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

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]

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…[Read more]

Hello Clara – I don't know very much about about Amyloidosis but I believe that there is a connection with Myeloma because this site embraces it with other inforrmation. Maybe a call to Ellen at MUK to get some further information would help. I also know that the main hopital specialising in this disease is the Royal Free in London. Have you…[Read more]

I have finally got my date for RT simulation for next Wednesday at my local hospital. However, they now think that the T6 fracture is an old injury so it is no longer quite so straight forward. Anyway hopefully we shall find out soon.

Hope you all have a good weekend. I can finally see daffs and snowdrops coming out. Is spring finally on…[Read more]

Dear Bridget – in answer to your question, totally fed up waiting to hear when I get the nod to start RT treatment. This is the problem with multi-hospital involvement and I hate it. Shall be on the phone tomorrow to get some answers.

My favoure Wallander has been with Krister Henrikksen. Kenneth Branagh's version just left me losing the…[Read more]

Love it David – thanks for a good laugh! Love, Gaye x

Thanks Min – I glanced at that one but gave it the cold shoulder. Tuesday night was just not the same – Holby having to settle in with new characters, Malik we learn is gay and Nurse Petrenko becomes an F1 doctor overnight and in the same ward. My favourite now is Sasha. I could fall in love with him! I am going through withdrawal symptoms…[Read more]

Dear Tina – yes we both sound in similar situations. I've just remembered that Patrick's consultant does not give him GCSFs hence his frequent hospital stays, so forget about stocking up on the injections!

I am wishing you both well and will keep you posted after my first check up at Barts on Monday.

Take care,
Love, Gaye x

Hello Sylvia – Thank you for your response to this thread and your lovely words. I somehow feel I can empathise with your situation because when I relapsed the first time I was just devastated. I had 18 months of remission first time round and then 1 year the second. Just when you feel your life is back on stream something else bites you on the…[Read more]

Dear Tina – thanks for your message and this is how Pomalidomide has been after 21 days. I am now on my free week as from today. I too take 40mg dex per week even in the free week. Because I have low platelet counts it was decided to stay away from any blood thinning tablets such as aspirin/warfarin etc. Pomalidomide also attacks the White…[Read more]

Dear Min – you can be excused for not joining us as yet another sado with a first class piece of evidence on your own behalf. I agree that watching Holby City does make you a sado and here too, along with Silent Witness, I must confess to being a double sado, so Tuesday is my evening of pure delight. After that it all goes downhill. Yes Holby…[Read more]

So girls, that was it as our heroic three walk off into the sunset will we ever see the likes of them again? Harry didn't take the job as his pent-up desire for wots-er-face is showing no signs of abating. It seems to be left open for us sados to start the Bring Back Silent Witness Campaign or walk off into the sunset with them and see if Harry…[Read more]

My consultant has suggested I might like to think of another kyphoplasty on my fractured/crushed T6. It would mean more travelling up to the Royal London where they do these ops but its effect would be much quicker than having RT. I shall discuss it with the consultant RT locally to see what he thinks. At least things are moving for which I am…[Read more]