Saw oncologist

Hi all.

Just a quick update. Saw my oncologist a few days ago, and she has extended my appointment interval from 3 months to 4 months. Very pleased. She did mention that there is a bit more evidence about aspirin (and hence ibuprofen) preventing spread (metastases) in colon cancer patients. She says there is not enough money for research, and she thinks they might go for metformin (an anti-diabetic drug) first. It also is cheap and off-patent, and so no money in it for drug companies.

She still says that cancer can occasionally stop in its tracks for no reason whatsoever that they know of, or as an odd immune response to a virus, apparently, and that there is no proof that it is the ibuprofen that is helping me, but she is very happy for me to stay on it, and did say that the colon cancer evidence pointed things slightly more in favour of aspirin, ibuprofen etc. I asked if I should have a CT scan as it is 2 years from my last one, but she said to leave well alone, as there was no indication for a scan when I was feeling so well.

Best wishes to everyone, and take note - according to my oncologist, as above, miracles can happen!

Eileen xx

21 Replies

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  • Great news Eileen..... best wishes love x G x :-)

  • Fantastic news and fingers crossed, well done. Paul and Sandra xx

  • Fantastic news Eileen, we will keep our fingers crossed and keep taking the brufen. A miracle will do too,

    love Chris xx

  • Really pleased to hear the good news Eileen

    Anne x

  • What great news, Eileen. We have to keep on believing in miracles, or aspirin or ibuprofen or whatever helps us through the dark days. I am so glad that you're getting on OK at the moments. I always think, 'right here, right now, I'm OK' - and that's good enough for me! :-)

    Long may it continue

    Love Wendy xx

  • Wonderful news.

    Anthea xx

  • Excellent news. Why don't we do a trial ourselves? I mean if any of us can start ibuprofen & cover and see what experiences we accumulate over a year or two? In my case I'm taking other supplements also, but even so it is worth noting.

    I wonder if it makes a difference when you start the ibuprofen - I suspect that ibuprofen and other anti cancer supplements work best when you have a low volume of disease.

    Well done Eileen for doing all this work.

  • I think we do need to be a bit cautious though, as aspirin can promote internal bleeding - especially if like me you have been on Avastin. Also, not wishing to rain on anyone's parade, but there have been one or two studies done on this type of drug which show adverse results:

    bloomberg.com/news/2011-09-...

    Just so we have a fuller picture!

    Monique x

  • Hi Eileen,

    I saw a genetic specialist last week, as I have hereditary OC. I asked him about taking asprin. he said that there is evidence that it can prevent cancer, and stop spread, particularly for bowel cancer, but less evidence for OC. He said that it would do no harm to take it, and may do some good so he is happy for me to take it. he did say that he thought I would need to take I for about five years to really be effective though!

    I am so pleased that you are keeping well, long may it continue

    love

    Jan x

  • Hi Jan.

    What dose of aspirin did he recommend? One small aspirin (75mg) daily? Would be grateful if you could let me know. Thanks.

    Good luck to you.

    Love,

    Eileen xx

  • Hi Eileen, he said that the evidence is still not clear about the most effective dose, he recommended taking low dose 75mg a day, he said that it was safe enough and would probably do me more good than harm.

  • Thanks, Jan. That is very helpful. Good luck with it. Do let us know how you get on.

    Eileen xx

  • Hi Eileen

    Congratulations - that is excellent news.

    Monique x

  • Excellent news Eileen and so encouraging for us. Thanks for keeping us up to date on this one.

    Love Mary xx

  • That's great, and the whole aspirin/ibuprofen thing remains interesting, doesn't it?

    I think Monique is wise to inject the fuller picture thing, and as a doctor you've always been diligent about stating that people should so cult their GP and get omeprazole or similar as a protector. But I also think christynh has a good point about recording experiences.

    Anecdotal evidence is never given much credence, we know. But any of us that DO decide to take the plunge and try this out (there are already several people who have said that they plan to, and a few already doing it) would do us all a favour by recording the experience. To have any validity even for opening up the debate though this needs to be consistent and comparable as much as possible. How do we make these experiences useful?

    Eileen would you be open to making a little list of the things to record along the way, for all our benefit? Date of start, ca125 at start, frequency and dose, notes about how feeling all seem obvious but what else should people monitor, how often, and how might they note it down...

    Couldn't hurt, may help others In years to come or be used in arguing for future proper trials...

    Love

    Sue xxx

  • Thanks everybody. Yes, it would be good, as Sue says, if anyone who starts aspirin or ibuprofen, or indeed any other anti-inflammatory (NSAID - non-steroidal anti-inflammatory drug), eg Naproxen, for this purpose, or indeed is taking it for an unrelated condition, to keep a note of the date of starting and dose, and what state their disease is in at the time. If CA125 is a good monitor, as it is for most people, though not all, then a note of that at the start and ongoing results would be good.

    As has been referred to, though, these treatments don't suit everyone, and it is essential to consult your GP/oncologist before trying this, and essential to protect your stomach properly, as taking these drugs especially NSAIDs without protection longterm or sometimes even short term is dangerous.

    Really, I would just suggest keeping a diary listing the above, and CT scan results and other treatment, eg chemo. As I have said before, I don't think it should be taken with chemo, unless your oncologist specifically approves, due to possible risk of side effects.

    If on aspirin or ibuprofen or similar, it is important to watch out for side effects on the stomach, and cut back or stop the treatment until you have discussed it with your GP. I really don't want to get too much into medical details, as this is a matter between each of you and your doctor, but that is the main risk, eg bleeding from stomach, etc.

    If you are trying this out, please let us fellow members know from time to time how it is all going, and be careful. I am not an expert. Aspirin may be the safer drug, in a dose of 75mg daily (one small aspirin), but the best dose is not certain, as far as I know, and 150mg daily may be better, but this is not known. There is a general slight risk of bleeding from any site especially at doses over 75mg daily, and it may be safest to take omeprazole when on aspirin too, especially if taking more than 75mg daily. If anyone knows more, please get in touch.

    It just so happens that I started on ibuprofen for another reason, and then realised that it could be having an effect, and so stayed on it.

    Yes, I suspect it is best to take aspirin or an NSAID when the disease is in remission or as near remission as possible, ie when you are feeling well, and maybe starting 6 - 8 weeks after chemo has finished. If you take it when not so healthy, there are also more risks that your body can't tolerate it, eg it could cause kidney failure or even a perforation of bowel.

    Please remember I am only a fellow member with cancer, and can't act as a substitute GP, and so again please consult your doctor before trying this. I hope I haven't terrified you too much, as many people take aspirin 75mg daily with no problem for many years for other reasons, and many with arthritis take anti-inflammatories for many years, though of course with omeprazole cover (or similar). But they are otherwise well, and don't have cancer.

    Love,

    Eileen xx

  • Lovely to hear good news Eileen.

    Linda xx

  • Hi,

    Well done on such good news, I am believing that ibuprofen is effective,

    Mo

  • Good news indeed I intend to try aspirin when I finish chemo xx

  • Thanks, everybody.

    Love to you all.

    Eileen xx

  • Brilliant news Eileen and thank you for your ever helpful posts

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