It’s back again: I was diagnosed with 3c ovarian... - My Ovacome

My Ovacome
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It’s back again

kaza1
kaza1

I was diagnosed with 3c ovarian cancer six years ago

Now it’s stage four and in my spleen

I have had four lots of chemo in this time the latest one I had to go down to 40% as I wasn’t tolerating it well

So consultants have stopped my treatment as ca-125 was going up and have now given me some hormone blockers to try

I’m really frightened as chemo has always worked in the past so is this the end !

12 Replies
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Chemo never worked for me and I decided to get a second opinion. To speed things up I paid for a consultation at The London Clinic and was referred to the UCLH Research Facility and am now on a phase one clinical trial. When conventional treatment stops working you qualify for clinical trials that are often not open to those who are chemo sensitive.

You can ask for a second opinion and as Neona has said there are lots of clinical trials to consider too! I’m not sure where you live but there are different trials all over the U.K. and indeed the world!

Google OC clinical trials and you will get a huge list take this to your oncologist and ask their advice too x

Don’t give up and be your own advocate

Sending you hugs

Bev xx

Hi

So sorry you’ve found yourself back on the boards. Are you on Letrozole?

I had a similar pattern in 2017. Cancer returned in May. I started 6 cycles of carbo. Finished in October and told unlikely to see Christmas. In September this year started Letrozole had bad reaction to it so interested to see how you get on

Are you planning a second opinion?

LA xx

kaza1
kaza1
in reply to Lily-Anne

Thank you lily Anne I wasn’t going to get second opinion the hormone blockers are called Anastrozole what I find odd is that they’ve always said my oc wasn’t hormone related x

I spent 6 months taking hormone blockers in 2013, then another 18 months in 2015 - 16, then again for the past year. There are several of them. Some have worked better than others for me, but I haven't so far felt it was the end. I have a scan on Monday, & onc appointment the following week, to find out how I'm doing now. I don't know how much longer I'll be able to stay on hormone blockers, & chemo hasn't worked very well for me so far, so I don't know what next. Perhaps I'll have to ask if there are any suitable trials when the Letrozole I'm taking now stops working. I've never had a bad reaction to hormone blockers, & they are easier to cope with than chemo, you can get on with your life. I hope they work for you. Di

kaza1
kaza1
in reply to Di16

Thank you Di16

Last start of 5th line chemo 10 days ago... in just over 2 years ( age 71, stage 4 high serous) has done for me... now def thinking quality over quantity of life and getting my head around it, I can't do anymore....

Hope you find a better path through...

All the best Janet 🌈

We never give up.There's always hope and some alternative treatment to try. The longer we hold on the more chance something new will come up. Please don't give up, you've done so well.

Get as many opinions as you can because something will suit you.

Remember this doesn't have to be the end. Hugs, Zena xx

kaza1
kaza1
in reply to ZenaJ

Thank you I’ve got to say you and the people who have responded have given me hope again x

Okay, for a start, what the heck are you still doing with a spleen!!!???

You need a second opinion right away.

A spleen is only important for cleaning your blood and keeping your immune system going, but it is not necessary to keep you alive.

My spleen was removed when I was 19 and my daughter ‘s was removed when she was 5 years old, both due to a hereditary blood disease.

Most women lose theirs in the debulking surgery, so you should definitely lose yours!!!

Time to change chemo not stop it!

I am about to go on Carboplatin and Caelyx, which often has good results. Others have Caelyx alone.

I say, get another opinion, get another surgeon, get another surgery, then try another type of Chemo, then a PARP inhibitor after.

Good luck,

Laura

Neona
Neona
in reply to Lindaura

Hi Laura, yes my spleen was removed during debulking. Do you take prophylactic penicillin? I do but I hate it so much but am not brave enough to stop as the doctors all say it is essential. I was told that the liver takes over the functions of the spleen after a couple of years.

kaza1
kaza1
in reply to Lindaura

He said if he takes the spleen out the cancer will only move somewhere else

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