Would like to hear experiences of anyone who has had multiple chemo's over a number of years. Am on 3rd line chemo..

[Meryl]

I've had the full surgery. Chemo worked well with first two courses, this one is on track also to get me into remission for the third time - each time CA in single figures by the end of the course. Apart from second line taxol problems, few side effects so very lucky. But as the pattern of chemo/remission emerges, and my oncologist says I can have 6, 8 10 courses over time (until such times as it doesn't work any more) I would like to hear about others experiences of multiple chemo courses. How many have you had, does the remission period get shorter, how have you coped emotionally with gradually running out of options for more treatment. I know everybody is different and you can't crystal ball gaze with this disease but I like to be prepared for the reality of OC. Meryl XXXXXXXX

[BusyLizzie]

Hi Meryl,

I am on first line chemo still, but would like to hear what remission times have you had from 1st, 2nd and 3rd line chemos? Also what stage were you diagnosed at - for me it was 3c. Also did your CA125 come down to normal levels each time?

Love Lizzie

X

[PatsyH]

Hi Meryl

This isn't an answer as such to your question - I just want to say that you have voiced exactly the things which go through my mind, which in a nutshell is "After surviving OC for six years how much longer might I be able to stay alive?" I'll soon be 65 and I want to reach 70 at least, please God.

After diagnosis of stage 3 OC in 2005 I have just finished my third lot of chemo, having had remissions of 3 years and 18 months. Previously I had Carboplatin + Taxol, this time just Carboplatin and on the whole have tolerated them well with my CA125 going back to normal levels, although this time I dont think it has reduced quite so much. I see my Onc in a couple of weeks after a post-chemo scan so will find out then how well, or otherwise, the treatment has worked.

So now - like you - I wonder how many chances I might have to be treated effectively when the OC inevitably creeps back, and will each remission be shorter than the last? Basically how long might I have until I fizzle out! I keep very busy and have my elder daughter's wedding in 2013 to plan for, but inevitably I get down times when I feel sure my time and options are dwindling fast. At these times I see a counsellor at my treatment centre, who helps me get things back into perspective, and it is very cheering when one reads of those who have survived multiple chemos over many years.

Even so, after six years of seeing my oncologist every three months I now really worry before every appointment and prepare myself for the worst, in case the time has come when I hear those dreaded words which tell me nothing further can be done.

Meanwhile, apart from feeling very tired a lot more quickly than I used to, I carry on with life as normal, but with a few embellishments. For instance, I have AT LAST booked to see Bob Dylan live on stage. He has been an abiding love since my student days 48 years ago and I was so thrilled when my booking confirmation came through I actually cried!

The very best of luck to you and I hope we may be able to still exchange good news in many years time.

Patsy

[wendydee in reply to PatsyH]

Hi Patsy! Wow! Keep on fighting, girl! I saw Bob Dylan a few years ago ....quite a few, come to think of it! He did a fab encore when he had a really great sound, much better than his main sat. Then at the end he introduced them, he had Carlos Santana and Eric Clapton on guitar Chryssie Hynde on vocals. Only Sir Bob could command that sort of respect! I will send all my positive vibes to you ladies who are going through extended treatment and hope that each day brings new hope to you. It sounds like you've got a real exciting time planned, you will be around for a lot longer yet, I hope and pray!

Love Wendy xx

[Meryl]

Hi Lizzi and Patsy

First to answer your questions Lizzi. I was diagnosed with 3c in May 09. After both courses of chemo (both Carbo/Taxol) remission was six months but the second course was a trial with another weekly trial drug. Oncologist says trial must have done some good because second remission was same as first and its almost always shorter. CA came down to 11 first time (from about 3000) and 6 second time from just over 300. Now on Caelyx and after first two CA gone from 211 to 60 - so looks promising. Thankfully tumours still more or less confined to the abdominal cavity and quite small.

When I was on my first line chemo the questions I couldn't bring my self to ask anybody was "what options next" and then "what options after that" ......I just wish somebody could have worked through all the options for chemo.with me - even though you never know which would be best for you, it would have given me a lot of confidence that I could possibly go on for a few (hopefully) years rather than face a 'blank wall' at the end of first or second line chemo. Even if the confidence was misplaced it would have helped motivate me at times.

Like you Patsy I started aiming for things to achieve. I want to get to 65 next year. I wanted to see my final grandchild (he arrived 9 months ago - that makes 5 in all), and now I aim to see them grow up for as long as I'm able. My partner and I have travelled extensively every time I'm in remission. Those are the good things I concentrate on but like you at the back of my mind is hearing those words that nothing more can be done. That's why I asked the question, like you I would really like to hear from anybody who has had multiple chemos and if it would he helpful to us then it would be probably helpful for lots of other women as well.

Thank you both for your responses. Bob Dylan - fantastic, have a great time Patsy and good luck Lizzi you've got lots of positive opions in future.

Meryl XXXXXX

[Lindy4 in reply to Meryl]

Hi Meryl

thanks for asking this question which echos what a lot of us feel, it cant have been easy for you.

For answers to your question which may help, there are a lot of women on the American Ovarian Alliance website who have experienced exactly what you are talking about and if you look many of their stories do inspire. Here is the website link in case you/ any others here on this forum werent aware of it. Ive found it a very useful source of info ( so long as you always check out anything you want to act on with your Oncologist./ Dr first)

Ovarian Cancer National Alliance Support Community - Inspire

inspire.com/groups/ovarian-...

wishing you all the very best

Lindy

[nikki9]

i dont know whether this is any help but i read an article whereby a combination of two chemo drugs were tested to help to prevent oc reoccuring, they were cisplatin and etoposide it has been tested in holland might be worth asking about good luck keep positive love nikkixx

[Hidden]

Hi Meryl,

I had my op in july 07, and 6 sessions with carboplatin ( and 2 lots of taxol until it was withdrawn). 12 months remission then back on carboplatin x2 (had an allergic reaction) so 6 lots of Caelyx, which was toned down as it made me so bad, so it didn't work as well as it should have. After a holiday and a stomach drain for ascitiesI had cisplatin X6 which gave me 3 months remission. This year I had 6 sessions of topotecan (has to be given 5 consecutive days every 3rd week!), which stopped working after 3 sessions. By the time I started my current treatment my CA125 was 1966 and I had to have my lung drained! now on a combination of treosulfar and gemcitabine which has got my count down to 262 after 2 sessions. CT scan tomorrow(after 3 sessions). The drugs are not usual OC drugs, as I've had all the NICE recommended ones now. As you say, how long can it go on... it still hasn't spread from within the cavity, so will it be the poison from the chemo that gets me in the end?

As has been said, when I'm well, (and no side effects from this) we go away as often as we can in our Motorhome, and we've fitted in a couple of cruises too.

Here's hoping for another remission so I can see my new grandaughter in Los Angeles!

[Meryl]

Hi Graybadger

You have been through the mill over the years - but your obviously a fighter and I hope I can remain as strong as you. Thank you so much for sharing your experiences with us and reminding everybody that although the treatment might be rough you can still do so much when in remission. Just on the Caelyx, I've had 3 treatmens so far and no side effects whatsoever which is great for me and I just wanted to reassure others that if that's what they go on at some point they won't necessarily have the problems that you did. I do hope you get to LA to see your grandaughter. Since I've been diagnosed I've been to NZ to see my grandchildren once and am off again after christmas, it somehow makes all the treatment worthwhile. Take care and of course good luck and keep fighting. Meryl XXXX

[AngelaAbell]

Hi Meryl

Thanks for the very useful question. Many of us are in the same position so it i good to hear different experiences. I had 3c OC diagnosis New Year 1998, had surgery and my first round of chemo. I then went in to remission until the beginning of 2010 and had almost forgotten about it. I then had another 6 months remission and ms now just coming to the end of a round on Caelyx - with few side effects. My CA125 is 395 but that is a great improvement from the beginning of the year and U am hoping that it will be lower after the last treatment and the ncologist is hoping for another 6 months remission. At first I felt that I didn;t want the constant round of treatment but I have felt so well and been able to do so much that at the moment I will settle for that. My doctor and the oncologist both say that what the future holds is difficult to predict - dpends on the individual etc etc.

I love all the plans that people have made. It is so encouraging to hear that ladies are really enjoying themselves despite difficult circumstances.

Angela xx

[BusyLizzie in reply to AngelaAbell]

Hi Angela,

Thanks for sharing your details. May I ask what stage you were diagnosed at. I am 3c.

Love Lizzie

X

[AngelaAbell in reply to BusyLizzie]

Hi Lizzie.

I was 3c whne diagnosed in 1998/

love Angela

[BusyLizzie]

So you had 12 years remission after being diagnosed at 3c. That is superb. I am sure it does not seem so now with it's return, but for us on first line chemo it gives us something to aim for!

Any tips?

Love Lizzie X

[sez1]

hi meryl i was diognosed in nov09 age 33 i had full hyterectomy and 6 rounds of carbo/taxol this worked really well and was in remmision in may 10 this only lasted 3 months before ascites built back up and i then went on a weekly dose of carbo/taxol ididnt have many side effects so i had 30 doses !!! i was then put back in remmission in march this year , although i got a bit longer this time the cancer has just returned again !! 6 months on i have just had my first course of caelyx so hoping that a new drug might do a better job!! i have three small chilldren and everyday im just willing them to grow up because the thought of leaving them tears me appart but they also give me the strength to battle through whatever is thrown at me . thing s are changing all the time and new drugs are coming through so hopefully being young fit and determind will keep me going no matter how quickly it keeps coming back !!good luck to alll of you out there battleing this horrendous disease xxx

[Meryl]

Hi everybody

What a fantastic response to my question. Everybody has been so brave and positive no matter how many treatments and side effects we all seem to keep going and hope for the best. Thank you so so much ladies for sharing your experiences. Meryl XXXXXXXX