Quick update - haven't posted for long time

Hi all.

Just to let you know I am still around. In March to May 2013 I was off ibuprofen for 10.5 weeks, due to perceived acid problems, which actually were not, but that is another story, and this, ie being off ibuprofen, appeared to trigger a relapse. CA125 crept up from October 2013 and went above normal range last April. I had chemo June to November 2014, and am now in remission, with NED (no evidence of disease) on CT scan and latest CA125 is less than 5.

Am back on ibuprofen and omeprazole after chemo (didn't have them during chemo), and hope that ibuprofen will do the business again, keeping the cancer at bay. For more info see my previous posts. Am a retired GP, so know what I am talking about. I do not intend to stop ibuprofen again, needless to say! Will keep you updated. I was concentrating on fighting the cancer before this, but thought I should now give you all an update.

All best wishes to all with this dreadful disease.

Eileen x

36 Replies

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  • Many thanks for posting and updating us. So pleased you are back in remission.

    Can I just ask? Are you ibuprofen as part of a ongoing trial or was this your (or your oncologist's) decision based on your knowledge and experience?

    best wishes

    Sharon

  • It was my decision, from looking at medical reports on cancer research uk. It was purely by chance that I discovered from cruk about ibuprofen and other anti-inflammatories including aspirin. I was fortunate that it worked out for me taking ibuprofen. I think you have to be in remission for these things to have the chance of working. My oncologist has admitted finally that anti-inflammatories have an anti-cancer effect, and has agreed he is happy I am on them. He is Professor MacNeish in Glasgow. The info is or certainly was all via cruk - but you have to look for it, and they are not advocating either aspirin or anti-inflammatories for cancer patients yet, except in a specific genetic colon cancer. Fortunately I was able to understand the evidence that was presented, and go for it, and it worked for me. If you look at all my references ie websites on my first few posts you will see the evidence.

    Love,

    Eileen xx

  • Dear Eileen

    It's lovely to hear from you again, though I'm sorry you've had that setback. It's good news it looks as though you've come out of it all well and NED again. I'm so glad the Ibroprofen is working for you. I'm glad you posted as I'm having some discomfort at the moment and have been taking Paracetamol. I'll change it today to Ibroprofen.

    Sending very best wishes. xxx Annie

  • Thanks Annie. Good to hear from you, and all best wishes.

    E xxx

  • Hi Eileen, lovely to hear from you but sorry to hear you have had a recurrence. Really pleased you are well and NED now though. I do hope the ibuprofen keeps you on remission like it appears to have done previously. I was taking low dose aspirin (after reading your posts about the benefits of ibuprofen and aspirin) after finishing first line treatment but (maybe because I started it too late) it didn't prevent a recurrence unfortunately. I would go back on it though after I finish Avastin as I think (according to all sorts of research) it has overall health benefits as well as the well known cancer prevention claims.

    Thanks for posting. Take care

    M.B. Xxx

  • All best wishes to you, MB, and lovely to hear from you.

    Love,

    Eileen xxx

  • So glad you have NED thanks for sharing. I too am at this stage 6 months after opp with no other treatment so far. Ibuprofen has always been my first choice of tablet but I had no idea of any protection against cancer.

  • Yes, please see my previous posts, and see above. It certainly works for some, and this is not a quack or alternative treatment. I don't think they are very quick to do large trials, as there is no money in it for a drug company frankly, same with aspirin. The 2 are related as they are all anti-inflammatories. Lots of info on cruk if you can find it - there certainly used to be. Aspirin is the drug of the moment, but my personal experience is with ibuprofen.

    E xx

  • So pleased to hear how you are - and how you've fared with the Ibuprofen, Eileen. Sorry about your relapse but pleased for you with NED, now. Would like to know much Ibuprofen you take daily and also whether you were previously on Omeprazole, if you don't mind me asking. It's always good to have something else to try in mind.

    Long may you stay well,

    Solange. :-)

  • I take ibuprofen 400mg 3 times a day with food. Please see my previous posts which are very informative. And yes, I have always taken omeprazole 20mg once daily along with it. I stupidly tried to take aspirin as well, 150mg daily, and thought I had upset my stomach with it, stopped both it and ibuprofen, and took a ridiculously high dose of omeprazole (did speak to my GP. There was a delay in getting an endoscopy, and so I kept taking high dose omeprazole (80mg daily which was stupid), having stopped ibuprofen and aspirin, and developed acid regurgitation symptoms due to bloating due to excessive wind caused by omeprazole. I finally worked all this out for myself and cut back to 20mg daily of omeprazole and symptoms went away. Went back on anti-inflammatory and endoscopy (stomach) was negative. My GP and consultant are both very supportive, fortunately, and know that anti-inflammatories have an anti-cancer effect for some.

    All best wishes, and thanks.

    Eileen xx

  • Thank you very much for the details, Eileen. It must have been a relief to sort things out, in the end.

    Best wishes, Solange

  • Yes, thanks. I just hope my cancer hasn't found a clever way to get past ibuprofen.

    Eileen x

  • Lovely to read your post Eileen. I read about you and the ibuprofen with great interest before. What dose do you take? I am currently on avastin but intend to start taking it when I finish. great news of the nED - best wishes to you xxx

  • Thanks very much, Gail. See above. I take ibuprofen 400mg 3 times a day with food, and omeprazole 20mg daily. Wishing you good luck.

    Love,

    Eileen xx

  • Many many thanks Eileen xxx

  • How many per day and even if you have no pain , iv just finished Clemo see my guy may , second lot , I am fine though my tummy us still big it does my nut in otherwise great no pain xx

  • See above - ibuprofen 400mg 3 times a day with food, and omeprazole 20mg once daily.

    Wishing you good luck.

    E xxx

  • Hi Eileen, glad you are doing well now. Really interested in the Ibuprofen. I've been left with awful pains in my legs since chemo ended 16 months ago. I got a recurrence after 8 months, no new treatment yet. My oncologist had written to my occupational health Dr that the median time treatment is required is between 3 to 6 months following onset of recurrence. I have been taking the odd over the counter ibuprofen, not every day though but wonder if this has anything at all to do with the fact that I haven't needed to start treatment yet! Think I will start taking it more regularly as it definitely helps with the pain too. Thank you for posting and once again so pleased you are doing well now. Ann xo

  • Thanks Ann. All best wishes to you. For dose see my replies above, and be sure to take omeprazole 20mg daily (no more!) to protect your stomach. You can look at all my previous posts as well.

    Love,

    Eileen xx

  • Thanks Eileen. xo

  • Hi Eileen a very interesting post I must say. I am on Avastin at the moment and I dont think you can mix the two or so it would seem from the other posts. I would take an odd Naproxen for pain relief if paracetamol didnt work but I try to stay off them both generally. I am glad you are doing well at the moment and long may the remission last

  • I do not know if you can mix them or not. Would think probably best to stick with avastin and go to ibuprofen if you like when avastin treatment over. 400mg 3 times a day with food, and omeprazole 20mg daily, as above.

    Thank you, and all best wishes.

    Eileen xx

  • In between recurrences I was on difene and Naproxen for frozen shoulder eventually had to have decompression so was on nsaids for about a year, my onc did say my ca 125 level had come way down at the time although not on active treatment. So he jokingly suggested I get second shoulder done but in fact now it may have been the nsaids prescribed for pain by orthopaedic doc. When I got first recurrence, things were dodgy enough but I bounced back better than expected and I am still here after another recurrence. I suppose it is better to wait until Avastin stops. I am seeing my onc in a weeks time and if I remember will run this information by him. He is anti everything while on treatment. Thanks for your reply

  • Yes, I would strongly recommend speaking to your oncologist, given your interesting response to nsaids. I suspect it could be ok to take nsaid and avastin as my oncologist told me it would be ok when he recently offered me a trial with a similar drug, which I refused as I hope that ibuprofen will do the trick again, without need for extra treatment. However I would always recommend speaking to your oncologist about it.

    E x

  • Read your post with interest, however GP said I cannot take aspirin or ibuprofen as on warfarin or anticoagulant injections if on chemo as have mechanical heart valve, do you have any suggestions?

  • Afraid not. I agree aspirin or anti-inflammatories can't be taken with anticoagulant treatment.

    Best wishes,

    Eileen x

  • Thanks very much for your post, very interesting. I have just been told cancer is back in 2 lymph nodes to the rear of my stomach. I was 1c cancer diagnosis and was in remission for over 5 years. I did take ibrufen before for shoulder pain but stopped a few months ago, I wish now I had carried on taking it! I have no treatment scheduled at the moment so I will discuss with my oncologist about taking ibrufen again now.

    Good luck.

    Love sue xxx

  • I am having technical difficulty sending this off (gremlins?) I wonder if you should have chemo asap and then you can get on ibuprofen. Please discuss this with your oncologist and maybe GP re pros and cons. Can't advise more as every cancer patient is different, and I don't know all about you.

    Good luck.

    Love, Eileen xxx

  • Thanks Eileen, oncologist wants to 'wait and see' what happens with me. I have no symptoms just raised ca125 and ct shows swollen lymph glands . He plans to repeat ct scan again in July. To be honest I am dreading chemo again so am kind of happy to wait. Or maybe I am just being stupid! Thanks again for your reply. Love sue xxx

  • I had no symptoms but pushed for chemo, before any cancer got too big and impossible to get rid of. But every cancer is different, and so I can't really advise in your case. It is worth discussing again with your oncologist, maybe.

    Love,

    Eileen xxx

  • Thanks for your reply and advice. I will discuss with my oncologist, I had quite a few problems with chemo so suppose I just a bit scared to go through it all again. Three friends passed away last year all with ovarian cancer and they had fought really hard to beat it.

    Keep well.

    Love sue xxx

  • Good luck.

    Love,

    Eileen xxx

  • Hi Eileen ,

    Can I ask what the acid reflux was caused by?. I take aspirin daily and suffering badly with reflux at moment. I am 9 months in remission post treatment for stage 3c

    Thanks for your help

    Susan

  • It might be due to the aspirin. You might be better on omeprazole 20mg daily or something similar eg lansoprazole to counteract the acid.

    Best wishes.

    Eileen x

  • Hi. Good to hear your news and success with Ibuprofen. I started taking this after I finished treatment in December 2012, but didn't continue and was starting to put cancer to the back of my mind (also because my Dad was ill and died last year). Now my CA125 has doubled from 9 last December to 18 last week and they want to do another CT scan. (It was low from December 2012 to about March 2015). It might be too late to start the tablets again, but I will try them and an anti-inflamatory diet.

    I did read a few days ao that omeprazole and similar drugs can increase the risk of heart attacks?

  • Sounds like the ibuprofen did work for you, which is good. But it works best when the disease is in remission just after chemo, I think. Certainly for me the ibuprofen could not hold back the cancer once the CA125 started rising. Perhaps the CA125 rose more slowly due to the ibuprofen, but I needed chemo to bring the disease into remission, and then restarted ibuprofen.

    I have not heard about omeprazole increasing the risk of heart attacks. There is nothing in the leaflet that comes with each pack about heart problems as a side effect, and the info there is very thorough. In my reference book re drugs which is 2008 when I retired there is no mention of heart problems, and omeprazole had been around for many years before that. Not everything in the papers is correct, if that is where you read it. I will believe it when a reputable source says it is true. Even then, would be reluctant to change because of some possible heart risk when the risk of cancer returning is more definite (guaranteed!)

    Am so sorry your CA125 is going up. Yes, certainly try the ibuprofen as it might help a bit. Don't hesitate to get in touch any time. Happy to help. You can always do a personal message also.

    Best wishes.

    Love,

    Eileen xx

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