Just wanted to let everyone know that John is doing well after his 2nd sct which took place in August. It was much easier than first time and he feels better now than after the first since he has no skin troubles like last time. He is working full time. Hope this can bring some hope to those of you who are facing the 2nd sct.
Love Amelie

Thank you very much Terry – it is useful information indeed.
I wonder how the patients from abroad financed the treatment?

In Scandinavia we have a public health insurance, which is a good thing, but I don't think it is easy to make them pay for treatment abroad. 🙁

Cheers,
Amelie

Hi Dai,

That seems very interesting! Are you thinking of the Mayo Clinic? I heard they are rather restrictive with too much treatment.

How can it be that USA is so much further than the EU? Is it possible for a EU citizen to have treatment in the USA?

Best wishes,
Amelie

Hi everyone!

The day before yesterday I called Celgene, and yesterday the director called me on his cell phone from his holiday to answer my questions! Impressive service, I must say! 🙂

The reason why they have withdrawn the application for approval of Revlimid for maintenance and 1st line treatment is following. The trials with Revlimid…[Read more]

I also read news from myelomabeacon – it is well done and easy to understand. They do also have a community – but not as good as this one 😀

Hi Eva,

Thank you very much for sharing your experiences, it is very useful for us!

Did I understand you correctly, you don't take Thalidomide following a sct?

I will pass the info to John so he can ask his doctor.

Best luck to you too!
Amelie

Thank you Dai! It was very informative!

I know that Revlimid has been in use for relapsed patients for a while in Europe, but it was on January 4th 2011 Celgene sent the press release that they had applied for using Revlimed as maintenance and 1st line treatment. At that time I had already been reading on the myelomabeacon about the risk of…[Read more]

Thank you Vicki!
All the same good wishes to you and Colin!

Hi Eve,

I have tried to call Celgene today, but didn't get through. I will try again next week and keep you informed!

It seems strange to withdraw the application because of the increased risk from 2 to 7%. And already when they submitted the application everyone knew of that increase, so it cannont be the explanation – or not the full…[Read more]

Hi Dai,

It is just because I think the two years which have passed since his 1st sct went very quickly. 🙁
He got Velcade prior to his 1st sct, so I am afraid that is not an option again. I think they might give him Revlimid as one of the last drugs – however I would have prefered that he had it as maintenance.
What other drugs are…[Read more]

Thanks everyone for interesting and thoughtful replies!

I am of course quite nervous about the doctor's message to John on August 14th. If he is offered maintenance it will most likely be with thalidomide. Did anyone try that as maintenance?

Also I can't stop thinking about the future, since I have heard from several people that the…[Read more]

Hi Keith,

I totally agree with you and it seems that your doctor is a reasonable man!
If it is after your second relapse, I presume it is not give as a maintenance of a sct?

Best of health to you too!
Amelie

Dear Helen and Eve,

Thanks for your replies – it is a very important discussion.
John was never offered any trials. I gave him some articles on Revlimid maintenance which he showed to the doctor but he just replied that "new American research says that Revlimid is not good". No further explanation and no choice.

If I was the patient and I…[Read more]

Thank you Carol!
I hope your 1st sct will rest very long!
Love
Amelie

Hi Liz,

I wish Kev an easy second sct and quick recovery. All the best wishes to both of you.

Love
Amelie

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.…[Read more]

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

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

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

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…[Read more]