Looking for stage 3 buddies

I've been avidly reading everyone's post since I joined and I have to say ladies you are invaluable. Especially for the dark humour we all have to develop. 😆

It occurred to me that as there are different types of OC and grades, we all get offered different treatment options and sometimes it is hard to sift through to know what applies to me at the moment. I'd also like to connect with others that have the same type and stage of OC to know what their experience is. Drug options/complementary options/diet/lifestyle etc. I like to be well armed with info when talking to oncologists etc so would like to know what ladies in different parts of the U.K. are doing incase I'm missing out!

Are there any of you out there that are the same as me?

I've got Stage 3 high grade serous (More specifically Stage 3a1). It spread to my para aortic and pelvic lymph nodes the little buggar ☹️

I'm younger too - well fairly! Having just turned 47. Anyone out there in the UK that's similar?

I'd love to know if there are any stage 3 serous ladies out there...

Love to all

Em

X

31 Replies

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  • Hi Em,

    I'm a young, stage 3, high grade kinda person... 38 at diagnosis, stage 3 but don't know all the specifics (stage 3 was enough for me - no lymph node involvement, but that's all I know), and high grade serous. Also in the U.K. Finished treatment in Sept 2016 and have been NED since then.

    Yosh x

  • Very glad to hear you are NED! Which chemo did you have? I'm on carbo taxol. Also, what do they to to keep tabs on the potential OC? Is it CA125 or scans or what? Sorry, hope you don't mind me asking but I'm a questions sort of person!

    Em

    X

  • I was on carbo and docetaxel after an allergic reaction to paclitaxel. Now that I'm NED I have my CA125 checked every three months and a review with the gynaecologist. I had a CT scan at 6months post-chemo because I'd been having some symptoms, but the symptoms cleared up and the scan was clear.

    I don't mind questions - I'm a questions kind of person too!

  • Hi Em.

    I'm stage 3 high grade serous too. Was diagnosed last June, had the chemos and the op and am now in complete remission since January. I'm still on avastin till about September time. I've just turned 51. I went back to work full time in Feb.

    A couple of weeks ago I was given the news that I'm BRCA2 positive.

    Anything I can help you with or answer I'd be glad to do so.

    Take care. Xx

  • Hello! Thanks for that. I have the BRCA test looming in July and have the horrible suspicion it will be positive as already had a benign breast lump and aunt had breast cancer. I'll worry about that later though!

    Can I ask what chemo you had? Also what is the purpose of Avastin? I keep reading ladies are on it but I'm not sure what it is...

    Em

    X

  • Hi Em.

    I had the three weekly taxol/carboplatin with avastin. I have the avastin as it's included in the clinical trial I'm doing. It works differently to chemo. Chemo kills fast growing cells. Avastin cuts off blood supply to tumours. - something like that.

    I was surprised I tested positive for the faulty gene. There are targeted therapies specifically for BRCA mutations so there is a positive to be found if you do test positive.

    As I now have a greater chance of developing breast cancer, I'm being monitored more closely with mammograms and MRI scans.

    Xxx

  • Thanks! It's all joy isn't it!?

    X

  • Lol. It certainly has its moments. Xxx

  • Hi Em. Yes, I am a stage 3b high grade serous as well. I am older than you, but would be interested in comparing treatments. I have had six sessions of Carbo/Taxol and as there were traces of cancer still evident am now having Avastin. Next week will be my thirteenth treatment of eighteen. With a bit of luck, should be finished by August. My last CA125 was nine, and the last scan showed no evidence of C, but I am not complacent, I know what a little b this disease is!

    Jenny

  • Hi. I'm on 6 zaps of carbo/taxol but not yet been offered anything else. I'm assuming it will depend on what they find when I'm finished. (I'm half way through.)

    Did they suggest all 18 initially or was it 6 to start off with?

  • Hi Em, On my post op scan (I had already started Carbo/Taxil) an area of C was seen. That was when I was offered Avastin to run concurrently with the C/T. I finished the chemo last October and have continued with Avastin alone. All being well, I should finish it in August, Avastin seems to always be given over 18 infusions, given every 3 weeks.

    Under NICE guidelines, you need to have an area of C cells greater than 1cm to qualify for Avastin, so possibly you won't need it. Have you had a post op scan?

  • Hi Em I'm older than you in my sixties. I was stage 3b mucinous. So not the same. I had 6 sessions of carbo/taxol, finished in November 2016. NED since then, check up with oncology team every 3 months, CA125 test and if I feel anything is wrong I can contact them at any time. It's strange having this new "normal" but am getting used to picking up my life and am determined to be around to cause havoc for a good while yet.🤓

    Best wishes D x

  • Glad you're NED! Do they offer you routine CT or MRI scans to keep tabs or would it be just if CA125 is raised?

    Em

    X

  • CA125 is the normal test. They would only give me a CT scan if the numbers doubled or I felt something was wrong. I have taken organic Tumeric as a supplement since finishing chemo. Take exercise but I haven't radically changed my diet.

    D

    X

  • Hi em i am in my late seventys with high grade serous mucinous stage 3c no chemo on tomoxfin 40 for 5 years.best wishes.mary

  • Hi, I'm really old - nearly 62! I have high grade serous carcinoma (3C) - the tumour was on my omentum. Diagnosed in August 2016; three rounds of Carbo/Taxol then debulking surgery in October. Didn't have the full works as they found a tumour threatening the blood supply to my stomach - they just removed my omentum and had a lengthy rummage in my innards to see if there was anything else. Three more lots of Carbo/Taxol now I'm coming up for the seventh of eighteen cycle of 'maintenance' Avastin. At my last scan in February I was told there was no evidence of disease.

    I read a lot about alternative and complimentary treatments, but feel, for me, the right way is what the medical profession recommend. I'm not afraid to ask questions - more than once if I have to - until I feel I have the honest answer. This forum is invaluable, but I always advise steering clear of Dr Google, although he can take up hours of my time if I let him.

    I haven't changed the way I eat and I still enjoy alcohol, but I also get as much exercise as I can - not the going to the gym type, but walking, riding, dancing and Pilates. I try to stay as positive as I can with the help of my family and friends but also allow myself the time to be cross with the (I'm sorry) little malignant shit.

    Keep reading all of the posts, there are so many crossovers in all the different types of OC.

    Best wishes, hope all goes well for you, Ali x

  • Thanks for your info. I too believe in the conventional medicine route but am interested in diet/lifestyle as a back up to it. Once I've stopped feeling so tired on chemo I want to up my fitness levels but I'm not a gym bunny so walking etc will be my thing!

    Em

    X

  • Hi em

    I was diagnosed high grade serous 3c in October 2016. I've had 3 carbo/taxol, then debulking surgery and now having my 6th and last chemo this weds. My CA125 has reduced to 8 currently and am feeling well. I hope I'm in remission after my scan in around 3 weeks time. I will then be having Avastin every 3 weeks as maintenance therapy.

    It's tough at the beginning because you feel like you are in a whirlpool of emotions, but it does get better once treatment starts. If you need to know anything just shout

    Marian xx

  • Hi Marian. Thanks for replying. Strange how so have the op first and then chemo, whilst others have the op in the middle. It must be tough dealing with the op in the middle of it all. I found my body's reaction to the op was horrendous (severe nausea for two weeks, shakes etc) I can't imagine dealing with chemo too!

    Can I be really rude and ask how old you are?! Message me if you'd prefer to be ageless!

    Em

    X

  • Ha, I'm 57 yrs, still feeling pretty cheated

  • It's not over til the fat lady sings. i was thinking a few days ago how in some ways it would have been nicer to have had a longer time of blissful ignorance and have found out later. We were planning a big family holiday this year as hopefully my eldest will be off to uni in Sept. That's obviously not on the agenda now so I feel quite sad that chance has been taken away.

    Still, hopefully starting the OC merrygoround earlier will mean I can be around for longer to annoy him!

    X

  • Hi Em

    I was diagnosed with 3c serous carcinoma in September 2016 with a Ca125 of 9400 at the age of 55. I had four and a half litres of ascites drained and then I started chemo in October. I am taking part in the Icon 8b trial. I had 9 weeks of weekly paclitaxel and 3 rounds of carboplatin and avastin before Christmas and then surgery in January. They think that the cancer probably started in the fallopian tubes and then spread to the ovaries. The debulking surgery removed most of my innards and my oncologist noted that I had evidence of "burned out disease" which meant that the chemo was definitely working. I restarted weekly paclitaxel and three weekly carboplatin in February and I have one paclitaxel dose left this Friday. my ca125 is now 130. I will then have 3 weekly paclitaxel for 9 months.

    I'm happy to answer any questions if that helps and wish you all the very best with your treatment.

  • Hi Em, I'm 53 and was diagnosed with OC and went into my peritoneal wall. I'm stage 3c high grade serous adeno carcinoma.. I had 4 cycles of carbo/taxol then debunking surgery and omentectomy last Dec. I was diagnosed end of Aug. last year. After my surgery I had 2more cycles of carbo/taxol with avastin and now just the avastin on its own until October. My ca 125 is now down to 6 from 341 when I was diagnosed in Aug. When I had my 1st checked up after my treatment in March they found out that I had 2small nodules in my peritoneal wall hence the avastin maintenance as it stopped the blood supply and spreading of the disease. So now I have the avastin every 3 weeks and so far so good except that the side effects are muscle and joint ache and the ball and heel of my feet are so painful that sometimes it's hard for me to walk far.. Otherwise everything is fine.. I rather have that as long as I'm alive !!! I just take paracetamol for the pain and off I go!! Lol take care..xxx

  • Hi Em

    I'm 54 and stage 3b high grade serous, diagnosed in December 16.

    I had 3 cycles of carbo/taxol then debulking surgery with carbo taxol starting again 3 weeks after surgery. I have round 5 tomorrow - I have to go in as an inpatient as I'm allergic to the taxol which they manage by giving me huge amounts of steroids and infusing over 24 hours. The allergy is a nuisance but at least it's working and my surgery was far less invasive than expected because the chemo had already done some of the work.

    I haven't really made any lifestyle changes during treatment, particularly not diet as I lose weight in the chemo week and need to catch up after that. I'm not drinking but didn't drink much before. I have a desk based job and I drive to work so after treatment I am aiming to get more active by walking more as part of a walking group and also walking to work a couple of times a week. I'll also look at diet - we tend to eat well, not to much processed foods but I'll rein in the cakes and biscuits. I think stress is also a big thing and I'll aim to manage stress much better and aim to focus on the happy hormones.

    I think there are lots of stage 3 serous ladies out there as it's one of the more common types.

    Andrea

  • Hi, I'm stage 3b high grade serous. I was diagnosed following my surgery in June 2013. Surgery was followed with 6x carbo/taxol, then NED. Unfortunately I recurred in August 2014 in pelvic lymph nodes but as it was small opted four watch and wait. I started 2nd line chemotherapy in March 2016, completed August 16, didn't clear it all, but what was left was cobsidserably smaller. Have been on watch and wait since then. Oncology clinic tomorrow for results of recent CT scan. All the best. Ann x

  • Good luck for tomorrow xx

  • I too have stage 3 clear cell carcinoma diagnosed in 2014 when I was 49 years old. Had been feeling grotty for few months with pain, shortness of breathe, loss of appetite and a swelling abdomen. Was admitted via A&E where diagnosis made and drained of 8 litres of fluid. Discharged two weeks later and had 8 sessions of carbo, taxol and Avastin followed by debulking and 6 more chemos followed by a total of 18 avast ins.

    For me I had my surgery in the middle of chemo because it was unclear whether I would be able to have surgery when first diagnosed. I responded better than expected to chemo so they were able to operate. Unfortunately the surgery did not manage to remove all the disease but did well enough to give me 20 great months without treatment. A few weeks ago I was told it had spread and I start my second line of chemo tomorrow.

    I just wanted to mention that for me a strong family history did not equate to a positive BRCA result.

    All the best and good luck Ann for tomorrowx

  • Hi, I am 3c high grade serous cancer. I guess by what I have been reading I have been diagnosed nearly the longest time ago. I found out January 2013. I have had two operations 3 rounds of chemo. One round of radiation and at the moment I have rising CA125. They can't find any active tumors so the radiation therapy has made me stable. I am generally healthy and well at the moment. I can only say to you look after yourself and try not to dwell on this monster too much. I found a really good counsellor and walk every day. I hope any questions you have put out for one of us to answer. I hope you can see that this is a journey ( which use to drive me insane) but I guess this is the only way to describe it. Good luck. I was 52 when diagnosed. Still not as young as you but it means you have a greater chance of fighting this monster. Sharon

  • Hi Em

    I'm Stage 3 high grade serous - diagnosed in March 2015 at age 52, surgery and first round of chemo in 2015, recurrence in Sept 2016 and after a "watch and wait for symptoms" have just restarted chemo. Look forward to swapping information. Best wishes Dawn x

  • Hi. Thanks for posting. Hope the chemo does the job. Just a question but how did you know it had reoccurred? I had no symptoms the first time so am worried I won't know if it comes back. Was it just CA125 tests?

    Thanks

    Em x

  • Hi Em

    Yes increased CA125 (which was being monitored every 3 months) from about 10 to 56 in Sept 2016, we then repeated the test a month later, risen to 84 so then had a PET and CT scan which showed 3 small visible tumours. I had absolutely no symptoms and fit as a fiddle. So decided to watch and wait for symptoms. I began to have a few bowel symptoms in Feb/March 2017 and decided to start the second line of chemo (first one on 7 April and just had second treatment). Given I am so well generally and we are aiming to manage tumour size and symptoms, I am just being treated with single agent carboplatin (not too many side effects and only very 3 weeks so for at least 2 1/2 weeks in every 3, I can fully participate in work on the farm). It's a difficult balance - quality of life vs more aggressive treatment - that does seem to be part of our difficult decision process.

    Of course the CA125 doesn't seem to work for all women, but seems a good indicator for me.

    Best wishes Dawn x

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