Long Term Surviors - what was key?: For all the long... - OvaCare

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Long Term Surviors - what was key?

Lind58 profile image
15 Replies

For all the long term ovarian cancer survivors - what do you think has been key in your journey? We’re you healthy beforehand? Did you have a successful debulking surgery? Just curious to know your thoughts.

15 Replies
Coldethyl profile image
Coldethyl

I suspect a lot is down to being lucky that the drugs given had a good effect on their particular tumour ! X

lyndhurst profile image
lyndhurst

I was one of the lucky ones, caught early by chance, and healthy as exercised regularly, and had fantastic care from the team at my hospital

coksd profile image
coksd

I am a stage IV 14 month survivor not exactly long term but do research your options and get second, third opinions when your gut instinct tells you to. I underwent frontline treatment and had a good partial response I recurred just under 6 months and was deemed platinum resistant and offered a drug option for second line that only carried an 18% success rate I went to another hospital and got offered cisplatin that is working out quite well and showing I am platinum sensitive which will give me an option for a parb inhibitor. I also went private for the PDL-1 test which gives me an option for immunotherapy as my test shows I should have a response to it . I haven't had surgery to date but it hasn't been ruled out. Its definitely worth seeking other opinions there are other targeted therapies available not sure about funding or where you are living but it is worth looking into everything. Best Wishes xx

Hi Lind your profile doesn't say a lot so wondering are you doing research. However, I think the main thing is being kind to yourself. There is no scientific proof that any fad diet works or even Cannabis oil, So everything in moderation. We are all different and what works for one may not be as effective on another patient

Lind58 profile image
Lind58 in reply to

Hi Suzuki, my mom is newly diagnosed (she has her debulking surgery and first chemo. Scheduled for her second this week) just curious what some women feel attributed to their long term survivorship. Thank you for your reply.

MarieRB profile image
MarieRB

I think that chemo is still a very blunt instrument, but constantly being refined and more personally targeted: these developments all help! For me (surgery, chemo and Avastin in 2011/2012, recurrence in late 2017 and same chemo course (but not Avastin) from Jan - June 2018, currently clear but with some lymph gland issues, for me both mental and spiritual attitudes are vital. Each day is a gift - it's always so, but so often we don't recognise that until we're presented with a serious diagnosis, we just carry on with the expectation that each day follows another 'normally'. Fear can be a dreadful inhibitor, and needs to be looked in the eye and placed firmly on the back burner (sorry for mixed metaphors!). So if each day is a gift, then little treats to enjoy that one particular precious day are most certainly recommended! And don't let the weight of 'should' overburden you - ie, I 'should' clean the loos, I 'should' tidy up, etc. Sod all that. Whether you decide to continue working during treatment is entirely dependent on your own personality (obviously I understand that financial imperatives impact as well) - I continued working during my first bout, and was grateful I did so, otherwise I'd have spent many hours watching daytime TV and probably moped as well. However, now I'm retired, and was grateful for that whilst undergoing the second session last year - probably because I'm older, and possibly was able also to cope better because I knew what to expect. Hope some of this might be helpful. Blessings, Marie

Lind58 profile image
Lind58 in reply to MarieRB

Thank you for your very thoughtful reply. Best of luck

ZenaJ profile image
ZenaJ

Hi, I don't know how long a long term survivor is but I was diagnosed June 2013 Stage 3C and I'm still here with no recurrence. I've been told by hospital and friends that my positive attitude has definitely helped me but I'm not sure if that can have anything to do with it. I believe I have just been lucky. I did carry on as normally as possible all through the treatment but weakness stopped me doing a lot. It's probably a mixture of many factors.

All the best, Zena

bquinnx profile image
bquinnx in reply to ZenaJ

I agree Zenaj. Positivity is key but also life balance. I have had a bad year last year my mother had an asthetchic stroke..still in hospital 3 months and my brother was diagnosed in December with neck cancer he starts radiotherapy next week. I finished chemo in December Carbo 6 months and was told post chemo that I needed to go on Gemzar last week? I had gone in to discuss a trial drug with my oncologist to be told I have an "apron" covering my kidneys and need another 6 months of chemo. I was devastated but my Oncologist told me to scale back my committment to family Inc my mother which was so upsetting and to not be going online frequently as he said that he survival rate of his patients who did what he advised lived much longer and state of mind was my saviour. I'm have to agree..I am 5 1/2 yrs down the road with Stage 4 metastatic OC but only operated on once (debunking) still thankful x

ZenaJ profile image
ZenaJ in reply to bquinnx

That was quite a year. When you were told not to go online so frequently did he mean generally or on this site? I sometimes think I should leave this site as there is a lot of sadness but then I hope I can give others that are worrying or panicking a little hope, so remain to give some encouragement. (Not that I'm that good at that but I do my best)

Hope this year improves for you and the chemo goes well. xxx

bquinnx profile image
bquinnx in reply to ZenaJ

No Zenaj he was referring to googling randomly about OC drawing the negatives. Up to us how we control our mind and choices.

GSML profile image
GSML in reply to ZenaJ

Dear ZenaJ..Thank you for the hope and positivity..I am 41 and just recently had successfull surgery per my oncologist no visible cancer left .I am OC high grade serous carcinoma stage 3C. I had 2 chemos so far( Taxol/ Carboplatin) and I wanted to ask you how many chemos did you have before you stoped?.My white blood cells and neutrophils always drop after chemo so than I get filgrastim to make it normal and soo week.at least 1 week after chemo with abdominal pain.I am afraid if I go till 6 th chemo I'll damage my liver/kidney and or immune system cant even fight I'll be soo week..My Ca 125 came down to normal after 2 chemos and it was 7900 before surgery.Thank you for your time and information..I am thinking should I stop chemo or continue...

ZenaJ profile image
ZenaJ in reply to GSML

Hi there, My chemo was slightly different to you as I had mine weekly for 18 weeks. I missed 2 due to my blood count not being good enough. I also had a couple of blood transfusions during that time.

I was very weak but didn't realize it until I felt better. I struggled to climb the stairs but managed a couple of miles walk most days and tried to carry on as normal.

My advise would be to follow the recommendations of your care staff. They know what they're doing and seen it all before. I know for us it's a new thing and frightening but I followed their guidelines and came out of it the other side.

Eat as healthily as you're able and I didn't have any alcohol during chemo. I thought my body had enough to cope with. Try to keep your mind occupied so you don't just concentrate on your illness. Think positive. (easy to say)

I wish you all the very best with whatever decision you make but it would be a shame to give up before you've completed your treatment.

Best wishes, Zena xx

GSML profile image
GSML in reply to ZenaJ

Thank you sooooo much for your fast reply dear ZenaJ. I am eating very healthy.No carbs ,no sugar,no dieryes, no red meat..Also I am taking lots of herbal vitamins to boost my immune system. My oncologist wants me to finish chemos. I am just afraid after few more chemo sessions my organs will be able to remain functional..thank you again for encouraging words.I am trying to stay positive . At times I catch myself reading articles researching more and more. With Gods help I should recover completely.Sending you great energy.🤗🙏

meboo profile image
meboo

Good luck! My mum was in excellent health and had a really good response to first line (and a good response to subsequent treatment). However, each time it can’t back. We researched, tried different diets - she just didn’t have any luck - a blood clot causing a severe heart attack and the cdiff (both attributed to cancer and treatment). Eventually she just ran out of options. There are developments if you are BRCA but less if not. I’m sure in time a more tailored approach will be available, but at the moment it seems to be a single approach to all OC. I’m sure they’ll discover many genetic mutations and each will respond differently to treatment (as with breast cancer). So, for now, you’re lucky if your mutation happens to be the one that standard treatment works for. Best wishes to your mum

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