[AmelieParticipant]

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

[AmelieParticipant]

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

[AmelieParticipant]

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

[AmelieParticipant]

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The reason why they have withdrawn the application for approval of Revlimid for maintenance and 1st line treatment is following.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 have mainly focused on progression free survival and it is too early to say anything on overall survival, but EMA requires also evidence for improved overall survival.

I am glad that the slightly increased risk for secondary cancers were not the reason – that would really have been stupid. But well – it still means we cannot get it as easy as if it was approved 🙁 In my opinion they should approve it even if it doesn't improve the overall survival. One would rather prolong the life time in the beginning of the process where the general health might be stronger, than later when one is maybe anyway doesn't feeling well anymore. And most likely it does also improve overall survival.

Love
Amelie

[AmelieParticipant]

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 😀

[AmelieParticipant]

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

[AmelieParticipant]

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 secondary cancers, so I still think it is strange why they only NOW withdraw it. I don't get it.

I am glad to hear about Carfilzomib/Kyprolis – if it is hear within a year it might be in time for John.

Thanks again and all best wishes,
Amelie

[AmelieParticipant]

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

[AmelieParticipant]

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 explanation. I wonder if they are holding something back?

Love
Amelie

[AmelieParticipant]

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 available? Pomalidomide? Carfilzomib?

As you know John is not my husband, but a close friend and kind of "2nd father", so he never experiences me when I am down. I am always in a good mood when we are together, and I raised almost £ 9,000 so we could realize some projects very important to both of us – which we will repeat when he is in remission again.

Thanks again,
Amelie

[AmelieParticipant]

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 remission after 2nd sct may be short. What is to expect after 2nd relapse? Only drugs? And is it possible to get in remission with them? Or is it just downwards? OMG these nights with all the thoughts :'-(

[AmelieParticipant]

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

[AmelieParticipant]

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 was given the choice I would definitely try the Revlimid maintenance. It is different how the patients tolerate it, but if someone suffers from too many side effects it could just be stopped. Of course a second cancer would be terrible, but since the patient is already observed, it would most likely be discovered on a very early stage.

Love
Amelie

[AmelieParticipant]

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

[AmelieParticipant]

Hi Liz,

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

Love
Amelie

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