I expect I am wrong but I often wonder why so much is made of having more than one SCT, perhaps I was one on the unlucky ones it took 3 attempts to harvest enough cell just for one SCT however it all went ok I came through it, but the downside it only lasted a year, since I have had various drug treatments which gave me far better remission p…[Read more]

Hello Karen

Chin up and try and keep positive I was diagnosed in 2004 and still her  after various hairy drug treatments.

If you have a sore that wont heal try a few sessions of HBO can’t do no harm but the oxygen might help it to heal. I can’t go into any detail here but I have been having weekly hbo since 2005, has it made any difference!! wh…[Read more]

Hi hl

I was on that regime for eight months, side effects are always different funny but now I can’t remember any but the main I had 4 years remission which i thought was amazing, but since then i have been on lenalidimide on and off

I can’t see that this is a new trial as I had it over six years ago, still i suppose all hospital are d…[Read more]

I can’t really remember how long, people use to say how nice if looked as my hair was silver grey, but as I said every time I had it cut the more it was back to its ordinary state.

But I know how fussy you ladies are when it comes to your hair, my wife is just the same its never just quite right, even after going to the hairdressers. So just go…[Read more]

Hello Rebecca,

Yes after my SCT my hair grew back nice and wavy I was hoping it would stay that way but sadly its now all back the normal straight look, I think you will have to bear with it but I am sure eventually you will get back to your original style but it just takes time and a few hair cuts.

Make the most of what you have now it won,t…[Read more]

Thanks Jane re holiday I only go in this country as travel insurance is to expensive, also had a bad experience with a holiday booked for Malta a few years ago when the week before a vertebrata collapse and was hospitalised and lost all our money. So Now I rather not take the risk.
But my children live away one in Halifax and one in Worthing so…[Read more]

Well done Pete I know how it feels when you get news like that.
Regards
Pete

Hi David
When I had my 8 cycles I remained in remission for 4 years which came to an end last year, now 5 cycles of Revlimid seems to have got me there again.
All the best for your Velcade treatment hope it goes well.
Regards
Pete

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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

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…[Read more]

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…[Read more]