[GayeParticipant]

Brilliant that it has gone Keith – I hate drugs when they affect my taste. Whatever you told it to do it seems to have taken notice!

Love, Gaye x

[GayeParticipant]

Dear Bridget – I love the casual way your doc says there is always a way to get the drugs you need! I like him/her.

When NICE gave the OK for Velcade to be used it excluded it for first line treatment using it only after relapse. As time goes on I think we will see more and more people going on it for a second time, particlarly as they can reduce the dosage and the dex.

Good luck Jen.
Love, Gaye x

[GayeParticipant]

Jo – go to the bottom of the treatment home page and there is a button saying start discussion. Press that and you are ready to go. Good luck with the bendamustine. I know that Patrick has had bendamustine but I've no idea if it was a combination drug or on its own.

Love, Gaye x

[GayeParticipant]

Dear Susan – yes, I have had velcade twice. Once to prepare me for my first SCT and the second as treatment on its own along with dex. It sounds as though it really suited you well. I had a gap between both treatments of about 2 – 3 years. Your doc may well want to try you on something else so just ask him all the questions you need to know. What are the pros and cons of having velcade so soon. Should you have a break before going back on it – at least you know it works well with you.

I would say that it didn't work as well the second time round because my body had taken quite a bashing before and therefore not so resilient as the first time. But, that isn't to say it will be the same for you. I don't know if many people have yet had the opportunity to have velcade more than once. I did because I was on a clinical trial.

Susan I am sorry you are relapsing. Please keep us informed what treatment you will be going on
Love, Gaye x

[GayeParticipant]

Dear Sylvia – I am sorry I was a bit confused about your surgery and it all makes sense now. The balloon kyphoplasty is a doddle compared to your experience and of course Bridget (aka metal mickey, mother whale etc etc). I can understand your need to feel someway normal and I truly hope your treatment will bring that for you. Hold on to that half-full glass!

Yes, dex has a fan club here and reading Gill's story of Stephen is wonderful. High as a kite on dex I went out one morning declaring to the world that if anybody got in my way crossing the road I wasn't stopping. Fortunately they all behaved beautifully.

Sylvia I also attend Barts so if you see an old crone with a stick hunched up and muttering obscenities to all and sundry, that's me. Would love to talk to you but could you take the chance!

Love, Gaye x

[GayeParticipant]

Dear Sylvia – I have had two operations on my spine, known as balloon kyphoplasty. The operation is done by keyhole surgery where cement is inserted into the collapsed vertebra. I was in overnight for both ops and the relief from pain was almost instantaneous as well as a return to my ease of walking and posture.

I am sorry that you have relapsed but if you are in pain now the thinking may be that the velcade treatment will work and hopefully your pain will go. I know other people on this board have found this happens and it has happened with me.

Good luck Sylvia. You are in good hands and I wish you well with your forthcoming treatment.
Love, Gaye x

[GayeParticipant]

Thank you Keith for your very kind words. As always they mean so very much to me. What I have found in posting is how many of us are beating the times the docs give us – I call it my sell-by date and that really spurs me on for future patients. They will get there but in the meantime we have to get on with our lives with hopefully improved quality as we go along. It sounds like we are all up for the challenge – Tom, never could your phrase of onwards and upwards be so appropriate. Well done that man!

Love to you all, Gaye xx

[GayeParticipant]

Dear Jenny – I am so glad your lovely Dad is now in the hospice where I am sure you are all being treated with such dignity and love. He has made his decision but I know how painful it must be for you. I echo Tom's wise words about counselling (tears and all). Most hospices provide this so do use it if and when you decide to want it. In the meantime you know he is in good hands and we are always hear to listen.

My heart goes out to you Jenny.

Love, Gaye x

[GayeParticipant]

Thank you all for your lovely and different replies which goes to show there is no standard way of living with myeloma. It seems we very much need support and love which isn't always forthcoming for some, denial seems to appear throughout as our way of dealing with what we find hard to deal with.

I wasn't sure if my thought for the day was appropriate but I am so glad I wrote it and so glad you responded the way you have. Thank you so much for that. Your own thoughts have been very moving and honest.

Much love
Gaye xx

[GayeParticipant]

Dear Bridget – so glad you have finished all your RT and hope you will feel the benefits sooner rather than later. You must be exhausted going up to London 5 days although at least you are in a car which helps. I have to go up by train and taxi to Barts so anything like transfusions and RT I always have at my local hospital which saves the journey.

Sleep as much as you need and moan as much as you need. What the heck! I had the local consulant radiologist phone me at 7pm yesterday evening to check I was ok and to assure me he could help me. I was very pleased. Anyway Bridget wishing you all you wish yourself and hope the treatment starts to work soon. Then onwards and upwards with the Revlimid AND rexy dexy!
Love, Gaye xx

[GayeParticipant]

Dear Min – I am glad Peter starts his Revlimid today and I wish him good luck with it. I found it very tolerable and was able to live a near normal life with it although it did make me very tired which I caved in to rather than fight it. Good luck with sexy dexy!

I laughed when you thought that Revlimid packaging looked cheap compared to Thalidomide. The packaging may not be up to much but the cost is extortionate. For a year's supply you are looking at over £40,000. Never mind the quality feel the width!

Anyway it's onwards and upwards time. Go for it!
Love, Gaye xx

[GayeParticipant]

Sarah – I see the phantom hand has come back again on your shoulder after being airbrushed out! It never fails to make me laugh!
Gaye xx

[GayeParticipant]

Dear Jo – great picture and good to see you in full feature. Well done – you finally cracked it!
Gaye x

[GayeParticipant]

Hello everybody and thanks for all your messages. Dai, the pompoms it shall be. They come in a red capsule – no writing – zippo. As basic as you can make them. I started the second week today and the dexy blighters floated like a butterfly down the old throat this morning. No up-chucking today Min – I took control. Not much change in the blood counts yet – they are still very low but it is early days and what might be good for the Hb may not necessarily be good for the platelets. The one holding at the moment is the Neuts. Anyway I wll keep you updated.

Gill I laughed so much at your comments about these selfish NIMBYs. Wonderfully spikey and much deserved by them.

Today I had to go to my GP, then to the hospital for blood tests and then I went to our hospice day care. I didn't think I would manage as the back pain is so restricting my mobility but I did. I had a lovely day at the hospice. Lots of laughter and a glorious foot massage and nails clipped. Don't ever accuse me of not enjoying myself!!

Love to you all. Gaye xx

[GayeParticipant]

Thank you all very much for your help. I can't take tramadol as it contra-indicates with another drug I take. Typical. Tina, at the moment I am just taking co-codamol but it doesn't even begin to touch the pain. Keith I am so glad your pain has gone now you are on treatment. Bliss!

I read that Susannah York died last week of advanced bone marrow cancer which when I looked it up became myeloma. No wonder people don't know of myeloma when the press won't acknowledge it with its correct name.

Just coming to the end of my first week on pomalidomide. It makes me feel drowsy but that's about it so far. Will keep you informed.

So, at the beginning of another week good luck everybody with treatment etc. Thinking of you.
Love, Gaye x

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