[petesilverParticipant]

Hello….have signed and shared on Facebook

• This reply was modified 9 years, 2 months ago by  petesilver.

[petesilverParticipant]

hello Frances,

I am also on Zometa and currently undergoing com dentistry but only fillings, I know that anything that involves the jawbone (ie extractions) have to be done at the hospital dental dept. Most dentists know this and if you are on Zometa and tell you. If this is the same for all hospitals i dont know So I would speak to your myeloma nurse or consultant before doing anything.

Regards

Peter

[petesilverParticipant]

Now into cycle 2 of bendamustine, but early days yet, don’t think they check it on until later to see if its working.

Side effects a bit weird tired, bit of nausea, but the biggest problem is the pain in my back  for which I seem to be taking a lot of morphine but in general I’m doing reasonable ( well must be every time I see one friends they always say my! don’t you look well) LOL, but we must look positive

Pete

• This reply was modified 9 years, 8 months ago by  petesilver.

[petesilverParticipant]

HI

I live in Exeter and as soon as I was diagnosed i saw the consultant the day I was told and he did a Bone marrow biopsy the same day. The Heamatology  Dept at the local hospital is second to none.

[petesilverParticipant]

Hell Finn

Early days yet just had first cycle of Bendamustine, other problem is back pain using all sorts of pain killers but only helping a little think I will have to take it up on Tuesday with consultant On Tuesday.

Other drugs used so far Velcade, Revlimid, both have worked and given periods of remission but second time around were not being effective. As for what other drugs are available I am not sure he did mention some but can’t remember.

Problem now is mm not showing in paraprotine I don’t know where I am

Peter

 

 

[petesilverParticipant]

due to the changes in the way myeloma works it has stopped showing up in paraprotin and has now started showing

osseous growing  outside the bones in the chest area……so my next treatment is bendamustine which started last week so just hoping it works………..the only way to find out is another ct scan in a couple of months.

other problem is the MM had attacked my spine again L1 and my back is very painful and having to wear morphine patches to dull the pain while I wait for some RT later can’t do Chemo/RT at the same time?

[petesilverParticipant]

was told at the end of cycle 3 treatment was not working, however had a ct scan which showed it is working !! so will now complete all 8 cycles, the mysteries of myeloma :).

its going fairly well except for some back pain so fingerers crossed…….

Peter

[petesilverParticipant]

Hello Maureen

I get my HBO from the local MS therapy centre I go every week, but I suppose I am fortunate as my wife works there and I also help in trying to raise funds to keep it going.

I seems to keep me going been doing it now for 8 years, has it helped !! think it keeps me going as do all the treatments I get from our excellent hematology dept in Exeter, just about to start cycle 5 of VPC and side effects are still quite bearable, a bit is nausea, some days not feeling to good some pain in my back but CT scan I had last week showed it is working so fingers crossed this carries 0n

Peter

[petesilverParticipant]

Hello BasingUnit

What a strange thing is myeloma, everyone seems to have different experiences, I have just finished cycle 4 of Velcade, cyclo, and prednisolone with only side effects are an aching back plus the usual so far, so I must count myself fortunate.

Last month when I saw the consultant he was going to stop treatment as according to my bloods nothing was happening,when I saw him yesterday after a CT scan which showed compared with the last scan in April it is working so now I will be doing the whole 8 cycles. The only thing I do differently on a personal level I do have Hyperbaric Oxygen once a week it seems to help me cope but impossible prove, but I know all the people with Multiple Sclerosis who’s therapy centre I go to are convinced it helps them, but talk to the professionals you get mixed and confusing advice so its a personal choice I have been doing it now since I was diagnosed with MM in 2004.

Hope you feel better soon, regards Peter

 

[petesilverParticipant]

Hi Jeff
I know I said I stopped gabapentin (GP) and as I said I was still unsure whether it was the right thing to do, well I have started again on a lower dose hoping the muscle spasms come back, mt problem is after a serious bought is shingles on my left leg and groin and the damage to the sciatic nerve cause by the the collapse of L5 vertebrae my legs are quite painful at times, I have tried most things like morphine patches but they have rotten side effects, so I am hoping the GP will help again but the jury is still undecided.
That’s enough of me rambling on.
Regards. Peter

[petesilverParticipant]

Hi Annette
Thank you for all your comments, its always interesting for any information, Rev stopped working for me so I am now on Velcade,prednisolone.cyclophos.I am now into cycle 3 and all seems to be going well I feel fine with minimal side effects but apparently I have to wait until cycle 4 to know what my PP is.
The problem with all these drugs they all cause side effects some short term some long term, my biggest problem is PN in my feet its always like walking on cotton wool but you get use to it. Fortunately its not painful.
That’s enough of me rambling on.
Regards Peter

Oo..

[petesilverParticipant]

Thanks Dusk for your comments I have no reason why the change but treatment seems to be going quite well , bloods are OK, still waiting on pp results, but in the main I feel quite well(fingers x) I don’t feel elderly,:) at 74 but suppose I am lol, and after having 10 years of one treatment or another things will change.
Finn, I suppose that could be, I’m in daycase today so I will ask if they know !!
It’s just I am interested not that there is any problem.
Peter

[petesilverParticipant]

Hi Annette
Thank you for your post, all these drugs have some side effects some we know nothing about 🙂 but my consultan always he says I’m going to poison your system 🙂 he’s right of course, but it keeps me going.
Thanks again for your comment it is very interesting.
Peter

[petesilverParticipant]

Due to the amount of comments of bad side effects of Dexamethadone on this forum I am surprised at the lack of comments, I have no idea of the difference between Dex and Prednisalone but it makes a big difference to me in coping with steroids, there may be a good reason why Dex is the preferred option, but it is an interesting question considering the bad accounts posted on this forum.

Peter

[petesilverParticipant]

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 spasms which I have always had on and off since the ami days though not as bad, I stopped the gabapentin with no bad side effects except my legs ache a lot more and a bit of backache.I do still take some pain killers Paracetmol/Tramadol which does help that, I have come a long way in reducing my dependence on pain killers as many of them have not good side effects.
When I left hospital after my last collapsed vertabrae I was taking quite a cocktail, MST morphine tablets, oramorph , Fentynyl Patches, but after a while realised I was living in another world, so I started to wean myself off of them but it took me many month as it caused cold turkey if I went to fast. I was told after I came off I was a different person although I did not realise it
My main problem is after the operation on vertebrae L5 my back is supported by a metal scaffold the damage to my sciatic nerve as well as the shingles still leaves my legs feeling painful, I have seen the surgeon who did the op but said he could go in and look be it could be made worse so I opted not to.
So for me the jury is out on Gabapentin on whether it helps or not,I know my consultant has his doubts
Regards
Peter

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