Hi Simon.

Unfortunately that’s the nature of the beast treatment knocks it down but it always comes back. The time scale varies vastly from one patient to another. Some only get a few months of remission others get years some never achieve remission. They won’t start treating you until the myeloma starts causing you problems. ie bone damage,…[Read more]

Hi Simon.

Unfortunately that’s the nature of the beast treatment knocks it down but it always comes back. The time scale varies vastly from one patient to another. Some only get a few months of remission others get years some never achieve remission. They won’t start treating you until the myeloma starts causing you problems. ie bone damage,…[Read more]

Hi Sandra.

I’ve just realised I replied to an old post of yours in the GENERAL forum doh!

You may get more replies and advice if you start a new thread in the TREATMENT forum.

Like I said in the other post I’m don’t know much about light chains.

The minimum requirement for SCT I was told was a 50% reduction in paraproteins as your husband is…[Read more]

Hi Sandra.

I’m also sorry you haven’t had any replies though I must admit I don’t frequent the forum as much as I used to. I should try harder.

As Ellen has said myeloma can and does cause kidney damage by blocking the fine tubes of the kidneys. Hence the need to drink two to three litres of fluid a day, mainly water, to keep the kidneys…[Read more]

Dear dear Vicki.

We are so sorry to read about Colin’s death.

I do hope you are getting plenty of support at this terribly sad time. I hope your legendary strength can get you through the coming weeks.

Lots of Love.

Andy and Steph XXXX

Hi Bijou.

The lesions by themselves don’t necessarily indicate you have myeloma. That’s why other tests are required to confirm it’s myeloma.

Treatment, if you have myeloma, will be given if you fulfill certain criteria it’s called CRAB I think it stands for Calcium, Renal, Anaemia and Bones. If you don’t fulfill the criteria you may not need to…[Read more]

Hi Ben.

My myeloma didn’t respond enough to the normal first line treatments CDT and PAD (velcade) I was quoted the minimum requirement was a 50% fall in PP count for a SCT. I was then tried on DTpace which was another failure. Next in line was Revilimid and Dex and an appointment with the Professor who ruled out an auto SCT and suggested an allo…[Read more]

Morning Bijou.

Have they told you that you’ll be staying in? I’m not sure why you’d need to. I’ve never needed to stay in overnight for tests. A BMB( bone marrow biopsy) doesn’t take long. It’s just a big needle into the hip bone. It’s uncomfortable some say painful it all depends on your pain threshold. I only have a local some have gas and air…[Read more]

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]