So, after finding out my cancer returned in September, less than 3 months after 1st line treatment, I now begin 2nd line which will be caeylx alone this coming Monday.
I had a 2nd opinion from the Royal Marsden, where unfortunately I found out that I wasn't eligible for the Forward 1 trial but also that I now have a 4.5 cm inoperable tumour near my liver sitting right on a major blood vessel. ( along with multiple tumours in the plural space )
My treatment to date has been confirmed as exactly how I would have been treated at the Royal Marsden ( not that I ever doubted my amazing team ) however was looking at my options due to recurring so soon.
It seems I fall into a very slim category now affecting my options, I'm platinum resistant, negative for folate receptor, but also my tumours
are unable to be biopsied, meaning the one trial I would be eligible for I can't access as they have to take a fresh biopsy.
So I am accepting that Caeylx at home is the one for me! Being surrounded by my beautiful family and friends, I won't miss the 8 hour round trip to London although I found the hospital at the top of their game and incredibly welcoming.
I have the Royal Marsden cook book, it's fab, lots of advice as well as the recipes to see you through treatment and beyond.
Have any of you ladies had a longer break after 2nd line of caeylx. It's highly likely the carbo/taxol made no difference to my disease as my areas of recurrence are in a completely different place and all of the disease removed during debulking remains NED. Looking back at my previous CT scans now my recurrence is measurable, it appears these areas were suggestive of 'something' on both scans since End of treatment. Interestingly I did have a 13 week delay restating chemotherapy post surgery due to pancreatic leak and wound opening.
It's hard not to try and find answers, but I think there are no specifics in this disease!
Sending you all the most positive energy and calming vibes to face whatever it is you are right now. Live in the moment my friends xxxxxxxx
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Jessica-DianeB
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Hi Jessica and just wanted to agree with you that there certainly isn't any specifics and a one size fits all with this disease! My 1st remission was 8 months and then I like you had Caelyx alone for 2nd line; it put me back in remission for 6 months.
I finished 4th line treatment mid October and am just waiting for the results on my follow up CT- I'm not very hopeful tbh as my ca125 remains at 500+. But like you I keep positive. I take joy in the simple things - have just cuddled up with hubby on the sofa and watched tv. Precious times.
Caelyx is doable and you'll attack it on Monday! Hopefully it will do the trick for you!
Hi Jessica, Glad your team has a plain ready to go' as for Caelyx as I have said in my post and replies to post, Caelyx has been the best treatment for me, I had it for 3rd line treatment and now will finishes my 8th treatment of Carbo/Caelyx tomorrow, when I started this treatment my 125 had gone up to 1300 last results was 54 still have one more result to come.
As for a longer break after treatment, my history is I've not had long breaks in the 3 years I've been on treatment but there is a lady on here who has had 2 years arfter Caelyx and I sure there are more.
I'm having a break over Christmas and then will go on a lower dose of Caelyx for maintenance.
As you know we are so different in our results with Chemo, Caelyx can be hard but manageable.
If you type in Caelyx in the Search my Ovacome, box and enter you will find some helpful post on Caelyx.
Sending you my best wishes take care Lorraine xx🎉🎉
I am glad you were able to come up for the best treatment option for yourself surrounded by your loved ones. I also hope Caelyx works well for you. Did you manage to speak with the onc about Caelyx after a splenectomy? Rather interested to hear what they say.
Yes it seems the splenectomy is a bit of a risk but doesn't rule standard treatment out. Carrying on with the antibiotics and I will be the queen of dettol this winter and keep myself away from anyone with the slightest bug apart from my children of course 🤣🙏
Just want to wish you the very best with this Treatment & say I’m thinking of you and keeping everything crossed! Not much more I can say really other than that you have always had such an amazing attitude towards what life has thrown at you!
Much love
Sarah xxx
PS don’t suppose you are going to the ‘Yes to Life’ annual conference on Sat are you? xxx
I’m good Jess thank you. Your post prompted me to do an update also. I feel very fortunate for the Olaparib it’s being pretty kind to me, to be fair. ❤️❤️❤️ To you xxx
Interestingly while my BRCA isn't back yet, RM have said it's still with going to the profiling on my tumour just in case there are somatic mutations.
My hospitals guidelines are now that they only offer it to platinum sensitive patients, so that rules me out.
However I will pay privately if it's necassary. The statistics in this whole disease are small and I'm still hoping, so why would I choose not to have it done based on it being highly unlikely I will test positive. A chance is better than nothing at all xxxxx
My hospital did test my tumour (as part of a trial having results delivered in the oncology clinic rather than genetic counselling and it was negative. I wasn’t expecting to be BRCA positive as those that are, usually get ovarian cancer at a younger age (I was 67) and are also platinum sensitive.
However, I’m wondering if a cancer can eventually become BRCA positive given that the cells are mutating all the time. It was my original tumour from my op that was tested. It might be quite different now. Wish I’d studied biology!
I’m also interested in finding out if any women at all, who are platinum restaurant and BRCA negative benefitted from a PARP inhibitor or if they were excluded from the trial from the outset. Keep meaning to check as even if only a few benefitted, you and I and others could be one of those few....
Just wanted to wish you the best with your treatment. I'm starting caelyx/carbo on Monday too. Fingers crossed for good results and a longer remission for you.
Yes, every 4 Wk's for me but I'll be changing to a thurs/ friday once the first one done. Where are you having your treatment? I'm in velindre (cardiff)- we'll keep in touch though! Michelle xxx
Just want to wish you well, Jessica-Diane. Sorry you're ineligible for a trial. So disappointing for you. Keeping my fingers crossed that Caelyx does the trick Sending positive energy and calming vibes right back to you with love and sympathy and a virtual bunch of flowers. 💐 Solange 😊 Xx
Hello Jessica. My mum had her debulking and carbo/taxol in 2014. In Oct things looked really positive but in Jan 15 she recurred. She went onto 6 Caelyx. After the third one she had really sore hands and they were cracking so the dose was reduced by 20% and things were OK after that. So, if you do start to get sore hands or feet, keep an eye on them. But everyone is different and you may not have any side effects. When mum had finished the Caelyx she had 18 months of stability which she really enjoyed. Then the beast woke up again. She's had carbo/taxol again and her CA125 went down to 12. But it went down to 14 the first time round. She is due to meet the onc at beginning of Dec so fingers and everything else crossed! She's feeling well though so that's a good sign. It will be four years since her diagnosis - 3c - on Christmas Eve. Christmas 2013 was a strange one!! Hope your treatment goes well. Jane XX
Thank you for the tips, many people have mentioned the sore skin, to keep cool as poss ( hard when menopausal sweating ) and plenty of emollients and loose clothing.
It's great to read your mum is doing so so well xxx
Hi Jessica. I just wanted to add my very best wishes for this next round of treatment. Pleased you have comfort of confirming you’re having best available treatment and close to home. Sending virtual hugs. Jo x🌼🌸🌻🌺🌹
Hi Jessica, Really sorry to hear you are starting 2nd line treatment so soon after the first . I finished 6months of Carboplatin and caelyx IN Sept and awaiting the results of cat scan. I was very, very lucky and had little in the way of side effects except a little bit of constipation which was soon sorted out with Movicol sachets which I really recommend. Towards the end of treatment I had a problem with low magnesium levels which were soon righted with magnesium supplements taken orally . Everything I can cross I am crossing for you and hoping you get fantastic results with minimal side effects. Love Chris
Good luck with your new treatment - I'll be very interested to know how you're doing with Caelyx, as you know, I might be starting it soon too- reading the posts, I'm getting only positives from this drug (except of course for the side effect, which can differ from person to person)
I also received a present of the Marsden Cook Book - try their Granola - it's fab!
Keeping fingers crossed that Caelyx works for you. I am also platinum resistant and may end up on Caelyx though still hoping to get on a trial at the moment.
Hi , I'm from the US California . I don't know if this may help you in the future. I did what I call stomach wash chemo. It's real name is Intreparatineal chemotherapy. They put chemo directly into the stomach cavity.its an old technique but it is being used again with great results.its just an idea for you. In the US we don't use the term first or second line. My Dr is extremely aggressive and she gave me the strongest IV and IP chemo that I could tolerate first time. Best wishes for your recovery. Like I said just an idea of course.
I wouldn't worry too much about the delay, I was told it doesn't make a huge difference. Sorry you're on the treadmill still. Heard lots of good things about caeylx, treatment at home has to be less stressful.
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She's had carbo/taxol again and her CA125 went down to 12. But it went down to 14 the first time round. She is due to meet the onc at beginning of Dec so fingers and everything else crossed! She's feeling well though so that's a good sign. It will be four years since her diagnosis - 3c - on Christmas Eve. Christmas 2013 was a strange one!! Hope your treatment goes well. Jane XX
CT scan today....results 4th April.....it's sunny so things should be good.....or is that just what the Easter April bunnies think?
Successful first line treatment
Chemo Stopped 
HGSOC, BRCA -ve, Platinum Resistant Stage 4
