Dear Debbie – Thanks for your information on when to take Revlimid. I have taken Thalidomide, Revlimid (twice) and now Pomalidomide and every one has sent me into fatigue, sleeping for England etc and some more than others. I take them in the morning but they send me to sleep just the same – by 9pm I am ready for bed and sleep through until…[Read more]

Dear Jet – Well it made me laugh but also confirmed how flipping painful bras are when you are in back pain. Everything goes tight and unbearable and the relief of being bra-free is wonderful. I hope the lads find something useful with this ……!

I think this is the first time bras have graced this discussion board so well done Jet. It…[Read more]

Dear Kath – thanks for your reply. Another little irritation about the website. You recently posted about your situation and the decision you may have to make. I wanted to reply to it but cannot find it. I know Sylvia said she could not find one I had sent to her so I don't know what is going on. I shall post this to the webteam and hope they…[Read more]

Dear Kevin – you have been very much in my thoughts recently as we hadn't heard from you and was going to put out an SOS today to check so I am really pleased to hear from you. It sounds like you have had yet another horror story but yet again you have shown it who is boss. Well done you fighter. Keep out of that hospital for as long as…[Read more]

I developed a buffalos hump when I was on larger doses of dex and it completely disappeared when I finished and has never returned. Wish I could say that my dexitudinous behaviour has never returned but it does. It's bad enough living with it as a patient but I do feel for carers/families etc who are on the receiving end of it.

When the…[Read more]

Dear Jet – sorry you have succumbed to the beast but welcome to our website where I am sure you will find help as you go through treatment.

It's an interesting combination and one I haven't heard of before. Alternate day revlimid with dex. It sounds like your docs are working out a treatment best suited to you and one thing you will find out…[Read more]

Dear Norman – I had both my SCTs at Barts in London and food was actually the last thing on my mind! Yes, you can use yor laptop but I can't say whether Barts is better or worse than other hospitals doing SCTs as I have only been to Barts. I am sure they are all much the same so please don't worry too much about it. It is not a complex…[Read more]

Dear Tom

I was with some friends yesterday and we placed bets on when we can use the sun lounge again before venturing into the garden. My date is April 15. No particlar reason. What about you Tom?
Love, Gaye xx

Hello David – not half as a numpty as me over this one. I am told that my completely crushed T6 vertebra is unlikely to respond to kyphoplasty and could cause more damage than help. The bone is diseased with myeloma cells and by using RT it attacks the cells, hopefully killing many of them and thereby relieving the pain. This is my…[Read more]

Dear Min – Thanks for the info on Revlimid and its classification. You never stop learning with myeloma and I am happy to go on learning!

I truly hope that you get a good result at clinic next week so that you can chase the sun. Perhaps we could all be on that awful Coach Trip programme where they all bicker and vote each other off. The…[Read more]

Dear Min

I have just be rerunning this thread again and a couple of things you asked I wondered if I could help you with. I think you will find that itching can be a side effect of Revlimid. I certainly experienced it but not massively so as I have heard of others. Also, Revlimid is regarded as a form of chemotherapy as is Velcade. They are…[Read more]

oops, sorry, this is Gaye messing about!

Dear Bridget – I was completely adamant that I would never take dex again after preparation for my first SCT and I have never gone back on that level since but have gone on much lower doses. I like you share the taste business with dex but I also noticed that when I was on Revlimid it first took hold so I can't be completely certain. All I know…[Read more]

Dear Sylvia – All the postings I made to you are on here so I am not sure why haven't been able to access them. I wish I could help you. How is your treatment going. Would be interested to hear. I am having radiotherapy on my back pain next week and now in my second cycle of Pomalidomide.

Good luck Sylvia.
Gaye xx

Dear Friends – I am in awe of some of your stories and of the lot that life has thrown at us. You are all great. I wish you good results. I had my RT simulation today and it seems that the T6 has collapsed completely so it would gain nothing by a balloon kyphoplasty. So next Thursday they are treating some of the thoracic vertebrae and lumber…[Read more]

Dear Clara – Good to hear from you. You will always have to keep a close eye on the communcation between both hospitals. Two is bad enough but when it gets to three in my case ragarding the RT, stress rates rocket. Good luck and do call Ellen.
Love, Gaye x

Hi David
We have big plans for the profile section this year so we will be updating this whole area of the website. Currently there is a small section called "About the author" where you can write a small biography. For some reason the box you type this information into is tiny at the moment, although you can still add plenty of text. I will…[Read more]

Thank you all you lovely lot for your wonderful words. I used to help out at the hospice Min but I stopped that long ago other than helping out with campaigns. I need their help now and the idea of me flapping around with a duster is just too much! I now flap around with my stick and that frightens the living daylights out of them. If they…[Read more]