[AmelieParticipant]

John just had his 2nd sct and he will be discharged either tomorrow or the day after.

According to himself it was much easier than first time. Just wanted to share, if anyone else is facing the 2nd round.

🙂

[MariParticipant]

hi Amelie,

Thank you for this, Stephen is going in for his second SCT on 19th August. He has been in for his stem cell harvest today but was not able to go through with it as the stem cell levels in his blood were too low. He has been given plerixafor to mobilise the stem cells and he is going back in tomorrow.

I am pleased everything has gone so well for John and I hope he is soon back on his feet,

Mari xx

[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

[eveParticipant]

Hi Amelie

John is lucky to have enough stem cells for a second sct,and not have to go through another harvest,is any after treatment planned after sct. ??????

How long did John get from first sct to mm coming back?????

Am I correct you are based in Holland,do they have a criteria to follow or is John on trials,or is he treated more as an individual with individual needs'
Love Eve

[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 I don't know why, but Celgene has withdrawn its application for Revlimid in EU, so maybe that is the reason.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

[ElizellenParticipant]

Great news, Amelie!

Wishing him a speedy return to "normal"

Eliz
XX
X

[tomParticipant]

And same from I and i wish you both a very very long remision.

Love and Hugs to you both

Tom "Onwards and Upwards" xxx

[eveParticipant]

Hi Amelie
Well i hope John has a good recovery,and starts to feel better,I do not envy you a winter in Denmark,but I suppose as we are use to wet weather you are use to the snow and cold,my husband spent many a winter in Denmark,one of his hobbies,was blowing wholes in the ice and diving,use to be in the Marines!!

I was interested in your comments about Celegene and EU,over in England it is still going through trials,there is some dater being published,but not a lot,if you find out any more,I am interested?.Are there no trials going on in Denmark as I know they are world trials.Europe,s first line of treatment has been Velcade for some time.

I have noticed on here one or two people being given slightly different treatment as there first chemo,and I do not know if its trials or NICE relaxing the rules. Love Eve

[PerkymiteParticipant]

Hi Amelie, Nice to hear from you again. I wish John the best of luck for his 2nd SCT.

Kindest regards – Vasbyte

David

[DizzylizParticipant]

Hi Amelie,

Glad to johns doing well on his second sct, kev had his first sct April 2011, achieved CR in the sept 2011, and the end April this felt unwell and it was confirmed in may that he had relapsed. He's now on velcade/ dex and hopefully second sct? He also managed enough stem cells for two so wouldn't have to go through harvest again.

I hope John as a good recovery!

Take care both of you regards liz & kev xx

[AmelieParticipant]

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

[AmelieParticipant]

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

[AmelieParticipant]

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

[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]

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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