Disheartened

Hello ladies, this is my first time posting & I suppose I'm just hoping for a lil support. I was diagnosed with Ovarian Cancer Jan 12 months after they had found a clot in each of my lungs. At end of Jan I was put on carbo/taxol for 4 cycles followed by surgery in June (full hysterectomy, removal from stomach wall & appendix) I started back on chemo in July for another 3 months. I finished chemo 6 Oct, had ct scan & visit with oncologist 2 weeks later wher I was given the 'cancer free' & told I was in remission. My levels in Oct had dropped to 9 which was fantastic considering they started of at 1469 in the Jan . I went for gyne check up in Feb & my levels had gone back up to 75, have had ct scan & met with oncologist last thurs to be informed my cancer is back & the I am starting treatment again on thurs 18 May.

Just wondering has anyone else had it come back & so soon after going into remission?

Rik

11 Replies

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  • Hi love,

    I'm sure some of the other ladies can help more than myself,I just wanted to welcome you,but I'm sure you would rather not be here,however,there are some fabulous supportive ladies on this site.

    It's not all doom and gloom,there is so much and so many treatments these days and there will always be someone on here to help,

    Lots of love and best wishes to you,

    Carole xxx

  • Thank you Carole

  • I am sorry this has happened but your oncologist will have a plan of treatment for you and hopefully you will get longer remission after this one. This illness is strange and quirky so anything is possible. I would suggest you use any support facilities in your hospital or near you

  • Thank you Suzuki

  • Yes, I had surgery in June 13, followed by 6 cycles of carbo taxol. Scan end of Dec 13, seen by cons Jan 14 told NED. CA125 was back in normal levels at 19 having been 1680 at start. Bloods done again in August, were 41, promoted a CT scan, saw consultant in September and told that it was back. I didn't rush straight into chemo though, they were small and I opted to go on watch and wait. I didn't start chemo again until March 2016.

    Good luck. Ann xx

  • Hello Rik, sorry to read your story, it is really really hard to hear that it has come back soon after end of treatment. Same happened to me after 9 months, I was devastated. My oncologist suggested further surgery which I had, then more chemo, however this still didn't keep it away for very long. I'm now on avastin plus a chemo tablet and although it is still there it has been stable the last 6 months or so. I guess this is not maybe quite what you want to hear, it is certainly not what I hoped for when starting out on this journey, but in spite of it all I am still here and doing a lot more now than I was during first line chemo. Which chemo are you having this time? Hoping you will cope well with it and be able to enjoy the in between good days - lots of treats and little things to look forward to are essential! Good luck,

    Madeline xx

  • Hi Rikashea, I am in the same boat as you. I was given the all clear last Oct, did six cycles of taxol and carbon last Jan 2016. Had the op in July. Unfortunately got word last Wed, it has reactivated. I have been informed that I have to have chemo and radiation. I will be seeing my oncologist in the next week for the plan ahead. I know it is awful shock but I have faith in treatments available. You will get good support in this web site. Best wishes.

  • Yes although slightly longer NED - I finished treatment end of July 2016. NED as at Aug and CA125 of 14.

    CA125 rose in Nov and Dec it only minor niggles which weren't taken seriously. CT incinckusive

    but Symptoms galore early Jan 2017

    CAl125 to 2292 as at Jan 25th and confirmation it was back in lesser omentum (the bit that's not removed - they take the Greater omentum), abdominal wall, thickening of intestines, ascites (5.3 litres drained), blood clots on aorta leading to both lungs.

    I'm platinum resistant and am on Weekly Taxol which is going ok.

    I found the emotional part harder this time round and went through the denial, more denial !, Anger and finally acceptance after a small meltdown - and we are all entitled to those occasionally!

    There is a plan for you, talk and ask questions of your oncologist as you need to

    Thinking of you

    Clare xx

  • Thanks everyone for your replies. It does bring comfort knowing that this can and does occur and that there are still ways to treat it.

    I started my treatment on Thursday, carbo/gem 1st week of cycle, gem 2nd week, break 3rd week, so 3 weeks in a cycle and I have to do 3 of them.

    It was a shock when they told me a couple of weeks ago, as I wasn't expecting that news, cos I was feeling fine & back to work and all......

    I suppose unlike you guys I don't really know what's going on, only what they tell me, I dont ask any questions, as for me I'd rather not know the ins and outs, I suppose you could say I just play ignorance, but for me that works. My oncologist in the Mater & his team are fantastic, I couldn't fault them in any way, I trust them , i'm in their hands now, my plan is made out for me, only this time I will be working alongside my chemo, mon, tues & wed & then off thurs & fri. I may not be able to last but work are aware of the situation & very supportive of me. Plus I'm going to try & look after myself a lil better this time round as in trying to eat properly, (got such a craving for all things sweet when chemo finished last October), & exercising a lil more, as in walking. I let it all engulf me last year as I didn't know what to expect, but this time round I feel a lil more aware of what's to be expected, and what I can and can't do & the days I can & can't do it.

    The only thing I found really hard last time round was that when the chemo stopped last October, I felt that was it, I was on my own to deal with this & that was hard. I don't normally tend to look up the internet for Ovarian Cancer, but I wanted to know how to support myself & what to do, what good foods to eat, what I could do to help maintain my 'cancer free' status, but found there was nothing really there. I know there is support groups out there, but I haven't found anything around my area and those that are are during the day & don't help those that are back to work. I know they offer you hair and beauty days when you're going through your treatment, but was thinking it would be nice if they could get dieticians on board to help you with diet after treatment & ways to help you move on.

    Anyways......enough about me, thank you for sharing your stories with me, it is a tough time for us all, but I'm glad I came across this forum, where you can talk things through.

    I'm from Dublin, are people on here from Dublin also, or all over Ireland. Do you ever meet up ? I see you've had a couple of coffee mornings, but other than that do you ever get to meet up & chat ?

    Take care everyone xx

  • Hi I am from county clare and I met one other lady with ovarian cancer at the time of my treatment. I have found the patients day and the one coffee morning I attended very good.I will be attending the oncologist on Monday evening for the plan ahead. Take care enjoy the sunshine.

  • Hi Rikashea,I am going on the same chemo plan as you and also 10 days radiotherapy. I won't be starting chemo until July. I am having a holiday first. I hope it will go well for you. Keep in touch .

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