Very good CA125 result, over 5 years since last dose of chemotherapy

[drdu]

Hi everyone.

Just to report an update that my CA125 is 6 again, same as 6 months ago. Ibuprofen appears to be still working as an anti-cancer agent for me. See previous posts. I am assuming my tumour has the PIK3CA mutation, see previous posts in last year. I am extremely fortunate to be here. I was diagnosed with stage 3 PPC in Sept 2009, and had 2 recurrences, the last one in May 2014. Each time I very fortunately got full remission.

Last chemotherapy dose was over 5 years ago on Nov 7, 2014, and I have been fit and well since then, with CA125 running in single figures. It is checked every 6 months and I have a 6 monthly check with my cancer liaison nurse.

I am enjoying seeing my 2 young grandchildren, and still playing team tennis and hillwalking, and will be 72 next month. Sometimes it seems unbelievable. Thank goodness I chanced on an article about ibuprofen and its anti-cancer effect in some people in 2011, after my first recurrence. I am sorry it doesn't work for more people with ovarian cancer. You will see more info in my previous posts, especially in the last 18 months.

All best wishes to you all.

Eileen x

[Lind58]

Amazing news❤️ Thank you for sharing

[drdu in reply to Lind58]

Thank you. All best wishes.

Eileen x

[Hidden]

I cannot take ibuprofen now because my kidneys are compromised. But I am glad it is working away for you

[drdu in reply to Hidden]

Thanks very much suzuki.

All best wishes.

Eileen xx

[sticky3006]

That’s funny as I was only thinking about you today 😃. You were one of the first ‘inspirational’ women I avidly read about when I joined Health Unlocked two years ago. I’m so pleased you’re doing well and enjoying life. Take care x

[drdu in reply to sticky3006]

Thank you very much sticky. All best wishes.

Eileen xx

[Seasun36-uk]

Great news Eileen!! 🥂🎉🎈

[drdu in reply to Seasun36-uk]

Thanks!

E xxx

[Luci22]

That is great news, continues to work well for you!

My mom is taking baby aspirin, started it after I read your posts, plus Pantaloc daily. She is doing well - fingers crossed. Main complication is a large hernia. Any knowledge if this aspirin would affect a hernia?

And we only know she has the BRIP1 mutation. Noone ever asked or told us to check for this PIK3CA mutation though. I suppose it's too late to check that. Did you ever have genetic testing done?

Thanks for posting this update, best wishes.

[drdu in reply to Luci22]

They were going to try to do testing in my original tumour sample, but for some reason neither my consultant or I would get the result. Must be some trial or something. Not very helpful

Best wishes.

E xx

[Luci22 in reply to drdu]

That is too bad, but still good to know.

Any idea if one should avoid ibuprofen with a hernia thaw keeps getting larger?

All the best!

[drdu in reply to Luci22]

Ibuprofen shouldn't make any difference to hernia. Good luck.

All best wishes.

Eileen xx

[Patty802]

Awesome news! Thanks for sharing!

[drdu in reply to Patty802]

Thanks!

All best wishes.

E xx

[JayGeeCee]

Great news. It’s so important to read positive posts- they lift spirits.

Joy x

[drdu in reply to JayGeeCee]

Thanks Jay. All best wishes.

E xx

[LittleSan]

Wonderful news 🎉🎉💐

[drdu in reply to LittleSan]

Thanks LittleSan. All best wishes.

E xx

[claireRoberts76]

great news 🥰🥰🥰🥰🥰🥰

[drdu in reply to claireRoberts76]

Thanks claire. All best wishes.

E xx

[Hidden]

Lovely to hear from you Eileen, I often wonder how you are doing.

Keep doing what your doing

Marian xx

[drdu in reply to Hidden]

Thanks very much Marian.

E xxx

[WoodyB]

Really pleased for you Eileen. Chemo must by now seem like a long ago bad dream. It's such a shame that no real research is carried out on cheap generic drugs. I understand that the drug companies won't want to do it, but the NHS perhaps?

[drdu in reply to WoodyB]

There is some research going on in UK but it's very slow. Cancer research UK doing aspirin trial.

Thanks Woody. All best wishes.

E xx

[Maxjor]

So happy to hear. Congrats! Can't imagine that long a remission and its so nice you don't take it for granted. Thanks for sharing oxoxox Judy

[drdu in reply to Maxjor]

No, I don't take it for granted. I get very nervous every 6 months before the test, as you never know what cancer will do next.

Thanks very much. All best wishes.

E xx

[delia2]

Great news! Thanks for sharing!

[drdu in reply to delia2]

Thanks delia!

All best wishes.

E xx

[January-2016-UK]

Great news. Hill walking as well!

[drdu in reply to January-2016-UK]

Thanks January. Yes, am very lucky.

All best wishes.

E xx

[Spirit22]

Great news Eileen ! Xx

[drdu in reply to Spirit22]

Thank you! All best wishes.

Eileen xxx

[Hidden]

Wonderful news, and a great inspiration. Just finished third line carbo for "gynae cancer" , (no primary ever found) . Everything seen was in lymph nodes. Some responded to last treatments others remained the same or grew slightly.. Now on "watch and wait".

Am trying ranitidine, berberine plus 1/4 aspirin daily but having read your post may up the aspirin.

Really good to hear positive news, keep it up.

Best wishes

Janet

[drdu in reply to Hidden]

Thanks Janet. The dose of aspirin is one 75mg tablet daily. There is a bigger aspirin tablet which is 300mg. Don't take it, as that's way too strong.

Best wishes.

Eileen x

[win_56]

Hi Eileen so glad to hear your story it brings hope to us all. I too was diagnosed with stage 3C oc PPC 17 month ago, had 3 rounds of chemo then radical debulking surgery, full hysterectomy, spleen and omentum removed and gall bladder and small bowel removed, hence stoma, Had 3 more lots of chemo taxol and carboplatin now in remission. I am going to start taking ipbrofen and see my doctor ti get some meds to protect my stomach...not sure whether they will like me taking it though but its my body and my decision. My CA125 is currently 3. I will keep you posted how i get on Wishing you all the very best.x

[drdu in reply to win_56]

Sounds good idea, win. Do discuss with your GP or oncologist. Yes you must take something like omeprazole 20mg daily if on ibuprofen to protect your stomach. I don't know your full medical history and am not your doctor, and so you must discuss it with a doctor who knows your background. Good luck, and please do keep me informed.

E xx

[bluepeterella]

Amazing. My oncologist said that the expected path for my cancer is shorter remissions after each recurrence. As my first remission was 14 months that didn’t fill me with much hope.

I am using dipyridamole which I think has similar properties? Hope so anyway. All the best for many more years without recurrence.

[drdu in reply to bluepeterella]

Not sure about dipyridamole. On train now. Will try and check it out. Good luck.

Best wishes.

Eileen x

[drdu in reply to bluepeterella]

P.S. thanks very much for your good wishes. Just googled dipyridamole. It does have some anti-inflammatory effects. Honestly don't know if it is as good as aspirin or ibuprofen. Haven't seen it mentioned as having anti-cancer effect in any research but it probably hasn't been looked into. The fact it has some anti-inflammatory effect is something in its favour.

Eileen xx

[Mptelesca]

Dear Eileen , this is so very encouraging! God bless you. I was diagnosed 5 yrs ago with one recurrence in 2018. I have been taking advil every night. Mostly with PM. Thank you for sharing that about ibuprofen.

Stay well and continue enjoying your life!!

Xox

Marisa

[drdu in reply to Mptelesca]

Thank you very much Marisa. That's good re advil. All best wishes.

Eileen xxx

[Mommoo65]

Thank you for letting us know of your wonderful and encouraging news! I cannot take ibuprofen because I take blood thinners but I have heard of its cancer fighting properties. Hugs!!!

[drdu in reply to Mommoo65]

Thank you very much Mommoo. All best wishes to you.

Eileen xx

[Yorkiepudd]

Wonderful news ❤️

[drdu in reply to Yorkiepudd]

Thank you!

Love and best wishes.

Eileen xx

[jools53]

Just started flarin! 👍🏻

[drdu in reply to jools53]

Excellent! Good luck. Be sure to take omeprazole or similar to protect your stomach.

E xx

[drdu in reply to jools53]

P.S. I hope you have checked with your oncologist or doctor that that is ok x

[jools53]

Doctor prescribed naproxen so I’m taking flarin as it’s possibly better on stomach allegedly !

[drdu in reply to jools53]

Yes fair enough. Are you taking something to protect stomach? It is essential you do xx

[jools53]

Omprezole! That’s all some gut probiotics! No 2 taxol today! Just want to see my ca12( come down! Probably starting my coc protocol Monday? Just fill like I’ve got to hit it with everything! Wish I could switch off thinking about it , just consumes me every day looking for answers and help! Why have we not found a cure? Just sent off my tumour profiling! Hope that might help ! £2000 plus! Always hope! Some say high ca125 is still liveable, getting a bit concerned as 5yrs now! No assites yet!

Ranting on as bit, thanks for listening all 🙏

[drdu in reply to jools53]

Good luck with everything.

Lots of love

Eileen x

[ZengTzuer]

Great news! Do you think aspirin is as effective as ibuprofen? Also how often do you do CT scans. i.e., once every year or 18 months? Thanks again for sharing!

[drdu in reply to ZengTzuer]

Yes aspirin 75mg daily is as effective as ibuprofen. I don't have ct scans at all. Last one was after chemo ended in November 2014. I just get 6 monthly CA125 blood tests.

Best wishes.

Eileen x

[ZengTzuer in reply to drdu]

Thank you again for your quick reply! My wife had 3C OC and her CA-125s after chemo were in 2 to 5 range with the latest being 3. Her last CT scan was NED March 2019. Her doctor just ordered another CT. Is it normal for doctors to order periodic scans as a surveillance? Is it safe to skip the CT?

[drdu in reply to ZengTzuer]

Yes it may be that they are not sure yet that CA125 alone is a good guide of the state of your wife's cancer. With some types of ovarian cancer it isn't a good guide, I have heard. So it is best to get the CT scan as well in case her type of cancer falls into that category.

Best wishes to you both.

Eileen

[ZengTzuer in reply to drdu]

Thank you and wish you the best!

[drdu in reply to ZengTzuer]

Thank you

[MPee123]

How do you find out if ppc has PIK3CA mutation please?

[drdu in reply to MPee123]

Sorry, haven't been looking at this site much. Am not involved these days with checking up on the latest research into PIK3CA. When I last saw my consultant a few years ago it was not routine to check for it. I don't know the situation now. I only suspect my tumour must have that mutation because I responded to ibuprofen so well. Am now over 9 years since my last dose of chemotherapy. I must point out that the consultant was never 100% sure of my PPC diagnosis as the cells on histology could have been any gynae cells as they were somewhat undifferentiated. And they discovered after 3 doses of chemotherapy at the start when I had my surgery that there was a small primary endometrial cancer of uterus, and so all the presumed PPC stuff in my abdomen was probably secondaries from that primary cancer of uterus. That is my deduction, as there is a 50% chance of having the mutation in your cancer cells with cancer of uterus, but only about 20% chance if you have the similar type of ovarian cancer/PPC. You will find I have said this if you look at my previous posts. I am sorry that the chance of having this mutation is lower with ovarian cancer/PPC. In fact the chances are even lower with the common type of ovarian cancer.

Needless to say I am still taking ibuprofen 400mg 3 times a day after food, and omeprazole 20mg daily to protect my stomach.

All best wishes.

Eileen x

[Pinkteddybear]

Hi Eileen, How are you? What dose do you take of Ibuprofen and Celecoxib and how often please? Do you take both of these with the baby Aspirin? Best Wishes x

[drdu in reply to Pinkteddybear]

I take ibuprofen 400mg 3 times a day after food. See above. And I take one omeprazole 20mg capsule every day. I don't think Celecoxib works as well from my experience. And don't take baby aspirin 75mg tablet daily as well, as it is not necessary, and could cause side effects. Take either aspirin or ibuprofen, not both. Best to speak to your doctor. But see above, and see my previous posts. I must warn that the chances are not high that it will work with the usual type of ovarian cancer. I strongly suspect I had a primary uterine cancer with huge secondaries (metastases) in my abdomen, which they diagnosed at first as PPC, a type of ovarian cancer. My diagnosis was never certain. See my reply to MPee above.

Very fortunately I am keeping well and of course will stay on the above medication for life. I am no longer being followed up at hospital, but have been encouraged to keep on with the medication by my cancer liaison nurse when I was discharged from hospital follow up over a year ago. I haven't therefore had a CA125 check for 20 months, but am fit, playing tennis, hillwalking etc at age 75. I am extremely lucky.

All best wishes.

Eileen xx