This topic contains 13 replies, has 9 voices, and was last updated by 
Babs 11 years, 6 months ago.
Hi everyone
Back tracking a little bit for those who do not know… Mum diagnosed Nov 11 aged 57. Myeloma 11 trial, RCD 6 cycles, SCT Aug 12. Randomised to Revlimid/Vorinostat maintenance commenced Dec 12. Mum on the whole has coped, and was prepared to cope with the side effects she was experiencing. Mainly tummy troubles and fatigue. All bloods have remained within range and she is in remission.
Well, I went with my Mum yesterday to her monthly appointment with her Consultant. Expecting to pick up the next carrier bag full of Revlimid and Vorinostat. Spanner in the works time… the risk of Revlimid increasing the chance of secondary cancers has been highlighted to the Haematology team (although I new this already, I read it on here somewhere). Mum was asked if she wished to pull out of the trial. When I asked her lovely Consultant what she would do if it were her Mum (cruel that one, I know)she said she would advise her not to take it.
The risk is thought to be 1 in 100 for those not on Revlimid.
3 in 100 for those who are.
We have another appointment next Friday so Mum could discuss it with my Dad and have a little time to think.
Has anyone else been given the same choice?
I would greatly value your opinion.
Tried to tell my Mum the benefits of no medication and I think she will decide not to go the maintenance route, but blooming heck, just as you think things are moving quite smoothly the rollercoaster begins again.
Thanks for "listening" as usual.
I hope you all have a lovely weekend.
Love Ali x
Ali,
Thanks for this post – very interesting as I am currently waiting for a call from the Haematology team to go and collect my Mum's next round of Revlimid (with cyclo and dex). They do seem to be taking their time with ordering it – she should have started it on Wednesday this week and I wonder if it is something to do with the information in your email? I guess I will wait and see next week!
All the best,
Jillx
Hi Ali, well i am off to clinic on monday with my Mum as she too is on the revlimid trial and i will quiz on this too as Mum needs to make and informed choice, i too read this recently, my Mum is jaundiced at the moment and clearly something is going on maybe a drug reaction but they are going to ultrasound her abdomen, gosh know what you mean about a roller coaster!! nothing is simple with this illness, 3 hours in clinic today and the same on monday!! and poor Mum is so fatigued its a huge effort for her to go, i will let you know what they say at the hospital to my Mum, best wishes San.
Hi Jill and San
Im not sure if the risk is just for maintenance treatment, as I suppose potentially one could be taking it for a longer period of time?
Worth the question though.
San, isnt it awful sitting and waiting around in hospitals, its like torture, especially when you are really not feeling up to it. I hope they get to the bottom of your Mums jaundice soon.
Love Ali x
I am 68 years age, diagnosed in march 2012 , immediately went onto myeloma XI trial, had my SCT this February, had my three month appointment last Thursday. All the blood counts were good, my para protein read 2.2, so am considered to be in partial remission. At the clinic I had a long conversation with the trials nurse about revlimid and veronistat, he was not keen on me going onto the maintenance drugs, reading what you have discovered I now understand why he was not keen. So at the moment I am not taking any maintenance drugs at all.
During my discussion he hinted that some patients who are on the maintenance drugs seem more prone to infections and therefor hospital stays as well as fatigue and tummy troubles.
Hope I have made the right decision and I hope your mum makes the right decision to suit her.
Regards
Tony F
Hi there Ali et Al
Well, as you know I've been there got t shirt etc.
San ( weather fab in Cornwall, it's always like that when I go there:-)) and Jill, I think Ali is right that in frontline therapy it is different to maintenance, but do check when you go. Your mums would have thalidomide (which is an earlier version of Revlimid and can be more toxic for some people) or Revlimid and it is only for a few months. The trial is to see if it is well tolerated and effective.
As for maintenance?… There is no right answer. I took Revlimid as maintenance for 17 months. I will never know how effective it was. At the end of the trial we will only know what the group responses were, not the individual ones. I have been ill with it, I know that now as I've been off it for a month, I have less tummy troubles and fatigue now but only slightly, and I did have lots of infections. I might have had them anyway! I might have have had a better quality of life without it, but I might have had more time before relapse with it, and to be honest I would try anything if I thought it would keep me here longer.
I have recently read an article in myeloma beacon about the current testing of Revlimid and the jury is still out but there is still evidence that Revlimid is effective in preventing progression of the disease. I have put the link here.
It is a personal choice. We have myeloma. The risk of secondary cancers anyway is high. Life expectancy for us is around 5 -7 years on average still. Which is not great.
Love Helen
Hi Ali and you all
Well I had CTD then onto SCT and now sit here in remission so I cant help here Ali apart from saying, I have done and will do anything to kick this MM into remission, I also remember at the start of the MM discussions that I was told I Might Just Might get a secondary cancer 🙁 But I and my young bride Took it on the chin and said throw at it what you can to get rid of it? :-/
And so far Its proved the correct move, so I will say its all about our own strengths and how we will cope with the treatment, so if your Mums Happy am Happy 😎
I wish your Mum well in this on going road to remission.
Love Tom Onwards and Upwards xxx
Hi Helen, glad that you had good weather, its always sunny in cornwall ha! hope that you feel better after your hol, San x
Hi San
Yes thank you, even have a sun tan! do your mean its not always sunny? The friends we stayed with are going to invite me back soon apparently because I always get sunny weather in Cornwall! 🙂 if only it were nearer Northumberland ! Love Helen
Hi Ali, yes it is torture for our Mums waiting around at clinic, this is not a kind illness and every day something seems to crop up, sadly i am waiting for a bit of light at the end of this tunnel for Mum but so far its one step forward and two back! still not sure why the jaundice, bloods have been taken and we will see on monday when we see the consultant, a bit worrying not knowing and guess that more chemo is out for the time being. Hope that your Mum is ok send her my best take care San x
Well Helen, i have heard that its not always sunny but i don't believe it!, we love Sennen and have been lucky when we go too, its a smashing county, but last week here in Devon it was lovely too so can't complain, wishing you a super warm summer in Northumberland, take care, love San
Hi Everyone
On reading all comments about maintenance ,I would like to add mine.
As people know Slim only got six months after 100 daysSCT .he was randomised. No maintenance . He had complete remission ,I do wonder if he had maintenance would he have got longer????.his general health,cough colds infection is excellent,and his bloods have proven this !!!,so to all accounts we would not have known the Myeloma had returned!!!
When we found Myeloma had returned and is 10 percent in bones,so just going out of remission ,I asked and would have liked him to be given Velcade again,as it stood at 10 Percent!!!. Instead full exRay plus MRI done and another BMB done on the 7 May. We await results will see consultant 24 May. 5 months with no treatment .
We are expecting a high percentage in bones as Slims tiredness fatigue plus kidney functions are showing change!!!
My Question is have the TRIALS become more important than the individual patient???????
Love Eve.
Hi Ali,
Hope your mum is ok….has she been on the cruise yet? Lost track!. Colin and I read early on the issues of revlimid and the secondary cancers…..it was a concern but during maintenance treatment we were just glad it seemed to be doing the trick!. However when it got to maintenance treatment Colin had other ideas about taking it as maintenance. He felt that the quality of life would be reduced as it used to knock him right down….so he elected not to and the consultant agreed. In terms of the trial team they were ok, and Colin still gives the samples required as part of the trials just not taking the maintenance drug!
Can't really say if that the right or wrong decision but it was the right one for Colin:-)
Best of luck and hope you and mum are all ok 🙂
Vicki and Colin x
Hi Ali and you all,
I had a scare whilst still under Kings after my transplant so was not discharged from them till well after my 100 days, then my local hospital took me back and never mentioned any maintenance. So I continued four weekly bloods and assessments and Zometa till one day one of the trials nurses saw me in the waiting room and said " when did you last do a bench jones test?"the dreaded 24 hour urine test ! ages ago I said, well next thing I am called in and randomised to Revlimid and Zorinistat,After 6 weeks of taking it I was very ill , admitted to hosp through A&E with suspected heart attack. Excellant treatment and great many tests done and after 2 days there and no visit by the trials team and having shown the Dr in charge the paperwork of my drugs, he was happy it was side effect and sent me home. As I had been told I could stop the drugs at any time and just one week away from our christmas break in a hotel we made the decision to stop them all. I was up till starting the drugs feeling very well indeed, We saw the consultant in the new year and he agreed for me to just go back on the revlimid and see how I tollerated that alone,now he wants me to try the Zorinistat again but after my small holiday which was 6 weeks exactly after I saw him!! Now I am thinking like you all what shall I do?
It is bad enough having this myeloma but I find sometimes too much information is just as bad as not enough.
PS. my bloods have been steadily reducing since being on the revlimid but this is normal I understand.
Love Babs
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