Hello friends... just need your thoughts and any advice please. I have finished 18 weeks of Taxol but sadly cancer is off and growing again despite the half way good news 
So now I’ve been advised by prof that I should start ASAP on Cisplatin / Gemzar ( despite twice having Carbo and it not working) to then in the long run apply for Niraparib if it works. I also have been accepted into the arginase inhibitor with Gemzar trial and the trial team will call me next week to let me know if they cld start any earlier than January. I so hope so. The same trial is in London but the travelling from home to UCH is such a hard one and I love it up at the christie as they are so wonderful here! I am worried as Prof said he is worried if I wait until Jan I cld get a bowel blockage and doesn’t think trial would necessarily be as effective as chemo? The trial team couldn’t comment as it’s such a new trial ( phase 1 second part now...) I feel caught between the devil and the deep blue sea! Any experience of this chemo? Any thoughts please ?🙏❤️
Decisions decisions...? Help! : Hello friends... - My Ovacome
Decisions decisions...? Help!
Hi I am on cisplatin for 1st recurrence as single agent I had carbo/taxol with avastin and had partial response then avastin but recurred, Im due to have it every 2 weeks the 1st few days were rough but I don't feel as bad as I did with carbo/taxol i had no sickness just tiredness. I was actually deemed platinum resistant as I recurred within 5 months at one hospital but met a nicer more open minded oncologist and I am happy enough with it, I was offered Gemzar but decided to hold off and hope this will blast it, sorry to hear you recurred, take care Clare x
Thank you Clare so much for replying - I guess everyone is different in how they respond to the different chemos. I was so very ill with Carbo / caeylex I am very scared of the idea of cisplatin / Gemzar: but perhaps it is something I might find bearable. I am really keen to try the trial but will hear whether they have room for me earlier! It’s tricky as doing one will cancel out other options.
Thank you so much again and wish you well with your kind oncologist.
Xxx
SO sorry to hear this Hopefulgal. I have no experience of the drugs, but I’d say the Prof was a good man to trust....Linda xoxo
Thank you so much and agree - what a wonderful man he is x
What cell type is it?
LA
Sorry L-A not sure what you mean? I’m high grade serous 3C and platinum resistant and BRCA neg...xxx
Hello, as you know I am having Cisplatin & Gem as part of my trial with the Arginase inhibitor. Other than a fair amount of cramp which is sometimes extraordinarily painful and leaves the affected muscles feeling weak for hours, I am having few side effects. My blood results are being hammered compared with my usual reaction to chemo and low Mg is probably the cause of my cramps.
I would be governed by what the Prof thinks. He may well feel that a satisfactory response to Cisplatin and a subsequent Niraparib application may show better results for you than the Arginase inhibitor. Certainly, I'd not want to run the risk of a bowel obstruction.
What is the title of the trial with the Arginase inhibitor with Gem? It must be a different one from mine with Cisplatin and Gem.
All the best, whatever you decide. If travel to UCL is difficult my trial requires you to go every Monday and for the first few cycles an 8-10 hour day so Manchester may be the better option for you travel wise as well as the rapport you've built up with the Prof.
Helen
Hello Helen - my trial is the same as yours but the second phase ( still a stage 1 trial though) now so they are doing it with Gemzar only. I am sure the logic makes sense that Prof could up dosage of cisplatin Gemzarto try and get me platinum sensitive but the reason I didn’t have the full amount of Caylex Carbo was because I was so ill after each ( ending up
In A&E) so not sure how I’d manage on something repuutably harsher? I think we may stay up here - extend on the flat - and be under the eye of prof although I wld be under a different team if I go onto trial up here . When do you get your scan results - I so so hope they are good for you. I also don’t want to risk bowel obstruction but if the trial shows good results ( which of course they won’t tell you! So how do We know it will work?!) I wld prefer the side effects you list to being ill with the chemo. Thank you for taking time to advise 😘❤️
I've had a scan. My lymph nodes have reduced in size (the report shows no more detail than that). My one target lesion, a rectosigmoid serosal depots which is what allowed me onto the trial (the lymph nodes are still too small) increased from 1.4 cm to 1,5. It is described as stable disease by the report (not by me, since it's a 1 mm increase). I'll have to wait for the next scan. I should find out how much my CA-125 has reduced by tomorrow.
Well apparently a couple of mm can be described as stable - I think we all just want the good news though not the stable but how long have you been on the trial? Have you spoken to other fellow participants to give you a boost? Crossing fingers and toes the CA125 is still downward trending! They didn’t say much to me at UCH regards results as it’s all confidential understandably but we really are going into these trials without much info aren’t we?! Hope you have a lovely Sunday xxx
I've had a look at the NICE guidance regarding BRCA neg platinum resistant folks. It says that you need to have been sensitive after the first line but many have posted about being accepted for funding I think the oncologists must have a way round this. However, I also looked at the data that is expected to be provided by the treatment centres to the Drugs Fund for those accepted for treatment. A requirement is also that CA-125 is either normal or demonstrates >90% reduction of what it was before at the start of the last platinum treatment. Here's a link for info. It might help your decision. nice.org.uk/guidance/ta528/...
All the best! Helen
Thank you so much Helen - I’m so amazed by your knowledge and understanding of all this! I’ve looked at the guidelines ( thank you!) and it seems that magic “platinum sensitive “ state post chemo would be what Prof is aiming for ( I’ve been deemed plat resistant but it feels like a long shot!! I am not sure how successful cisplatin / gemzar is usually though? Maybe it could work a miracle..?! Well I’ll await my call from the trials Dr. And see what she says 🙏 I do hope you’re feeling better post all those cramps - can they give you something to ease it? Xxx
It's not certain what's causing it. It's usually electrolyte imbalances and my numbers for some are right at the bottom of the range, but not quite off the range. I'm finding it difficult to get it accepted that bottom of the range might just not be good for me. Either way, I have to stop the cramps so I may well self-medicate although I've got to try and find out everything that might be described as an electrolyte first. Mg and Calcium are I know and I can check what my blood tests were from right at the beginning of the trial and try and bring everything back to those levels. And to think I never took any drugs before all of this and there's me investigating taking more.
Will be interested to see what your trials team say as I cannot find that Cisplatin has been taken away from this trial. But maybe it's not been updated on the web yet.
Good luck anyway.
Helen
PS I know you asked about others at the CRF that are on the trial. I can only find three and they seem far more ill than me and sickness seems to be a problem. They may have been more ill before they started possibly.
Thanks Helen - I really hope you can sort those cramps and that they can help. I’m nervous re sickness as I do seem to really get nauseous with treatments - so do hope you are going to get the most amazing results from this - you are a brave lady ansand I take my hat off To you!! Xxx❤️
No, I'm just lucky. I've never been sick once with any of my treatments. Occasionally taken some crystallised ginger for slight nausea and wham, it's gone.
Now that’s what I call SO lucky!! Xxxx
I will merely add this to what others have said -
partial bowl blockages are really REALLY painful (a 9 on the ‘0 to 10’ scale, just before passing out) and to be avoided - even if it means all sorts of other pains!!!
That’s all I have to say.
Iris xx
Thank you Iris - yes one way or other I’m going to have to do something soon and not wait until Jan! Xxx
Hi there
As my first line i enrolled in the icon 8 trial and i dont regret it as i got weekly chemo which now seems to be used quite a lot. I made my choice after talking to the trials team. So my advice is if you get chance talk to them too and then make your choice i do a pros and cons list because as you say you trust your team and the travel is not insignificant, good luck with your choices xxxx
Diane
Thank you so much Diane - good advice indeed hoping to talk with them next week hopefully!! 🙏
Hello - I wouldn’t do a Phase 1 trial if the distance is difficult, I have done 2 trials and they are really intense, as said above weekly for blood tests and other stuff, unless you feel super well and energetic. I was well but the 2nd Phase 1 trial (which didn’t work) left me exhausted, low bloods etc. But I guess you could do the trial and the the regular chemo. I think i’d Ask more questions. Much on here about diet for bowel blockage and avoiding certain foods. Good luck, you sound v positive. Nicola
Thank you Nicola for replying and yes if we do the trial I think we wld choose to do ip hee in Manchester as the travel (1 and half each way on public transport in London) too much otherwise but let’s see if they can fit us in?! Thanks again and sorry to hear one of your trials didn’t work - hoping you’re doing well now though? Xxx
I wish I could offer you advice Hopefulgal but not (yet) in your situation. I do know from being on two trials, the monitoring is something I really did like...they test constantly--so I know if things were not going well (one trial failed, one I got a placebo halfway through so that also didn't work once put on the placebo) but for the failed one, they knew quickly enough to schedule me for something effective, which it was. But you need to have the strength (mentally as well as physically) if its a long trip, with the knowledge you have a goal and will do what it takes. If you choose to. Rooting for you either way! oxoxoxox
Thank you Maxjor! I am feeling more and more inclined to do the trial - I have been on chemo for a year pretty much with no break and can’t bear the thought of cisplatin/ gemzar. I am not sure though as Prof wld like me to get back to “platinum sensitive” so I could apply for a parp but this is a big “if it works” and if I do this chemo then it wld understandably mean I couldn’t then do the trial! I’m going in circles...will try and speak with trial Dr this week.
Thanks again for your kind wishes it makes such a difference to know there are women out there who are caring! Xxxx
Why does he think you might get a bowel blockage? Have you nodules in your bowel? As I have been told this too but really need to wait until end January 🙏
They looked at my last scan again and he sent the Dr back in she also felt the lumps in my groin ( lymph nodes ) and feels that it may have grown so that would also likely to be my sigmoid colon ones... a lot of guess work here but he knows his stuff he sees a ton of women and probably knows that it is risky now. I’m trying everything to dampen down the cancer - drinking the most disgusting chaga ‘tea’ at the moment - ugh!!! 😊 xxx
Hi there. That's a tough decision to make. Sorry, I've got no experience with either (Arginase or the Cisplatin/Gem combo).
But I've observed a friend of mine (late stage kidney/uterine cancer) participating in a stage 1 trial that involved a 500 mi train roundtrip and hotel stay, once a week. It was very exhausting for him.
So depending on the frequency of trial treatment, maybe there's a way you could manage to minimize travel impact? Could you stay at a bedsit or a Travellodge, during those days, for example?
That is, if you choose the trial.
Ah man. I'd like to say that I'd lean towards the trial, personally... hoping that chemo would still be there as an option, in case the trial didn't work (which might or might not be true) . The challenge is how to get there without complications/severe symptoms in the meantime. I'm guessing those could prevent or at least delay the trial anyway.
It might really be the state of your disease that forces a decision. If it likely won't allow you enough time to start the trial in January, because you need treatment immediately, then the trial is no real option anyway, and Cis/Gem it is. This is where Prof J comes in, and the trust in his assessment.
So I think you're taking the best possible approach under the circumstances in exploring an earlier trial start option. If that is possible, great. If not, maybe that's the decision right there?
Or you gamble and try for January, with a careful diet and close monitoring, and just hope that your symptoms come on so gradually that you could still start chemo on short notice, if necessary.
Wishing you success with either treatment choice and definitely no blockage. Hugs. Maus
Wow Maus that is really so helpful. Yes I’m leaning towards the trial too. The young Dr said if I did the trial then the cisplatin gemzar wld be off the table and it would be the cisplatin / epotiside “ Rotterdam” left!! Ugh... so it’s a big decision.
The trial sounds kinder ( although helen sounds like she is suffering from awful cramps etc now..) and if I do it here at the C then not such awful travel a step my lovely hubby would just drive me on each time. Well you’re right let’s see what the trial guys say and it may well lead to a decision. Thank you thank you!!! It’s so hard when you feel like you’re running low on options one has to choose so carefully...xxxxx
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