Hi Jill.

I’m sorry that Pomalidomide didn’t work for your Mum especially since the side effects are very mild – well for me they have been. I know once it fails on me I’ll be tried on either Melphalan or Bendamustine which are both very harsh drugs. That was the plan anyway the last time my consultant and I talked about it.

Your mums numbers may…[Read more]

Hi Mrsmac.

Sorry to read what your husband is going through it’s unfortunate his SCT didn’t work. I had a similar start to my treatment nothing seemed to work for me and I ended up on Revilimid, Cyclophosphamide and Dexamethasone for 22 cycles which held my myeloma in check. All the time I was on it my blood tests all came back low and I was…[Read more]

Hi Bijou.

Welcome to the club that no one wants to join. You’ll find us a friendly bunch – well I suppose that depends on our Dex cycle. No question is too trivial or daft. Anything your not sure of ask away – and I mean anything because sometimes things can seem a bit personal but we’ve all had some problems of that nature and needed some…[Read more]

Hi Liz & Kev.

The Nottingham beer festival is the 7th – 10th of October and hopefully we will be there sampling a few of the beers on offer.😋

The Nottingham Robin Hood Marathon is on the 27th of September unfortunately 26.2 miles is  about 26.1 miles to far for me now so I’ll be giving it a miss.😢

We may pay another visit to Belgium later in…[Read more]

Hi Ben.

I was diagnosed October 2011 and have seen the same consultant since then. I’m on my second specialist Myeloma nurse though the original one, who got promoted, is still active with the Myeloma patients too.

I haven’t got to SCT so I’ve been pill popping all the time so over the last 3 3/4 years I’ve seen my consultant a lot! I’ve also…[Read more]

Hi Stuart.

Thanks for your prompt reply.

I was aware of the plans for a look into improving the forum having discussed the forum experience at the Newcastle info day with Maggie.

For now though I’m finding the Word “solution” is ideal for me because I don’t have to remember to copy my posts or risk losing it every time I want to move away and…[Read more]

Hi Mavis.

I think you may have misread our posts. I am finding Pomalidomide very tolerable and to date it has been my easiest drug regime. I think Helen has a few more issues than I but is comfortable as anyone can be on treatment with Pomalidomide.

We we’re talking about treatment after Pomalidomide which at present will be harsher drugs with a…[Read more]

Hi Helen.

It’s my Dex night/morning too my nap is over and I’m awake again.

I know what mean about hoping that Pomalidomide lasts a long time because I too know the the next drugs will be harder to tolerate. Bendamustine which is predicted to be my next treatment has a very mixed press side effects wise so quality of life will take a hit. The…[Read more]

Hi Helen.

It’s my Dex night/morning too my nap is over and I’m awake again.

I know what mean about hoping that Pomalidomide lasts a long time because I too know the the next drugs will be harder to tolerate. Bendamustine which is predicted to be my next treatment has a very mixed press side effects wise so quality of life will take a hit. The…[Read more]

Thanks everyone.

Well cycle 21 is underway and I’m all Dexed up. Tablet 1 of my 21 Pomalidomide tablets has been washed down not with beer I hasten to add but water. I’ll raise a beer and wish good luck to cycle 21 on Friday. We’ve got a busy day Friday Steph and I we’re lunching with Ian and Maureen Sinclair, from this forum, and then Friday…[Read more]

Hi Liz.

It’s my Dex night so I sometimes come around here to check how everyone is getting on. I used to be around more often but I found the forum website a bit difficult and slow after it got “updated” though it’s behaving itself tonight.

How is Kev getting on? Did he have the second round of DTpace?

You mentioned Kev’s neutrophils being 0.6…[Read more]

Hi Vicki &Colin.

Congratulations to you both. I hope you both had a fantastic day.

Wishing you plenty more days together that are filled love and joy.

Every day is a gift.

Lots of love to you both Andy xx

Hi Helen

Belgium was brilliant. The weather was great, the beer was great, and the natives were friendly.  I’ve been going regularly since 2002 initially it was with my running club mates. We’d do a race the first day we were there and then spend the rest of the time rehydrating lol. Must of been around a dozen times now. No more trips planned…[Read more]

Hi Liz.

I was tried with DTpace in 2012. After five days in hospital hooked up to all the infusions and the constant beeping I was later given a BMB which showed that most of my bone marrow had been wiped out though not the myeloma so I didn’t get a second cycle. It seems DTpace is like marmite it either works well or doesn’t work at all. There…[Read more]

Hi Vicki.

When nothing was working for me I was tried with DT-pace. It meant a five day stay in hospital whilst I was infused with a concoction of drugs. I think I had five drips going into me 24/7 after the first cycle, usually you have two or three, my bone marrow was nearly wiped out but the myeloma was still hanging around! So that was the…[Read more]

Hi Vicki.

When nothing was working for me I was tried with DT-pace. It meant a five day stay in hospital whilst I was infused with a concoction of drugs. I think I had five drips going into me 24/7 after the first cycle, usually you have two or three, my bone marrow was nearly wiped out but the myelobeen ma was still hanging around! So that was…[Read more]