[MariParticipant]

Dear Gill,

I am so sorry to hear your news. I know you and Stephen must be feeling desparate. Is there really nothing else they can try? Any trials, bendamustine or even going back to some of the previous treatments? It must be hard for you because if he wont let you go to the oncologist with him then you will not have had a chance to ask these questions. It sounds as he is very angry and who can blame him.

I am not sure if this is helpful or not, but I do remember someone posting ( sorry I don't remember who) that as her partner became increasingly ill they still managed to travel, especially to France, as they were so good at dealing with Myeloma. To be honest, my Stephen is only willing to travel to France at the moment because he feels safe there if something goes wrong.

I really feel it's so important that if Stephen's time is limited he should do what makes him, and you, happy.

This is such a tough time for you, make sure you look after yourself. You have always been such a mainstay of this forum, I for one really miss your presence here. Maybe now it's time for us to support you as you have supported so many of us.

Much love and hugs to your both,

Mari xx

[MariParticipant]

Yes Gill I agree, it feels so strange to be going back to all that again and I have to admit to being more than a little nervous, especially second time around.

It's so good to see you posting again, I have missed seeing your presence on the board. I guess this means you are back from France. How are you both? I hope Stephen is feeling well and you both enjoyed your time away,

Much love Mari xxx

[MariParticipant]

Hi everyone,

I did try to quiz Prof Schey about the different protocol but he was not letting on. Steve got the impression that it is an old protocol that they have realised works rather well. We will let you know as soon as we find out but we dont expect the transplant to take place until late summer early autumn. Steve is having one more cycle of Velcade before they start the work up. He is about to start week two of the cycle and apparently they like them to be clear for a while before they make a start. He will have to have all the range of tests again and go through a harvest. He got 5 million on his first harvest, Eve, and they put them all back in his first go. I am writing this on Sunday, having been away this weekend with my Dad. I hope that by now Slim is settling into Davidson Ward, I remember that worrying wait for a phone call to confirm a bed was available. I assume then it's Melphalan on Tuesday and you are off. I will be thinking of you and hoping everything goes well. Are you going to stay up there or travel up and down? I made it in to see Steve most days except a middle weekend when I went down with a dreadful cold. There is a direct train from Sevenoaks to Denmark Hill, but I think you are further down the county. Do take care of yourself as well during this time, it's going to be tough. I remember there were times when Steve hardly opened his eyes during my visits, but the difficult times pass surprisingly fast and it is all worth while when you get to remission and can start enjoying life again.
Rosie, I guess you will probably have velcade first to bring you into to close to remission. Prof Schey sees SCT as a consolidation of this treatment , as I understand it. Steve went into the Oncology centre in Maidstone for his Hickman, I think this is the thing he is least looking forward to about going through the procedure again.

Much love to you all,

Mari

[MariParticipant]

Dear Sarah and Henry,

I am so glad to hear that Henry is feeling so much better. I remember how wonderful it feels to start getting some normality back into your life. I hope that life beginnings to feel much much more normal for you both and Henry achieves a lovely long remission,

Lots of Love,

Mari xx

[MariParticipant]

So sorry to hear you have been poorly Dai, but glad to hear you are on the mend, look after yourself and get back to normal soon,

love Mari x

[MariParticipant]

Dear David,

Steve and I left Kent yesterday morning in pouring rain to arrive in Bournemouth at lunchtime to bright sunshine and temperatures 5 or 6 degrees higher. We had a lovely lunch with our daughter and walked on the cliffs of Hengistbury Head, it was glorious! Carys, our daughter, who is nursing down there, tells me Bournemouth is always sunny. The New Forest is just north of Bournemouth so I hope this bodes well for your trip. I hope you have a great time. I am back to work tomorrow and admit to being more than a little green about your holiday, I love the New Forest.

When we got home home last night, it had obviously been raining all day, we were very glad to have escaped it.

Enjoy your holiday,

Love Mari x

[MariParticipant]

Thank you Wendy xx

[MariParticipant]

Dear Susan

I was really shocked and saddened to hear that Sharon had lost her battle with this awful disease. I remember her posting on here often. My thoughts are with you and her family and I send my condolences for this very sad loss,

Mari

[MariParticipant]

Hello Eva,

Steve's consultant is very clued up about the current research and I got the impression that it very much informs his clinical decisions. He was talking about the statistical data supporting various regimes but he did not go into any detail about what the protocol is. Steve got the impression that he was talking about going back to the way they used to do things as he felt it gave better outcomes. This is not very helpful, I know. I hope things go well for you and you find a good treatment, whatever you do. The Prof did say that he felt that the less intensive treatments were often giving better outcomes than intensive treatments such as SCT,

Good Luck,

Love Mari

[MariParticipant]

My dear Bridget,

I am so pleased to see you posting again. I know you have been having a difficult time of late and you have been in my thoughts a very great deal. I hope you get some relief soon and you can regain your strength and return to some normality. I wish I could send you some strength but in the meantime I am just sending you lots of love,

Mari xxx

[MariParticipant]

So sorry to hear ths news, this explains your FB status.

My thoughts are with her family and friends at this sad time

Mari

[MariParticipant]

very good news indeed, Dai. Thank you for keeping your eyes open and keeping us informed. I hope you are feeling well and the Rev and Dex, is suiting and working for you. Perhaps you will be one of the first to benefit from 'Kyprolis'.

love and best wishes,

Mari xx

[MariParticipant]

Dear Eve and Slim,

I am so sorry to hear of your sad loss, desparately sad. My thoughts are with you, your daughter and your families at this time,

Much love

Mari xx

[MariParticipant]

Hi Ann

My husband has just finished 5 cycles of Velcade with dexamethasone. He finds he suffers from dreadful bloating. His tummy swells up to a huge size and is very uncomfortable. He gets a nasty taste in his motuh and that can affect his appetite but he generally finds that he gains weight when he is on steroids. He did when he was taking dex as part of CDT. He has been very lucky to have had his velcade by sub cutaneous injection up until the last two injections and has not suffered many side effects although the tiredness has been getting steadily worse. However this week, after two intravenous injections of velcade, he has been exhausted, hardly able to get out of bed and with no motivation to do anything. Previously he was able to go to work on the days he was not having a treatment, but this week he has not had the energy to do much at all. The good news is that he has now finished his velcade and his paraprotein levels have dropped to less than two. His last treatment was last Friday, and today,for the first time, he has more energy. He cooked supper tonight and he says he is going to work on Monday! We will see.

I hope the Velcade works well for your husband and he does not need too many more cycles and can start to feel more himself again,

Love Mari xx

[MariParticipant]

Well I never, it is a small world, we live in the Culverden area just behind the hospital but we spend a fair amount of time in Bournemouth as my daughter is studying nursing down there. It's a beautiful area and we love it, perfect for the odd weekend away!

Please do add me on Facebook, I searched for you but in vain. You will see some other TW info about us there.

Mari xx

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