Hi Susie.

Sorry I do know much about vironostat other than it’s in a new class of drugs that are being investigated and undergoing several trials.

The trouble with myeloma is it never leaves you and unless you get the top rated remission ie no detectable myeloma you will probably not return to pre myeloma fitness. The drugs we take damage our…[Read more]

Hi Val.

When I was diagnosed I was told six cycles of chemo, CDT, then SCT. Well I’m still on chemo and SCT has just been ruled out again! Oh I was diagnosed October 2011 that’s three and a half years of chemo.

Everyone’s journey with this disease is different never count on anything going to plan.

As far as I know it’s up to you where your…[Read more]

Evening Beverly, I had exactly the same reaction as you have had, it turned out to be allupurinol that was causing my problems. So I was taken off it.
Regards
Tony F

Hi Helen.

I’m having a Dex morning! A new one for me. So I’m nosing around on here to see how things are progressing.

So now the wedding is out the way the move is back on. The grass doesn’t have chance to grow under your feet! Have you somewhere in mind to move to? Have you already mentioned it and my chemobrain has forgotten it? lol

A holiday…[Read more]

Hi Maureen.

The rule I was told at the beginning of my myeloma journey was that before a SCT you needed at least a 50% reduction in PPs levels before it would be considered. I suppose that applies to the other ways myeloma is measured too.

There is no “normal range” though the closer to zero the better as been stated in this tread already good…[Read more]

Hi Kells.

Just come across your post and see you’ve not had a reply yet.

In my eyes saving money on premiums by not disclosing MGUS is pointless because if you ever have to make any claim your medical history will be examined and your diagnosis of MGUS discovered and your insurance will probably be null and void so all your reduced premiums will…[Read more]

Hi Roo.

I’ve been on thalidomide and and thalidomide based chemo since October 2011 with varying side effects. Mainly tiredness. Cyclophosamide is the one that caused me most problems with nausea, lack of concentration, effecting my appetite etc.  I’ve been on full strength treatment since diagnosis so have been open to all the side…[Read more]

Hi, although it was a couple of years ago when I was on the myeloma XI trials, I felt exactly the same as you, but it did vary through the cycle, I put the blame on the treatment not the myeloma.i know it’s easier said than done but I tried to rise above it! Going walking helped!
If it’s any consolation it won’t last, the treatment bought my pp’s…[Read more]

Well folks, I am in the middle of the second cycle of VTD as the MM went active just before Christmas. Coping with the treatment fairly well although it has been an anxious couple of months. I have a new full time job waiting in NHS clinics!!!

I don’t visit the site often at the moment but do hope everyone is doing OK.

Best wishes

Karen

Good evening, what a way to spend Valentines! I know it’s easy to say, but please don’t panic, mm will not overtake you, why not wait and see what the consultant has to say before you reach any decisions. Is your husband still mobile and can he fend for himself, ie cook, go to the loo, shopping, go out for walks etc etc. if yes then let things…[Read more]

Hey,Shabbyneil, noticed that you live in Ashby De La Zouch. We are in the process of reforming a Myeloma Support Group in Leicester and are looking to recruit members. Would be good if you could join in.
For more info I can be contacted on: tony.farquharson@btinternet.com
No pressure but look forward to hearing from you.
Regards
Tony F

Hi.

Be aware when your dad has his first treatment it still could knock him back a bit even at a low dose. It takes the body time to get use to the drugs. Keep a diary from day one detailing what he took and how it made him feel. It’ll help the medics and will help your dad as he’ll know what to expect through his treatment cycles.

Keep his…[Read more]

Hi Vicki and Colin.

I hope Colin is coping better with the Bendamustine now and is getting the results we all hope for.

I don’t know how my PPs are at the moment. I’m a bit more laid back about my blood tests nowadays. So I only find out what they are when I see my consultant. Every three months! Well every twelfth week really 😉 I’m happy to…[Read more]

Hi John.

There are a few of us around who haven’t had a SCT for one reason or another. Drugs can get you into remission and you can get a decent drug free period that way too.

I haven’t had a SCT but that’s due to my myeloma being difficult to treat. Don’t give up on a SCT just yet once they hopefully sort your cough out you’ll get your…[Read more]

Hi Susie.

At the moment there’s nothing definite about maintenance therapy they are still running trials to see if there’s an advantage and the optimum doses. I guess it comes down to the old chestnut about quality of life. If you go along with the maintenance route and you find it impacting upon your well being you can always stop it.

I have no…[Read more]

Hi Ron.

If I have ANY problems I go straight to the haematology day unit or ring them for advice. I wouldn’t go to my GP or A&E. I’ve done this for over three years now and it’s what I was told to do by my consultant. We can’t afford to hang around waiting for treatment it can be fatal.

Every day is a gift.

Andy.

Hi Vicki.

You’re right. Allo is donor cells and auto own cells.

How’s Colin getting on with the Bendamustine?

Get some trips planned.

Every day is a gift.

Andy xx

Hi Mavis,

Thanks for your best wishes and reminding me about my toolbox! 😉

Hope you are okay xx
Take care
Love

Karen

ps,

sorry Megan, only just seen your second reply.

That sounds a bit of a cocktail Phil is on, I hope it works out for him, sorry to hear of chest infection, they gave me really strong antibiotics for mine, shifted it.

Thanks for replying and best wishes
karen xx

Hi Megan and Vicki,

Thanks for replying and your kind words. Good luck to Phil and Colin on their treatment/jouney.

Vicki, I have stem cells (my own), in storage, but whether they would do that so soon after my first. I went on trials after diagnosis, and did 4 or 5 cycles of Thalidomide, then prior to my sct had mephalan (made me very…[Read more]