WEB SITE DEDICATED TO PAIN RELIEF FOR CANCER SU... - My Ovacome

My Ovacome

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WEB SITE DEDICATED TO PAIN RELIEF FOR CANCER SUFFERERS

spanishanna profile image
6 Replies

When I was in Gibralter today I bought the April copy of Good Housekeeping. In there I found an article advertising the web site pain-speak.com

I actually haven't really gone into the site too much yet myself, but it seems to deal with cancer related pain.

I wondered if it might be of help to anyone.

Love Anna xx

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Whilst I have cancer, cancer does not have me !!

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spanishanna
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Meryl profile image
Meryl

Hi Anna

Thanks for this link. I'm fine right now but when first diagnosed it took a few weeks for those involved in my care to find what really worked for me. I've put this link on my list for future reference if that time should come. Meryl XXXXX

BusyLizzie profile image
BusyLizzie in reply to Meryl

Hey Meryl,

How was your Antipodean adventure? Was it the North or South Island you went to? Have you seen that I have had a fall of 250 in my CA125 after dose #2 of caeylx. We are not sure until the end of the month if it is a blip or a trend, but it has given me hope the tide may have turned for a while.

Love Lizzie

X

Hi Anna,

Probably a good site for anyone newly diagnosed, helping to explain how to approach the oncologists and share your pain with them. Good advice!

Hope all is well with you.

Viv

CFMF profile image
CFMF

Thank you Anna, I will look into this website.

Glad to know that you are out and about and I hope you are feeling better.

I might have missed some of your previous posts.

My mother has completed her third cycle of chemo (mainly carbo/taxol) although she had avastin the first week. She is feeling better. Her CA 125 has dropped to 50 at the last blood test. Last week's scan showed that the ascites has subsided and the cancer nodules in her abdomen are no longer visible, However there are still traces in the lungs (in the pleural area).

I am in France with her this week. The gynecologist surgeon wants to see my mum again. We think he might want to discuss further surgery. My mother is not sure that further surgery (to remove uterus and maybe other stuff) makes sense as they cannot operate on the lungs. I am also not sure whether it makes sense for her to have surgery now or later possibly after more chemo including avastin...

..

So we will see what the surgeon and are planning a second opinion.

Love

Cecile

spanishanna profile image
spanishanna

Hi Cecie,

Good to hear from you and pleased to see Mum's cancer marker is down. That is only just above the normal limit, which here is in Spain is 35m , I would jump for joy if mine was down to 50.

The Avastin did put my lung cancer into remission, so there is always hope there. As for surgery when on Avastin, that is slightly more difficult. Avastin has the ability to prevent wounds from healing, I guess that is the easiest way to put it to you, so if they need to operate they SHOULD take Mum off her Avastin for at least 6 weeks. I had a port a cath fitted 2 weeks ago and was due to start my Avastin on the Wed, my Onc wouldn't start because of the healing process and insisted on waiting another 2 weeks.

Normally the procedure for ovarian cancer is removal of uterus and any other diseased organs in that area. I had already had a hysterectomy when my cancer arrived, so I had the full debaulking surgery, which included removal of both ovaries, spleen, tiny part of the cervix and bowel and total scrape of the abdominal wall, but of course all o/c patients don't need the 'full works' . It is often only when they open you up they can see the full extent of what is going on in there.

Let Mum's oncologist decide on when the best time is to operate. With me they had this problem, do we operate first or do we go straight into chemo to try and shrink the little blighters. In the end surgery was the first option because of the rate of growth of the tumour on the right ovary. I always say they are the experts they SHOULD know what they are doing.

I am so pleased to hear Mum has responded so well and you are over there with her at the moment.

2nd opinions are always good.

Love Anna x

Meryl profile image
Meryl

Hi Lizzi

So pleased to see your CA is going down - fingers crossed Caelyx works as well for you as it did for me and that the side effects are minimal - keep us posted. Yes thanks had a lovely 6 weeks in NZ. All North Island as family live in Auckland. However managed to explore all sorts of lovely places not been to before ane hardly thought about OC until a week or so before I came back. I had a blood test almost immediately on return and disappointed that CA had gone up from 9 to 26. Not critical I know but it's like 'groundhog day' as this is what's happened twice before and by mid summer I'm back on chemo. Good luck with the rest of your treatment. Meryl XXXXX

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