Don't despair when relapse occurs!

I do not often write on the site but like many others I have benefitted from the blogs,questions and advice given by so many people.

I was diagnosed in 1999 with 'cystoadencarcinoma' of ovary and had the routine surgery followed by course of Cisplatin/Taxol. Within 2 years I had recurrence and from 2001-2011 had 8 courses of carboplatin for recurrences. In 2011 I became resistant to Carboplatin so had Topotecan followed by Gemcitabine and from June 2012 had weekly Taxol. During this time I had read in Ovacome the work of Prof Hani Gabri and in view of coming to the end of available chemo drugs(Caelyx not being manufactured) I discussed with my Oncologist what now. He took my case to MDT meeting and within 2 weeks I had an appt to see surgeon at Regional Hospital. He offered to remove the 4 tumours as he felt this was possible on the latest CTscan.This was offered because of the length of time I have had the disease, number of courses of chemo given and I had tolerated well and the disease was confined to abdomen.He said surgery is not offered routinely as the statistics show no increase in survival following surgery other than the initial surgery planned at diagnosis.So 5th Nov I had a Laparotomy. However the findings were of multiple adhesions which were separated with difficulty, no visible evidence of malignancy but the node could not be removed without damage to my bowel so biopsies were taken.I had a smooth post-op. recovery(except for Fragmin inj.!)This week I received the biopsy results NO evidence of active disease.

Wow. A chemo-free Christmas first time for years and follow up in New Year by Oncologist.

Obviously no guarantee that won't recur but onward to enjoy life without dates for chemo etc. etc.

I believe my good quality of life etc is largely due to prayer and support of friends during this time as my husband died in 2009 so how I missed him as support during chemo.

Sorry about the long blog but I just to write to encourage those of you struggling with recurrence Don't give up.

Best wishes to all

Joyce

23 Replies

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  • Dear Joyce

    Thank you so much for posting up your message of hope to us all. It is wonderful to hear such good stories and something we know is possible even though it's not common.

    I too was impressed by the work of Professor Hani Gabra who told us it was due to the improved skills of the surgeons to remove tumours that we owe for lengthening our lives.

    This has been a hard journey for you. Too cruel to lose your husband at about the same time as your diagnosis. I know your story will be of comfort to other ladies in the same situation as you found yourself. May you have many many years disease-free. I wish you every bit of luck with that.

    best wishes, Annie x

  • What a long journey you have had, and what a lot of chemo!!! Someone asked a question the other day about how many lines of chemo you could have.

    It is very encouraging as I have just finished my 1st line chemo and after 6 carbo/4taxol my disease is stable. The 3 chemo after surgery made no impact on tumours surgeon couldn't remove. I was feeling quite down as I had hoped I would be disease free after treatment.

    Realistically I know as I'm stage 1V it will wake up, hopefully not too soon though. The longer it lies dormant the better.

    Enjoy your 'chemo free' Christmas and long may it last.

    Best wishes

    Chris xx

  • Hi Joyce,

    It is so lovely and encouraging to hear your good news...thank you for sharing this...it is particularly significant to me.... as we have the same oncologist..it has cheered me up...

    Love and best wishes x G x :-)

  • Hi Joyce,

    I was really interested in your blog as I have been told I have a 3rd recurrence (dianosed IIIb 2009). Was preparing for 3rd line chemo after Xmas but my Onc has suggested surgery as an option. She discussed my case in detail at MDT mtg with the surgeon and both agreed that, as my 3 tumours were recurring in the same place, surgery to remove all disease was possible. I had a laparoscopy last week so the surgeon could check that no further spread could be seen, which proved successful. I had to weigh up pros and cons of surgery v. chemo and as no really reliable data could say whether I would be 'clear' of disease, I was led to believe surgery was better than going down chemo route again (and again etc....). I finished 2nd line in April so the recurrence has come back much quicker. I hope I am doing the right thing with the surgery, and everyone tells me it is the right decision, but there is also the doubt! The surgery will be really horrible - I will lose my spleen and will probably have a colostomy (at least to begin with but might be permanent!), so no thrill ride! On the other hand I could carry on having carbo time after time until it becomes resistant. At least this way the surgery may put it away for a long time and, if and when it recurs I can again fight with chemo! Anyway, sorry for the long blog, which I had not intended mentioning on here but I feel better now I've put it down so thanks for giving me the incentive to say all this. My surgery is scheduled for 12th December so have little time to think about it. Although it will be a chemo-free Xmas for me, it will certainly not be pain free!! Lots of love and many thanks Joyce. Hope you do really, really well in the future and enjoy life. I intend to!

    xxxxxxxxxxx

    Colette

  • Colette

    Hope the surgery will go really well.

    Monique x

  • Thanks Monique - will keep you posted. xx

  • Colette,

    good luck with the surgery. If there's the smallest chance that it will keep the beast at bay a bit longer I'm with you.

    Look forward to hearing from you post op.

    Chris xx

  • Thanks Chris - yes, even the smallest chance is worth taking. xxxxx

  • All the very best, Colette. Will be sending wishes and posivibes for you on the 12th. I'm sure we'll all be sending hugs

    Love Wendy xx

  • Colette

    It is Interesting to have your reply. I think looking at your location you may be with the same team as me.I went into surgery feeling it was the best option for me and I did not know if I would be minus my spleen or have a colostomy. However the findings surprised the surgeon and when he came to see me post-op he said 'You are perplexing me' !So I wish you all the very best, trust you have a smooth post-op recovery and I look forward to reading your blog after surgery to tell us how you have done.

    Joyce

  • Hi Joyce - I've got a good team - Oncologists from Clatterbridge and surgeons from the Liverpool Women's. I will be having op at the Women's on the 12th so know a lot of the staff, who are all terrific. Will let you know how it goes. xxxxx Colette

  • Dear Colette, wishing you lots and lots of luck for the treatment and the road ahead. I hope that all the treatment will help you to get to a more comfortable and healthy state. All the very best for the op ahead. We will be looking forward to hearing from you when you're back home. I know it was different in my case, but I had surgery and it wasn't as bad as I had been told it might be, I got over it well and have been well since then, so surgery can reach the parts that other drugs cannot reach, sometimes. Hope it's so in your case. I know the possibility of a colostomy isn't to be wished for but I know a couple of women who live really good, happy healthy lives after having had bowel treatment and colostomy.

    All the very best :-)

    Love Wendy xx

  • Thanks Wendy. I really do hope I'm doing the right thing and that it's a success. I know if I don't try I might regret it later on! They are arranging for a 'stoma' nurse to come and answer any questions I have about the colostomy so that should give me some reassurance. I also have a friend who has had one some time ago (which was successfully reversed) so I will also talk to her.

    xxxxxxx Love Colette

  • How nice to read these posts, it seems that surgery in some cases really is trhe way forward.

    Good luck to you have a wonderful Christmas

    LA xx

  • Joyce,

    That is so good to hear! Enjoy that chemo-free Christmas.

    Monique x

  • Joyce

    That is good news and so interesting.

    Here's wishing you a well-deserved happy and peaceful Christmas.

    Mary xx

  • Dear Joyce. It is a good news day! Well done for keeping on being positive. It cannot have been easy with losing your husband as well. You are indeed an inspiration :-) Enjoy a really good Christmas ;-)

    Love Wendy xx

  • Hi Joyce

    Such good news, really pleased for you. Everything must have been so much more difficult after losing your husband, it's amazing how strong we can be when we have to.

    Enjoy your chemo free Christmas and keep us posted.

    Love Linda xx

  • Hi Joyce

    Delighted to hear your good news. Progress in the treatment of ovarian cancer seems to be taking large strides. Thankyou for sharing the news of your treatment success

    Will share that chemo free Christmas with you.

    With love Suex

  • Wha a story! You have done wonderfully well to survive and thrive thru' all this. Coingratulations on being free of disease and long may it last.

  • What great news and a positive pick up for everyone. Collete I am without a spleen and have a temporary ileostomy from sugery in July. Not difference without a spleen but I do miss my gallbladder a bit (problems with fatty foods). I've had 4 different surgeries now for my ovarian cancer. I have mucinous disease that doesn't seem to respond to chemo and being otherwise youngish and fit they say they will keep operating is keeps appearing again and if it is amenable to surgical removal.

  • Thanks for your inspiring comments. This will be only my 2nd major op since my TAH in Aug 2009 so I am way behind you in the ops department. You have been through so much at such a young age (I am 58), but you have certainly given my confidence an extra boost - I WILL get through this!!

    Love Colette xxxxxxx

  • Dear Joyce,

    What an encouraging story. Thank you so much.

    Kind regards,

    Adele

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