and indoors in winter of all the problems I think the PN is the worse as I can’t walk as far as I would like.

Sorry about going on but there is life after MM lol

[petesilverParticipant]

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 hell I’m still here and doing most things but when I can’t do something cos I get to tired I put it down to age.

Still enough of me, I really do hope things go well for you.

Regards Peter

[petesilverParticipant]

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

 

[petesilverParticipant]

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

Pete

[Author]

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