Having had two ascitec drains over the last month (approx 8 litres removed from my distended tummy each time), I have now joined the new Octova trial at the Glasgow Beatson. The Phase II randomised three arm trial is open to those who are platinum resistant with BRCA/genetic mutations and provides the opportunity to access olaparib, and a new drug cedinarib. Two arms allow trialling of the PARP inhibitors, and the other arm is standard weekly Taxol (with a sweetner of access to Olaparib if your cancer gets worse...). Guess which arm I was selected for? Hey ho.
So now I am travelling 150 miles every week for a treatment I could have at my local hospital which is 20 mins walk away.
I started the trial yesterday, having had an unscheduled overnight stay for the drain at the Beatson. I had a sixth sense I would be allocated the Taxol in any case, and my rational side tells me that it's a win/win option as there is no proof that PARP inhibitors work for platinum resistant patients - yet. I am v tired as the hospital ward was noisy with a disturbed night, and I had a bit of a weep when I was informed by a junior doctor (prior to seeing the Prof in charge of the trial) that I was "going for chemo this afternoon." I put two and two together.
So here we go again. The one chemo treatment I promised myself in 2014 I'd never take again. I'll need those BIG pants BIG style this year.
Caroline x
*for those not in the UK or not watching day-time TV (it comes to us all...), Pointless is a TV gameshow where contestants need to select the most obscure/unlikely correct answer to a question in order to win a small-ish cash prize
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Oh, Caroline, life with oc. is really a lottery. you just don't know what is going to happen next, and as for the 150 mile trip every week, What a bind, especially having hospital so close to you where you could have had the treatment you are going to get if you weren't on the trial !! Well lets hope the big pants stay firmly pulled up and you get through this. Thinking of you. xxx Jeanette
M, why can't they give you the trial treatment/drug in hospital closest to your home? That is done here in Seattle, WA. The doc arranges for your treatment at your regular hospital. I can also get my port flushed at hospital closest to my home.
Thanks Tesla. In fact, I was going to raise this question with the Prof yesterday but he was in usual whirlwind mode and I was so knackered I couldn't push it. I already have my bloods done prior with my local GP, so this seemed the next logical question. The only potential issue with this of course is that I won't have access to him and the trial team over at my local hospital...Good thinking though!
Can't the prof recommend you have your taxol at your local hospital with the proviso that if any issues arise you or the team at your local hospital can contact his team for advice? As we all know, the fatigue is a big part of chemo so as you progress the travel time is going to take its toll on you and reduce your strength to deal with the taxol. I did the ICON8 trial in 2014, I was on the arm of the trial which was weekly taxol and three weekly carbo, because I'd not been put on the control arm I had to go to Christies each week but my understanding was (correct me if I'm wrong here) that I could have had the three weekly double dose nearer to home. Might be worth asking, worst case they say no. Hope you cope well with the taxol wherever you have it . Big hugs and love ❤️Xx Jane
Yes of course I could Spes however for me it's been a bit of a long haul to get accepted onto a trial and I was initially so pleased. I also considered a bit of a dodgy underhand approach where if I was selected to do Taxol, i would either a) pull out or b) hold the Prof to ransom and say unless I was offered the PARP inhibitors I woudn't go ahead. I have to say that on the commitment front, that didn't sit particularly well with me. I have now accepted that this option ensures that I'll never have that "I wish I had..." moment in the future. I never want to have any regrets about treatments and this way I cover both the standard treatment and the PARP inhibitor option. Hope that makes sense x
But dropping out of a trial is giving them information about what women will tolerate. That's very useful in medical research. Think of all those half finished antibiotics. Wasted.
Yes - there were two other patients in the ward who definitely needed more support from the nurses. They rang their buzzers several times, and both wanted to use the loo two times during the night and the heavy banging loo door was right next to my bed. Typical. All smiles in the morning from me though - as you never know what's round the corner for your own health (if you know what I mean!).
I remember after my operation when I was shown to my bed, on a high floor next to a large window with a great view of the Post Office Tower and thinking it's like being in an hotel. I'd never spent even one night in a hospital before and was actually quite excited by the whole experience, oh, how soon was I disillusioned....
In a week I should find out if my tumour expresses folate receptor alpha protein (how these phrases now trip of my tongue, mostly without a real clue what they mean). If it does, I'll probably be going on a new trial, first in man, but I'm rather hoping at least a few have already been on it. Shows great promise in the lab for ovarian cancer as our tumours tend to express a lot of this folate receptor alpha protein......so my fingers are crossed!
I have no idea of what the folate receptor stuff is (!) however can understand your reluctance to be first on the trial. I am one of 3 hardy souls so far (and the first in Scotland). My family seemed to think this warranted some kind of celebration ( like first prize). Not totally sure I agree either! All the best for your update x
I worked in health promotion for 25 years trying to persuade people to write so it's understandable to non-health care people. The worst example I saw was a letter to invite women for cervical screening that mentioned dyskariosis.
Thanks Harpist. I've just explained to January2016/Helen that when I found out that I was the first on this new trial in Scotland, everyone seemed to expect me to celebrate - like winning first prize! Not sure I agree...! X
You will just have to award yourself your own trophies! I have three old 'Race for Life' medals from when I ran/walked in memory of my mum and another friend years ago. We dug them out and used them for our own personal award ceremony at the end of my chemo. Got to keep the sense of humour
I'd do a trial if there was one for me. But like cars, I never buy new. You are brave to consider it but women say you are looked after very well. Have you told them about the noise and not sleeping? And I don't mean so they give you sleeping pills. If they want to keep you in, they should be prepared to remove these barriers.
Yes I agree with your thoughts about care during the trial - if anything you're measured too much! I also think when I speak to the research nurse on Monday I'll give them feedback on the ward. The main issue in my opinion is that when we need to be admitted to a ward overnight it's because we need rest as well as medical treatment 24/7. But for the nursing staff, this is simply their workplace and they are doing a great job on the whole. I don't blame them but I do remember some sage advice on here from a while back which recommended taking in ear plugs...! x
Caroline so sorry after everything you have been through to get on this trial you have not got the drug you wanted but hang on in there . You are with a great team and on the trial you will be closely monitored and as you say have got the reassurance of knowing you have access to the Olaparib if needed . It is so important for our peace of mind that we have faith in our tream and know we are doing everything we can to beat this disease but so wrong that so many have to travel to different parts of the country.
The ascities and drains are exhausting in themselves without the no sleep in hospital . Can remember it well 😩Sending love and prayers that your chemo goes well today and you can get back home to rest . Hope there is a special person you can rely on to be at your beck and call .
Pull those pants up and stay strong . Love and best wishes Kim x
Thank you so much Kim. I am now managing to put a positive spin on it all - and indeed to laugh at myself!
You make two important points - firstly that I have complete confidence in the team at the Beatson (probably more than at my previous hospital whom I also liked immensely) and secondly that I have a really wonderful supportive husband at my beck and call to do all the taxi-ing stuff (although he still uses me as navigator/lookout when we reach the miniscule hospital car park that actually is supposed to be for two adjoining hospitals). Apparently it's "easier" for a woman to get out of a car and ask someone sitting idly in a parked car if they're moving on ....x
You seem to have thought about your options and come to a rational decision that makes absolute sense to me. I would expect nothing less from the Wonder Woman I first met on the Macmillan site in 2014!! My love and best wishes and may you soon swop the big pants for the running shorts again! Thinking of you and fingers crossed for some good results. Much love. Val xx
Thanks Val. Yes, I still have my running gear stored in a gym bag at the bottom of the wardrobe. The shorts in particular glare at me insolently every time I open the wardrobe door, and one day I know I'll have to give in, at least to the lycra leggings with a baggy top!
lots of love back to you too Val. Lovely to hear that things are still going well for you
Caroline x
What bad luck this is but I can almost feel your sense of humour .! I can't add anything to what has already been said except good luck, best wishes and if Taxol isn't effective you will join the olaparib club! I'm also platinum resistant and not in remission but am taking olaparib as a single therapy for the last 2 weeks..
Sending hugs! I know its disappointing to be on the wrong side of the trial but maybe give it time? Sounds like you could get the Parp at some point and you are being treated by experts.,,so serendipity may come into play. Don't write it off just yet xxx
So Sorry to hear you have joined the octova taxol club 🙁 . I was the first member lol I could have definitely bet on getting it!!
It may seem like a bit of a Bummer but the up side is olaparib after. It definitely worked for me on the prior olaparib trial I was on.
Did you have the cold cap?? My hair is still there after trying the cold cap this time. I first used it in 1999 when I had chemo for breast cancer it wasn't good lol but I can definitely say it is great now and I don't find it either particularly cold or uncomfortable.
Pull on your big pants and stick on a smile 😀😀😀 stay positive
Thanks Carolyn. Yes when it became clear that it was the Taxol arm for me, I remembered your post as well. And having now shared my news with my sister, she's confessed that she's actually quite relieved that this had happened. She obviously felt rather frightened about a trial's effectiveness and believes in going down the tried-and-tested route first.
Never tried the cold cap first time round but based on your experience, I may reconsider.
I was a bit miffed initially but am now glad I am on the taxol then olaparib.
If you use the cold cap take one of those towelling make up bands and put it on before the cap. It just stops the tops of your forehead and ears getting chilly 😀.
I have been on quite a few trials both with my breast cancer and ovarian. I dont think that You are any worse off on trials and you are watched so carefully both during and after -even if you are on placebos. I wasnt aware that I was on Olaparib before I thought I was on placebo as no real side effects ( and my lack of luck lol ) It was only when I started my tests for another parp inhibitor trial that I was unblinded from the prior olaparib trial. I only got a reaccurence some months after that trial finished. As did another lady I know that was on it so we obvoously felt that it kept it at bay.xx
I did the cold cap and kept my hair. It was pretty thin by the ladt chemo but I could still get away without a scarf. The cold cap wasn't all that uncomfortable and I thought it was well worth the effort.
I just wanted to say how uplifting it is to read all this correspondence between us - we are amazing, ladies. Caroline you have a very healthy spin on life. I hope you get more used to the trips (I have started to on my longer haul weekly travels and am almost "used" to it) and as others have said they do have your back if things go in the wrong direction, so it is all bag of spanners, but sometimes you pull out the right spanner for the job. As it were.
Hi Netti - I can now accept the weekly trips, but what's worrying me more is that I'm committed to attending the weekly clinics, and hopefully will have the chem on the same day. But as we all know, things often don't go to plan and my bloods were whacked during my other chemo treatments which resulted in many delays. I fear there may be trouble ahead in terms of the weekly road trips...!
I feel so lucky to live close to the Royal Marsden 😀. I used to have clinic one day chemo the next but on this trial it is all done on one day. Even though my picc line had been playing up since day one despite having xrays and scans on it - it doesn't always want to play ball so on the first 3 chemos I was still at the hospital at 7pm. It behaved last week though i had to keep my arm in one position - got away at 4pm . I still have to go into clinic on my week off though for obs and bloods?? Don't know if that is after every cycle of 3 or just the first 3 . I will let you know. Only had a problem with my potassium and nausea so far. Upset tummy as well but the bile acid malabsorbtion does that so it could be either .
I wonder if the firsties in Wales and N Ireland will fare any better than England and Scotland hehe They have been some more additions at my hospital so will see what happens with them. there are to be 44 on each arm so the computer will have to say yes to the new drugs soon lol.😄
Yes you're right. I've had a bit of that malarkey too. It is hard to weigh up how much something is worth it. I suspect you will come to the choice which feels right, but meanwhile it's a bit of a mare. Talking of pointless replies I think I claim my prize with this one.
You have my complete sympathies with your ascitic drain issues - each one gets more "interesting".
I do hope that the trial goes well for you and the travelling doesn't get too taxing. It's something I may well find myself doing depending on how things go next week. Take care. Ali xx
Thanks Ali. Certainly my second ascitic drain was far more painful. The nurses decided to halt the continuous drain (as in my first drain) and leave one hour between every litre. It took ages and to be honest, don't think it helped one bit. I managed to run out of the painkiller options, and buscopan did nothing to help. Roll on morning!
Is it weekly taxol? I found it much easier than other chemo's. Love the title. I was auditioned to go on the show but didn't get on though the Chase did want me. But I used to watch the Chase on ITV+1 so it was 6pm. Bradley Walsh is a sweetheart though tried to flirt with me. Lead balloon I'd prefer one of the female chasers. But it can be funny and has stayed fresh for me because of having 5 different Chasers. That and Bargain Hunt get me through.
Why on earth can they not give you the treatment locally and send the results to the hospital doing the trial? At least you have a possible fall back on the Olaparib if needed which may be of some comfort. Thank you for the info as it gives some possible hope to us non braca patients. Wishing you the very best of luck.
Hi Caroline. When I had finished 2nd line I was offered a parp trial and initially was so positive and hopeful about it but after finishing 6 months of carbo and caleyx I was totally exhausted and ended up in tears on the sign up day as the thoughts of travelling again every week from Belfast to Manchester was enough to send me over the edge. That was made even more difficult in the fact it was a double blind trial so could be a lot of travel and cost for nothing. Prof talked some sense into me and we agreed I could have a month off before starting it.
I'm so glad I did as I ended up getting the real drug and it kept me off chemo for 17 months. Double the time I had between first and second line chemo.
He told me that if I started I could always come off it but if I didn't would never know. Wise words and I took his advice.
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