Hi,I’m new to this group.I had my right kidney removed at the beginning of March this year.I was wondering if anybody on the forum has taking part in the RAMPART clinical trial?thanks
Hi Jade the dog welcome hopefully I can help but I believe there are more people who also can give you a insight into the Rampart Trial.
I had a radical nephrectomy last September which was okay as keyhole was started but my consultant then had to make a decision which probably saved my life, please don't be scared as everyone's experience is different, and you have made the first step ( I have been monitoring and reading posts for almost 2 years before I posted.
My Rampart team have been FANTASTIC but it's not for everyone, please ask lots of questions write them down before hand, I asked my consultant for a car park pass something way under her payscale.
The Major benefit is that you are checked more often I think it means a extra CT scan during the first year always a bonus. Blood samples checked and monitored also a physical check on how you have recovered from the operation and treatment.
Like I say they monitor you also I get telephone consultation with my nurse, if you decide to take part read the information several times.
One of the main reasons I took part is the questionnaire I filled in before my first treatment, would you do this Trial if it saves one person from cancer (100%) it may be you or a family member or a total stranger.
Like I said please don't worry about it it has some good sides and like everything else not so good.
I can off the trial as the side effects were really making me feel like I did when I left hospital after the operation. My consultant was on holiday so I was seen by a doctor, I was then admitted to hospital for blood tests, which they were put down to the drug. On return from holiday I saw my consultant she prescribed a course of steroids which I should have been given straight away they were brilliant combating the effects but by then I (and my wife) had decided to finish my trial ( I had a course of 4 cycles) please don't let me put you off as if I had been given the steroids earlier I would still be on the trial.
Of you need any more information please ask as as we all have been through an similar experience and there are so fantastic people on here who we will never meet or see, but will support you every step of the way.
Stay positive & strong.
Mike
Hi Jade,
I too have had my right kidney removed three weks ago. I just read up on the RAMPART trial. Looks interesting. Lots of CT scans and observations/check ups would be quite appealing to me. I may consider this but i have to wait a bit longer.
Glad i saw this post. Are you considering it ?....Del.
Hi Del,I’m not sure I’m going to go ahead with the clinical trial to be honest.I had a meeting about it today and I’m just trying to weight up the pros and cons of it.It’s one of these things thaankfully we have a choice about wither we go ahead with it or not.It’s just a scary thought of getting the terrible side effects from the drugs.I know we are all different but it’s the uncertaintyit.I feel great 2 months after operation and the thought of becoming ill with the side effects of the trial scares me.I would certainly be interested in hearing from people who are on the trial
Hi Mike, what steroids were you on and how long was the course, if you don't mind me asking? Claire xX
Hi Jade
I've just read-up on the RAMPART adjuvant therapy trial. Very interesting! Although I'm not a nephrectomite, I am on similar immunology drugs (ipilimumab and nivolumab) which similarly target CTLA and PDL1. I totally concur that all the information you get pre-treatment is heavily focussed on the side effects and it is daunting. However, I haven't experienced any side effect. Although I should say that my body has responded so favourably to the treatment I've had too much subsequent inflammation thus impairing kidney function and delaying my next cycle. Hmmm! It's so encouraging that adjuvant trials are available for kidney cancer now as they have been a common treatment approach for other cancers for so long now. Good luck with whatever you choose and I hope you get a lot more people responding with their experiences of Rampart.
Hi Claire I had a course of steroids for a month (4 weeks from my 2 consultation) so it was dexamodone ( I will have to check) 2 tablets a day for 2 weeks & 1 tablet a day for 2 weeks.
Because they are giving you steroids they also prescribed a course of lansoposal as it helps with the side effects on your digestive system.
Honestly they we great as it helped my head space the side effects disappeared overnight....
But with all drugs they do not want you to get dependent on them.
Stay positive and safe.
Mike
Cool. The decision is yours. It is good to weigh up the pros and cons and i hope some more peope can help you with their experience of it.
Side effects are a funny thing in as much as some are barely affected and others are knocked sideways.
Good luck ...Del.
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