[MariParticipant]

Thanks for that warning Tina, I was not aware of that problem with Zometa, nor was Steve to my knowledge but its a very important point.

Hope you are well my dear,

Love Mari x

[MariParticipant]

No he was not allergic to pamidronate, he swapped because of the way zometa has been shown to help prolong remission,

M x

[MariParticipant]

Dear Amelie,

I am not sure but I think Zometa is considered to be the best option. My husband Stephen swapped from Pamidronate to Zometa and now has it monthly since he had has SCT. He has to have his calcium levels checked before he has the zometa infusion in case it brings his calcium levels down too far, and as they are often on the low side he takes calcium tablets daily. There is now some evidence that Zometa helps to delay the progress of myeloma. I forget where I read the research but I do remember it was reported in a post on this website.

Steve has had troouble with allergies to drugs, he was allergic to allopurinol during his SCT but has had no trouble with zometa. I hope this helps,

Mari xx

[MariParticipant]

Dear Amelie,

This is such a difficult issue. For some people being able to work and in our case provide for a family, are very closely related to their self respect and self esteem. All my husband could think of when he was so ill with the symptoms and treatment for myeloma was getting back to normal, he was obsessed with it and it became his mantra. He was off work for more than a year and was utterly miserable when his sick pay ran out after 6 months, even though we were able to make changes and manage on what I earn. He felt he was not doing his part. Its crazy I know but it was so important to him, to the man he saw himself as. He has been back to work full time since January and that includes a 90 minute commute, each way. The one concession he has made is driving to the station instead of a 20 minute walk, althugh he insists he should be doing that too. I dont know why he is so driven and it worries me sick as you can imagine. I think he believes that if he can build up his strength and fitness, he is also obsessed with exercise, then it will keep the MM at bay longer. I dont think there is any evidence for this, but I do think he will be able to deal with the treatment better if he is fitter when the time comes. It is so difficult to advise people like this, I just drop ideas into our conversations and hope that one day he will think its his own idea to take things more easily. He has Just turned 55 and I know he hopes he will be old enough to retire before he relapses. Its a kind of extreme positive thinking, and i really dont have the heart to take that away from him.

I hope this has been helpful, I dont post often these days and tend to go on a bit when i do. I hope all contiues to go well for you and John,

Love Mari xx

[MariParticipant]

Dear Min,

I have not been here for a while and it was such a shock to hear of Peter's sudden passing. I am sending you and your family my deepest sympathy and you will all be in my thoughts as you say good bye to Peter on Wednesday and afterwards,

Much love Mari xx

[MariParticipant]

My dear Sarah,

I was with utter shock that I read your post today. I am so so sorry for the your of your beloved Gordon. I cannot find words to express my sorrow at this news but my thoughts and tears with be with you at this time,

With love,

Mari xxx

[MariParticipant]

Dear Gill,

So sorry to hear that Stephen has had such a tough time with his SCT. I hope that now you have him home he will start to feel better and regain his strength. I know how strong you are as well, but do remember to look after yourself as well. Here's to a long hot summer, anytime now(!), that you can both enjoy and re energise,

Love to you both,

Mari x

[MariParticipant]

So pleasd to hear you can play again, i know that must mean a great deal to you. It sounds as if you are responding marvellously, keep going.

Also good to hear you doctor is considering something approaching a 'personal dose' for you as well, you will surely tolerate it so much more

Best wishes for the rest of it,

Mari x

[MariParticipant]

Thank you for your comments and words of encouragement everyone

[b]Roz[/b], it is so good to see you posting here again, I know things have been tough for you, but your rose garden sounds a lovely idea and I hope you are beginning to find things a little easier with time.
Dead right [b]Tom[/b], I did shed the odd tear but my daughter let on to Steve and I have not heard the end of it! Glad all is well with you.
[b]Mavis[/b], Steve's paraproteins were 33 when he was in hospital just before his back op. He had seen his consultant a couple of times with rib and back pain but they said it was not myeloma related because the PP's were not high enough, 17 in July and 24 in October, by January the plamcytoma had made itself painfully obvious and he was rushed in for surgery.
[b]Dai[/b], I have followed your story particularly as you were just preparing for SCT when I found this site. I followed your joy when everything went well and when you drove down to Kent for your son's wedding ( I think) and also with sadness I followed your relapse and subsequent velcade treatment. I am so pleased that you are responding so well to treatment and hope that this means a lengthy remission for you. Velcade can be a wonderful drug when it suits you I understand. As I think Roz said, keep fighting the fight everyone,

Love Mari x

[MariParticipant]

Dear Bridget,

I am so sorry you are having such a bad time and I hope you find a way to make things easier soon,

Love Mari x

[MariParticipant]

This is a very difficult question to answer, if you look at the research papers some of the people at the fore front are in the London hospitals but that is not to negate some of the wonderful experiences that Dai and others have had in regional hospitals.

Prof Schey ( pronounced Sky) is Chair of UKMyloma Foundation, works at Kings. My husband has been treated by him and his team and we cannot fault them

Dr Gareth Morgan at the Royal Marsden in Surrey is also considered to be at the cutting edge of work on Myeloma and has a great team at this specialist hospital, I know some people on this forum are treated there.

You have already been told about Dr Kwee Yong at UCH. You might have a look at some of the research and see who is doing it, if you can stomach it.

We live in West Kent and my husband has had excellent treatment between our local hospital and King College Hospital. I know it is a very personal thing and I hope my comments have helped a little. I wish you good luck as you continue on your journey,

with love,

Mari

[MariParticipant]

Lovely Dai, made me weep right here at my desk, better pull myself together as I have thirty 13 yr old boys waiting for me in fiteen minutes time!

Beautiful words but I am very glad you are not going just yet,we still need you a while yet,

Mari

[MariParticipant]

Dda iawn Dai, absolutely delightful news, you are obviously one of a growing breed of Velcade ninjas!

Keep up the good work,

Mari x

[MariParticipant]

Phew, I am so chuffed for you, all we need now is for them to sort out your pain, and Gaye's too. Surely in this day and age no one should suffer pain like this without them being able to do something about it.

On the housework front, remeber what Quentin Crisp said, after the first two years it does not get any worse! It works for me.

Look after yourself,

love Mari xx

[MariParticipant]

Oh Tina, I am so sorry to hear that you have lost Patrick. You have my deepest condolences and I will be thinking of you so much. I hope you can remember Patrick in all the good times before this awful disease took him,

With much love, Mari xx

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