No longer platinum sensitive: Hello ladies, I... - My Ovacome

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No longer platinum sensitive

DollyAnne profile image
9 Replies

Hello ladies,

I have been one of the women loitering in the background. I have just discovered I have a third recurrence of ovarian cancer 3 months after completing my third round of chemo (carbocaelyx). I think people have asked this before, but I am having trouble searching the site.

I would be really interested to hear from ladies that have had a recurrence within 6 months of their last chemo and to know what the plan has been for your ongoing care.

I was diagnosed in May 2013 with stage 4 non brca Fallopian tube cancer I had 3 lots of carbotaxol, then total hysterectomy etc then 3 final carbon taxol with avastin. My first recurrence was 18 months after and I had carbo I/gemcitabine then 9 months later carbo/caelyx which I completed in April this year.

It would be good to hear your experiences

Thank you

Dolly .

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DollyAnne profile image
DollyAnne
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9 Replies
Lyndy profile image
Lyndy

Hi Dolly..can't offer any useful advice-sorry but thought I would wish you well while you wait for someone who has useful experience. The nurse led help line is really good too x

DollyAnne profile image
DollyAnne in reply toLyndy

Thank you for your kindness Lyndy.

Xx

CallmeMum profile image
CallmeMum

Hi lovely,

Going from what others on here have said it's usually weekly taxol as the next stage but your Onc's will inform you of the next step. Always ask questions if you're not sure or call your CNS xxx

DollyAnne profile image
DollyAnne in reply toCallmeMum

Thank you for your reply. I will try the CNS tomorrow. Xxx

airfemale profile image
airfemale

I was diagnosed first in January 25th, 2013. I had surgery and cisplatin and taxol. I had 9 months remission and then reoccurred . I then had surgery and caelyx, carbo. I reoccurred 6 months after that and had gemzar. I reoccurred nearly straight away after that which led me to a kidney stent, radiation. I have reoccurred again no remission and it is in my lung pelvis and I am doing Caelyx and carboplatin again. In 4 years 6 months I have had little times of remission. My prognosis is poor and I have started planning palliative care, I am still independent but quite exhausted most of the time. I guess what I am saying to you is you are going pretty well. Good luck. Sharon

DollyAnne profile image
DollyAnne in reply toairfemale

Oh Sharon I'm sorry that your journey sounds such a rough ride. This disease doesn't show any mercy does it?

I'm interested that you had radiation as I did not think they used that for OC. Was it aimed at your abdomen?

Wishing you peace.

Dolly xxx

airfemale profile image
airfemale

Hi Dolly, yes they aimed it at the two tumors in my abdomen. It worked for awhile. It is offered in ovarian cancer but probably not often. I had two clear sites. It was hell on my bowels and I was sick and ended up in hospital. I am not sure if it is offered in your country. Peace also to you. Sharon

DollyAnne profile image
DollyAnne in reply toairfemale

That doesn't sound good Sharon.

Thank you for explaining.

Take care xx

JanePW1965 profile image
JanePW1965

Hello Dolly. My Mum was diagnosed 3c OC in December 2013. She had debulking with CArbo/Taxol either side in 2014. In Oct 2014 I went to her onc appt with her and she was told everything went great and they think they got it all out. She was so pleased. Then in Jan 15 she was told the devastating news of a recurrence. We were all numb. She had 6 x Caelyx. Although her CA125 was still hovering around 150, she had a stable 18 months then the CA125 started to go up again. She's just finished 6 x Carbo/Taxol. She had a CT scan last week and is due to see her Onc at beginning of Sept. She's so amazing and was 80 last Oct. I live over 200 miles away but go down and see her as often as I can. I would also be interested to know what's next for Mum. Best wishes. Jane X

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