Reaching Out

This is the first time I've posted on here and it feels a bit strange to be talking to a group of strangers but you all sound so helpful, knowledgeable and supportive so I thought what the heck!

I was diagnosed in March 2015, had Carbo/Pac with debulking surgery in the middle (they found I was primary peritoneal). All seemed fairly positive though I did have two small lymph nodes that didn't respond to treatment and there was some other residual disease remaining. Was put on Avastin but by May 2016 the beast was back so no more Avastin. I then had Carbo/Gem finishing towards the end of September last year but the results weren't that great, there was some shrinkage but not as much and the lymph nodes were growing. My local Oncology Unit said there was nothing more they could do for me and referred me to Prof. Jayson at The Christie. I wanted a break from treatment but by November I was in trouble again so started the Rotterdam Regimen in December. Ended up in hospital during the Cisplatin part of this treatment with a suspected bowel obstruction which was a horrible time, really thought that was it but managed to get things moving and carried on. I finished the Cisplatin part at the end of January and have been taking Etoposide tablets since . My last CT Scan showed some shrinkage (even the lymph nodes) but it wasn't as good as they'd hoped. The thing is I'm sure the beast is growing again as my stomach doesn't feel right and I'm scared. I don't know if there is anymore treatment out there for me, if I should explore alternative methods or if I should just say enough is enough. I'm sure you'll all say I should get in touch with my consultant but I'm not sure I can face more treatment yet. It's my birthday soon and I've arranged a weekend away with my other half, my two daughters who are in their twenties and their boyfriends and I don't want anything to spoil it. I'm sorry I'm not sounding very rational but am all over the place. Can any of you help, please? 🙂

40 Replies

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  • Hi lovely and welcome,

    Have you had Carbo/Taxol or are you Carbo resistant?

    If they give you the line of 'there's nothing more we can do' I'd suggest you try alternative 'medicines' such as caniboil (excuse the spelling) I understand it's not everyone's ideal thing but what do you have to lose?

    Remember the important thing you're an individual and not a 'statistic' you never know how your body will react.

    I would definitely keep an eye on your CA125 however your stomach could just be all your treatments as your body would have been through lots, I'd also suggest trials of any sort they're willing to offer.

    Only you know your body and know when enough is enough.

    Good luck lovely and keep us updated with how you do xxxx

  • Thanks CallmeMum I really appreciate you taking the time to reply 🙂 .

    I haven't had Carbo/Taxol and am not sure if I'm resistant, I might be. I've read a few scare stories about alternative 'medicines' but am starting to get desperate enough to try them. You're quite right reminding me I'm not a statistic, once you get on the treadmill of chemo treatment it's hard to remember at times.

    My CA125 has been going up again but only by a very small amount at the last blood test a week ago. Maybe I'm being paranoid.

    Thanks for your wise words and good wishes. Xxx

  • Carbo/Taxol does make you lose your hair (I'll warn you that now) but there's no reason not to try that or weekly Taxol as there's plenty of options still available by the sounds of things also a 2nd, 3rd, 4th and 5th opinion doesn't hurt to get xxx

  • Thanks 🙂 Xxx

  • Dear Sar

    The other ladies have given you very good advice so I just want to add my little bit. I am also PPC stage 3c high grade serous diagnosed 2011. Just to understand you said in your post that you first treated with Carbo/Pac. I'm guessing that the Pac is Paclitaxel which in fact is Taxol . One is just the brand name . It would be the standard chemo treatment for OC or PPC and. If your recurrence is over 6 months you are probably not carbo resistant and could have the same again. Having said that I had recurrence in lymph nodes last year and my oncologist refused to give me the same as he said it was too toxic ! I just had Carbo and it wasn't completely successful so CT scan in Jun ! I am still angry about not getting taxol which may move made the difference.

    I did find counselling terrific and still try to meet the psychologist at regular intervals .

    You probably could have the family holiday as even after recurrence last year I had to wait for second scan which took a few months .Oncologists tend to treat later rather than earlier as they claim it makes no difference to the outcome.

    I wish you all the best and hope everything works out including your holiday. Take care

    XXX

  • Thanks for your very informative reply. I have to confess to not being very good with anything remotely scientific. I certainly hadn't realised that the Paclitaxel was the same as Taxol.

    After all the replies I have had from you caring ladies I am now considering counselling, it can't hurt to try.

    I wish you all the best and hope everything goes well for you too. Take care xx

  • Hi there

    Believe me I wasnt remotely scientific until over 6 years ago. Even then I didn't know about this site until about two years later. There is such a wealth of information among all these women and information that is invaluable. It is true that knowledge is power and as this disease is so varied and complex it really does help to pin down your own particular type and discuss with women with the same. Everyone here is so helpful and I could not get by without referring to them. Stay in touch and good luck for the future. Take care

    XXX

  • Thanks, you too xxx

  • Hello there and welcome although I'm sure you would rather not be here. I also have primary peritoneal diagnosed July 2013 with much the same treatment. Recurred in Jan 2015 and was given Carbo Gem combo with Avastin which seemed to be effective till CA125 started to rise and had bowel obstruction just before Christmas. Once obstruction resolved, I was given single agent Carboplatin but became platinum resistant after no. 4. I am now on watch and wait with close ca125 monitoring and will be given weekly Paclitaxol when indicated and have been put forward for the Octopus trial. My Consultant has also mentioned Calyx is also an option further down the line. I can appreciate how worried you are but would certainly go with the referral to the Christie and see what they say. Could you raise the option of other treatments with your Consultant if you had someone with you to back you up? Ask about the Octopus trial too. Wishing you all the best with whatever you decide to do and rest assured that we will help and support you as much as we can. Take care. Ali xx

  • Thanks Ali, I appreciate your reply. The Octopus Trial and Calyx are certainly worth me looking into and asking about. It is good to get others input, thanks. There are so many variations in the treatment everyone gets it is quite confusing.

    Good luck with your 'watch and wait', I hope your CA125 behaves for a long time. 🙂 Xx

  • I think we all hope for that for ourselves and others. We just have to bite the bullet and deal with whatever fate throws at us when we need to. It's not easy but we all seem to cope by whatever means helps us. Enjoy your holiday and take things one step at a time. If you have worries, get them checked out to put your mind at rest rather that worry about what may not be. Xx

  • Thanks Ali, very true words. I normally cope reasonably well, just having a low day I guess. Xx

  • Hi Sar100, welcome to our OC family, we are a friendly bunch and try to help each other as much as is reasonably possible without physically being there, although this can have its upside too.

    You really are having a tough time aren't you? You are right, I am going to suggest you contact your oncologist be that at Christies or your original one, you have been through the mill and I do understand why you are fed up with the whole thing but if you feel that there's something not right then a phone call couldn't hurt? Maybe a scan could help to have a look to see what, if anything, is going on in your tummy. We naturally do become over cautious because of our history and the slightest thing has us thinking the worst but that may not necessarily be the case. My digestion has never been the same since finishing chemo and some time ago I did ask if there was something sinister going on in there but a CT scan showed nothing and it seems I've developed a sensitivity to wheat, yeast and some flours since treatment ended, if I have any of these I get a big 'knot' like feeling in my gut and bloat like mad, straight away I think it's something awful and even though I know it's what I've eaten my rationality goes out of the window.

    I had some counselling after I'd dealt with the physical aspects of the disease and just chatting with somebody who was totally divorced from my personal situation was quite a revelation for me.

    We can so easily be overwhelmed when on the rotten regime of OC and its treatments but it is important to listen to what your body is telling you.

    I'm sure all the oncology professionals would recommend you have your holiday and enjoy the time with your family, it's so important to be able to have some 'normal' time for both our physical and mental wellbeing.

    I hope you get the answers you need with this, I wish you all the things you wish for yourself, sending big encouraging hugs and lots of love ❤️ xx Jane

  • Hi Jane and thank you for your very sensible advice. I'll give it a few days in case it's something silly and then think about contacting my consultant. I am due to see him in just over a fortnight anyway with a scan due early May so if things settle I don't suppose I'll come to much harm waiting.

    Your food sensitivities are interesting, not for you obviously, but certainly something worth considering. I'll have to think more about what I've been eating.

    I'm glad you found the counselling helpful. I've been offered it but didn't think it was for me as I thought I'd end up feeling embarrassed, particularly as I'm sure I'd end up in tears. Perhaps I should think again, I've very supportive family and friends but I often find myself protecting them.

    A bit of normality is what I strive for, I'm not expecting miracles, but my body keeps letting me down.

    Thank you so much for your good wishes and I wish you all the very best. Hugs and love to you too xxx

  • It's never something silly if it's worrying you. Plus I had a visit from Macmillan last week to talk about pain management and I ended up opening up to her, yes I cried and no I wasn't embarrassed - it needed to be said and it needed to come out. She's now coming back to see me this week and for at least two more.

    Talking with family is not the same as we sometimes try to 'save them' - you're already doing that by not telling anyone that you're worried and having pains etc in case 'their holiday' is impacted. A last minute issue or something that happenes when you're away will,be worse than opening up now when decisions can be made about hols......

    Thinking of you

    Clare xx

  • Thanks Clare.

  • Hello Sar100. These group of women will never look at anything your feeling or thinking as out of the ordinary. My mom had this nasty beast and passed away in February. The women on this site provided me with so much support even when I was not posting. I must say that you should let your family in on what you're feeling. This disease, although it has attacked you, hurst them just as much. The thing that has given me the most solace was being able to talk to my mom about what she was feeling. It was being able to comfort her until her very last moment. Had it not been for that, I don't think I or any of her children and grandchildren would have been able to survive the roller coaster ride that this disease delivers. Her sharing with us bought her comfort but also helps to bring us healing.

  • I am so very sorry to hear about your Mom, my thoughts are with you. I really appreciate you sharing your feelings with me as it is good for me to hear how it feels from the other side. I will try to let my family in on what I'm feeling. Take care.

  • I'm sure there are other treatments out there for you, if this one is failing. I'm unclear whether you've taken up the option of the referral to The Christie. If you haven't I think you should. There may be something else wrong with your stomach, so you need to speak to your CNS so this can be ruled out.

    A weekend away can doubtless be fitted around any new treatment you might need and if it can't, I'm sure your family would rather you didn't decline treatment that shouldn't wait just in order not to spoil a weekend away. Having said that, I do sympathise with your thinking of not wanting to spoil things. So good luck and get this stomach problem sorted and, if you cannot attend the weekend, there will be others!

  • Thanks for your reply and advice. I did take up the referral to The Christie.

    Good luck to you too.

  • Hi Star. Take the holiday and try to forget I know it's easier said then done. But I took 4 months over Christmas and I know that it was growing but after 2 1/2 years of fighting I needed this break, had a lovely time with my family and I'm sure they enjoyed the time seeing me normal for a change, I'm now back on weekly taxol. This is my 3rd line treatment and I'm sure that my oncologist will come up with something for me if need be.

    Enjoy your Birthday and many many more..Lorraine xx

  • Hi Lorraine. You've hit the nail on the head. After two years plus of fighting this beast with very little time off I just feel like I need a break to get my strength up for whatever comes next. There has been so little quality time with my family recently (Christmas was a nightmare) and I was really looking forward to some normal quality time with them. On the other hand I don't want to jeopardise my health or what remains of it! Difficult decision to make as I'm sure you found.

    Thanks for your birthday wishes and I wish you the very best too. Xx

  • Hi

    Can understand why you are having a wobble after all you have been through and want some normality .

    I am having counselling to help come to terms with my stage 4 diagnosis and likihood of recurrence . ( finished 1st line in Jan and now on Avastin) and is helping speaking / crying to someone outside the family and friends . Used up her whole box of tissues on first visit and seemed natural . We try so hard to protect those we love . I have a 20 year old daughter and 24 year old son and was desperate not to impact on my daughter going off to uni . Felt guilty and am good at putting on a brave face but need time to explore my true feelings . Could possibly help you talking through what you have been through and about your options .

    Maybe go back to the Christie and check out what is going on and if needed what your options are and then start treatment if needed and if you decide is right for you after your weekend . If timeframe allows .

    As others have said although we have so much in common our journeys ( hate that word !) are all individual and only you can decide what is best for you but make sure you have explored all your options first. You are obviously a strong cookie to have coped with everything so far so am sure after a deep breath and support from the Christie you will be back to battle some more .

    Wishing you all the best for whatever you decide . Sending you love and positive vibes .

    Hang on in there . Love Kim x

  • Hi Kim, thanks for your reply. Perhaps you're right and I should try counselling. Sometimes I feel like there is so much going round in my head that it might burst and I try like you to put on a brave face so as not to worry my nearest and dearest which probably isn't the best approach. My younger daughter was in her last year at uni when I was diagnosed and I didn't want to spoil her chances of getting her degree so putting on a brave face and keeping things to myself became the norm. I, like you, feel guilty and think that I'm spoiling what should be a carefree time of life for my two girls. My husband is very supportive and I do talk to him but he has a stressful job and I don't want to add to his worries more than I have already.

    As you suggest I'll take a deep breath and battle on. At least the sun is shining today! All the best to you and love and positive vibes are coming your way. X

  • Hello, I am so sorry you are having a really tough time and it sounds like endless treatment is grinding you down?

    I don't know if I can help, but I am here if you need me as are all these other amazing ladies, to support you in any way we can. I think you should try not to worry about stomach until you know for sure, easier said than done I know. I think there are trials out there that you can try? I'm not sure where you are based but could you get to London? I would suggest the team at The Hammersmith, or perhaps the Marsden. I went for a second opinion there yesterday and 2 weeks ago, and it was well worth it. They gave me different advice to my local Devon team. They are also on the ball with trials? Have you looked into immunotherapy?

    I found a crowdfunding page last October about a girl who was looking for/crowdfunding for, ovarian immunotherapy treatment. I tracked her down after quite a search as she totally inspired me, as well as her story, and she kindly agreed to meet me and tell me her story. We are now in touch weekly and she is responding brilliantly so far to immunotherapy ( for the rare type of oc that she has). My point is, keep looking and contacting people and please don't give up. She is testimony to having hope and to keeping looking, and she is now doing well.

    So much love to you xx

    Nicky

  • Hi Nicky, thanks for your reply which I found very helpful. It is good to know all you amazing ladies are out there.

    I'm based in the north so The Christie is the nearest specialist hospital for me and I understand they do have trials going on but I don't know much about them at the moment. I will take your advice and start doing more research into what's out there. I haven't heard of immunotherapy so will definitely look into that.

    Thanks for your encouragement, much love to you too. Xx

  • She is based under a Professor Gore at The Royal Marsden. He has a superb background. The consultant I spoke to in Harley Street who started my new avenue of treatment is Jonathan Krell at The LOC in Harley Street. You can also see him on the NHS. But frankly for me, paying to see him was the best money ai have spent, just for his experience in research, trials and ovarian cancer. He is well worth a visit.

    theloc.com/consultants/dr-j...

    I can thoroughly recommend you at least look at this or discuss your case, as everyone is different.

    Also, this girl that ai met said that she researched specialists in her particular type of ovarian cancer. She found ladies in Portugal and America who were doing amazingly well on this particular type of immunotherapy for this very rare oc.

    Xxx

  • Thanks Nicky, certainly a lot of food for thought there. The information you have given me is really helpful and I will get looking.

    Take care xxx

  • It is worth a little look. Please keep trying. I know how hard it is....I am having a 'don't want more treatment' day...xxx

  • I will keep trying, I've too much to lose not to. Please will you keep trying too. We all have low days but tomorrow is another day so please don't give up. Xxx

  • Thank you ....you are right. We are all here for each other. I am sending you much love and please email if I can help at all? Or just for a general chat xxx

  • ThanksNicky, you too. Much love xxx

  • Hi Sar

    Sorry a bit late with reply, just getting over latest chemo.

    I was diagnosed with ppc stage 4 May 2015. Had carbo/taxol, debulking , more chemo then 17 treatments of Avastin.

    My ca125 kept on going up, had recurrence of ascites in November 2016and started 2nd line chemo. After 2 sessions I had reaction twice to carboplatin. Changed to Cisplatin and had 6th treatment last week.

    I feel a lovely break with your children and boyfriends etc would be good Some normality and then try some more treatment

    Sending lots of love

    Judy x

  • Thanks for your reply and advice Judy, especially since you are just getting over your latest chemo. I hope you are getting on ok with the Cisplatin and that it brings good results.

    Lots of love xx

  • Try not to worry there are often treatment options it's whether you want them or not. I asked my oncologist to give me a list of options and the side effects each presented then I could decide which I felt were my best option. Family who want to support you are better inside the worry circle rather than out of it.

    Give yourself a break let your immune system recover from the chemo beating it'll give you time to think about what you want

    Have a great birthday weekend

    LA xx

  • Thanks Lily-Anne, that sounds like a very good technique, I will remember that approach. Thanks for your good wishes, all the best to you xx

  • Hi Sar100 - just catching up with this. You've already had some wonderful advice from the other ladies here (who are all fantastic and would never judge nor think you were silly for how you are feeling). I think counselling would be a great idea for you - i know many on here have found it invaluable as some have already mentioned, you tend to try and shelter family and friends from the reality, when that doesn't necessarily help you. Macmillan were fantastic help for me when I was caring for my darling Mum, who fought her fight with liver cancer but sadly lost it, in April 2013. And i think having a short break to enjoy your holiday is a great idea...for all sorts of reasons but as LA mentions above, it will give your mind, body and soul a short reprieve before starting treatment again. I wish you well in this uncertain journey ahead but know that we are all here to help and offer support where we can. Jemima xx

  • Thank you Jemima for your lovely, supportive reply. Wishing you all the very best. Xx

  • Hi Sar.......so glad you've found this wonderful group. I don't have anything to ad except for my good wishes and prayers coming your way. Please keep us all updated. I do hope you have a wonderful vacation with your family. I think it would do you a world of good.

    XOXO......JudyV

  • Thank you JudyV for your good wishes and prayers which were gratefully received 🙂. Wishing you all the very best. Xx

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