Advice on next steps

Hi lovely warriors,

I'm asking for your experience and advice regarding my wonderful Mum as we seem to be at a critical crossroads re treatment going forward. I'm obviously not as close to her treatment as she is so please excuse me if I get any terms wrong.

She is currently stage 4 and her OC is aggressive. She was diagnosed 2 years ago, had major surgery after which she was NED. As the cancer had spread into her bowel and bladder lining we were aware we weren't going to "cure" this bugger but were hoping for a good go as Mum at the time was only 60 and a hell of a warrior like you ladies. After surgery her oncologist recommended Taxol and Carbo but sadly she seemed to have an allergic reaction to Taxol after first dose so continued with Carbo on it own for the rest of that cycle. At the end of chemo she was NED and CA125 was "normal".

Unfortunately her CA125 started increasing just 6 months later when it was found to be in her lymph nodes. I argued with the onc at the time about whether she was platinum resistant but as we were a week over the 6 months threashold for recoccurance she felt Mum was platinum sensitive and ordered Carbo and Gem for her second line treatment. Mum found this tough going with several admissions for infections caused by neutropenia. At the end of the cycle her CA125 had reduced but was still high, however her liver was damaged through the chemo so she was given 3 months off further treatment. She was given a maintenance oral drug at the time (sorry I can't remember what it was) but this had no effect.

After nearly 4 months off her CA125 went crazy (around 25,000) so she was put back on chemo - this time Caelyex which has been incredibly harsh. She's managed just 3 cycles before she sufffered such terrible side effects they had to stop (burning of feet so she couldn't walk, liver damage). She's been in hospital again this week and after CT and an MRI they have found that the lymph nodes have increased slightly during chemo and she has fluid around her liver - the cancer has also now penetrated her liver although there are still healthy areas apparently. Her CA125 is currently 39,000.

We have been referred to Christie and have an appointment at the end of the month but the prof and mum's onc are currently both of the view that Rotterdam (which i understand to be 4th line chemo) is the best way forward.

We don't agree bearing in mind mum's response to chemo so far and the crippling side effects she's experienced. She's a tough cookie and will take anything if it means slowing the cancer down but to go through being practically bed ridden for 3 months with very little impact is horrific for her.

So warriors where do we go from here? Options as I understand it is 4th line chemo, trials - although because of mum's liver and her BRCA neg status a lot of good ones are off the table - paying privately for avastin, Going abroad for immunotheraphy. They are looking at radiotherapy for the lymph nodes in her back as these are causing her incredible pain, but they won't do anything with her liver which for me is the big worry. Considering asking for a referral to a liver specialist but not sure. We are also thinking about Taxol as she did respond well to this despite the reaction- wondering if they can manage the side effects (low blood pressure).

Sorry for incredibly long post, we are just at a loss and feel that what we do next is so incredibly important as mum's liver probably only has one big fight left in it.

Any advice gratefully received from you wonderful ladies. Thank you in advance.

11 Replies

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  • Hello Kez,

    You both seem to be going through this Hell together. All I can suggest is seeking a second opinion. Your oncologist should be understanding about your mother's need for this, after all, it's her life that's being threatened by this horrible disease.

    Do keep us informed and I'll keep my fingers crossed for some kind of improvement.

    Iris x

  • Gosh Kez, what a massive roller coaster ride for you. My Mum was diagnosed at stage 3c at the end of 2013. She went through the Carbo/Taxol/debulking in 2014. Looked good in Oct 2014. Recurrence in Jan 2015. :-( She then had 6 x Caelyx and, like your Mum, had terrible side effects - sore feet and other places but her hands were so painful and cracked after the third dose that it was decreased by 20% and things got better after that. She had 18 months of stability but then the cancer woke up again. She has recently had Carbo & Taxol again. She saw the onc last week and he said the tumours have all reduced and her CA125 is 10, which was great news and we are really hoping for another nice long remission. (Or 'recession' as Mum put in her email to me!!). They had to leave the last Taxol out as Mum's right foot has gone numb and they think it may have been caused by the Taxol.

    Anyway, sending virtual hug and I really hope you find a treatment that will give your Mum some stability. I've often seen second opinions mentioned on this site and I think it's really worthwhile getting more opinions. Your Mum is a lot younger than my Mum, who will be 81 on 4 October. Jane XX

  • Kez- it's so difficult to know what to do. I do agree that another opinion could not hurt. I had my recurrence a mere 2 months after NED first line. So am swirling a bit myself. I am in US so our process for this is different. I'm sure the lovely ladies here may have some more specific suggestions or perhaps the best way to expedite another opinion.

    Prayers to your sweet mom. I'm in my 40's.. this rotten disease doesn't discriminate by age. ☹️

    🙏🏻♥️🌈

  • Hi Kez15. I'm not a lot of help to you but just a couple of things : firstly, I don't think avastin is on the cards for your Mum as it's used more as a Maintenance drug, not a cancer-killer. I was diagnosed at 3c. For 2nd line I had carbo/caelyx. Caelyx can be hard to take. I had a lot of side effects but not a foot problem. After 2 doses, my mouth ulcers (plus other side-effects) were so bad that my onc reduced the dose of the caelyx by 10%. It was bearable after that. I've read on here that Caelyx can take a while to take effect. I do know I've had a good long remission from it. I'm wondering if a reduced dose of caelyx would be worth a try. Best wishes to you both. Pauline

  • Kez,, I so feel for you and your Mum. I don't really have anything to add to what the other ladies have already said. I'm pleased that she has been referred to Christie's as I understand it's one of the best hospitals for cancer. I hope there will be some sort of treatment to help her. It must be so hard for you.

    Thinking of you both and sending big hugs (((HUGS))) and love,

    Solange xx😊Xx

  • Hi kez. These situations are extremely tough. Avastin possibly want work as it is generally given adter successful chemo to minimize the blood supply to tumors. On it'own it will most likely not reduce the cancer. I would find a really good cancer hospital for a second opinion. Start an alternative healing programme like intavenous vitamin c. Mistletoe injections, avemar, pycnogenol etc. How about medicinal cannabis. Hyperbaric oxygen therapy maybe. All these things will help her body heal from the chemo damage and might buy her some more time. There is a lovely lady on this forum who put her supplement regime up. Her name is nicki. Maybe she can post or pm it to you. I see if i can find it. I was diagnosed 3c in 2015 have had 41 weeks of chemo in 2 years. I was never sick or gad side effects from neiter chemo which were and carbo/taxol for 9 weeks and for first recurrence carbi/gemcitabene. I am now considered platinum resistance. I am currently fighting to halt or stop a third recurrence. Avastin did not work for me and set me back 40k new zealand. Might be better to spent that money at an alternative cancer centre.

    I am looking at getting a second opinion overseas at the moment. Just weighing up where I should go for that. We are fairly limited in new zealand.

    Goodluck and hugs for you and your mum.

    Marijke

  • Hi Kez, these are not easy decisions to make & can be all consuming so I really feel for you. Just wanted to wish you best wishes.

    CancerCarerChats

    cancercarerchats.blogspot.c...

  • Had your mom ever tried stomach wash chemo it's also called IP chemo or Intreparatineal chemotherapy. City of Hope in Duarte CA and other major cancer hospitals should know how this works. Best regards. I think it might be worth trying. It's uncomfortable but didn't get me sick. Just bloated.

  • Hi Kez, I guess your poor Mum is going through a lot. Sometimes you just have to think what is the best for her right now. Maybe she would be better off stopping all Chemo and deciding to enjoy her life as it stands today. I know this isn't what you want to hear but I too have reached this stage. I have had 4 lines of Chemo, some with varying degrees of success. I had radiation therapy several procedures, constant scans and on and on. I am sick of it all. I am not as sick as your poor mother as yet but I have a highly aggressive form of the disease and I have been told once I stop Chemo it will be months. So my choice is to live and be happy and forget about trying to go on and on with treatments that have little or no impact on this disease. I had IP treatment at the beginning and it will probably not be an option for your mother. It is usually done first line. I live in Australia and it is standard treatment here in Queensland. I guess as other people have suggested a second opinion is a good idea or even a third opinion. I took tamoxifen for six months and it had a good effect in slowing the disease down. So I hope my thoughts haven't upset you too much. I just wanted to present another view. Much love Sharon.

  • Hi Kez,first I would like to thank you for sharing your worries about your mum,what a support system she has with you.Chemo is a bugger no matter how you look at it and it does affect other internal organs,usually the kidneys.I had lesions on the liver and my Onc told me he wouldn't worry as the liver can still work if there was only 25% good.Having said that,I've had bowel problems and a few more issues so my G.P is sending me to the relevant specialists.The G.P is the primary professional and just because you have O.C doesn't mean all other body parts are covered by Gyne or Onc,so I would ask your mum to be seen by other specialists with regard to her liver etc xx

  • Wow you amazing ladies are incredible. Thank you so much for taking the time and effort to reply to my post, it's very much appreciated. Unfortunately Mum is back in hospital again as it looks like her liver really isn't very happy so we are just waiting for a scan to see if it's fluid or cancer causing the problem - keep your fingers crossed for the former.

    Depending on those results we have the second opinion booked at the Christie on the 28th September and my sister and I are frantically researching alternative therapies and treatment for liver cancer (seeing as this is what is causing the most pressing problem right now). I'm also looking into all the things you lovely ladies have suggested. I just hope that Mum is currently having a 'blip' caused by Caelyex side effects and we can start moving forward and she can feel better soon. Will keep you all posted.

    Thanks so much again, it's just my sister and myself with my mum (our dad died a few years back and we don't have any other family apart from our husbands and kids) so it's sooooooo lovely to have some virtual support.

    Kerry

    XXXX

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