Hi Keith.
I think it's the Revlamid that causes the cramp. I get it also though not to bad. My feet and calves are the main culprits though I did used to get some stomach cramps too. I also suffer fatigue on the second day off dex. The reason I don't think it's dex causing the cramps is I've been on dex at the high level a while now whilst the…[Read more]

Hi Dai.
Sorry to hear you and Janet are not feeling well I hope you both have a speedy recovery.
It's strange how our different hospitals have different guide lines. I am told if I ever feel unwell or if my temperature stays over 37.5 for more the 3 hours or if it exceeds 38 to ring the hospital ASAP or if it's during the week in day unit…[Read more]

Hi Min.
Thanks for the info. I have met Prof Jackson before at a support group meeting and as you say he was very approachable and easy to talk too.
Hi Teresa.
Just posted to you under carers 😉 This will be my second dose of radiotherapy and it's not at the same site. Though it is close to it. I was just thinking about how my back will…[Read more]

Hi Teresa.
We over here would love some of your excess sun. Though I think the temperatures you are having to endure are not good. Apparently there is no immediate end to our damp and soggy weather in sight 🙁
I'm sorry to hear about Peter being in pain I hope they find the right meds to get him pain free ASAP.
I know when my back was…[Read more]

Hi Etta.
I hope everything goes well with your collection and you get enough stem cells with your femoral line.

All the best
Andy x

Hi Liz & Kev
I think all us male MM suffers should follow Tom's advice because he is doing so well. Onwards and upwards eh Tom 😉
Backs are a major problem with MM and its good that Kev is getting a MRI ASAP. I've lost aprrox 3 inches in height due to damage to my spine and by the end of the day I'm struggling to stand upright.
I hope the…[Read more]

Hi Vicki & Colin
I'm glad your hospital visit went well.
I imagine you must be looking forward to the SCT with mixed emotions as you say there will be ups and downs. Hopefully it will pass without any problems and you are soon looking back wondering what all the fuss was about.
Mari I've had my Hickman line fitted for a few months now and…[Read more]

Hi All.
Thanks for all your messages of support and encouragement. After a weekend of contemplation I am now back to my "normal" ? self 😉 I must admit I was a bit down with the outcome of Fridays meeting but I have moved on from there and now know a bit more of the battle ahead. I'm going to maintain a positive attitude because I think we all…[Read more]

Hi Keith & Sue.
My original BMB showed my marrow was packed with MM but my last one showed I had little bone marrow left! In the little holes where it was supposed to reside but around the outside there was MM cells. So even though there was less bad cells I didn't have many good cells. The one question i didnt ask was which was the more…[Read more]

Hi Eve, Mari and Helen.
It was a tough consult but on reflection a good one. There wasn't much about my condition she revealed that we didn't already suspect but it was good? to have our suspicions confirmed. Now we know what we are up against and can channel our energies to the fight. It will be good to have a second opinion and some new input.…[Read more]

Hi Dai
I don't know if you use twitter but after a bit of hunting you can find some very useful links to reports from the US on there. I find it very useful. I now follow several posters from the US and get the latest news from over there.

Andy

Hi Alix
Good luck with your run and money raising. I used to run ordinary marathons before Myeloma damaged my back. I regret to say I only once ran for charity which I now regret. If only we could turn back time.
Once again good luck with the run and training – the hardest part! – and thanks for supporting Myeloma UK.

All the best
Andy

Hi Teresa
We had a great time in the lakes thanks. The weather was a bit wet but hey without the rain they'd be no lakes 😉 unfortunately my back was causing me a bit of trouble so we didn't get to walk far but the change of scenery did us a world of good. We've booked again for early September hopefully the sun will have turned up by then…[Read more]

Hi All.
Many thanks for taking time out with all your suggestions.
Dai thank you for your thoughts and advice I found them very helpful and insightful and will base my meeting around your advice. I really like your posts and how much thought you must put into them I find them very informative and helpful.
David I think I have been trying…[Read more]

Welcome to the forum Alethea.
None of us want to be here but here we are. You will find us a friendly bunch – sometimes funny sometimes sad but always supportive. We are all at different stages of this dreadful disease and everyone's journey and treatment is different. It's a very individual disease.
I myself was diagnosed October 2011 after…[Read more]

Hi Keith
I take my Rev just before bed. Can't remember if I was told to or I just assumed that was the right time because that's when I was told to take my thalidomide when I was on it. It may of been in the Rev box paperwork along with the side effects – I sometimes read them when I'm bored 😉

Hope everything turns out well this week…

Hi Ali

When I had my Hickman line fitted it took approximately 30 mins start to finish. The longest part was waiting for a x-ray afterwards to unsure it was in the correct place. Mine was fitted at the day unit.

Andy