[petesilverParticipant]

Hi Jean
I have just had the same answer, with me all doom and gloom waiting for my test and scan results, when the Dr said your ok no more need for any chemo and no PST on the scan so here I am 9 years down the line feeling a happy chappy.
Always try and keep positive but before this appt I have to admit I was very apprehensive.
So I hope your good news carries on for a long time.
Regards
Pete

[petesilverParticipant]

Hello Jane
Had my appointment on Tuesday well it was all good news as the CT scan results were not showing any problems ( much to my surprise)and as all my blood results are holding up fine (maybe except platelets but they are not to bad) my consultant has decided that there is no need to continue the maintenance dose of Revlimid as he said the jury is still out on this treatment anyway.
I took Revlimid for five months and my PP came right down, and he feels we will keep this in hand should any problem arise again instead of keep taking it.
So here is a happy chappy and at the moment free of any Chemo & RT now ready for that holiday I have kept putting off.
Regards
Pete

[petesilverParticipant]

Hi All
I promised to let some of you now how I got on,on Tuesday re my appointment
well it was all good news as the CT scan results were not showing any problems ( much to my surprise)and as all my blood results are holding up fine (maybe except platelets but they are not to bad) my consultant has decided that there is no need to continue the maintenance dose of Revlimid as he said the jury is still out on this treatment anyway.
I took Revlimid for five months and my PP came right down, and he feels we will keep this in hand should any problem arise again instead of keep taking it.
So here is a happy chappy and now read for that holiday I have kept putting off.
Regards
Pete

[petesilverParticipant]

Hello Jane
Sorry to hear your news, always say is to try and remain positive, I was diagnosed in 2004 and all the doom and gloom people thought that was it, but here I am 9 years on, had all the usual treatments and currently relapsed and waiting to see what the next treatment will be on Tuesday, but I still feel OK.
I hope all you treatments go well..
Pete

[petesilverParticipant]

Hi Ian
yes I know this MM is a strange one everybody is different and reacts differently to treatments. I in 2003 after going private to see what the problem was as I had severe back pain which turned out to be a fractured vertebra L5 I had a plasmacytoma which almost destroyed it so I had surgery a bi-lateral scaffold to support my spine, in 2004 a vertebra in the thoracic area collapse, that was when I was actually diagnosed with MM, then I had some months on cyclophosamide before I had a SCT which only lasted about 14 months,then I started on Velcade which had to be stopped because I had a severe bout of shingles, then restarted Velcade / cyclophosamide / and dexamethadone. when my lightchains started to rise last year for the last 5 months I have been on Revlimid and things were going well LC went right down,the I noticed a lump on my leg just below the knee this turned out to be MM so RT on that last week and a CT scan, will the best or worse next Tuesday, but I already know it will be more Chemo but what I don't know yet.
Anyway apart from the pain in my legs caused by the damaged to the sciatic nerves I feel fine and still managing to do most things I want as long as I am careful, still I always remain positive, treatments are bloody awful but there are good periods so make the most of them.
All the best
Pete

[petesilverParticipant]

Hi Nicki
I hope it all carries on like that you might be surprised, I had 8 cycles of Velcade and I was in remission for 4 years but as always all good things come to an end so now waiting to see what chemo I will be on next. Had some RT on my leg and just had a CT scan so waiting for the results of that.(my appt is Tuesday week 🙁
I always try to stay as positive as possible.
All the best
Pete

[petesilverParticipant]

Hi Colin & Vicki
The only thing I can add is I was on lenalidamide for 5 months but the I got a lump just below the knee it didn't hurt but I had it checked out and it is a plasmacytoma ( which according to my consultant can happen even though the drug was doing its job of bringing down my paraprotein very successfully) so now i have to have RT on Monday and a full CT scan on Thursday to check for any further problems ,if any,I know this may be a rare case but if you do get and unusual lumps or bumps its worth having them check out asap.
Pete

[petesilverParticipant]

Wow Dai
That is some terrible treatment you got there and someone ought to be brought to book about it but as usual never will. It just shows the different treatments you can get from other hospitals.
Here in Exeter treatment is second to none the Hematology Dept in the RD&E is excellent.
Still I hope every thing is going ok now, but it says a lot when you have to move house to get decent treatment.
Pete

[petesilverParticipant]

Well done Babs and long may it continue just keep a positive frame of mind and its amazing what you can do even when you don't feel all that great.
I was diagnosed in 2004 and still here(after various treatments) much to some peoples amazement.
Keep it up
Pete

[petesilverParticipant]

I think my personal info is up to date but as I was diagnosed in 2004 i have been through a few treatments and other calamities so if anyone would like any further info just ask.
I hate going on about all the things I have had happen but i'm always happy to share anything you would like to know….

Being diagnosed in 2004 1 have a few issues but am still reasonably active but currently have a few problems which I hope will be sorted in the next few weeks.
Pete

[petesilverParticipant]

We all get angry at times, but one has to remain positive as there is no other way, just go with the flow, I know there are days when I feel terrible but as my wife says no good feeling sorry for yourself. I know she has to put up with a lot of things, it seems the one nearest to you takes all the flak, but I do try and be good :-))
If the consultant thinks the treatments are not grueling perhaps he should try them himself, I have had all three and it was bloody awful at times and has left me with some horrible permanent side effects.
Can't type no more the wife is pestering me to go out LOL
Peter

[petesilverParticipant]

Hello All
Just thought I would add my little bit to the conversation I was diagnosed in 2003 with a Plasmacymtoma (PCT) affected my vertebrae L5 which almost destroyed it but I had a bi-lateral scaffold but in to support my spine which has worked very well except for the fact it has damaged my sciatic nerve and does cause quite bad pain in my left leg but I take pain killers but in general I still still stay fairly active even for a 72 year old.
Over the years I have several treatments SCT, and Velcade which was very sucessful and I was in remission for 4 years on that but recently my PP started to rise and I went on Revlimid which in its self was working howevr recently I developed a bump on my leg below the knee, had it checked and unfortunately it is a PCT and pressing ion my nerve causing even more pain in my left leg.
So its RT to be done asap and a CT scan in a fortnight and it looks like another bout of different chemotherapy.
I never know if I do right by putting all my woes on here, but sometimes I do read other peoples and I think its helps, we did have a support group group here in Exeter but it was so difficult to get ppl to join and unfortunately our numbers dwindled and we had to disband, it was very sad as it really was a good help we always did things like art, had talks by all sorts of people not necessarily about MM, its seems some people are afraid, but we always enjoyed ourselves.
Enough of my rambles, all I hope is all your treatment go well.
Peter Perham

[petesilverParticipant]

Hello Jean
I think that is how everyone feels at first, I have to admit I was same but once you get into it and you start arranging things to do I am sure you will enjoy it

[petesilverParticipant]

Thanks Tom
Yes it went well for about four years, but we sent out over 80 letters to potential patients but never had any response so the original group was fine but things happen and we were down to four, the thing is it is difficult to ask someone to come along just to 4 people, still if thing improve we may be able to start again….us four will still keep in touch.
The one thing i forgot to say which is most important is partners and/or carers they play an important part as well and the ones that came to our group found it a great help, they are the ones that always take to brunt of it especially when we go under treatment, I know my wife hates to be called a carer she just says shes my wife but when undergoing a SCT it was very harrowing for her as well as me.

Still like you say onwards and upwards

[petesilverParticipant]

Yes I read it with interest but it seems as always it is going to be a long way away before they even start trials.

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