[BabsParticipant]

I am at day 16 of revlimid and vorinostat and last night woke up with very sore lungs,today they have just become more painful,I have had a horrible dry cough for several weeks too, can anyone tell me if they had these symptoms when starting these maintenance drugs ?
Thank You
Babs

[tomParticipant]

Hi Bab's

Am sorry I cant help on this one but just wanted to say you could phone/email the Nurse on this site for info, its better to be safe.

Good Luck.

Love Tom "Onwards and upwards" xxx

[PerkymiteParticipant]

Yes I think Tom is right Babs, I have never heard of vorinostat.

Kind regards – vasbyte

David

[2grahamParticipant]

Babs
Sorry to hear you are suffering side-effects. I too am on Revlimid and Vorinostat, everything okay at the moment but I am only on day 5 of my maintenance regime so just a couple of weeks behind you. Handy to know someone on the same treatment plan and at a similar stage though, I'll let you know if and when owt goes wrong with me.
Graham

[BabsParticipant]

Hi Guys,
Thank you for your replys.
Tom and David,
Vorinostat is the very latest drug on the myeloma xi trial.
Sorry for delay in replying but the pains got so bad my husband decided a trip to A&E was due, we decided to go to the hospital where I see my consultant and where the trial team are based.
we arrived at 6.45 in the morning, to be given what I can only was the very best and quickest treatment ever,they suspected either blood clot, chest infection or phneumonia !!!(all were impressed when I took out my bag containing ALL my medication, I explained that's because I have been attending hospitals so much since diagnosis and we are always asked to take all medication with us )Anyway canula in, bloods taken and antibiotics started, two monitors, one for all my vital signs then ECG to check heart, then off for x ray , and then 2 ct scans and then ultra sound of my abdomen, all before 10 am !
Anyway then admitted to CDU and then decided to keep me in over night but the antibiotics seemed to take away the pain, but they were concerned as my liver results were abnormal.The duty dr spoke to the trials team who said it was usual side effect of the revlimid, and yes when I gave the dr the paper out of the drug packet he read it fully,all listed there including the abnormal liver results.
The trials team said I should continue to take the revlimid as have only 3 more days then week off them and they then due to review me on 14th Dec.
So Graham ,
this may happen to you but I hope not, but the Dr I saw said we did the right thing going to A&E and to do it again in these cases.
Must admit am having second thoughts about doing this trial but then remember how with us doing these it has helped to get to the early diagnosis which means a lot of people have myeloma without the damage it does if not caught early enough.
Anyway feeling a lot better now, still believe I am very lucky as this is my first admission to hospital since my STC in March!
The young Dr who discharged me said how on the CT scan he could see lots of myeloma cell damage to my skeleton, he actually sounded shocked, obviously first time he has seen the damage myeloma does!
(No surprise for us myeloma sufferers though.)
Babs

[mhnevillParticipant]

Hi Babs

I want to salute you and all those who take part in these Trials. You do such stirling work for all of us. I just hope that, following on all the horific side effects, that your drug combination does bring on a long remission for you.

Lots of love.

Mavis x

[BabsParticipant]

Hi Mavis,
I think rightly or wrongly If it was not for all the many MM sufferers who had not took part in EARLIER trials we would not have so many people being diagnosed early before the damage caused by this cancer, that is why I am doing the trials because I hope one day they can get to early diagnosis and stop it in its tracks.!
I could not manage my life without this site I must say, I have met only two other people in my local hospice whilst I was there doing a rest and restore course,but have not met them since though so it can be a lonely illness.
When I attend my local consultant appointments the waiting room is usually full of older men, so much so that it has been commented on my being younger and female ! Since finding this site I am amazed just how younger people and how many other women have MM too.
I am off this afternoon to my local hospital to have my 4 weekly Zometa and collect the next 4 weeks of drugs.
I am feeling the best I have for a long time and Wednesday managed to get through a wedding celebration which started at 11 am and I saw it through to the end at 12.30 am Thursday morning!( I have learnt how much dancing I can do ,resting between and which dances to avoid) AND I did not spend yesterday laid up resting as I have had too since my diagnosis, even managed to drive to collect one friend and we went to another for tea and cakes.
Onwards and Upwards as dear Tom says !
Love Babs

[AliParticipant]

Hi Babs

It's so lovely to hear you are feeling so well at long last. My mum started her vorinostat and revlimid on Friday. She felt a.little sick after the vorinostat, do you? Wonder if it will subside when she gets used to them? .

Sorry its short, but I'm using my phone and not the laptop, its,a pain:-

Love Ali x

[2grahamParticipant]

Hi Babs
Day 19 and no adverse side-effects yet. Perhaps you were just unlucky and your next cycle will be better.
Graham

[BabsParticipant]

Hi Ali and Graham,
Day 1 Saturday of 2nd course ,took the capsules in the evening and about 3 hours later was very sick, came on very suddenly! sick every hour through the night except 5 am, last time was 6 am, weak all day Sunday and took capsules after dinner in the evening, about 3 hours later was sick again ! only the once this time thankfully !
Monday morning rang the trials nurse who suspects novovirus! told me to miss tonights capsules and take them again tomorrow as usual and see what happens!
Did your mum Ali or your self Graham get anti sickness tablets issued as part of your trial, my nurse asked me which I had been given and was surprised when I said I had not been given any!
Love Babs x

[tomParticipant]

Hi Babs
I was give anti sick tabs during my CTD and SCT and used them for over a month post SCT.

Good Luck and get some anti sick tabs.

Love Tom Onwards and Upwards xxx

[AliParticipant]

Hi Babs

Oh no! There's a lot of d&v going about around our way. I work in an NHS outpatient department and loads of patients are cancelling. I do hope that's all it is. Yes, mum was issued with domperidone. She had to take some on day 2, she said all of a sudden she felt nauseous. Been ok since though.

Hi Graham

It's encouraging to hear you have no adverse effects. My mum is apprehensive about the vorinostat, she had revlimid as her initial treatment so she's got her head around that one, I think its the unknown.

Love Ali x

[BabsParticipant]

Hi Ali, Graham and Tom,
Yes I too had anti sickness pills with all my CTD and SCT which I took religiously as hate being sick and they helped no end, I did have some left over from earlier this year and still in date so tried to take one but nausea came on too fast!
As for having novovirus, I looked it up on the web and concluded that I would be much more ill than I was,(although the clinical trials nurse said you can get it with just sickness ),after each bout of sickness I was able to sleep and just woke up to be ill then back to sleep, no normal after sickness problems, no sweating or fever, but just to be safe and sure I have been housebound and very aware of my handwashing etc,bleaching like mad too.
Just taken my asprin tonight so we will just wait and see!.
Love Babs x

[eveParticipant]

Hi Babs

my husband had his SCT,on X1 trials,then was randomised for no treatment,at first,with the knowledge of no treatment follow up,it felt very strange,but now we are looking at it as a bonus after 2 years of constant treatment,he attends hospital once every 2 months for Zometa,and at the moment consultant once every 2 months,this gives us a good break,and if we want to go away,they are flexable with the appointments,so for us it has worked out well,it just remains to be seen,what the future holds.

As for damage to the bone structure,Zometa will only do so much,we just accept with so much damage to the bones,medication is a must,i consider its not a big thing,when you look at the big picture,and anything that helps with the bone pain is a must.Eve

[PerkymiteParticipant]

I have just caught up with this post and I like Mavis take my hat off to people who go on the trials. There would be no progression if we all opted out and as such these "trialers" have giving unnumbered people a longer and probably happier life. I am too old for any trials but would have taken that course if it had been offered.

With regard to the old bones, I take Loron, Zometas equivalent I think, I have been taking two tablets every day since July 2009. I was warned that I must not put my bones at risk by doing anything that involved pounding, such as running. On Christmas Day I had a nasty fall. Went to Casualty and had an ex-ray only to be told my bones are fine ? badly torn muscles only. So it must be doing something 😀

Kindest regards – vasbyte

David

[Author]

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