Dear Friends – 4 weeks since having RT and still no relief from back pain. I am almost convinced it will not happen and beginning to despair. Help!
I eventually started my third cycle on pomalidomide this week in the evening at around 9pm but slept around to 9.15am. Is there a good time in the evening to take the tablets to get optimum effects?
I am sorry not to be in joining in at the moment but I do read your postings when I can and try to keep up with your postings.
Take care and love to you all.
Gaye xx
At last my month's supply of pomalidomide arrived on Friday evening round 8pm delivered by a rather lovely young man so I can now start cycle 3 tomorrow evening. At last. All that it takes to get our medication but at least it is here!
Love to you all. Gaye xx
Hello Pamela – thanks for your information and I am so glad your bone pain is now under control. Tramadol has long been ruled out as it contradindicates with my anti-depressant drugs. You win some you lose some! Thank you anyway Pamela.
Love, Gaye xx
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 addicted to fentanyl patches before within almost no relief and like Bridget I long stopped taking Oromorph for the same reasons as herself. Min you have boosted me about Peter's
6 weeks and I shall hold on to that – I am only sorry he is in pain again waiting for a kyphoplasty.
Once again thank you dear friends
Love, Gaye xx
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 available. As a drug yes – I know it is not going to cure me but I hope it will give me a quality in the life I hope I still have left.
I normally interrogate my docs to find out what's coming up in the future and as it is a trials and teaching centre they are usually well up to speed with upcoming novel drugs. I don't know how this will fare for me but I just felt I had to go for it. Life is still to precious.
Love to you all, Gaye xx
PS It's in tablet form and is part of the 'lidomide' group ie thalidomide and lenalidomide(revlamid). It seems effective and has had some good results in the US.
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 your hospital. Kath – nothing ventured, nothing gained. Ellen our nurse may be able to help you here in locating where the trial is taking place so my advice Kath is to go for it. We just have to keep on trying and fighting.
Good luck and if I can help I will certainly do my best.
Love, Gaye xx
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 board. Go for it David. Love, Gaye xx
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 velcade" is on its way (don't know when) which cuts out PN altogether. What joy!
So much has come on stream since I was first diagnosed back in 2004 compared to very little previously so things are moving for our benefit more than ever. That's great news maybe for some of us but also for future patients. Hang on in there
Love, Gaye…
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 agreed to my docs'suggestion of taking it in the evening instead of morning, for the second month in a row it is not in stock and they can't get it to me from London until tomorrow.
I can't get angry – there's is no point.
Happy days my lovelies!
Love, Gaye
oo point. I shall leave it to em to so
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 got me on evenings for the pomalidomide and doesn't know how I have managed to stay awake inbetween – well I haven't! I will let you know the outcome.
So no more smuggy Gaye – any help in keeping awake is gratefully received!
Love to you all, Gaye xx
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 slung mine over my shoulders when I was 3 stone heavier but thanks to loss of weight it is now impossible! We seem to have deviated here Jet but this is what happens when we get going!
Thanks for your concern Min about my temporary absence. I have now had my RT but no relief just yet as I was told. It's been a bit hard fighting off the depression as well so having a bit of a struggle at the moment. I have still been following the threads though with lots going on for you all.
Much Love, Gaye xxx
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 whenever. I usually find the sleepless nights comes when taking dex which I do once a week. So again it looks like people respond in different ways which always makes this disease so difficult to treat and tolerate sometimes.
Well Debbie I am pleased you are now getting the sleep you need – and your little helpers to get you up in the morning!! Lovely.
Much love, Gaye xx
Just remembered a very important ingredient of all three drugs. Thalidomide was originally marketed in the 60's as a sleeping aid not knowing the devastation it was going to cause to new babies born without limbs and other deformaties. Therefore it was meant to be a sleepy drug and so it is. Some countries stll haven't settled their claim with the manufacturers but Britain did so it seems its story still goes on after 50 years. No sure what this brings to your observations but it has certainly taken my mind back to an awful period in history.
PS I'm talking rubbish over Thalidomide as a sleeping aid – it was in fact an anti-sickness drug given to pregnant women. Shame I don't know my facts properly Debs!
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 first came with Womens' Lib with stripping off bras, now we can use it as a side efect of myeloma!
Good luck Jet.
Love, Gaye
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 can find whatever is the cause. In the meantime I shall keep on looking.
Love, Gaye xx
