Clear Cell Survivor 3 yrs

[gancman1]

Looking for long term clear cell carcinoma ovarian survivors.

[kb68]

I was diagnosed with clear cell grade 3, stage 1A in 2012. Surgery and chemo and so far no recurrence.

Hope that helps.

Kate

[raesposito20 in reply to kb68]

Hope you are doing well. I was wondering if you went for 3 or 6 cycles of chemo if you don't mind?

[BettyGirl]

I was diagnosed CCC stage 1a, 2014 - surgery and chemo so far all scans and check ups looking good. Found it very difficult to get information on CCC. Be interested if you find any useful information

[TinaB1 in reply to BettyGirl]

Hi there ..

Ovacome's leaflet may help. It's very informative,

ovacome.org.uk/media/14670/...

[raesposito20 in reply to BettyGirl]

Hope you are doing well. Could I ask if you opted to do 3 or 6 cycles?

[Franceso]

Hi. I was diagnosed with stage 4 clear cell ovarian cancer April 2013. Debunking operation followed by carbo/pax chemo 6 sessions. Avastion added every 3 weeks for 12 months which finished October 2014. Cao125 normal since op. Feeling great since then. Just finished 120km camino in Spain !!! Are you in the same boat. ??? Frances

[Jingyu in reply to Franceso]

wooowooo! your story is inspiring! I am stage 3 clear cell and I rarely see stage 3 and 4 survivors ..... thank you for brightening my day!

[Jingyu in reply to Jingyu]

I just realised this is an old post.... i hope you girls are still NED !

[lesleysage]

Hi, Diagnosed with stage 3c CCC in May 2011. Full abdominal hysterectomy and lymphadenectomy of a couple of lymph nodes aligned to the ovaries. 6 cycles of 21-day Carbo + taxol, which finished October 2011. Recurred in Jan 2013 with two more tumours in the remaining part of the lymphatic system which drained the ovaries etc. which hadn't been removed at the first surgery. One tumour close to the aorta and the other close to the renal artery. Addenbrookes felt it 'too risky' to operate, so GP supported by request for second opinion sought and team at West London Gynae Cancer Unit in Queen Charlotte's successfully removed them both. Back to Addenbrookes for more chemo - this time 'dose dense' carbo + taxol (i.e. one-and-half times the chemo dose of 21days delivered in 3 successive weeks for a full 6 cycles plus fortnightly Avastin. Finished that chemo in Aug 2013; next CA125 on this coming Monday so by a week tomorrow, should know if am still in remission or it's back. xx

[devotedtolife55]

I already had another cancer when a locum at my GP's surgery said I had an Ovarian mass. My GP could not have been less helpful so I walked into Addenbrookes A&E with a massive 26cms bulge across my pelvis. Addenbrookes were marvellous, I was admitted immediately, seen by my surgeon one day and fast-track operated on the next. It was found that I had my original cancer in both ovaries and clear cell stage 1 in one. I had to have a special infusion to control the original cancer whilst I was being operated on for the clear cell. The mass burst during surgery which meant it went from a 1a to 1c. My CA 125 was 12 at its' peak. I had 6 sessions of Carbo only.

All this happened 3 years ago and I am currently still stable with my original cancer and there is still no evidence of recurring ovarian cancer. My CA 125 is now 7. If I had not had the 26 cms mass I would not have known the Clear Cell was there.

I have changed my GP but it is Addenbrookes that are now in "special measures".

Hope my reply has been helpful for your survival information.

[ladygooner-uk]

Hi there, I was diagnosed with clear cell stage 3a oc in 2009, can I help?I have had 2 recurrences both treated with surgery, last one was last year.

Sue

[Mama-J in reply to ladygooner-uk]

Hi I was wondering if u could tell me the symptoms of your recurrences? I have never had an elevated ca 125 so further diagnosing can be tricky

[ginger69]

Hi there,

I was diagnosed as Clear Cell 1C in September 2011, and had the gold standard treatment of carboplatin and taxol. I have just finished my second treatment in feb/march 2015. of carbo/gemcitabine with avastin on maintenance but recently have had this treatment stopped (avastin) as I was deemed as having progressive disease with elevated CA125.

Still feeling positive and strive to be ahead of the crowd.

Any questions feel free to contact me.

I hope you are okay.

Love janette xx

[bryn]

Hi , Diagnosed in 2011, surgery and chemo. Approaching 4th year of remission feeling on top of the world. All Best Wishes ,Bryn .

[Beulah3]

Diagnosed in 2005 at stage 2C. Standard chemo treatment, then took a "wait and see" approach. Thus far, no recurrences.

[ForMyTwin]

Bryn and Beulah3

Your history of no recurrence is amazing! Do you have any suggestions for the rest of us? Do you have diet or lifestyle or whatever regimens that were started after diagnosis and you swear by? Are you particularly slender, etc.,

My twin sister has 3c uterine cancer with a clear cell component. I've been doing what I can to find information for her. Anything you share is much, much appreciated and definitely considered sacred gold.

Very best to all of you beautiful people.

Most Sincerely,

ForMyTwin

[lesleysage in reply to ForMyTwin]

Dear ForMyTwin,

I've no 'magic wand' but my GP's advice of "your job is to grow healthy cells" helps me focus daily on diet, exercise, rest, moving away from people who deplete me/exhaust me emotionally, move towards those whose glass is always 'half full', have warm humour, are fun, inspiring and encouraging to be with and who accept I a down-to-earth way the challenges around balancing my very own well-being, caring for my health and listen to and respect the choices to be made over medical care.

My luck is that I wasn't diagnosed with the stage 3c CCC until just after my 65th birthday & am self employed so I have gradually reduced my earnings and can use state and saved pension (plus husband of 46years now) to cover living costs. If I was younger and needing to work, the challenge would take one different shapes, I'm sure.

Hope you can pick out a few principles to help your twin find her own kind and compassionate solutions for this very unwanted, unplanned happening in her life (we have all had others in our lives but cancer has the power to really kick you in the guts....) Hang on in there and don't ever give up...I have a cartoon of a heron trying to swallow a frog, but the frog has tightened his front legs around its throat so both are living! The caption under it says, "Don't give up...ever". Warmest wishes to you both.

[ForMyTwin in reply to lesleysage]

So sweet. Thanks very much for your thoughtful reply!

[daisies]

Hi. I was diagnosed with CCOC Stage 1 in December 2010, had the mix of carbo & taxol and had 19 months clear before a surprising recurrence. I am in the middle of 4th line treatment for recurrence [which is metastasised into peritoneum & liver (& I suspect at this point kidney), also plural effusion]. The periods between recurrences are getting shorter now.

It is great to read so many positive comments from those who had NED at present - gives me hope.

Daisies

[Lily-Anne]

I was diagnosed stage 1C grade 3 clear cell and grade 1 serous cell in 2012. After 3 years NED have a recurrence, MRI due on 7th and oncology on 13th. Reading some of the above stories it is really interesting to see the diversity of treatment and experience. Hope is for us all daisies, saying a prayer for you, it sounds like you have been through a really stressful time.

LA xx