[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]

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

[VickiParticipant]

Hi Amelie,

Good for John and we hope all goes well for you both

Vicki and Colin

[AmelieParticipant]

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

[HelenParticipant]

Hi All
I'm not sure there is anything else I can add to this debate, as Eve has said, I am in a different group to Dai in that I have had Revlimid as a newly diagnosed patient.
Much of the research into these drugs is new, ongoing and not yet quantified, some people relapse quickly and there is no way of knowing yet who those people are. There are however a lot of people now at 4 years post SCT on revlimid maintenance , the longer they live the higher the chance of Second primaries just because they didn't relapse from the myeloma is they way I see it.
Yes it is a gamble, it may not benefit me to take part in this trial, but I am fully sure that it will help inform the treatment in the future. I do feel fully informed, I know the drug can be reduced, and it can be stopped too but I'm still prepared to give it a few years if I can.
Eve, don't feel bad about asking questions, you have every right to know what is happening, I ask them all the time! Sometimes though as professionals we can bombard patients with information and they don't always want it. In my neck of the woods we give written info out and a phone number for advice at any time it is never begrudged, informed patients are often easier to work with. Incidentally MMUK has a leaflet about myeloma xi but it doesn't talk about the second primary issue.
Love Helen

[DaiCroParticipant]

Hi Amelie,

When Calgene were granted their European licence the 7% risk was not known… that evidence was gathered during the first couple of years in use. The European licencees then asked for further evidence/trials from Calgene who decided instead to withdraw Revlimid as a partner drug and maintenance drug to concentrate on its values as a stand alone treatment (with the ubiquitous Dex of course). 😉

I think this makes sense. It coud be that Rev has conflict issues while working with an active chemotherapy and they may well carry out research in that field. I am not sure if there have been any issues as a maintenance drug but once again they withdrew Rev from that sector to concentrate on the main event.:-)

Once you reach the Revlimid treatment stage you know that it is the last big hope for a relatively long break from Myeloma. 2% to 7% is a very small risk when the median for the treatment is currently 30 months (2.5 years) and expanding all the time as data comes in from around the world for a relatively new drug.

Carfilzomib (to be traded as Kyprolis) has now been officially licensed by the USA F&DA (Food & Drug Agency) so it should be with us within the year. Kyprolis acts in the same way as Velcade, actively capping and killing Myeloma cells. It is being trialled around the world with Revlimid and Dexamethasone and that may be its role… bringing the Myeloma right down to allow Revlimid a strong base for extending our life spans… or it may be used as a stand alone. The current world trial, the 'Aspire' trial, should throw up some interesting results and it is my hope to continue on Rev & Dex until Kyprolis is licenced here.:-)

I believe in Revlimid and my concerns are with staying compatible with the drug rather than picking up a secondary cancer. If I should then so be it but in the meantime Revlimid will do for me big time.8-)

Dai.

[EvaParticipant]

Dear Amelie,
Hi – this is Eva from Scotland. I haven't used Thalidomide as maintenance, but I've had it after relapse as a treatment, together with dex. I've been on it for a year. Many patients get peripheral neuropathy( nerve damage), while on Thal. I've had tingling in my fingers which has moved to my toes. About a month ago, my feet felt 'dead', when I first got up. I would stumble around for a while as if my feet were asleep, and then, in time, I would begin to walk normally. I was concerned about this and started to read what I could do about peripheral neuropathy. I decided to follow a protocol recommended from the States. It involves Vit B, carnitine, iodine( sea kelp pills), magnesium and zinc, alpha lipoic acid( yes, I know, not as the same time as Velcade, but I'm not on Velcade at the moment), and VitE. It's been a hassle to swallow all these pills, but I must say that after a couple of weeks even though I still have tingling extremities, I stumble around a lot less when I get up. My feet are noticeably less numb. I find it almost difficult to believe that these supplements could have helped me so fast and I keep wondering whether it's all a coincidence. My dose of Thal was 200mg a day for about six months, and now 100mg a day for the last six months. My Thal is is not considered maintenance, but consolidation.

Another possible side effect of Thal if used longer term is blood clots, so I take a low dose aspirin ( 75mg) a day. I also have some water retention, some fatigue, and my heart beats, well, in a more laboured way. But in many ways I'm doing well on the Thalidomide.

Good luck with John's transplant.
Eva

[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]

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

[EvaParticipant]

Dear Amelie,
In the UK, I was not allowed to have Thalidomide maintenance after my transplant, or any kind of maintenance. This does not mean that maintenance is a bad idea. The prohibition could be due to a number of reasons and could be revoked in time. There are studies suggesting that maintenance certainly increases the length of time before a relapse.
When I relapsed, I was allowed to have Thal and dex. I answered your query because I now have experience of being on Thal for a year and some of the side effects might be similar to those experienced by someone who is taking Thal as maintenance. My induction therapy before the transplant wasThalidomide, Cyclophosphamide and Dexamethasone.
Best,
Eva

[eveParticipant]

Hi Everyone
Amilea in UK first line treatment for people not on trials use to be CTD then SCT or not,then no maintenance!!!!,do not know if its changed but trial people had a lot more options this is why trials are best.

Helen it is finding out information that is my problem,I do try to do as much research as possible,as nice as the nurses are they do not have a great deal of current info that does not effect there working,I had a grand example of lack of information this week,rang Kings up,because Slim is very slow recovering from SCT,told by them to speak to my specialised Myeloma nurse,told them never heard or seen one in 18 months.Kings got back to me with a name,we have ONE specialised Myeloma nurse between 3 hospitals,used to have 4 but because of cost now have one.

Once you enter the field of SCT,local hospitals are not in the same league.
So gathering information on possible future treatments and new treatments leaves me with very little options myeloma UK site or the general net.

This has been a very informative section,one of my reasons for asking is Slim will be coming up for randomisation if SCT has worked. Love Eve

[HelenParticipant]

Hi Eve
It is hard to believe that a place like kings does not have a designated trials nurse or liaison person to answer all your questions. You said I was in a privileged position here because I work in the hospital, but actually, I work in the university so whilst I understand the system I didn't know anyone in it until I got here, and I didn't tell them what I did for a while, i was so embarrassed that i'd ignored how ill I was. I do think that there are not many nurses who really understand myeloma though, only our nurse specialist seems to understand. But maybe we just have a better system here in the North East, which gets us back to the post code lottery bit I think.
This forum does inform us all quite a lot though.
Back to to thalidomide as maintenance, there was a trial a few years ago and there are a few people still on it as maintenance but overall it was pulled as there was no great evidence that it worked for the majority, the same went for interferon which they tried about 15 years ago. The maintenance trial is just that, revlimid has not been used as maintenance in newly diagnosed in europe, this is the first big trial. Until these results are published then i doubt Celgene will get marketing authorisation for use in newly diagnosed patients, or as maintenance. The results of it will be about 3-4 years away and will depend on how we all get on. I've not seen any interim data, it is supposed to be done annually but might not be in the public domain yet, maybe MMUK know and could tell us.
If you look at the numbers for Second primaries the other way round, there is a 90% chance of not developing them. Good odds when you look at the chance you might get progression free survival. Most occur after 2 years on Revlimid, and you will be carefully monitored if you are in the trial. You also have to remember that with MM currently only 17% of us get 10 years. If Slim does get the maintenance, you just have to decide on the information we have now, and go from there.
Hope he's doing ok still.
Love Helen

[eveParticipant]

Hi Helen
Just to save any mixup its not Kings I am talking about when I talk about 1 designated nurse.I am talking about the south east England corner,Margate,Canterbury and Ashford if the information I was given is correct they only now have ONE designated Myeloma Nurse,use to be 4 and because of cuts it,s down to one. Eve

[HelenParticipant]

Hi Eve
Yes I understand, but it's no less horrifying to hear that you have gone on all this time without an expert nurse to contact. Mine is available by phone or email. You are right in saying that I am spoilt, I'm only a mile from a tertiary centre, so it's only a 2 minute run to the experts, for which I'm very grateful now.
Love Helen

[eveParticipant]

Hi Helen
I think a lot is post code lottery,in one way we are lucky because we do have the trials in SEK.and there are lots of trials going on from here at the moment.As a cancer patient Slim has the usual 24 hr number to ring,They in turn ring doctor and everything goes from there.So no problem:-P

If you look in the carers section subject 100 days,it might explain it better.I know from previous post how bad SRK is to other counties,my attitude is at least we have the trials and many things need improving,the problem is management trying to make big cuts across the board and different departments fighting there corner,it is very political.I would love to be a fly on the wall in the doctors lounge,8-)

I found out from Kings the name of the Myeloma nurse and she is based in Margate.Eve

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