This topic contains 26 replies, has 9 voices, and was last updated by 
DaiCro 12 years, 2 months ago.
Hi
Slim is being randomised for no on going drugs or Revlimid maintenance they have also added another option Revlimid with Zolinza from what I have read on the Myeloma Beacon it is a drug which stops the growth of protein in cells,I think it destroys protein.
On reading I have found trials going on with Zolinza which seem to be for active Myeloma patients,but cannot find any info concerning a maintenance,is any body on it on this site?????????
Will be looking into it a bit more but if anybody knows about this i would be grateful for some knowledge,when Slim signed the consent form did not ask any questions:-S 😛 .Love Eve
Hi Eve
I think they have added this to the options for the myeloma xi trial so that there are 3 routes now after sct on the intensive arm, ie no maintenance, revlimid only, or revlimid and vorinostat, (zolinza) but I'm not Absolutely sure. I think Ali might know more about this as she mentioned it sometime back as a potential scheme that her mum might be on.
I did try to read an article about it last week but have a chest infection at minute which is impairing my brain function so can't remember
A where I found it ( might be oncology times?)
B what it was about and how it works :-S
Having re- read what I've just written, I'm not sure how much sense I'm making so will stop!
Love Helen
Hi Eve
Helen is right
When my Mum saw the specialist nurse 2 weeks ago she told us Mum would be randomised at 3 months, to either no maintenance, revlimid only or vorinostat and revlimid, which is version 5 of the Myeloma 11 trial (she said it was very new) so of course I got home and googled it and like you couldnt really find anything about it being used for maintenance. I will keep looking and of course if I find anything out will share….
Hi Helen
Sorry to hear you have a chest infection, I think you felt it "brewing" for a few weeks. Hope you are feeling better soon 🙂
Love Ali xx
Hi Helen and Ali
Have found out some info on the Myeloma beacon,but not for maintenance,so asked at the hospital today,
Seems gathering up the people to sign for trials,once they have enough they will be randomised ,its new to trials,it breaks down protein in the cells,side effects and more information at a later date.
So we wait and see.Love Eve
Hi eve,
How's slim doing after his SCT?
Helen, sorry to hear you've got a chest infection. Its typical and this weather does not help, cold one minute and boiling the next. Really cold here tonight and it's almost heating on…..have we missed the summer LOL!
Ali, how's your mum getting on?.
Vicki
Hi Vicki
My Mums having a bit of bother at the moment. Shes still got a lot of acid in her stomach, which in turn has given her loads of ulcers in her mouth – she reckons about 30! They have tried her with 3 different types of antacid tablets but none are doing the trick. The acid wakes her up at night, then shes up for a few hours. Its such a shame as if it werent for this she would be really good. Her energy levels are a little better, she hasnt had any anti sickness tabs for 3 days or so, and her spirits would be better. She goes to see her consultant on Monday (brought forward on the advise of one of the nurses on here – thankyou!) so we shall wait and see if there is anything else to ease it. Shes been discharged from the hospital she had her SCT and is back to our local hospital now, her consultant is so friendly and easy to talk to so fingers crossed they will be able to bottom it! Im undecided if to do some meddling to see if shes (the consultant) had any cancellations or if they have an appointment before the weekend – I just hate to think of my Mum in pain:-(
Anyway, there endeth my moan:-)
Hows Colin?
Love Ali xx
Hi Everyone
Well Slim has been randomised for no treatment,which in some ways leaves me wanting to ask questions.???????
As Revlimid is now been accepted by the powers that be as a treatment.If Slim came off the trials could he have it as a maintenance treatment????
Is any one on here not on Trials but on Maintenance Treatment??????
Does any one know any results on people who have Maintenance treatment and those who do not.?????
Ellen if you are looking in,and have any in knowledge or answers,I would be grateful.:-)
To me this does seem like a bit of a guinea pig situation,!!!!
I could understand it if they had 3 people all with the same Myeloma plus at the exact same stage plus damage,that to me would seem a good equation,
But I want the best for Slim,and to me he has been unlucky,so it looks if we have to find another path. Love Eve
I don't quite understand Eve.
From what I do understand, Slim has had his SCT and is now in the slow process of recovery. Did you or do you expect him to receive a maintenance procedure by way of Revlimid, Thalidomide or some such other? Did your consultant indicate that there would be a maintenance regime?
Has there been some sort of setback or indication of an area of weakness that would indicate the need for maintenance? Because otherwise, the process of slow recovery under slim's own head of steam would be perfectly normal and maintenance would only become an option if he had already been earmarked as part of a trial or signs indicated a need,
I assume from your posts that slim is on a trial but has not been randomised for maintenance… in which case self-recovery is the order of the day… and to my way of thinking not a bad thing at all.8-)
Dai.
Hi Dai
I see were you are coming from Dai,and yes randomisation is the last part of the trial,which has been going on for some time,that is one of the reasons they have now introduced Zolinza which has been used for main stream chemo.
As you know information from America is saying a little and often to kill Protein,this is what Zolinza does.Revlimid now is mainstream for treatment so is also being used as a stand alone drug for maintenance.There must be some results as to people who do not have maintenance against people who do,??
I do think maintenance is the way to go.,but that is just my opinion.
Yes I agree it is self-recovery,but most people with Kappa Light Chain,are able to tell if they are still in remission by bloods plus kappa light chain results,this is no longer the case with Slim,so in Slims case it would be how he feels,pain to judge what is going on in his body,consultant words not mine,which does not exactly have be cheering from the roof tops!!
I would love to never have to set foot in a hospital again,I accept that people have this fear of the ugly beast rising it,s head again,but if there is a drug that will help to keep it away then this is the way to go.
My question is are there people out there not on trials who are on any maintenance drug????I think with all the knowledge that has been gained from the trials ,maintaining remission should be priority,not lets wait to see when it comes back. Love Eve
Hi Eve
Revlimid is only licensed to be used as 3 rd line treatment, ie thalidomide and velcade have each been tried and failed then revlimid is next. Revlimid is only available in use as first line treatment as part of the myeloma xi trial. It is also only available as maintenance in the trial, as is zolinza.
There was a French trial recently which used revlimid as maintenance and it was stopped because of the second cancer risk. This was a very small trial and a bigger one in America did not produce the same results. Myeloma xi is looking at ove 2000 patients if possible and 500 will try revlimid maintenance. Yes we are guinea pigs, but really we have little to lose and potentially a lot to gain as we are expected to have longer progression free survival if it works.
Revlimid will not be available as maintenance for some time yet even if it shows to work. It currently costs around £4000 per month to supply so it needs to be efficient for almost everybody if there is any chance of it becoming a regular part of the myeloma armoury. The draw back is that those of us on revlimid do not have it to use when we relapse, but by then I'm hoping pomalidomide or others will be mainstream by then. Because this is going to work for me for 20 years, I hope 🙂
Love Helen
Hi Ali
I had lots of yoghurt and I still took the anti sickness tablets for ages, has she had lansoprazole? And gaviscon, I took them all together! And lots of snacks between meals. It's worth trying everything again.
Good luck
Love Helen
Hi Helen
Thank you for more information,it all helps,I agree with you,we know it,s a trial,but cannot see it being with drawn if its working.
As you know Slim has already used Thalidomide and Velcade,and in general Is not in the best of health,with lungs and kidneys.So my way of thinking if any drug keeps Myeloma away it must be a good thing,He has nothing to loose as he will not have any treatment,at least with the start of the trials,everyone had treatment,of one kind or another.That,s why I consider,at this stage with two drugs available ,they have ADDED Zolinza to the trial,why not REMOVE no treatment from the trial??????.
So yes if I can find anyway of getting Slim a maintenance drug specially as when the Myeloma comes back,the chances are it will be well established as it now only shows with a BMB,all though I was told they no longer stage Myeloma,Slim was at stage 3,so I want to keep the beast away as long as possible.
Lets hope some were along the way more trials are available on a maintenance bases .Love Eve
Hi Eve,
Your questions about maintenance make a lot of sense. As Helen and Dai have pointed out, in the UK these questions will be addressed via a trial which is ongoing. I have never understood why trials from other countries – if conducted with a large enough sample of patients – should not be a valid way of advancing our knowledge. Obviously there would have to be major similarities with treatments here as well as patient characteristics. Because we don't have a dozen drugs to treat myeloma with, this shouldn't be so difficult.
I'm one of these people who reads papers from other countries which summarise findings of drug trials there. I can only give you a very crude summary of some of these. I don't want to quote at length from specific studies as I doubt that this is what you are looking for. My impression is that if Revlimid is taken as maintenance after a transplant, some studies suggest that the median length of remission can be twice as long as without the maintenance. This doesn't have to apply to a specific individual – we are talking statistics here. At the same time as these results were coming out, there were also reports that it was not clear whether this gave patients a survival advantage. Having a longer remission time doesn't necessarily mean you'll live longer, because when you relapse you might be able to go on the drug and benefit from it, whereas someone who has already been on it for a long time might no longer be as responsive to it. Lately I've read at least one report that suggests a potential survival benefit to maintenance as well. Sometimes a benefit such as this takes quite a while to become manifest. There are also some disadvantages to maintenance, such as side effects and high cost.
Because I've already relapsed once and had some traumatics events associated with the relapse, perhaps I'm more likely to wish for maintenance. However if I had severe side effects, I'm not sure whether my wishes wouldn't change.
At the moment though, unless we have insurance or are in a specific arm of a trial, we are unlikely to have maintenance. I'm sure that in the future it will be different.
By the way, since my relapse I've been on Thalidomide and Dex, and am now on Thalidomide alone. It appears that I reached a good response several months back, but I've continued to be given a small dose of Thalidomide as a kind of 'consolidation' treatment. My myeloma is difficult to track as I've become an extremely low secretor. I am not on a trial, but I do have insurance. I experience some fatigue and tingling/numbness in feet/hands but because my relapse was rather overwhelming( more than 70% plasma cells in bone marrow and shattered arm), I am pleased that I'm on something. I don't know how long this will continue as it will depend on my oncologist and on the insurance company, as well as whether my side effects become impossible to ignore.
Very best,
Eva
Hi Helen
I hope your chest/cough is a little better? and good on your daughter for doing the Great North Run – bless her, shes brave 13 miles, has she done alot of training?:-)
Mums been on several types of antacid (if thats what they are?!), including Lanzoprazole. Been to see the consultant today who said to retry the Lanzoprazole but for double the dose for 1/52, to see how that feels. Also been given a mouthwash and something else, so I hope the combination does some good. I will get her to try yoghurt, but she not a yoghurty person (I think she try anything though). Mums bloods are now all within normal range, which is great news.
Shes also abit down in the mouth (excuse the pun) about not being able to travel abroad yet. She has to wait until shes had her inoculations – so probably looking at next April. She can go in this country of course, but she says its not quite the same and I agree. I dont know why she turned me down when I gave her the chance of coming to Butlins with my brood lol.:-D
Any way, have a lovely weekend
Love Ali xx
Hi Eve
No you are right, those of us who are on it, potentially could be on it for a long time but if anything like the French trial starts to happen it could all be withdrawn on safety grounds. We just don't know. If Slim has not been drawn into the treatment arm then it is close to impossible that he would go on it as part of myeloma xi trial even if you asked, its all done by random selection otherwise there is the chance of selection bias and the trial could be declared null and void. but there may be other trials in the future and of course it is still there to try at relapse.
There was a trial of interferon a lot of years ago but not many responded well to it though some people still take it. There was also a trial with thalidomide and it too didn't really work for the majority so it is not used routinely, unless there is a very good reason. So far there are no drugs routinely given as maintenance, as treatment at relapse gives better quality of life in between times by being drug free. The disease is too unpredictable hence the race to find something which slows the progression and improves quality of life for as long as possible.
Love Helen
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