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 possible. Are you now on any treatment – would be very interested to hear.
Welcome back Kevin – I have been rooting for you and continue to do so.
Love, Gaye xx
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 hump first appeared I was terrified as I thought I had developed another cancer but thankfully I was soon reassured.
Love to you all. Gaye xx
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 is that our individual form of treatment depends very much on our type of myeloma.
I have checked your side-effects against my own and there is a link there with most of them.
The dex and revlimid can make you dizzy and the dex certainly is responsible for the shaking/trembling. I can barely write when on dex and the drugs affect our mood in all sorts of ways. The taste is either due to revlimid and/or dex but we haven't quite decided other than it's not welcome! The tingling sounds like peripheral neuropathy associated with revlimid so tell you nurse specialist just to check it out.
It sounds like you are experiencing most of the associated side effects as we have, and we are still here, so keep moving on!
Good luck Jet – we will be thinking of you.
Love, Gaye x
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 procedure – the thought of it is probably worse than the transplant, so just go for it!
Good luck Norman.
Gaye
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 understanding David but I won't say how true it all is as the three consultants involved in this from different hospitals have their own rationale supporting their case. There is no tumour I believe so the RT is meant to attack myeloma cells.
If anyone else can come up with a theory on this I would love to know but my greatest wish is to be relieved on pain. Thanks for asking the question David – it is also one that has been bothering me since both methods were suggested.
Love, Gaye x
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 Myeloma Special!
I start the RT next Thursday on the lower thoracic and lumbar region so I hope for some relief with the pain.
I wish you a very good weekend. Much love to you both.
Gaye xx
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 just delivered in a different way – one infusion (velcade) one by tablet (Revlimid).
When I look back at some of your postings you have a glorious way of dealing with Peter. Reinforcement of your nagging – wonderful. Whatever though you are dealing with it together even though the dogs have the last word. I find that very touching.
Well done Min. Love, Gaye x
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 is that I hate it. The fact that Pomalidomide is also in the same family as Revlimid does make me wonder if that is the link too. Either way we are stuck with it!
Come on old friend if it helps that we seem to both be sharing the grumps, outrageous behaviour and pain, although thankfully your pain seems to be improving, then I can't think of a better person to share it with!
The pox yet again to myeloma.
Love, Gaye xx
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 region by RT. Hooray! Good news on the out of stock Pomalidomide drugs on Monday. They got swung into action and a courier from Barts delivered it at 9pm yesterday evening. That's what I call thinking about the patient. Cycle 2 started today.
Love to you all. Gaye xx
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
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 behave they Knighted or Damed. He He, I enjoy that!
I thought I would update you that the courier service got to me at 9pm yesterday, just narrowly avoiding Holby City. I completely forgive then for coming up trumps. I was looking gorgeous in my rather tatty dressing gown but you could see he was impressed! Cycle 2 started today so good luck everybody and many, many thanks.
Love, Gaye xx
Just an update on Pomalidomide after first cycle. I have become extremely crabby as time has worn on, a mixture I think of the drug but also of the unremitting back pain which has finally worn my patience and tolerance out. It now just wants to make me cry, my patience and self-confidence have just gone as every movement brings pain and more loss of energy. Am I feeling very sorry for myself?. Yes, because if I can't allow a bit of self-pity now and again and I just don't know how I would cope. To add to my miseries when I went to Clinic yesterday they were out of the main drug, Pomalidomide and I would have to go back to collect it. The restraint I had to show without strangling the pharmacist – a three hour return journey is not my idea of fun. However, a courier is bringing it to my home this evening so hopefully it has been resolved. AARGH!
First visit re the RT tomorrow morning for the simulation so fingers crossed. I have been reading your posts on RT at the moment so I am getting an idea of length and success of the treatment. Thank you for that. Glad Bridget you are feeling some benefit but today does not seem a great day with pain and other nasty little buggers.
Thank you for listening and posting and keeping us up to date. Felt the need to rant and going to the hospice day care has helped so much. Tina, any further news on Patrick as he goes through his first cycle?
Love to you all. Gaye xx
