I am doing well on ibuprofen to prevent spread of my primary peritoneal cancer which had recurred. Why are there not widespread trials?

I was diagnosed with stage 3 primary peritoneal cancer in Sept 2009, when I had CA125 of over 4000 before treatment. I had successful chemo and surgery, finishing chemo in March 2010, and CT scan clear in April 2010. I had recurrence in peritoneum and liver, found in October 2010 and had a further successful course of chemo, after which liver appeared clear, but still some traces of metastases in peritoneum. CA125 has remained below 10 since I finished chemo in March 2011.

To cut a long story short, I took ibuprofen then diclofenac for a coincidental hamstring strain from April 2011 for 4 months, then after a 3 week break have been taking ibuprofen as an anti-cancer drug regularly since late August 2011, along with omeprazole to protect my stomach from the likely side effects of ibuprofen. I had been told I would be highly likely to relapse without treatment by Sept 2011, but my last CA125 was 6 two weeks ago.

Aspirin has been shown to be effective in many cancers to prevent spread - research published in March 2012, and from early research in the lab it is possible that ibuprofen is better. I had done my own research, and my GP agreed I should give it a try when I discussed it with her. I feel others should know about this. My consultant knows I am on ibuprofen, but said originally she could not recommend it, as there have not been trials.

The effect of aspirin and anti-inflammatory drugs like ibuprofen in preventing some cancers has been known since 2001. Why has this promising discovery not been followed up sooner?

I would like there to be widespread trials of this promising line of treatment, but there is apparently a lack of funds. I would like others to benefit as quickly as possible, and would like to start a campaign for a trial of ibuprofen or indeed aspirin in ovarian cancer after the initial surgery and chemotherapy, to try to prevent spread of the cancer. With my own experience so far I would favour ibuprofen.

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  • Fascinating had not heard anything about this... From this piece it looks like Cancer Research UK have dabbled in studies dailymail.co.uk/news/articl... but this was last year.

    From a quick search there also seem to be indications of studies of a good effect on skin cancer, yet some cancer risks from profens too though. Sounds like the jury is out on this one still.it does seem odd that there aren't more formal studies in that case though...

  • This is interesting. But it's so hard to know what really drives medical research. Is there as much in it for the drug companies if they find wonderful new uses for common or garden meds like aspirin or ibuprofen rather than developing sexy new ones they can charge mega bucks for?

    The games mistress is feeling a bit cynical.

    L. xx

  • L, I think you are spot on.

    Jackie, Another Cynic xx

  • The same thought has occurred to me. Not much profit if nobody needs the drugs long term.

    Are we all becoming cynical?

    Chris

  • I think you would need to take these drugs the rest of your life to prevent cancer coming back, but they are cheap, and so no profit for drug companies.

  • I agree. These drugs are off patent and cheap, and so no profit for drug companies in that. They will therefore not be keen to fund trials at all. See Guardian article 29 October "Cancer fight stalls amid push for profits, doctors say",

  • VERY interesting especially considering I've been told NOT to take Ibuprofen while on chemo for stage 3 ovarian cancer. My oncologist is concerned it will put additional strain on my kidneys.

    Thank you for sharing this.

    I hope it continues to help... and I'd really like to know more about it.

    XOXO,

    Erika

  • No, definitely don't take it while you are on chemo - no need - the chemo should help, and there is a high risk of side effects if you are on chemo. I would suggest that you take it after chemo out of your system ie 4-5 weeks after last dose. Also don't start it without discussing with your GP or oncologist, as they know your whole medical history. I have references to back this up.

    All best wishes.

    xxx drdu

  • I agree it does not make financial "sense" for drug companies to spend millions on trials for "dirt cheap" drugs like aspirin and ibuprofen although I now believe there are some trials for metformin use in cancer. A shame that we won't know the official results for a couple of years.

    Drdu, ibuprofen seems to be working for you, Long may it continue and thanks for sharing the information with us.

    Xx

  • Yes, my oncologist mentioned metformin, but again I think it is early stages. Best wishes. xx

  • Drdu,

    Thank you for posting this. I find it especially interesting as I also was diagnosed with PPC in August 2009, had chemo and surgery and was in remission for 6 months. Successfully retreated with carbo caelyx and in remission again for 7 months. Howerver, 6 months later it was back and I had carbo again, worked very quickly but only had 4 months, waited around to get on a trial PARP + carbo (I am BRCA2+) did not work for me and now on Gem/carbo. However CA125 going down. but slowly and it was up 1000+ after waiting and unsuccessful trial.

    Wish I had known about ibuprofin. Have printed your post to take to GP and Oncologist. But feel I would need to be starting from NED and at this point that seems a difficult goal.

    Carry on with the ibuprofin!! Hope it continues working so well for you.

  • Sorry, nandi, don't know what NED means, though think I can guess. Good luck and best wishes.

  • I fear that Linda and Jackie are probably right -- look at the number of times aspirin has emerged in the last few years as a part solution to many things - it's the most commoditised drug on the planet and I think out of patent protection too as its so old - and thus never seems to become a standard for anything despite mounting evidence that it could be far more useful than just as a blood thinner. It is also mentioned ref cancer in that daily mail piece I linked above...

    Kidney and breast are the two risks mentioned in the quick search I did so your recommendation doesn't surprise me, nandi.

    Still with each success like you are experiencing, drdu, the chances of someone wanting to investigate increases.

    I would suggest you put this question on the record -- perhaps write to Cancer Research UK Suggest they revisit their study (interesting to request a copy if the survey results too perhaps. I know we would all be interested to read on here...). At least they have no commercial axe to grind...

    The idea of an "open letter" is a powerful PR tactic. So, depending on how strongly you feel about this: copying your MP can be a good idea too as far as getting it on the record goes.

    This technique is worth all fundraisers and campaigners filing away in the back of their minds. it can be expanded quite a way: Copying editor of your local paper raises possibility of the 'local woman challenges the drug companies' type of story if you write it carefully. It can also be augmented by things like online petitions, use of social media, surveys using free online tools, etc. sometimes we use it in reverse: write to media first in a "letters to the editor" campaign first then publicise that. You get the idea. Get your messages crystal clear first (maximum 3) and make them consistent across everything you write and say.

    Not to be used lightly and probably OTT for this case - but very useful as a concept.

  • Thanks, I am thinking about what you have said. Good advice. I had written to the Guardian after their article, see above, but they didn't publish it. I also wrote to Cancer Research Uk, but only got a bland reply about aspirin (see my refs) from a nurse, which was better than nothing, I admit.

    By the way, I think any kidney and breast cancer risks from ibuprofen are negligible or non-existent, or it would not still be on the market and trialled as an anti-cancer drug. Many people who have developed cancer will have taken the odd ibuprofen at some time as it is so commonly used, but that does not make it the cause.

  • Hello (not sure what your name is) ...

    Your post hit a cord with me and I'll tell you why.

    When I was diagnosed with Stage 1V Ovca in April 1999, I also had massive pulmonary embolisms and was on Heparin IV to thin the blood, then weaned onto Coumadin, the pill form of blood thinner before leaving the hospital. I took Coumadin for the duration of treatment. Even while taking Coumadin and having INR blood tests every 3 days, another blood clot developed in my left leg which required further blood thinning action. I was given daily Fragmin shots for a week to break up the clots that were obviously still forming. My Ca 125 at diagnosis was 9800.

    After I finished treatment which consisted of 3 chemo's prior to surgery (Taxol and Carboplatin) and 6 more after, I was deemed to be "disease free". I asked if that meant if I was in remission, and the Dr said, "Yes you are!" He then gave me a prescription for Premarin and recommended I take a combination pill to equal 1000gr of Calcium, Vitamin D and Magnesium 3 times a day. I asked at that time, "What about the Coumadin?" And he dais, "Stop taking that". I was a bit surprised that he didn't suggest I take a baby Aspirin.

    A week later I had an appointment with my family Dr. Although delighted about my 'disease free' news, she was very concerned that I was taking nothing to thin my blood. She advised me to take one Aspirin every day (325 gr) - which I've taken for over over 13 years now.

    I also have Arthritis and so asked my Dr to prescribe me Celebrex. I had joined the ACOR discussion group and there was a lot of talk back then about Celebrex being a Cox2 inhibitor - which reduces inflammation and may help people beat their cancers.

    I knew one very special lady who had been on chemo none-stop for several years. She had reached that place where she'd tried all the different drugs and combinations of drugs and there was nothing left to try. After reading about the discussions about Celebrex on the ACOR list, she asked her Dr to prescribe Celebrex for her Arthritis. By this time, she'd also been diagnosed with Leukemia, another primary, so she was desperate to try anything. Her Dr prescribed 200 mg Celebrex twice a day. Sadly, it didn't save her life, but it did slow tumour growth and gave her at least 12 more months of living her life to the fullest. I've been taking 200mg of Celebrex twice a day for 13 years and still in remission:-))

    I also follow the Budwig protocol (research this online) which includes flax oil and flaxseeds which are both blood thinners, so I'm pretty sure my blood is nice and thin by now.

    I feel sure that the Ibuprofen is helping you in your fight. YOU are helping yourself and that is KEY (I believe) in fighting this nasty insidious disease. You asked why there are no trials to study the benefits of Ibuprofen or Aspirin? There are two answers. First, there is no money in it because cancer is big business and even our wonderful Doctors depend on the industry to put bread on their table.

    Secondly, if trials were to be performed, the Ibuprofen or Aspirin would be combined with a proven effective chemo drug, so the results would be somewhat obscure. Who would know what was killing the tumours? Most newly diagnosed women wouldn't want to take the risk of taking the Ibuprofen or Aspirin on its own, just in case it didn't work.

    When drug trials take place it;s usually on a 'blind study' basis where one arm of the trial group would be getting a placebo and the other arm, the drug. This would be too risky for a cancer patient and apparently this is practice is never done on cancer patients. For those getting the placebo may die, even though it is very well known (and studied) that the placebo effect has its place in healing too.

    I think you're on the right track. Yes, we have to listen to what our Doctors have to say, but remember, you are a person too, with a 'thinking' mind and ideas of your own. Make a balanced decision with YOU being a large part of the equation.

    Happy researching ... And thanks for such an interesting post!

    Sandy.

  • No, Sandy, I am not suggesting this instead of chemo at all. Chemo and surgery can work wonders. I think it is best to take it after chemo as I said above, when the CA125 is as low as it can be. I am really interested in your story, which is amazing, and I would put it down to the aspirin, which is a decent dose, plus the celebrex (celecoxib) which is one of the NSAIs (non-specific anti-inflammatory drugs) that act against cancer, and Cancer Research UK have done some studies with it. It is hard to tell which has done the trick - either on their own could have done it. I am going to look out my web links and put them on this blog.

    Your story has given me a lot of encouragement, and it should be an encouragement to all of us. Very interesting. I think you should tell your local oncologist or something. That is very impressive.

  • there are lots of alternative therapies out there the budwig diet excellent i do it and feel so well;i refused chemo. and doing hemp oil (rick Simpson) you tube. that has cured 1 person i know and 2 people my brother in law knows. BUT you cant patent cannibus which it is made from ,The drug companies earn a fortune from chemo. why should they want a cure? Be realistic the chemo. only holds it back. not a cure,Sorry to keep on were all doing what is right for us I have it stage 3 in my stomach and liver nodes.I will see my ONC. in Jan. as he wants to see how I do.love to all Jenny xxx ps I only had 9 months after op. and chemo. first time so why go through that again.

  • Good luck. As above, I think chemo has a very important place, but after the course of chemo, I would recommend ibuprofen or something similar. xx

  • Hi, this is really interesting thread. My mum has OC and I'm currently reading up as much as I can on supplements and diets etc that will hopefully keep her in remission (when she gets to that point, which I am positively assuming she will!) for as long as possible. I found an article on line by Dr David Servan-Schreiber - have any of you heard of him? I ordered his book and started it yesterday. It's already incredible and I strongly advise you to read it!

    Can I ask though, what surgery can you have for peritoneal cancer? My mum's OC had spread to bowel, a little in the tissues up around the liver, and a bit on her peritoneum. I've been told that there's no surgery you can have for cancer on the peritoneum - is this right? I read somewhere about 'stripping' in this area, but don't know what this is... We're told chemo is the only way to combat this area of disease so if you know differently I'd be most interested to know.

    Also, one last thing, I was told that a normal CA125 is 35. A couple of you have said you're 10 or below (I didn't realise it could go below, I thought 35 was it)... does this mean that at 35 you're not 'cancer free'? What would a cancer-free CA125 count be and why am I told 35 if it can go lower? Sorry for all the questions! We're fairly new to this - mum is on her 3rd session of chemo so we have 3 to go. Thank you xxxxx

  • Yes, angelag, CA125 below 35 is normal. You can have a very low CA125 like I did and not be cancer free on CT scan. No, you can't clear cancer from mesentery of peritoneum by surgery, I gather, not easily anyway. I had hysterectomy and oophorectomy (ovaries removed), and omentectomy - omentum removed. I am not saying ibuprofen or aspirin or celecoxib get rid of cancer altogether, but to all intents and purposes they seem to. If the cancer can be stopped growing and spreading, then it may do no harm, and can be lived with. I am fine, and play tennis, go running and climb hills, in fact lead my life as usual, in spite of traces of cancer in the mesentery of my peritoneum at last ct scan in April 2011.

    Good luck to your mum. The aim is to get the CA125 as low as possible.

    xxxxx

  • Sorry, angelag, meant to say at end that once CA125 is below 35 or as low as it can get, and not on chemotherapy, then I would recommend starting ibuprofen or celecoxib or aspirin. See lady above who did well on celecoxib and aspirin, very impressive.

    All the best to everybody reading this blog xx

  • Hi DrDu,

    This is so interesting but I have to just say I take regular antinfamotiry medication for constant muscle pain, I take a lot of ibruprofen too. It never stopt me from getting two primary cancers at the same time Ovary and uterus that we inrelated to one another. a year later I have a mutation of dodgy cells in my right breast which was on the turn.

    I would like to know what your dose is each day, some days I can take as many as 8 tabs a day.

  • My dose of ibuprofen is 400mg three times a day with food, and omeprazole 20mg daily to protect the stomach. But don't do anything without speaking to your GP or oncologist.

    Good luck

  • Like I say, I am already taking high doses of antinflammotory drugs including ibruprofen for another illness. I have been taking them for years before the cancer hit me but I am braca one, so that may make my cancer risks higher.

  • Hi Tina. I am really sorry ibuprofen and other anti-inflammatories haven't worked for you. Maybe it is the braca 1 thing. I would keep taking them anyway, in case they they are helping. It shouldn't do any harm, as long as your GP agrees.

    All the best. xx

  • Hi Angela,

    There are always guideline for all tests, it just so happens that the CA125 guildeline is 35 and less being a normal result.

    Anything over 35 is not so normal. However, I have also been told that oncologists are not concerned should your test go over 35 a little bit, if your normal reading is for example 30.

    The CA 125 is measurring protein in your blood - protein can raise for alsorts of reasons, an infection or virus for example. So often our own personal results can go a little up or down and this is still normal.

    Mine rose to 1,800 when I had the cancer - in remision it strays up and down between 11 and 14 but this seems to be my normal. And can thereofre be used as a good measure, so if it rose within a short space of time from 14 to 35, it may be something to be concerned about.

    And Someones elses normal protein levels can be between 30 and 35 and there would still be nothing to worry about.

    Obviously before the cancer none of us really know what our normal level is.

    So anything 35 or under is classed as nothing to worry about.

    Some peoples protein levels don`t change with OV cancer - in such cases this test would not be a good guideline for them to follow, and for this very reason some people are not offered the CA125 blood test and this is the real reason why it cannot be trusted as a form of accurate diagnosis.

    I am not sure I am explaining this very well at all so any firther questions please feel free to ask me.

    Its just a very big mind field of worry, isn`t it?

    Take care with love xx to you all

  • Hi, the point about CA125 being unreliable as an indicator of OC is right. My CA125 was over 3000 at diagnosis. It was coming down in leaps and bounds while on chemo after 5th cycle it was 96 and was taken again 6wks after my last cycle it had gone up to 106. The team were really surprised by the fact that the 3 chemo cycles I had post surgery had done nothing to reduce the 10cm turmours left on my bowel and diaphragm despite the continual drop in CA125. It was thought that I had responded well to chemo until the post op scan showed otherwise. I'm stage 4.

    I won't be offered another blood test, though I can request one, I don't think I will as there will be no further treatment until symptoms reappear.

    At present I feel fine if a bit breathless at times and can get on with things.Long may it last

    Chris x.

  • I would discuss aspirin or ibuprofen or similar with your GP or oncologist, if I were you. See my references. They have no bad side effects if you protect your stomach with omeprazole. Suggest you print out my references and show them to your GP. As my GP said, what have you got to lose? And, as she said, you could be taking such drugs for pain anyway.

    Good luck xx

  • I am sorry to disagree ladies, these drugs do have bad side effects, especially when taken long term.

    It`s good to take tummy protection medication because this can help erosion in the tummy, ulcers and diahorrea, cramps etc. however, these don`t always work, and if they don`t the side effects are not only treadful but they are also life thretening.

    They thin the blood, this is ok if your blood needs to be thinned, but if it doesn`t then it can cause a whole load of new problems.

    An old school teacher of my daughters died suddenly from a stomach bleed/hemorage from taking antiinfallamortorys for arthritis.

    What also concerns me is if these drugs can cause bleeds and ulcers, what if they make the tumor bleed???? Just a thought I wanted to share with you all.

    Also any surgary can be dangerous if your blood won`t clot at all.

    Yes, we all hear story`s when some of us are told to take blood thinners before surgary and that avoids the dangerous types of clotting, however, when we don`t need them, then indeed it can be dangerous.

    So they do have a lot of nasty horrible side effects when taken long term. I can manage to take them for three to four days then my tummy gets into trouble. I also take the tummy medication, if I didn`t I would not be able to tolerate them at all, but they are the only thing that works for my fibromyalgia, without them I would be disabled.

    The thing is we need to know our own body and we can never be sure what is going on inside, even the experts don`t always know.

    Its a bit of trial and error.

    I do wonder why you are taking these medicines as often as three times a day.

    Those who are at risk of stroke or heart attack are only usually told to take ONE aspirin a day!!!!!!!!!!!!!!!!!!!!!!!!!

    I am also worried how these medicines would affect someone who does not have inflammation. If they don`t have a job to do, then wahat happens, just another thought if mine and I am just thinking out loud.

    To be honest with you girls, I do think there is a very good reason WHY our oncologists don`t usually tell us about the related effects of ibruprofen and cancer.

    Tina xxx

  • Just adding that I was never told to stop taking ibruprofen while having chemo.

  • Thanks, Tina. Having been a GP for 25 years, I am well aware of ibuprofen and its use. It has been used for many years in people with arthritis for example, with no great problem. I had been taking it by chance for a chronic muscle strain. It does not thin the blood, and its major side effect is gastro-intestinal haemorrhage, like all the NSAIs. This can on the whole be prevented by omeprazole, and by being sensible, ie not taking neat spirits a lot, or the like. Always take it with food. As I said no drug is without risks. It is a matter of balancing the risks against the advantages, and deciding for yourself.

    To me anyway it is worth it, as I had been told there was no longterm cure after my cancer came back following the first chemotherapy and surgery. I would rather be sensible and try this chance when it is offered than die of cancer with my stomach intact! It is a matter of weighing up the risks. If I get any indigestion/stomach discomfort, I just up the dose of omeprazole from 20mg daily to40mg daily for 2-3 days. It is worth foregoing drinking spirits, in my opinion. Of course everybody's stomach is different. I am happy and ok with drinking wine in moderation!

    It is only aspirin that thins the blood, and makes bleeding from any site slightly more likely. Certainly other NSAIs don't do this - the only risk is to the stomach.

    The only other major risk of taking an NSAI like ibuprofen longterm is damage to kidney function, but your kidneys will be being checked regularly when you have a blood test at follow-up by your oncologist, and if you are otherwise well you should be able to tolerate it.

    NSAIs can maybe slightly interfere with some pills for high blood pressure. I am on a pill for that, Ramipril. Again, I weighed up the risks, and thought do I want to die of cancer but have a normal blood pressure? The answer was no!

    To answer your question re why I take ibuprofen 3 times a day, that is because it is the standard dose in routine arthritis longterm, and that is how at first the discovery was made that NSAIs gave a lower risk of cancer ie prevented some cancer - in reviewing people on NSAIs longterm for arthritis, and finding they had a lower risk of cancer. The NSAI anti-inflammatory effect appears to work against the cancer. See my references.

    The standard dose for aspirin in heart disease and stroke is 75mg daily, ie one small aspirin (75mg rather than 300mg). There is some doubt if this is the best dose to prevent cancer, though from research on such patients, again it was discovered that they had a lower risk of cancer. It is possible that 150mg or even 300mg daily might be better. I think they are trialling it at different doses. See Cancer Research UK's website and my references.

    I hope this helps everybody. All best wishes xx

  • This is such an interesting thread! I too was diagnosed with PPC in April, had clear scan in October - thankfully -and feel really well right now. Whilst we can never quite know for certain, I believe trying to find a better balance in my own diet between acid and alkaline ( and thus reducing inflammation) helped me during treatment and will also help me to stay cancer free. This was the first piece of advice given to me some people whose opinion I trust. My diet was high in dairy too, now much reduced. I intend to visit GP in New Year with a list of questions and now I have even more to add. I agree with others here, in that we are talking about an industry worth billions so simple, off the shelf answers may not be their priority. Thank you DrDu, will do some more research myself and share if worthwhile.

    XX

  • Hi Cerise. Will put my links on this blog. They are worth a close read. A lot are from Cancer research uk which is a good website. I would strongly recommend you have a good read of what I send, as there is a lot of evidence out there suggesting aspirin or ibuprofen or celecoxib are worth taking, but oncologists are reluctant to recommend it without big trials.

    Good luck xxx

  • Hi everyone. Here are the websites. Sorry they aren't direct links - couldn't manage it. One of the articles is related to the daily mail link PRchick left above.

    Articles related to ibuprofen / aspirin / other NSAIs and cancer

    scienceblog.cancerresearchu...

    cancerresearchuk.org/cancer...

    ncbi.nlm.nih.gov/pubmed/157...

    ncbi.nlm.nih.gov/pubmed/226...

    cancerresearchuk.org/cancer...

    cancerresearchuk.org/cancer...

    ncbi.nlm.nih.gov/pubmed/220...

    ncbi.nlm.nih.gov/pubmed/226...

    British Journal of Dermatology 2009 161, pp25–33. This is a very interesting article with a lot of info, but I only have it as a document. Well worth reading.

  • Thanks dru, we all have a lot of reading up to do, bless you XXX

  • This is just to let you know that the NCRI is planning several large studies looking at the impact of aspirin in delaying recurrence of cancer - the trials will compare aspirin with placebo, and currently the studies are being developed in upper GI cancer, bowel cancer and breast cancer I believe.

  • Thanks very much for that information. I was aware that some studies were in the pipeline from the Cancer Research UK website, but why limit them to those 3 types of cancer when there is much evidence out there that aspirin and NSAIs have an effect on a much wider range of cancers than that, see my references eg pubmed/15756426, which shows prevention of cancer effects in cancer of colon, breast, lung, prostate, oesophagus, stomach and ovary, and pubmed/22644960 re same for malignant melanoma and squamous cell carcinoma.

    Indeed in the article in British Journal of Dermatology I mention, "Ibuprofen and hydrogel-released ibuprofen in the reduction of inflammation-induced migration in melanoma cells", ref 37 by Lejeune is about a patient with metastatic malignant melanoma of the leg, who"experienced a complete and sustained regression of skin metastases on continuous single treatment with rofecoxib, a COX-2 inhibitor (now banned because of heart problem side effects), but related to celecoxib.

    So basically my point is why limit these studies to 3 cancers when there is strong evidence that these drugs could help in a lot of cancers, including ovarian cancer? But it is a start, I suppose. Don't know why everything has to be so slow. As has been said, and my consultant also said these trials cost a lot to set up. Many thanks and best wishes.

  • I can't speak for the NCRI, but perhaps they did not choose (at present) to investigate the use of aspirin in maintaining remission in ovarian cancer because we now have Avastin, which has a proven role in this setting?

    Obviously, aspirin warrants further investigation, and some very recent data (New England Journal of Medicine, 25th Oct 2012, volume 367, page 1596) suggests that there may really be some direct cancer-controlling effect exerted by aspirin in some cases.

    In some cancers, a gene called PIK3CA is mutated, and this results in activation of a signalling pathway that promotes cell growth. To put it another way, PIK3CA-mutant cancer cells are always "switched on". There is laboratory evidence that aspirin switches off this pathway, and hence aspirin and aspirin-like drugs (eg ibuprofen) might reduce one of the growth-promoting factors that would lead to recurrence of disease.

    The recent New England Journal paper presents evidence from a study in colon cancer - patients were asked if they routinely took aspirin or not. Their tumours were analysed to see if they contained PIK3CA mutation. It turned out that among all the patients with PIK3CA mutation, the outcome (in terms of recurrence) was much better in those who used aspirin routinely than in those who did not. One interpretation is that aspirin use switched off the activated PIK3CA pathway, leading to growth control.

    One final point, it seems that PIK3CA mutation is particularly common in clear cell ovarian cancer, so hopefully if a true effect can be demonstrated, better treatment might emerge for this sub-type of ovarian cancer.

    We must remember however, that ibuprofen / aspirin use is widespread - and there aren't lots of people with ultra-long remissions attributable to these drugs. Like most things in oncology, it's likely to be a lot more complicated than first thought!

  • We may not know about people in ultra-long remissions as presumably they just think they are cured. See Sandra. I don't know if anyone has studied those survivors.

    No, I don't think aspirin and NSAIs are the total answer, but they may help a lot of people. Yes, the science of them has been studied a lot - please see my references - and they do have an anti-cancer effect, undoubtedly.

    Thanks for that info. Best wishes.

  • Hi Richard,

    I have recurring PPC for the third time, about to start treatment in the new year. I am tempted to start taking an asprin a day after reading your post.

    Regards

    joanna

  • As you can see from the opinions and data throughout this thread, there really isn't a right answer. Given the MULTIPLE pathways involved in cancer, and the uncertainty about how influencing one pathway might affect another, AND the fact that one person's cancer will be subtly different from another person's, I think you just have to do what feels right for you.

  • Hi Richard.

    Have been thinking further about this, and I suspect that the aspirin or NSAID has to be started when the cancer is at its lowest ebb in the body, due to surgery, chemo etc. There is probably only a narrow window of a few months when this is applicable. Currently the person would only have started the aspirin and/or NSAID at the appropriate dose coincidentally for another condition, like me or Sandy (see above), and continued to take it regularly, in a dose for arthritis in the case of NSAIDs, ie a good bit higher than the odd taking of a Nurofen/ibuprofen 200mg tablet for pain etc.

    So I suspect that not many people with cancer will by chance have taken aspirin or an NSAID at a high dose like that starting at the right time. Aspirin 75mg daily may well not be enough.

    It would be worth looking into. Sandy's story is very striking, as she had stage 4 OC, and corroborates my experience. Looking through the research, there is some evidence that a combination of aspirin and NSAID has the best effect in preventing some cancer (will provide reference), and so perhaps this is also true to prevent spread - see Sandy above - and very few people will by chance be on both aspirin and an NSAI.

    It is worth further investigation in my opinion.

    Best wishes.

  • Thanks very much for all these comments, which are very heartening. It looks to me as if there is enough evidence to start a campaign about this. What do other people think? Please have a good read of the references I posted above (which appear to be direct links after all). I am a retired GP, and convinced by the articles I have read, and Sandra's story is further evidence.

    Thank you and best wishes.

  • Hi Dru, yes I do think we should try to do something, count me in anyway xx

    Also its good to have a GP on board, retired or not you must know more than the rest of us. and thank you x

  • Thanks, Tina xx

  • Sorry, meant to add - suggest you look up "gerard evan" on Cancer Research UK website. He has done a 20 minute talk (video) about cancer, which is very positive and optimistic. When he talks about the common end pathway in cancer cells, I suspect that aspirin and the NSAIs are involved in that, ie they may work for all cancers. I may be wrong, as I am no expert, but that is the impression I get from what I have read.

    Please don't jump on taking ibuprofen or the like without consulting with your GP or oncologist, as no drug is risk-free, but please use my references to show to them if you want.

    Best wishes.

  • PS in reply to Richard - I take it you are another doctor, from your input!

  • Thats right I'm afraid. GynOnc medical oncologist (+ other sites of course) for a looooong time, and involved with Ovacome for ages - see ovacome.org.uk/about-us/who...

  • I would just like to add something to this,my partner was diagnosed with low grade postate cancer 18 months ago,his psa has been slowly rising it was 7.8 in may 2012,in july and august he was taking ibuprofen and paracetamol for an unrelated condition, when psa was tested in late september it had reduced to 4.6,it makes you think!

  • Yes, that is like me. I took ibuprofen for a month, then diclofenac (another NSAI) for 3months for an unrelated problem, see original blog, ie hamstring injury. It was when I went back for my check up and my CA125 was normal when I expected it to be raised that the penny dropped, as I had seen the article on cancer research UK website which was actually about prostate cancer cells' growth being halted by ibuprofen. It is the 5th one down in my list of references - "New clues to how humble painkiller stifles cancer growth".

    I had been off diclofenac for 3 weeks, and went to my GP and discussed going on ibuprofen. She agreed, as she was aware of the research. I would strongly recommend that you and your partner take a look at that reference and the others. What happened to your partner's PSA is no coincidence, I am sure, from what I have read, and is very similar to what happened to me. It is well worth having a good look at my references.

    Of course I don't know anything about his medical history, and indeed am not a prostate specialist by any means, and ibuprofen may well not be appropriate for him at the present time, if he is on other treatment, but it is certainly something to bear in mind, and mention to the oncologist, or your GP. It is essential to discuss with a doctor, and take appropriate stomach protection.

    I would very much like to hear from anyone else with a similar story.

    Good luck and best wishes to your partner.

  • Sorry, just to add, for everyone's info, that normal PSA is below 5. It is a prostate cancer marker, like CA125 is an ovarian cancer marker (not clear cell type). So a slightly raised PSA has gone down to a normal range PSA after taking ibuprofen.

  • Can I just point out that I was supposed to relapse 15 months ago if not more. I could not believe it at first, but am convinced now that ibuprofen is doing something, which is why I have started this blog, so that others would know. I just hope it continues to work. Sandra's story above gives me hope.

    Best wishes to all xx

  • Just to say that if you are looking at all my references, see above, then the Cancer Research UK links are easier reading, as they are directed at the general public, whereas the others are aimed at doctors. So would suggest you read the Cancer Research UK articles first, and get the gist of it, then see the others.

    Best wishes x

  • drdu,

    This is such an interesting topic and makes so much sense. We are told all the time how inflammation should be controlled re cancer. Loads of advice online about what to eat etc. yet a steady dose of anti inflammatory, relatively safe and cheap makes more sense to me. As I said before wish I had known in my own journey with PPC. Will certainly give it a go when current treatment is over.

    Thanks and best wishes.

  • Glad to have helped. Good luck with it all. Will be thinking of you xx

  • scienceblog.cancerresearchu...

    This is the reference I referred to in replying to Richard - see above.

    See in particular the bits under heading "Non-aspirin NSAIDs" and also under heading "So what's next?", though the whole article is worth reading. It was done in 2008, and so some of the stuff, about aspirin in particular, is a bit out of date (see my previous references). It is all about prevention of cancer, rather than prevention of spread when you have cancer. Obviously the worry about side effects is more if you are considering giving these drugs to healthy people who don't have cancer.

    But NSAIDs and aspirin are strong drugs, and need to be taken with caution, and only after discussion with your GP or oncologist. Omeprazole or the like is needed to protect your stomach, especially with NSAIDs.

  • Dear Drdu,

    I am very interested in the idea that an anti inflammatory agent could keep this dreaded disease at bay when CA 125 has been reduced to it's lowest by chemotherapy.

    This is exactly the sort of innovative research Lord Saatchi had in mind when introducing the Medical Innovation Bill 2012 in the House of Lords on December 3rd.

    I think it is worth trying to contact him via Mail on Sunday where an article appeared on December 2nd about his wife Josephine's death from PPD and his interest in moving research along in this area.

    I have recently started third line treatment for relapse so keen to push along any route that might help slow down or stop another recurrence. Would love to help in any way I can with your initiative.

    Best wishes,

    Brid

  • Yes, I saw Lord Saatchi on Newsnight at that time, and did think of contacting him, but have done nothing. Will look into how to contact him. I did think that this was the sort of thing he had in mind. I will certainly contact him, and let you know how I get on.

    Yes, am sure ibuprofen or aspirin would be worth you trying - certainly worth a go, perhaps after your current treatment. Would suggest you discuss it with your oncologist. They may be willing for you to try aspirin anyway after chemo, as it is being tried in other cancers. You have nothing to lose, in my opinion.

    Thanks for your support.

    All best wishes.

    Eileen xx

  • Hi Brid.

    Just to let you know that I wrote to Lord Saatchi at House of Lords, posted letter on Friday, as I couldn't get hold of an email address. I gave him details of this blog and my other one last week, so that he could look at them, and so hope I hear back from him. I also gave him a resume of what it was all about. I told him that I thought ovacome members would be fully behind his bill, as this sort of thing is just what we are looking for.

    Best wishes.

    Love,

    Eileen xx

  • Hi Eileen,

    I am due to start chemo 3rd round soon and when I saw my oncologist yesterday I mentioned aspirin and possible benefits, she told me that there would be no harm in taking an aspirin a day and that I could start now. I am a bit wary of doing this as you have always said "post chemo", If your campaign is getting underway I would like to be involved.

    Love

    Joanna

    xx

  • That is excellent about your oncologist. You haven't said a lot about your cancer. Do you mean you have had 2 relapses, and this is your 3rd course of chemo coming up or that this is your 3rd cycle of chemo in your first course of 6 cycles? I would be a bit nervous to take it during the usual course of 6 chemo cycles, but if you are not currently on a course and your oncologist thinks it is ok, then it probably is. There is some thought that 150mg of aspirin (enteric coated) may possibly be better than 75mg, but I certainly wouldn't advise taking 150mg during the usual chemo course. Also I don't know your stage of cancer. Ideally I think it is best to take aspirin when you are in remission, for best effect, but if your oncologist thinks it is ok, and she knows all about you, then I guess it is.

    Good luck. Thanks for wanting to be involved in the campaign, and will keep that in mind. Will see what I hear from Lord Saatchi, but things seem to be starting to move anyway, as I have heard from one or 2 people that their oncologists are starting to agree to prescribe ibuprofen or similar NSAID, or aspirin, and from others that some GPs are agreeing to do so.

    Love,

    Eileen xx

  • Hi Eileen,

    Sorry to take so long to respond, I had my first or(13th) chemo last week and have been a bit under the radar so to speak. Feeling much better now. I am afraid it is my second re-occurance. Originally diagnosed in May 2010 stage 3 OC with spread to the peritoneum, after surgery discovered ovaries were fine and it is PPC I have.

    I was encouraged by my Oncologists response to the aspirin question but am not taking anything whilst undergoing treatment, I will wait till afterwards.

    Hopefully by the time I finish the sixth of 3 weekly sessions in May there will be much more info about Ibuprofen.

    Love

    Joanna

    xxx

  • Wishing you all the best of luck with the chemo. Yes, probably best to wait till after chemo.

    Love,

    Eileen xxx

  • Update.

    Tried aspirin from end of December, in addition to ibuprofen, but my stomach would not tolerate it, and I ended up with gastritis in March, and had to come off both. It was a stupid idea anyway to take both. There had been one old paper years ago that suggested taking both, but nobody else has suggested that, and on my own evidence with ibuprofen, plus lot of evidence with aspirin in colon cancer patients, it appears that taking one of aspirin or NSAIDs such as ibuprofen is enough.

    So a warning - DON'T TAKE ASPIRIN AND IBUPROFEN, AND DO TAKE SOMETHING LIKE OMEPRAZOLE TO PROTECT YOUR STOMACH, ESPECIALLY WITH AN ANTI-INFLAMMATORY.

    I hope to be back on an anti-inflammatory when I am sure my stomach is healed. Will take celecoxib, which is easier on the stomach than ibuprofen.

    Eileen x

  • Hi, I read you most recent post then saw this one from before. How many ibropohen do you take a day? Once my mum finishes her treatment I might recommend this for her! X

  • I take ibuprofen 400mg tablet with food 3 times a day. Also omeprazole 20mg daily to protect the stomach, which is essential. Aspirin 75mg daily, ie one small aspirin per day, may well be as good instead of ibuprofen. Your mum would need to discuss it with her GP or oncologist first as ibuprofen does not suit everybody,especially if there are kidney problems.

    Best wishes to you and your mum.

    Eileen xx

  • Hi Eileen,

    I asked our Onc today about ibrobruphen and they said as mum had tumour near her stomach area that it could cause stomach ulcers and could make things unbalanced in that area which might not be good. I wonder if asprin has the same effect. I will ask them when we are back next week to see what they say about that. Our onc can sometimes dismiss things when I am sure it might even help, I suppose they have to be extra careful and cover themselves in case they say yes and it does something bad. Mum takes the Omeprazole every day anyway so had guessed adding in the asprin of ibuprofen or asprin wouldnt do any harm, especially if they are saying they are not sure if she is responding to treatment at the moment. Any extra boost would be good for her right now as she is on 3rd line with no clear picture if she is responding. :(

  • If she is on chemo just now, then even aspirin may not be suitable. Is it strong chemo? If so, then aspirin or ibuprofen is not suitable. Why is she on omeprazole? If she already has stomach problems, then aspirin or ibuprofen is not suitable at all, I am afraid.

    Best wishes.

    E xx

  • She is on weekly taxol at the moment. They gave her omeprazole to protect her from the different tabs she takes. Currently she is on severadol, Zoramorph, steriods (dex something) & anti sickness tabs. They were given to her ages ago and she has continued to take them, I wonder if she needs to, I might ask the Onc if she should be. We have been given so many different tabs we never know which ones are still 100% relevant to take anymore.

    OK that is good to know if she is on chemo they are probably not suitable. I'll see what happens after her treatment in 6-8 weeks.

    Thank you - it is really great to hear you are doing so well. :)

  • Good idea to check if she still needs them all. Maybe she does, but worth checking.

    And thanks.

    E xx

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