• Gaye replied to the topic Bone Pain in the forum General 11 years, 2 months ago

    Thank you for all of your lovely and positive replies and I shall digest them. It's not helped by the fact that I am sill waiting for the polmalidomide to be delivered to the hospital before it can be sent on to me. I have already missed one week of treatment and am not keen to miss a second one. Hopefully today.

    Regarding pain relief I got…[Read more]

  • Dear Nigel – I will be starting my 3rd cycle next week having acquired it under 'special circumstances' . I would say be interested but not too interested at this stage as it still has to go through its third stage clinical trial, get its European licence and then no doubt go through the NICE torture before it hopefully will become generally…[Read more]

  • Gaye started the topic Bone Pain. in the forum General 11 years, 2 months ago

    I had my RT for thoracic and lower back pain 3 weeks and as yet have had no relief. Will it or won't it work? All I know is that it is excruciating and has been for months. It has changed the quality of my life and I long for it to go.

    I have been reading more than writing on this board lately and pain/how to deal with it has come up a lot -…[Read more]

  • Dear Kath – As far as I know there are two of us on this board who are having pomalidomide – mine acquired from the drugs company under special circumstances. It is not part of a 3rd stage clinical trial which I believe is due to start in various hospitals around Easter. Your doctor should be able to find out where but it may not necessarily be…[Read more]

  • Gaye replied to the topic Feeling Rough in the forum Treatment 11 years, 2 months ago

    Dear David – I didn't get complete remission on my first transplant = it was quoted as 'traceable' but it was enough to give me 18 months remission and live an almost normal life. So, don't go there until they tell you. I know it is really hard this rollercoaster of an unwanted companion but you are a fighter and much loved and respected on this…[Read more]

  • Gaye replied to the topic Feeling Rough in the forum Treatment 11 years, 2 months ago

    On my first clinical trial with velcade in 2005 it seemed to be the standard of giving it twice a week but a lot of water has flown down the river since then and they now have a much better idea of side affects globally to show now that once a week delivers the same result without the some of the nastier side effects. I understand that a "son of…[Read more]

  • Dear Jet = when it first hit me with thalidomide I fell into more or less complete comatose state and your description of it just sounds about right if not downright creepy! I actually remember thinking the next morning that I had slept in that position the whole night not moving once. It's happening again with pomalidomide? The laugh is having…[Read more]

  • Debs – when you first started this thread I said that I took my pomalidomide in the morning and everything was fine. Well on Saturday night I slept from 10pm to 10am and that was half my day gone. I then had a sleep in the afternoon and early to bed in the evening. I think it's fair to say I haven't quite got the balance right! So my doc has…[Read more]

  • Now here's a suggestion to keep the bra thread 'uplifted' so to speak. My cleaning lady Debbie has just suggested we all wear sports bras (although where you stand with this one David I am not sure). Slightly concerned Min that we will be able to identify newly retired ladies if the boobs have gone south much quicker than normal. I could have…[Read more]

  • Hello Tina – Thanks for the update of Patrick. Yes I too have had a return of the night cramps since Pomalidomide but so far not as bad as Patricks. I do wish him well Tina.

    Good luck Debs with your Revlimid – will be thinking of you.

    Love, Gaye xx

  • 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]

  • Gaye replied to the topic Web Site in the forum General 11 years, 3 months ago

    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]

  • Gaye replied to the topic I'm baaaaaaaack! in the forum General 11 years, 3 months ago

    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]

  • Gaye replied to the topic Tiny MM Quiz in the forum Off topic 11 years, 3 months ago

    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]

  • Gaye replied to the topic Fizzing on Revlimid in the forum Side-effects 11 years, 3 months ago

    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]

  • Gaye replied to the topic london hospitals SCT in the forum General 11 years, 3 months ago

    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

  • Gaye started the topic Web Site. in the forum General 11 years, 3 months ago

    Good to hear from you again Kath but am sorry you are feeling so rough with the dex. I think many of us can relate to that.

    Regarding the new web site, you are not alone. I tried to post last week about it but didn't know how to put it into words and that I think is what the problem is. There is something not right but what it is I don't…[Read more]

  • Gaye replied to the topic Radiotherapy in the forum Treatment 11 years, 3 months ago

    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]

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