[scott9Participant]

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 and enjoy them. Life is now too short to be miserable.

Get fighting.

Scott

[scott9Participant]

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 three weeks then a gap of a week and the whole thing starts again. I was pretty ill last month with one cold after another. This adversely affected the results of my treatment. My light chain reading went up a bit and my kidney function got a bit worse. I’m hoping to get back on track this month. The dex does make sleep difficult and I don’t feel so great the next day, but I can live with it. It does help if I can get in a game of golf that day as it takes my mind off things. It depends on how I’m feeling. I’ve learned to listen to my body these days and if I feel really bad then I do take it easy.

Good luck Tom and keep fighting.

Scott

[scott9Participant]

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 my second session and due to have eight. I won’t know if its working for about three or four sessions. If it works the average remission is about 18 months, but that includes those for whom it doesn’t work and they only last about six months so in reality, if it works it should keep things going for a couple of years by which time hopefully something else will come along. I live in hope that it will work!!!

Good luck to you in this battle.

Scott

[scott9Participant]

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

[scott9Participant]

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

[scott9Participant]

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. Worrying is for wimps 🙂

Scott

[scott9Participant]

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

[scott9Participant]

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

[scott9Participant]

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 of options and I think its now pomalidomide or nothing. Its been approved by NICE for people in my position so hopefully this will give me a bit more time before the inevitable happens.

Keep fighting.

Scott

[scott9Participant]

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 to see the professor again on 4 August for an update. He plans to put me on Pomalidomide and Dex. Mind you, I’d had a bad cold for over a month when I had my bloods done. Maybe it was just a blip due to the cold infection. I’ll find out on 4 August. Living with this thing is such a rollercoaster of emotions.

Keep fighting.

Scott

[scott9Participant]

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

[scott9Participant]

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 remission now for a while, but who knows.

All the best

Scott

[scott9Participant]

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 about her that I’ve hardly thought about my problems.

Good luck and try to stay positive.

Scott

[scott9Participant]

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 the best

Scott

[scott9Participant]

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

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