Hi all. Just a quick update on how things are going with me. Last CA125 was 5 when checked 13 days ago. It has not been above 5 since December last year. I had my last dose of chemo on 7th November last year. Still taking ibuprofen 400mg three times a day with food, along with omeprazole to protect my stomach. See my previous posts.
Did you all see the publicity about aspirin 2 - 3 weeks ago? More proof that it is effective in preventing cancer from coming back in some patients. The study was on gastro-intestinal cancers (digestive system), but there is some evidence for aspirin as an anti-cancer agent in most cancers - see my previous posts.
It was a Dutch study reported at European Cancer Congress 2015 - "Press release: Post-diagnosis aspirin improves survival in all gastro-intestinal cancers". europeancancercongress.org/...
I recommend you have a look. I was disappointed that Cancer Research UK were not more positive about it, but some comment from cancer specialists in the press release was very positive.
Best wishes to all.
Eileen x
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I had a grade 3 stage 3 primary peritoneal cancer when diagnosed in 2009. The cells were fairly undifferentiated, and they were not sure at first where the primary cancer was, just that it was a gynaecological cancer (ie breast or uterus or ovary). They decided it was PPC (a variant of ovarian cancer) because some cells called psammoma cells were found, and these are typical of ovarian cancer, I am told. So I think it is more undifferentiated, and hence more aggressive, than the typical serous epithelial ovarian cancer. I am fortunate that so far it has responded very well to chemotherapy giving full remission each time (no evidence of disease) and my CA125 level corresponds well with the presence of disease.
Thanks for your reply. I'm also PPC though I suspect the origin wasn't the peritoneum.
I was staged at 3c but then it was realised I had cells in the lung. I low grade with high grade features and psammoma bodies.
The disease is extensive. I read that low grade is more prone to calcification but the Registrar told me that high and low grades can produce psammoma bodies. As my disease is spreading, it's becoming more invasive and calcifying as it goes along. This means that I have what they call a lead pipe bowel. It doesn't work very well now.
I did have a fast growing tumour which protruded through a hernia. It wasn't strangulated but had necrotised on its own. I thought this was a good thing (even though I was very ill and needed immediate surgery) as I rationalised that my body was healing itself but my oncologist says it's just part of the process.
Anyway, I don't have scans. My oncologist says that if there are fast growing tumours there, I'm not starting chemo again. I couldn't work this out and I found it all very upsetting. I don't know anyone on here in this position.
I have never had a CA125 outside of the normal limits though I went from 15 to 9 after treatment. Up to 20% of Ovarian/PPC don't have an elevated marker at diagnosis so they can't be tracked in this way.
My Registrar has explained to me that no matter what the scan says, I won't be starting until I'm symptomatic. I was referred to my local hospice for bowel and pain management which helped enormously. Now my pain is reduced and the Registrar says that it depends where the bowel is situated at any given time particularly as I have extensive disease on the mesentery.
So I did have symptoms but apparently chemo is unlikely to work on the slower growing cells which is why brinkmanship is the order of the day. Chemo is a last ditch measure if I get ascites again, for example.
Strangely, I feel better now than for the last five years. It won't last I'm told but I'm glad of this time. I secretly feel the anti-inflammatory medication has helped though I've no evidence of this.
It's probably just in my head but then, my oncologist says that nobody knows how the mind and body relationship works anyway. I've heard that in some experiments, the group taking the placebo does better than someone not in the trial (and also taking nothing).
I was on three tablets a day (with narcotic patches and paracetamol) but had to reduce the anti-inflammatories to once a day because I had too many nosebleeds.
Everyone with this disease reacts differently though. We're all individual and what helps with one, might not help another.
I'm really glad you're having a long remission. Xxx
I know. You are right - we are all different, and your disease sounds different from mine, where CA125 is an accurate marker. It is possible the anti-inflammatory has helped.
Glad all is good for you, read your post earlier and went googling and found the article you mention along with others. When I stop Avastin, I will check and see if my onc is happy with me taking some thing or other. At the moment, I seem to be doing okay.
Thanks for your update Eileen. I've always read your posts with a lot of interest and thought about you when I read the articles in the paper about Aspirin.
I have just finished my third line of chemotherapy. I'm going on PARP inhibitors as part of a clinical trial. I'd imagine they might not be happy with me taking Aspirin of Ibroprofen if I'm in the experimental group. It's certainly worth looking into based on the scientific evidence and your own experience. You've done really well to keep your CA125 so low for so long.
I have just been lucky, nothing else. They might not mind if you take aspirin or ibuprofen. I was offered a trial of one of these PARP inhibitors, and my oncologist said I could take ibuprofen as well, maybe because I was already on it. I didn't take up the offer, as I thought I would persevere with ibuprofen alone as it has seemed to help me before.
It has an anti-cancer effect, just a mild one, ie it seems to stop cancer cells spreading, and has been shown in the lab and in mice to kill cancer cells. This has been shown with a variety of NSAIDs (non-steroidal anti-inflammatory drugs) like diclofenac and naproxen. Aspirin appears to do the same, and act in the same way. It can't stop a cancer that is running out of control in the body, it appears, but both aspirin and NSAIDs have been proven to have an anti-cancer effect. Please see my previous posts which show references etc, mostly from cancer research uk. It is not a magic cure sadly and does not work for everyone by any means.
Anybody considering taking either aspirin or ibuprofen or similar needs to speak to their GP and/or oncologist. And it should be taken along with something like omeprazole to protect the stomach, as otherwise there is a risk of stomach perforation or bleeding.
Further, as you will see from my previous posts, it has been found that people who have been on aspirin or NSAIDs longterm for other reasons like to prevent heart disease (aspirin) or for chronic rheumatoid arthritis (anti-inflammatories like ibuprofen), are less likely to get cancer than the general population, and if they do it does not spread as much as it does with people not on these drugs.
And further again! The mechanism by which aspirin and NSAIDs like ibuprofen kill cancer cells does not appear to be known with certainty, though the scientists have theories. For people with cancer like you and me the main thing is that it has this effect. To know how it works would be interesting, I agree.
Thanks a lot Vicky. Nice to hear from you. I just hope ibuprofen keeps doing its work. To prove the case for others as well as myself. I think the evidence is convincing, and more is coming in, but so slowly.
All best wishes, and am glad that you are doing well.
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