[petesilverParticipant]

Saw consultant yesterday who confirmed that my although my first treatment with Revlimid worked OK and gave me another remission of over 2years.  He put me on it again but it is not working as before and my pp and light chain are rising so next week I start another regime which I have had before with good results, Velcade, prenisilone, cyclophosamide, but not really looking forward to it but if it does the job again great! As some side effects are not good especially PN which I already have in my feet and it always feels like walking on cotton wool and sometimes a bit painful, still that what happens when they poison you lol

[bandityogaParticipant]

Hi Peter

Hope the new treatment works for you will

Maureen

[petesilverParticipant]

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

Pete

[PerkymiteParticipant]

Sorry to hear Rev has stopped for you I hope you have better luck on the next treatment whatever it is.

I only started on Rev in Nov 2013 and it has taken me into complete remission at the moment. They have pulled me off of it , 2 months ago now, whilst they try to sort out Prostate Cancer and a Skin cancer. My blood test Friday last was still good but they want to get me back on it by the end of Sep.

Kind regards – vasbyte

David

[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

[PerkymiteParticipant]

Hi Peter, I picked up “Spongy Foot” as I called it whilst going through my SCT in 2009/10. It then started to get a lot worse when I went onto Velcade. I only had three doses of Velcade before PN started to get worse. I still have a numbness in my right side calf muscle but it has not go any worse so I ignore it.

I, like most MM sufferers I think, have metalwork. Mine is in my neck. I broke my neck getting out of bed, MM had eaten my 4th vertebrae. My head is held up by a wonderful piece of internal scaffolding. If you imaging scaffolding around a church tower you will get the picture. However I stll have full movement and most people would not know. But like you I am still active , I am 71, however I do find nowadays I start to tire quicker.

kind regards – vasbyte

David

[VickiParticipant]

Dear both

Just a quick line to say you are both inspiring. As you may know Colin has relapsed. He has just started velcade, dex and cyclophos. Hope it works well and quick. Peter how long have you had mm, i get the impression you have had a few treatments twice. Do you mind me asking….. Do you feel well generally. Did you have an SCT? The big question of us if all goes well and if they can get the cells, whether second SCT is a go-er.

Keep,we’ll all

Vicki

[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

[VickiParticipant]

Hi peter

Thanks for this. It’s very interesting to hear that you got better remission from the meds as opposed to the transplant! Colin only just got enough cells for his first SCT so who knows what or if he will get enough for a second. He did say he would go for it if offered.

He had a fracture of t12 in his back, thankfully his Gp was on the ball as a consultant (private) missed this even though the radiographer put it in the report that myeloma needed to be ruled out as there was acute wedging at this vertebrae. Not a good start and it still haunts me!

It’s encouraging to hear that the meds are doing well for you. Let’s hope they keep those drugs coming for all,our sakes. One thing that Colin has not adjusted to is that he lost at least 3 inches in height. He doesn’t like that. My thought is thank goodness you are here….but that’s me.

Keep well

Vicki

[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

[VickiParticipant]

Thank you peter. Colin had one job lot of radiotherapy. They said it really did the job, although his back is a weird shape now which he hates but to be honest looks worse to him than me. I’m just glad he’s here and he’s reasonably active. Week 2 of velcade doesn’t seem too bad so far! We are having friends for lunch which is a boost . This would have been unknown first treatment round.

The height thing has been difficult for Colin and like you he said he is looking up to people he used to look down on, which doesn’t help as my family are quite tall, still grateful for small mercies. Hope you are feeling ok and next treatment is more imp active for you

Vicki

[Author]

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