[AmelieParticipant]

Hi Eve!

We actually don't have much snow – your husband would be disappointed! We have mostly wind and rain 🙁 However this year, I am happy for the miserable summer – I guess it would be much worse for John if it was very hot.

John also received Velcade as first line treatment prior to his first sct. Prior to the second he got thalidomide. I don't know about trials in Denmark – I guess I have read everything which is available onlie on the topic myeloma in Denmark, (a lamentably little amount)and there was nothing on maintenance with Revlimid.

Has the trials with Revlimid been stopped in England after they withdraw the application? How easy is it to get Revlimid maintenance in the UK?

I plan to call Celgene to ask what happened – I have called them before and there was a nice and helpful guy. My impression is that in this case it is not the pharmaceutical company who is the "bad guy", but the authorities. Sure they have to be cautious, and sure Revlimid is toxic, but remember it is given to patients suffering from a incurable disease for whom 1.5 year means a lot and long term side effects mean less. And Revlimid IS used already for relapsed patients – it is only as maintenance (low dose) it is not given.

Love
Amelie

[AmelieParticipant]

Thank you David! All the best luck to you too!
Love
Amelie

[AmelieParticipant]

Thank you Tom!
All the same good wishes to you,
Love
Amelie

[AmelieParticipant]

Thank you very much! He plans to be back working ultimo september, so I hope he will manage that!

[AmelieParticipant]

Hi Eve,

The doctor has mentioned some maintenance treatment, but it isn't decided yet. Apparently it will be with thalidomide – if it will be. His doctor seems to be very much against Revlimid. I don't know why, but Celgene has withdrawn its application for Revlimid in EU, so maybe that is the reason. Although the only "bad" thing I could find on Revlimid is the increase in second cancers – from 2 to 7%, which is in my opinion still low and a risk worthy to take since it prolongs the duration of the sct with 1.5 year in average.

John's quality of life since the 1st sct was very high – he was able to work full time. But it didn't last as long as we expected, so I am very keen on some kind of maintenance. 1st sct was in August 2010 and after New Year 2012 he began to feel "something" again. From end of March he was treated with thalidomide and he got the 2nd sct 2 weeks ago.

We are in Denmark and I think they treat him as an individual, but I am not sure. He is definitely not on trials. John doesn't ask the doctor many questions.

Love
Amelie

[AmelieParticipant]

John was lucky with his first stem cell harvest so they had enough for the second sct and they didn't have to harvest again.

All the best luck to Stephen, hope he will have the same experience as John. According to the nurses it isn't unusual that 2nd time is easier.

Love
Amelie

[AmelieParticipant]

Great news for both of you, I am so happy for you!

[AmelieParticipant]

I am so terribly sorry to hear this.
Your mom made a great difference to us here in this forum.
All the best wishes to you.

[AmelieParticipant]

Hi Debs,

I don't know if they are available here, but I will check it out – if not there will for sure be something similar. Can the patient bring his own ice and can all kinds of ice be used? Maybe even vanilla ice? Or should it be water based?

I really hope to find an alternative, because after last time he couldn't even watch someone drinking a glass of water without vomiting. Apart from that he managed the whole thing very well without being scared or sad at all, but that ice show was for some reason traumatic.

Best wishes,
Amelie

[AmelieParticipant]

Hi Mavis,

Thanks for your good wishes, it means a lot!
Definitely John is in a much better condition before this sct than before the first when he had gone through the surgery in his back due to the loss of 2 vertebraes.

The 2 years which have passed have been absolutely wonderful. We have enjoyed every second, been laughing a lot and had a lot of great experiences. We have to be grateful for that.

Love
Amelie

[AmelieParticipant]

Hi Dai,

Good to hear thalidomide wasn't that bad… Of course my impression is influenced by the reports from the 60's and 70's.
We are planning another concert together and I am wondering if it is possible to conduct while being on thalidomide and corticosteroid, but I hope so!

John's stem cells were collected in only 4 hours so apparently they have been very fast and vivid. He has got the impression that he will be given 3 sct, but maybe he just misunderstood – he is not very good in asking the right questions. We will have to sort this out.

Best wishes,
Amelie

[AmelieParticipant]

Thank you Keith and Dai for the replies.

I just wonder why they would collect for 3 sct if they would never give the 3rd one…

The doctor won't give him Velcade again since he got it as preparation to the first sct. This time it will be thalidomide, we are a bit nervous how it would be. Did any of you have thalidomide?

Thanks a lot for the good wishes, and all the same to you!
Amelie

[AmelieParticipant]

Thanks a lot Keith, it is SO good to know that there IS a chance for a longer second remission. It means a lot to have a hope!

When they collected John's stem cells they got enough for 3 transplants. Has anyone heard of someone who got 3 transplants? I am just wondering because obviously I start to think about what they will do when he relapses next time.

Love
Amelie

[AmelieParticipant]

Thanks a lot.

Does anyone have some good links to info on 2nd sct?

[AmelieParticipant]

What happened to this thread? Suddenly I couldn't see it in the Gerenal forum. :-0

[Author]

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