Secondary Ovarian cancer stage 2

HistorygirlHistorygirl Posts: 10
edited December 2018 in Diagnosis
Hi, I've just had chemo no.8 carbo platin & taxol combo, which now shows signs of not working. They are discussing changing my chemo in January.
I am being gene tested & so results show I have not inherited "Lynch syndrome" which they say is good news, now waiting for results for BRCA 1 & 1, & if I can go on inhibitors. 
I have had to request all this myself & want to ask about imuno/stem cell treatments, has anyone out there gone down this pathway?
I just can't get my head around that you are not offered treatments apart from chemo, you have to do the research yourself & then feel like your asking for the world.
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Comments

  • LouiseJLouiseJ Posts: 359 mod
    Hi @Historygirl

    You must be exhausted continually with having to fight to get treatment and research it, on top of dealing with the effects of cancer. I cannot begin to imagine, that must be so hard for you. This must require an extraordinary amount of strength to persevere and keep going. 
    I have no experience of what you are going through, apart from chemo, but a different one for breast cancer. 
    I just wanted to let you know I am thinking of you, I hope your oncologists are able to find an alternative chemo or treatment.

    Welcome to the community, hopefully someone else may have some insight that will help.

    Lou x
  • HistorygirlHistorygirl Posts: 10
    Thank you Louise J. Yes its like walking up hill in treacle at times or pulling teeth, don't which is more apt.
    Example is I asked in June for my Oncologist to contact the Royal Marsden in London, as I had a couple of queries & they were trialing this particular thing, I'm still waiting for a reply & I keep asking but nothing is happening & Im getting really fed up with the lack of feedback. I'm not giving up they don't get rid of me that easy. I plan on doing all I can to fight & get the bast treatment I can.
    I really hope all goes well for you too. Chemo is a B....
    Take care x
  • VronVron Posts: 15
    I have had a similar experience with Carbo platin and Taxol, there has been little improvement. My Oncologist  stopped it after six treatments and when I asked about alternatives told me it was the top treatment. I am currently on Avastin but am  worried about what will come next. I haven't had a gene test either. It looks as if you are right and have to do your own research. I mentioned Niraparib a few sessions ago and she hadn't heard of it even though I saw it on national news.
    I hope you have more success than me, take care x
  • HistorygirlHistorygirl Posts: 10
    Hi Vron,
    I have now had my gene test results which I had to chase, & I don't have an inherited gene,  so am unsure of my next option until I see oncologist on the 21st. I will let you know the name of the chemo too when I see him.  I am also going to ask about immuotherapies, which research says can be very successful. 
    Be strong, it's very frustrating that you have to ask or tell them about new treatments, but it seems to be the way unless you have large pots of money to go private.
    Take care x
  • VronVron Posts: 15
    Thank you, at least you are more informed now, I hate asking for things but you've just got to do it. 
    Good luck on the 21st, 
    Take care xxx
  • HistorygirlHistorygirl Posts: 10
    Hi Vron,
    Had Check up at Oncology on 21, stil none the wiser, got to wait until my next CT on 29th, as to what happens next. Had my last chemo yesterday, #10. Fingers are tightly crossed that my tumour is still stable.
    Hope you are doing ok
    Take care x
  • JanHJanH Posts: 2
    I am sorry that you are struggling to find treatment  I am luckily being treated at the Royal Marsden  I had the standard chemo then extensive surgery then more chemo  Sadly but not unexpectedly 9 mths later the cancer is back and I was accepted on a trial for immunotherapy with a Parp inhibitor My cancer was very advanced when first diagnosed and I do not have either Brac mutation  I started the new regime last week and have been feeling worse I think than on the chemo but hoping my body will get used to it If anyone would find it useful, I could give you updates as time goes on  As I am sure you are aware, this is not a cure but designed to allow me to live reasonably well with the disease for as long as possible  From my research, this treatment is completely unproven for ovarian cancer and so far there are very few of us on the trial  Good luck to you all Jan

  • HistorygirlHistorygirl Posts: 10
    Hi JanH
    Yes, please keep us updated, i have asked about these PARP inhibitors too, but they won't do anything until more advanced or have the results of the gene testing.
    I also want to ask about stem cell immunotherapy & if its suitable for ovarian cancer.
    I put in a request over 6 months ago for my oncologist to contact the Royal Marsden, or Christies in Manchester regarding removal of tumours using the laser knife, (I've forgotten the name for now), still not heard anything,just doesn't seem important to them I guess.
    I hope you start to feel better soon, & get some peace & quality of life back soon.
    Take care
    Shee xx
  • VronVron Posts: 15
    The waiting is the worst part, Shee. I've had to go on Letrozole as they found some lumps in my breasts and armpit. It's made me quite sick. I attended out patients at 2. 15 and didn't get seen to till 6.45. It was such a long day again. 
    I'm going to ask my Dr for a referral to the QE in Birmingham, it's further to travel but they might have other treatments to offer. I have learned a lot on here
    I asked my Oncologist for a gene test but she didn't seem too keen 
    My CT scan is on Friday, I hope you get a good result, and some peace of mind too xxx
  • JanHJanH Posts: 2
    Reviewed at the Marsden today and bloods were OK so I continue with the immunotherapy/parp inhibitor trial  I am feeling much better so the body must be getting used to the drugs  This means I can get back to my favourite coping strategy-lots of fast walking  Hoping snow holds off  Next ct scan is beginning of Feb, a month after start of trial so will update then as to whether any improvement although  I was warned today that it could take a while   For clarification I didn't need my genes testing for this treatment except to identify if I had the Brac mutation  I don't know why more surgery hasn't been suggested  I just trust the brilliant team involved in my care to be doing the best they can for me and I am so sorry that not everyone has the same experience  When the time comes that I can no longer be treated it will be reassuring that all the money in the world couldn't have bought me a better outcome  I was referred to the Marsden originally as a private patient Not because I have loads of money but because I was at my wits end with how ill I felt and had to go private to get a diagnosis   However Dr Bannerjee transferred me immediately to her NHS list so it was money well spent although I realise not everyone has this option but I had worked hard all my life and saved for a rainy day and at 71 that day surely had arrived!  My very best wishes to you all  I will try to remember to log in in case anyone has any questions I can help with Jan H
  • HistorygirlHistorygirl Posts: 10
    Had my CT scan today, appointment on 25 Feb for results. fingers are crossed that things have slowed down again.
    I wish you both the best of luck in the world.
    My tumour is inoperable, but keep hoping for a miracle.

    Shee x
  • LouiseJLouiseJ Posts: 359 mod
    Hi @Vron

    I hope your CT scan goes ok on Friday, and especially hope you are not kept waiting for as long as your were yesterday. 
    It just makes everything so much harder when you are exhausted on top of it all. Sorry the Letrozole is reacting badly with you, were the drs able to help you with that?
    I don't know what other criteria, apart from family history, drs use to determine whether they do a genes test.
    I hope you get some success from your Dr regarding a referral.
    I am glad you are finding helpful info etc here from chatting with others. If something here helps to give you a turning point, whether it is exploring a different treatment or from just having people to talk to, that is good to hear.

    I hope you are having a restful day today, take care.

    Lou x




  • SunshinedaffSunshinedaff Posts: 844 ✭✭✭✭✭
    Hi @Historygirl

    I was reading you had your 10th chemo yesterday, and back today for CT scan. I hope it went ok, but am sorry you have to wait until the 25th for the results. That seems such a long time away.  How often are your chemos done? I had six lots, over 6 months, so I feel for you on your 10th. I hope you are doing well with it. 
    Wishing you well, 

    Lou x
  • HistorygirlHistorygirl Posts: 10
    Hi Sunshinedaf,
    No 10 was my last of carboplatin/paclitaxol combo, I've had them every 3 weeks since May.
    I should find out what chemo they plan next depending on my scan results. Yes I agree, its a long time to wait, but what can you do.
    I've had a few days of feeling I'll post chemo, but seem to be on the mend again now, so will enjoy the extra week chemo free!
    I hope all is good with you.
  • LouiseJLouiseJ Posts: 359 mod
    Hi @Historygirl

    Sorry you are struggling these last few days, I hope you are able to rest lots. I do understand. You are very brave and courageous, especially knowing you are likely to need more chemo. You mentioned asking about laser surgery, but not had any response, do you think they have forgotten? Is it worth bringing up again?
    I am glad you have started to pick up now, hope you are able to make the most of these 'good' days. 
    I know I am not in the same position as yourself, but it is good there are others here who understand more fully what you are going through. 

    I am well, thank you. Things are good for me as the treatment and ops etc were successful in removing the cancer, I am approaching significant anniversaries which I don't think we ever forget. I consider myself to be very blessed and fortunate to have made it through to the other side of cancer. I try and live each day, I am always conscious that it could have been very different. I come from a family that has been ravaged by cancer, although I don't have the Bracs 1 or 2 genes, I was told it could still be genetic, given my family history, just not those genes. 
    My daughters, therefore will have to start screening etc at an earlier age. I hope and pray, it stops with me. 
    Meanwhile, hopefully research into cancer will continue to have breakthroughs that are effective in killing it.

    Thinking of you, 

    Lou x
  • HistorygirlHistorygirl Posts: 10
    Thank you, so pleased things are good for you, i know there is always hope, you just have to keep pushing through.
    I ask every time I visit if they have had any reply regarding plasma jet surgery (I can remember the name now, chemo brain)
    My tumour has grown around the main iliac artery, that's why its to dangerous to remove at moment, hope was that the chemo would shrink it enough to make it possible, but its not responding. Plays havoc with my mobility as the artery supplies blood to my left leg, so I'm good at long John silver impressions most day aarrrr.
    I am hopeful, i have beaten this once before, so remind myself on bad days we can do it & my little friend can do one.
    I don't have any inherited genes either, although it runs through my family too, i just don't anyone else to have to go through this & really hope they make a breakthrough with new treatments.
    Enjoy every day before you, smile & always make time for yourself.
    Take care
    She'd xx
  • LJMLJM Posts: 7
    Just sharing my chemo treatment info.  I had 12 wks of chemo, taxol and carbo, both before and after my surgery (ovarian stage 4). Good rescan results, although the chemo was very tough.  Now I've started oral chemo Lynparza, hoping side effects ease up over time.  Good luck to you.  Hope things get better soon.
  • HistorygirlHistorygirl Posts: 10
    Good luck to you to LJM, 
    Chemo combo not good at best of times. Positive thoughts coming your way too for Lynparza.
    Xx
  • HistorygirlHistorygirl Posts: 10

    Update.

    Had my Oncology appointment yesterday, & the results were better than expected.

    My tumour has not grown, my blood results we low, so the cancer is stable for now. I now have a break for 7 or 8 weeks & will be monitored for awhile & when it shows signs of reacting again, then it will be chemo again.

    I am so looking forward to enjoying a few weeks of no chemo & to just be me for a while.

  • LouiseJLouiseJ Posts: 359 mod

    Hi @Historygirl

    I am so glad you had good results yesterday, that is positive news for you.

    Yes, I can understand you looking forward to not having treatment for a while, and being able to resume 'normal' activities. I hope the break will be refreshing for you, and your strength will be renewed.

    Rest, take it easy, no climbing Everest or anything!😊.

    I hope you are able to enjoy this lovely unusual weather we are having at the moment. The sunshine does make the day brighter, in more ways than one.

    Take care,

    Lou x

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