[CarolBradley1Participant]

Hi
Thank you so much for taking the time to let us know. I´m not in that position yet as my first is still holding out but it had been worrying me about what it might be like when or if I have to have another.
Hope all goes well for you both.
Love Carol xx

[HelenParticipant]

Hi Amelie
The Revlimid marketing application has been pulled from Europe as the Authorities asked for " more mature data " to be presented before a decision could be made on its safety. Ergo more research needs to be done. As part of the myeloma xi trial, revlimid is used as primary treatment and as maintenance, this is still the only way it can be used in Europe except as third line therapy. The results of the trial are going to be some time away yet. As far as I am concerned, being part of the trial I considered to be my 'best option' as the prognosis in myeloma is still 'not brilliant' in the grand scheme of things. I feel that the risk of second cancer versus longer progression free survival an even sort of risk. Obviously everyone has to make their own choice about it.
Meantime I do hope Johns 2nd SCT recovery goes smoothly and trouble free.
Love Helen

[eveParticipant]

Hi Helen
Well to some extent I would agree with your outlook concerning second cancer,but I also think it depends on what second cancers are rearing there ugly head,for example percentage wise are they blood cancers,they must have some dater on it ??????
If for example it was causing (PCL) using that as an example!!! as we know of at least one on here plus a suspected one!!!,then no it has to be looked into.As first rule do no harm.
So yes I agree you take part in trials for help and to help,but I do think they could be more upfront with information. Love Eve

[AmelieParticipant]

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

[KeithH17Participant]

Hi Amelie,I started on Rev 3 weeks ago after my 2nd relapse and did mention the issue of 2nd cancers which I had read about. He was very emphatic that the risk of this was far outweighed by the benefits difference being a rise from 2%-7% which is hardly earth shattering. Let's be honest when you have MM you'll try anything,I know I will.

Take care and best of health.

Keith.

[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

[KeithH17Participant]

Hi Amelie, I relapsed from my 2nd sct after 8 months and was going to be put on a trial of Rev/Dex but it had already been closed so I was put onto the same treatment in order to get the PP's down which were rocketing up.
I was also showing 35% MM activity in the Marrow and the Consultant said this was only going to get much worse unless treatment was started. I never did feel as well after my 2nd sct as I did after my first and thought the remission would not last. I had a plamacytoma on the front of my head which disappeared after 10 days of Rev which proved the treatment was having the desired effect. I will continue with this for as long as it works and hopefully by then something else will be available to continue fighting this horrible disease. It's all about buying time and as I've already said I'll grasp onto anything that will keep me going. The way I see it they put the facts in front of us side effects and all and if there is a treatment that could help and we are happy to try it then we should be offered the chance to continue living. I have to admit I am very lucky to have an excellent Trust Hospital which is why I am very concerned about the future changes that will come along with the health service reforms. If it works leave it alone.

Take care.

Keith.

[HelenParticipant]

Hi Eve and Keith and Amelie
I have been only treated with revlimid, cyclophosphamide and dexamethasone as primary induction, part of the myeloma xi trial which is comparing current best treatment with new ones. I spent 5 days deciding which would be my best option in that raw stage between diagnosis and treatment start. I cried a lot, it was a hard decision, I am a clinical trials research nurse by profession, and I can tell you I struggled with the choice. However, the evidence I have read made me choose the trial, even with the added risk of second cancers, all of which seem to be blood or skin based, as Keith says the difference between 2 and 7 per cent is very small, and with myeloma there is always a 2% chance we will develop second primaries anyway.
However it was my choice and within 2 months of revlimid treatment commencing, I was in complete remission, at 3 months post SCT I was again randomised to the maintenance arm of the trial where I received Revlimid again. It's not without troublesome side effects (as we know Keith and Dai, as we discuss things of such a personal nature that no one should really know about eh 😉 ) if I carry on with tummy trouble the dose will be reduced and possibly stopped, but I've not got any thinner recently so maybe I'm ok.
However, the trials are stringently monitored, we are inspected to the point of persecution and I am quite glad to be in it even if I'm unlucky enough to be part of the 7%. I was asked how i felt about the maintenance and i could honestly say i'd have felt cheated if id not been able to give it a try, even if i felt rotten on it again. My feeling is that I need to be here, I would put up with anything to stay a bit longer. I can remember nursing patients 40, 30 and 20 years ago with myeloma, life expectancy has increased slowly over the years but still is measured in single figures for the majority. Only by bringing new drugs into the frame will we see the situation change, I hope I am here to see it.
BUT it always has to be our informed choice.

I'm sorry I seem to have got on my soap box again, hope I didn't upset anyone:-)
Love Helen

[eveParticipant]

Hi Everyone
Well I for one am glad that this subject is being openly talked about.
First may i say Amelia on Myeloma Trials which you should find info on this site,after SCT you are randomly picked for maintenance or no maintenance,Helen was luck to be picked.
Helen we need more people like you to get on your soap box,because with it comes information,and as a trials nurse yourself you know how much information the patient has or not has.;-)
I just find it strange how someone can make an assessment of Slim or me and decide if I do not ask ?,how much info they will give me ?

I have to be careful here myself as my soap box is coming out:-P

I wonder how they would have treated you if you were not in a privilege position. no offence ment

What I was trying to say,yes to trials,but if results are now showing a rise in blood cancers we should be informed as the goal post have changed,and it is your right to question,do you still want to be on trials, you have to look for that information,this might be a team effort,but sometimes they do not include the patient. Love Eve

[KeithH17Participant]

Spot on Eve, the patient must always come first and be included in all discussions. What really puzzles me is the vast difference of opinion when it comes to the medical profession something I've said on here before. Why are you told no to Revlimid yet my Consultant said it was they best route to take? Come on we don't have too many options to call on so let's get on treating all patients equally.

Keith.

[DaiCroParticipant]

Hi Keith,

You are of course completely right… all MMers deserve the right to be treated equally but we know for certain that that is most definitely not the case. It is not a deliberate course of action, I know that. It is, in most cases a result of an unfair post-code lottery. Those authorities with higher funding tend to produce hospitals with either dedicated haematology units or hospitals with excellent haematology medics. Those with poor funding tend to produce hospitals with limited facilities and fewer haematology medics with no MM specialists. Some of us are highly fortunate to live in authorities with either dedicated units or a mix of local hospitals for lesser treatments and area hospitals for the more important stuff. Some of us have such facilities on our doorsteps and others have to travel great distances.

Personally there was no choice as far as I was concerned… I wanted to live, so I moved from my much loved West Wales to Nottingham, which has some of the best medics and best facilities in Europe. But that's me. I miss Fishguard desperately but I know what I needed to do so I did it.

Hi All,

As for Revlimid, the manufacturing company pulled the plug on Revlimid as a frontline and maintenance treatment in Europe because of the 2nd cancer queries and the call for further trials. Of primary importance to me is does it work and what is the median? The risk factors are of secondary importance, because I am pretty sure that the initial trials could not have produced anything of great risk otherwise it would never have been sanctioned.

Celgene has done the right thing as far as I am concerned. By only providing Revlimid as a 'Stand Alone' treatment (yes, I appreciate that the ubiquitous but proven Dexamethasone is its partner… so it is not truly alone)… but it has no other major partners such as a chemotherapy or Thalidomide etcetera.

As Rev & Dex as a primary treatment is easier to monitor and provide data. 2% is the average chance of secondary cancers across the board… Revlimid has shown up to 7% in all its guises… so let's see what it shows on its own. I do not consider 7% a prohibitive risk any way, not when it could provide me with the chance of a relatively long break from the ravages of MM. It should be remembered that when you get to this stage the other currently available treatments are relatively short term options… with the next step after them end of life procedures. So a 7% chance of a secondary cancer against a current median of 30 months (and expanding) is an absolute no brainer.

Dai.

[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 :'-(

[DaiCroParticipant]

Hi Amelie,

John may get quite a good remission from his SCT and after that there is Velcade, if he hasn't already had it, Revlimid and the a number of now trialled but by then licensed shorter term treatments which will take him into end of life procedures… but that could be years to come. 😎

Reconcile yourself to the fact that MM is terminal but John could have along time yet and instead of sleepless nights think of the ways in which you can support him and make his time more loving and creative. Be brave and make yourself central to his life.:-)

Dai.

[eveParticipant]

Hi Everyone

Well all this is thought provoking,even in the middle of the night or in my case early in the morning:-P
I think you have two different levels of people with Myeloma here!!!!
Dia can I put you in the latter group of a very limited life span!!!{ no offence is intended}:-)
Then Helen who has taken CRD as first line treatment.

The question in my way of thinking is how many people who have had CRD as first line of treatment have gone on to have another cancer.This 2% to 7% are these figures just on these people?????Do you believe these figures? Do you think as a line of treatment it would stop because of such small %.?

As for you Dia I understand your position and say you are the ideal person at your stage to try any drug that is available.:-S

I would like to know more. Love Eve

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