Hi Robert

I think it’s really good that your vitamin B levels are being monitored. I don’t think I’ve been told mine or my other vitamin levels such as vitamin D. I asked whether a B12 supplement would help boost my consistently low immunity levels, but didn’t get much of a response. I now take a multi B supplement on a daily basis which…[Read more]

Hi Val

It’s such a hard question to answer, because it all depends on how your husband reacts to his ongoing chemotherapy, whether he needs to change drugs, whether he will be going through a stem cell transplant and whether he has any infections/colds which will all affect his recovery period. It really does vary tremendously from patient to…[Read more]

Hi Val

It’s such a hard question to answer, because it all depends on how your husband reacts to his ongoing chemotherapy, whether he needs to change drugs, whether he will be going through a stem cell transplant and whether he has any infections/colds which will all affect his recovery period. It really does vary tremendously from patient to…[Read more]

Hi Andy

That’s wonderful news for you Andy. You must be so pleased to see your myeloma levels reduce to their lowest levels since 2011. Is this usual with Pomalidomide, i.e. does it take a long period to show results and can you expect your levels to drop even further?

Kind regards
Jan

Hi,

When I was diagnosed with myeloma in 2010, my kids were aged 17 and 19. Both were taking their mock exams, so we were concerned about how the news would affect their studies and their lives. Being a bit older than your children, they did ask a number of questions and although you try to be honest, upbeat and positive, you forget they pick…[Read more]

Hi Amanda

I remember very clearly finishing four cycles of CTD in 2010 and after some blood transfusions, feeling much better. Coming off the drugs meant my energy levels returned and I lost many of the side effects of nausea, constipation and muscle weakness. However, like you, I then began to worry about the next stage in the procedure of the…[Read more]

Andy

You were the first person I thought of when Colin was told it wasn’t working. You are the example I use. There’s always hope and good on you with the pp down to 6.5. That’s great! Any chance of a transplant? Now we’ve got over the initial shock we are itching to know what happens next. Ironically Colin is really well today except the…[Read more]

Hi all

I lost the first post so trying again. Velcade not working, light chains up from 4 to 7000. Not sure what happens next but it’s rubbish. We have to wait for next weeks treatment appointment, turn up for it, won’t have it and then wait for a consultation appointment to see what happens next.

It’s so hard. It’s the first time we’ve heard…[Read more]

Hi jacqui and Linda

Sorry to hear of the relapses. My olio was the same. A huge blow. It wasn’t supposed to happen for years and years in our minds. Still….Colin’s on the third cycle a
Of valcade And seems to either Get very very tired or is like a human Dynamo on the steroids. It’s a real roller coaster. We only have one set of results and the…[Read more]

Hi helen, Jean and frank

Glad to hear from you guys. As I hadn’t been here for some time this new forum takes some getting used to. Glad to hear you are feeling good helen. Colin is nearing the end of cycle one ( week off is 28/11) then consultant 4th December to see if it’s working…..best Christmas present of all please :-). This treatment…[Read more]

Hi Andy

Hope all going well with you. We are nearly at the end of cycle 1. The dex is back with a vengeance. Colin seems to have really suffered this time with sleeplessness and hyperactivity. They’ve decided to phase him off he steroids rather than having two days on and then bump. Ref the SCT the one consultant said he could bein with a chance…[Read more]

Hi there

From Colin’s treatment first time round it did take home some while to recover from the initial treatment. Tom fellow mm’ers said you will just turn a corner, like a light switch being turned. The SCT isn’t pleasant And it does take some while to build up the stamina again but be patient and build yourself up daily

Take care

Vicki and Colin xx

Hi Andy

Apparently the prelixafor that boosts the bone barrow cells production is available here in gloucestershire as a matter of course so perhaps that will help you? I do hope so if that’s what you want.

After the first SCT Colin said he wouldn’t want it again, however one consultant said it was an option and the other didn’t. Current…[Read more]

Hi Megan

Thanks for that I was thinking about Tom too? Also how are you guys doing? Colin has started his treatment…..so far so good

Vicki

Thank you peter. Colin had one job lot of radiotherapy. They said it really did the job, although his back is a weird shape now which he hates but to be honest looks worse to him than me. I’m just glad he’s here and he’s reasonably active. Week 2 of velcade doesn’t seem too bad so far! We are having friends for lunch which is a boost . This would…[Read more]

Hi all

We have just started week 2 of treatment, velcade and cyclophos and dex. It’s weird, Colin has been quite good really. A bit of chemical heady feeling and some fatigue but otherwise the steroids are doing their job, if a tad grumpy, although he won’t have that! I do worry that because his side effects seem limited ( which either he isn’t…[Read more]

Hi Helen

A painful BMB is not pleasant, even the bruise afterwards can make you wince with pain when you turn in bed or sit back on a cushion. I hope your house survey goes well. I don’t think I could face the effort and energy required to move house again, especially with the large quantity of junk we have managed to accumulate over the years.…[Read more]

Hi Jeff,

I hope your operation on Monday goes OK and offers you some relief in your pain. I’m so sorry to read about your arthritis. Last year, my elderly father suddenly started to lose his mobility. Eventually after nearly nine months of investigations, scans, tests/MRI, he was diagnosed with arthritis in his lower spine which appears to…[Read more]

Hi there,

My partner was diagnosed in 2011. He had one dose of radiotherapy for a fracture at t12 in his back, he went on myeloma X11 trial taking cyclophos, dex and revlimid. It worked very well,for him. He had 7 cycles. The big issue for him was getting the stem cells out for,the SCT. It took 3 goes and even then he only jst got enough!

He…[Read more]