Hi Tracey

Your husband will have plenty of birthdays ahead of him, dont you worry about that. I’ve been living with this for nearly 5 years now. They are always bringing out new chemo things so the average life span continually stretches out. What you need to do now is focus on each day and treat every one as a bonus. Make the most of every day…[Read more]

Hi Tom

You are following in my footsteps. I’ve done the Revlamid/dex and then just Revlamid to keep the cancer at bay. It stopped working then I had a stem cell transplant. I’m now on my 6th session of Pomalidomide and Dex. I take 20 dex pills once a week as early in the morning as possible. I also take one Pomalidomide pill each morning for…[Read more]

Hi Tom,

Like you, I was pretty shocked when my cancer came back as I was hoping for remission a bit longer post SCT. I had my SCT last August and the cancer returned in July. I’m now on Pomalidomide and Dex. I take 20 steroid pills once a week and get about two hours sleep that night. The pomalidomide has given me no problems so far. I’m on…[Read more]

Don’t worry about having treatment on your eyes. Its a very minor problem in relation to what we have to cope with.

Good luck

Scott

Hi Frances

I just noticed your post. I developed cataracts in both eyes and had to have operations to sort them out. I can see much better now long distance but still need reading glasses.

Good luck

Scott

Many thanks for the information Andy. I’m due to start Pom/Dex tomorrow and I’m down for 8 cycles. Hopefully it will work for me as well. I’ll make a post in a month or so to report on progress as this will probably be of interest to one or two fellow afflicties.

As you say every day is indeed a gift and must be enjoyed to the maximum.…[Read more]

Hi Andy

I’m reading your posts with particular interest. My SCT has stopped working and it looks like I’m going onto Pomalidomide and Dex. Have you been on that for the past eight months? What nasty side effects have you experienced? Has your consultant got anything on reserve if and when that mixture stops working?

Keep fighting

Scott

I’m on the dialysis watch list at Kings. I have to go to the renal clinic regularly and if my kidney function drops to 10% then I’ll be put on dialysis. They have been pretty stable at around 20% since I got this disease back in 2010 so I’m hoping to avoid that problem.

Cheers

Scott

Hi Rebecca

No its not a trial. My kidneys are only working at about 20% and as such I’m not eligible for any trials. The drug companies want to test on fit !! myeloma sufferers only. People with impaired kidneys may have an adverse effect on any tests.

I’ve been through revlimid, lenalidomide, bendamustine plus the sct. I’m fast running out…[Read more]

Hi Vicki

I’ve not been on the forum for a while as I’m busy working my way through my bucket list. I know exactly how you are both feeling. I had my SCT last August and got complete remission. However two weeks ago I was told the cancer is on the way back as my light chain reading has jumped to about 250. I had another blood test and am due…[Read more]

Hi Frances

Are you sure you don’t have a broken bone? Myeloma has given me osteoporosis in my spine and I broke a bone in 2010. I thought it was just muscle problems but it didn’t get better and in the end I got it checked out to discover not only a broken bone but this disease as well.

All the best

Scott

Hi Jo

I’ve been worrying about you as you were so quiet for so long. I’m really glad you are still relatively OK. I thought my kidneys would be worse from the stem cell transplant, but so far thank goodness they are holding up. I’m due to see Prof Schey on Monday for an update. I’m hoping that between curcumin and oxygen, I will stay in…[Read more]

My wife has found it more difficult to cope with this than me. She became dependent on alcohol. Fortunately the local cancer centre – Southeast cancer help centre – offered various therapies etc for carers as well as cancer sufferers. She has had hypnotherapy and counselling and thank God it seems to have worked. I’ve been worrying so much…[Read more]

I was very interested to read about oxygen therapy. I live in Purley and the nearest MS centre that has an oxygen tank is Guildford. They have offered to try to fit me in but at £30 a session so I won’t be doing it every week at that price. Still, I will give it a go and see how I get on. Anything to stay in remission has to be tried!!!

All…[Read more]

I’ve started to take curcumin as I read that it may have anti cancer properties. It may not, but I want to be proactive and do something – anything – to help the situation.

Good luck in your fight against this horrible thing.

Scott

Hi Rebecca

My kidneys have leveled off at where they were when I started the SCT process ie at about 20%. They actually improved slightly while I was in hospital having the SCT. They said it was because I was on so many drips that the kidneys were well and truly flushed. There was never any mention of dialysis. Funnily enough I’m due to go to…[Read more]

Hi Jan

What a huge disappointment that your Myeloma is creeping back. You were only telling me recently about taking curcumin to help keep it at bay. Have you stopped taking it now or are you sticking with it? I’ve only just started to take it and am hoping I might get two or three years remission. I’m on 1 pill a day at the moment but will…[Read more]

Hi Tom,

I’m really really sorry to hear your bad news Tom. Its like living with a time bomb. You can never forget that one day it will rear its ugly head again. Last time it came back for me I was put on Bendamustine. It was certainly better for me than Velcade. I’m still suffering from the peripheral neuropathy I got from Velcade back in…[Read more]