Feeling deflated

[Lorent]

Well ladies my CA marker has now increased to 260 😕 ..... Gem alone does not seem to be working, had an appointment with oncologist this morning I asked about cisplatin along side the gem since I can no longer have carbo, but she said Irish protocol does not use cisplatin for ovarian cancer, I then asked about second look surgery which she said my gyne doctor would not do, so she said the only option left is Taxol and Avastin which I had first time around with carbo..... But this will not start until I have my scan which is scheduled for 7 Nov but the will try to bring it forward to end October, she wants me to stay on gem until then... Feeling a little deflated today 😟

Loren x

[Lyndy]

Oh big hugs...not the news you wanted. Interesting that they don’t use Cisplatin. Do you think that getting another opinion on the surgery might offer another route? Not surprised that you feel deflated right now but give yourself a little time and hopefully your spirits will lift. Keep going ❤️

[Lorent in reply to Lyndy]

Thankyou Lyndy yes I think a second opinion might be worth it, but will stay hopeful that the taxol and avastin will give me a bit more time x

[Tesla_7US]

Loren, get a second opinion. It will bring you peace of mind. Doctors each approach treatment differently. 🧡❤💜

[Lorent in reply to Tesla_7US]

Thank you Tesla will carry on with the new plan of Taxol/Avastin but on recurrence I will definitely be looking for a second opinion my last oncologist was very caring which I will try to get back to. This new oncologist is very by the book 🙄

Take care

Loren x

[Gemimablackvelvet]

Oh dear! I can feel how desperate you are. I can’t give you any advice except a second opinion about the surgery. Some surgeons will when others won’t. I really pushed for surgery when I was first diagnosed because of complications. They gave in eventually after all the usual warnings. They refused a second surgery which is why I’m now on a second cycle of chemo carbo/ caelyx which has brought my CA 125 down to 36 from 46. Numbers are so unpredictable because I had 2 tumours 5cm and 2.6cm and some cancer across the top of my peritoneal. I’m telling you all this because you’d think my numbers would be higher so try not to worry about 260 as we’re all different.

Be strong with the oncologist and keep searching for answers.

Love Angela xx

[Lorent in reply to Gemimablackvelvet]

Thank you Angela, I am hoping that the Taxol/Avastin does the trick for a while then look for second opinion if recurring, have asked about clinical trials either Ireland or the UK so I'm praying something will turn up

Take care

Loren x

[delia2]

I don’t blame you for feeling discouraged. As others have said I would try a second opinion if there’s a specialist in Ireland known for doing surgery when others won’t. What about clinical trials?

[Lorent]

Thank you delia2 I am trying to get my head around her response to everything I asked, didn't feel any compassion from her just felt I was just another cancer file, I feel it might be best to carry on with the Taxol and Avastin as she suggested if I returns again 🤞 then look for second opinion and push for second look surgery

Take care

Loren x

[Amyjo1969]

Get a second opinion. Avastin is a great option. Although it can be hard on the kidneys. I did it for over 3 years until mine couldn’t take it any more

[Lorent]

Thank you Amyjo that sounds promising didn't realize that they can give it for that length of time... Here's hoping 🤞

Hopefully you are keeping well

Loren x

[Lindaura]

Hi Lorent,

So sorry that your Gem alone did not work for you.

Proceeding to Taxol is a good decision, but it is not a walk in the park.

It will probably destroy the cancer, but you need to be prepared for all those old annoying side effects, such as extreme fatigue, digestive issues, aching limbs and joints and hair loss.

All of us had to deal with this once and almost all of us have to deal with it a second time, so just be prepared to take it easy.

Use your time now to get as much done as possible and let your loved ones know that you might need a bit of extra support in the future.

I am on weekly taxol and I was taken by surprise when the side effects hit with a vengeance.

I am on a lower dosage now, but it is still surprisingly toxic.

I was expecting to lose my hair, but naively hoped I wouldn’t.

Third week hit and my gorgeous blonde locks fled and it made me sad. However, my daughter reminded me that this just means the Taxol is in their destroying all rapidly dividing cells.

Luckily I had found a great wig just in time for my trip to London and my confidence has returned.

Just be prepared to let yourself be pampered and let friends and family in on your situation .

Everyone will want to help.

Best wishes,

Laura

[Lorent]

Thank you for your lovely reply Laura, I'm always following your post hopefully we will beat this beast again

Take care of yourself

Loren x