My Ovacome
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Great CA125 result again!

Hi all.

Just to let you know that my CA125 result was 5 just over 2 weeks ago. Unbelievable. CA125 is a good marker for my disease. Saw my consultant last week, and she has said not to come back for 6 months, even though I suggested 4 months! My last chemo dose was on 7th November 2014. See my previous posts for the full story.

Basically I was diagnosed in Sept 2009, and had surgery and chemo, with full remission, then relapsed Oct 2010 and had further course of chemo, with full remission, then went on ibuprofen as anti-cancer agent (like aspirin) to prevent recurrence (my idea, with support from my GP). Relapsed in 2014 after having been off ibuprofen in 2013 for 10.5 weeks. Had chemo in 2014 and again full remission. Back on ibuprofen and no further relapse. I don't get CT scans as CA125 is good marker for my disease. I am fully fit, playing tennis, hillwalking, etc.

I feel this is amazing. I think full clinical remission is needed, from my experience, to prevent recurrence of the cancer, as ibuprofen is only a weak anti-cancer agent, it appears. See my previous posts for all the evidence re aspirin and ibuprofen and similar anti-inflammatories like Naproxen. My case has not been written up at all, I suspect because I haven't survived long enough in my consultant's opinion. She keeps saying there could be some other reason for my good health, rather than ibuprofen, ie no proof it is ibuprofen that is the cause. It seems fairly obvious to me that ibuprofen is the cause of my good fortune, but oncologists seem to be a very cautious breed.

Anyway thought would let you know how I am doing, and let anyone new to the site know about ibuprofen and me!

All best wishes to you all.

Love,

Eileen xx

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Fantastic! At my check up in January my CA125 was still 5.5! I started low dose aspirin and tamoxifen last June. I finished frontline in March, so 11 months NED. I don’t know if it’s the aspirin, Tamoxifen or just my body keeping me in remission. I’m just grateful and plan to keep doing what I’m doing. I was diagnosed Stage 4b high grade in October 2016.

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Yes, keep doing what you are doing. The aspirin could well be helping. Do you know if you have a BRCA gene or not?

Good luck, and best wishes.

Eileen xx

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I’m BRCA1+. Is that considered good or bad in regards to anti inflammatory effectiveness?

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So pleased to hear you are still doing so well, Eileen. Long may it last. I have been on a 75 mg soluble aspirin from before I was diagnosed in November 2006. Although I finished Chemo again in September 2017 (third Course) none of my tumours had shrunk but hopefully I am stable. Have had Carbo/Taxol, Carbo/Gem/Avastin and six Carbo and three Caelyx. Couldn't have the last three Caelyx as blood condition too bad and as Chemo not shrunk tumours, disappointed to then not qualify for Niraparib, after all. Have also had a zap of Radiotherapy on two different occasions.

Just wondering, did you ever get round to collating any figures for how people fared on Aspirin or Ibuprofen?

Love,

Solange😊

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I have some details from various people, but am due to do another review of it all. Will try and do that in near future. Certainly a few people appeared promising, but it is early days. But the best results appear to be if you are in full remission, ie NED after chemo.

Hope you stay stable, Solange.

Love,

Eileen xx

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P.S. I have been tested and am not Braca1or Braca 2 but have seen that I was called Braca Wild. Any idea what that means? My Gene Tester said that because I have had Melanoma and Squamous Cell carcinomas as well as Ov Ca she thinks I probably do carry a yet to be discovered gene. S xx

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Yes .... it sounds a lot more exciting than it actually is, and is a wonderful example of medical language not being like what we ordinary mortals use.

I asked at my last clinic as it had suddenly appeared as a term in the letters to the GP.

Basically it means we are normal, population at large, in respect of anything BRCA, i.e. no mutations. Now if I'd been looking around for something to call us, I can think of a lot more transparent terms ( apart, of course, from "equally brilliant")!

Hope you're enjoying Portugal.

Beautiful morning here in London. x

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Ha ha, thanks Mac!! Nice to have a giggle early in the day. Been lovely sunny days this week, here. Hope your beautiful morning turns into a beautiful whole day. Xxx😊

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Enjoy Portugal! xx

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No, I am not an expert on Braca. Yes sounds like an undiscovered gene.

All best wishes.

E xx

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That is just great news and gives us all hope , which we all need in this cancer journey. I was on Avastin maintenance which didn't work for me . My CA125 was 65. I had a MRI done as my pet scan showed a large area of inflammation across my pancreas and spleen but no cancer. Two months later I had another pet scan and it showed some cancer returning.

This is when I discovered the Ovacome site and found your posts regarding Ibuprofen. I felt so excited about finding the Aspirin study you posted as well. My thoughts were how to treat my inflammation as my oncologist didn't suggest anything .I went for my next treatment (still on Avastin) and my CA125 now 138 and told him of the Aspirin study( and Ibuprofen.) He said he was aware of it and that it was very beneficial for PPC and also patients suffering from Mesothelioma.

He decided to put me on Nexium 40mg and Ibuprofen 1x 400 mg daily as he considered I could tolerate it. I began this , together with the Avastin and for the next 2 treatments my Ca125 did not go up, in fact it fell to 135 from 138. I was the put on Carboplatin and Caelyx while still taking my Nexium and Ibuprofen and after 3 treatments my Ca125 has fallen to 25 . I am conscientious about taking the Ibuprofen with a big breakfast and endeavour to eat healthily otherwise. I have had no problems with taking it and hope I get a clinical remission sometime soon!

I would like to think others could benefit from this as well as it is helping me and it does give hope....and do we ever need it.

Warm wishes

Gladys

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You should be ok on Nexium 40mg daily. Probably it is safest to stick to one a day while you are on chemo, but hopefully you could increase it to 400mg 3 times a day after the chemo is out of your system.

All best wishes.

Eileen xx

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Hi Eileen, Thank you enjoyed reading your positive post we have lost too many amazing

ladies lately it helps us all to read a positive one.

Great news about your 125 being 5 I've never got below 57 and as soon as I go off chemo it goes up.

I'm off it now and yes it's going up but I'm off chemo to do a new trial drug.

I hope you continue to have good results for a very very long time ..take care Lorraine xx

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Thank you very much, Lorraine, and all best wishes to you.

Love,

Eileen xx

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Wow Eileen !...what a great post x

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Thanks Lyndy. All best wishes to you.

Love,

Eileen xx

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There are quite a few research papers regarding anti inflammatories and cancer. I unfortunately cannot take them as my kidney function is poor. So ibuprofen even a low dose is off the cards.

Good luck

LA xx

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That is a shame, Lily-Anne. All best wishes to you. Is even low-dose aspirin 75mg daily not possible for you?

Love,

Eileen xx

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Well done was wondering how you were doing, obviously something right by the sounds of it, all the very best

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Thanks very much, Suzuki. Hope things going ok for you.

All best wishes.

Love,

Eileen xx

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Hi Eileen, I am stable back for review in March and scan in June unless I need one before then. I am doing okay, still have hip tendonitis which could be as a result of rt treatments on that side but I manage.

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Glad to hear you are doing ok.

E xx

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Hi Eileen

It’s great to get an update from you as I missed seeing your positive posts. You might remember that I have been on 75mg of aspirin for many years before I was diagnosed with high grade serous stage 3c PPC. In 2011. Inoperable but Carbo and Taxol worked very well and I was NED until 2016 with a normal CA125 which had come down from 8000 on diagnosis. Then it recurred in my peri aortic lymph nodes and again after Carbo treatment I was pronounced stable .

When I read your posts at the time I did wonder if it was the Aspirin that was doing the trick for me. I was told by my CNS that I was just lucky ! I rarely saw my oncologist and I know from the times I did speak to him, that he wouldnt be open to such a suggestion . I was never offered genetic testing but then there was no family history..

Now my life has taken a different turn. I was diagnosed with Lobular Breast Cancer in Nov and had a mastectomy in Dec. Sharon in Ovacare advised me to ask for genetic testing and I’m waiting for results . In the meantime getting the right result to an Oncotype test has allowed me to skip chemo and go straight to Radiotherapy next week.

What’s so reassuring about your post is that hopefully the aspirin will make the sleeping PPC monster stay asleep at least until my current treatment is complete. Who knows it might just sleep forever ! Fingers crossed.

Stay in touch Eileen with your positive posts. Take care

XXX

💚💕

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You sound quite similar to me, Molly. Last time it recurred in my peri-aortic lymph nodes as well as my liver. Yes, I think aspirin may well have helped you a lot. Do continue on it, whatever anyone says. Your oncologist doesn't sound very open-minded - he is not the only one!

Good luck with everything.

Love,

Eileen xxx

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Hi Eileen,

What an inspiring positive post! So pleased for you! 😊. Is the thought that OC cells flourish in conditions of inflamed tissue? Do you take 200mg or 400mg/day? Funny thing is - I am taking Ibuprofen 200mg/day for awful Avastin aches, as per my Oncologist. Good for your GP supporting you! Wouldn't it be great if someone could collect/collate all the data about the benefits of anti inflammatory meds for OC?! Do you take Omeprazole too? It's so exciting!! Linda xx

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Yes I take omeprazole as well - that is essential to prevent stomach problems eg bleeding. I take ibuprofen 400mg three times a day with or after food. Please have a look at my previous posts. Anti-inflammatory meds and aspirin (also an anti-inflammatory) act by killing cancer cells. They do this in the Petri dish in the laboratory. And people who have been taking aspirin or an anti-inflammatory for other conditions have a lower incidence of cancer (any type) than those who don't. And it appears that these drugs sometimes prevent cancer recurrence or make it more treatable when it recurs. These are peer-reviewed medical research papers.

Cancer Research UK is trialling aspirin as a treatment to prevent recurrence in various cancers, but OC is not included in their trial, though these drugs have an anti-cancer effect against any cancer, it appears.

Best wishes.

Eileen xx

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PPS thank you very much for your support. I am vaguely trying to liaise with people on anti-inflammatories or aspirin on this website. See above.

E xx

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PS check Cancer Research UK website re aspirin. Though I haven't looked at it for a while, they are mildly positive about aspirin. But oncologists are a cautious bunch. Nothing will happen quickly, in my opinion.

E xx

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Hi Eileen, for someone just start ibuprofen, do you recommend to start with 400mg/day first?

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I don't know about everybody's past medical history, and so can't really recommend anything without discussing it with your GP or oncologist, who know you as a patient. For someone on no other medication and not on chemo I would suggest 400mg 3 times a day with food, if you take omeprazole 20mg each day as well to protect your stomach from damage from the anti-inflammatory (ibuprofen or similar), as long as you have good kidney function, and have no history of stomach problems. Never take ibuprofen without stomach protection like omeprazole. But always discuss it with your doctor first. If you are starting a long-term treatment, you have to be sure that the medication is suitable for you or there could be side-effects.

E xx

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Thanks Eileen!

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Great to hear! I had a good CA125 result a few weeks ago which was marginally lower than when I finished chemo six months ago. 🎉 I'm putting this down to my attempts to counter inflammation by taking 75mg Asprin daily and Curcumin. I investigated Asprin following one of your previous posts!

I had toyed with taking ibuprofen daily as I know it works for me when I've had migraines/bad muscle aches etc.

As I'm lounging in bed today with tonsillitis one of my tasks was to do a bit more reading about NSAIDs and cancer so your post was very useful!

Keep up the good work and keep us informed please.

Em

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Thanks Em. Just to say that NSAIDs and aspirin work in cancer by directly killing cancer cells (shown in laboratory often). The mechanism is not totally clear, to me anyway, but an article on aspirin I quoted and gave a link to, a year or two ago on this site, suggested some mechanism, which involved enzymes etc - see article. Frankly I am not that interested in the biochemistry of exactly how it works, which appears complicated, but just that it does work for some people. It is good though if the experts deduce how it works, anyway. So it is not simply an anti-inflammatory effect as many assume.

Hope you feel better soon.

All best wishes.

Eileen xx

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Really pleased you so well. Sue xx

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Thank you very much, Sue. Hope you are doing ok.

Love,

Eileen xx

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Hi Eileen, that's great news for you, way to go!! It's amazing how far you've come.

You mentioned something interesting in your post: "I feel this is amazing. I think full clinical remission is needed, from my experience, to prevent recurrence of the cancer, as ibuprofen is only a weak anti-cancer agent, it appears."

Can you explain what you mean by full clinical remission needed? Does this mean that only if the patient has been told by their oncologist they are in remission, that they can start trying to use an NSAID? How would we know if it's remission? My mom's oncologist hasn't used those words with us but she just finished first line treatment at the end of February with great results, "successfully completed first treatment", and her CA125 is 5. It's been that low since after her 3rd chemo session & prior to surgery. Now at end of treatment it was still 5. The doctor was quite happy. However he is not using the words remission , perhaps it's too soon to say?

Here's my question: In your opinion, is this the right time to begin the full dose of Aspirin/Ibuprophen? She just started taking a low dose aspirin 1x/day for now.

However I read in another post to take NSAIDS after finishing a 2nd line treatment after a 2nd recurrance. Not sure I understood. If you can clarify that would be great! Take good care.

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Hi again Lucy. Yes low dose aspirin is fine. I only started ibuprofen after a recurrence, but that was because I didn't know about aspirin/ibuprofen before. If your mother has a CT scan and there is no sign/evidence of the disease then that is full remission. She should have a CT scan after the end of treatment. Has that not been mentioned. Was her CA125 raised at the start? Not all ovarian cancers show a raised CA125, I believe. CA125 of 5 sounds excellent, and may well mean full remission. Ask if your mother is going to get a CT scan, if you haven't heard, I would suggest.

Best wishes. Sorry didn't look at this site for a while.

Eileen xx

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Hi Eileen, thanks for your reply, I sent you a personal message reply but I'll just mention here that a CT was not arranged after treatment. Thinking back though they did CT just before surgery and had seen noticeable reduction in the cancer. After surgery the oncologist was very pleased and said they got all they could see, it was "optimal debulking". After surgery she then had 3 final chemo treatments but he saw her only before her last chemo not after. We thought that was odd, but he kept saying she was looking so well and did well om with treatment. He wants to see her in 4 months for follow up. I was prepared to see him with her after the last chemo. I too assumed a CT was the last step. Maybe he didn't think it was needed ? I wonder if too many CTs aren't good for you? I've heard less is better but then again in the case of cancer its needed.

I will make a call to his nurse to double check this, though she's a bit of a nervous anxious type, I find it tough to speak to her , she has the 'huff and puff' attitude. But nevertheless I just ignore it and push past. Perseverance is the key :-)!

Thanks again, hope all continues to be well with you.

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He maybe didn't want to know what was on CT scan, just to let your mother have a little respite, in case it wasn't good news. I don't know how their minds work. I presume he thinks he is doing what is best for her??

Sorry I don't look on this email site too often.

Best wishes.

Eileen xx

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Hi there drdu. Your story is so inspiring. Could you please tell me what dosage you take of ibuprofen please x

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Hi Is Vimovo an NSAID, also do you can you take these drugs if on avastin for maintenence, my Ca125s are really annoying me they were over 1000 before treatment last November they only reduced to 181 after carbo/taxol avastin in April. I had a two month break and CA125s went back up to 220 then after another avastin down to 202 then another avastin back up to 249, i was never ned. I feel fine I am 36 years old and diagnosed stage 4 late last year. Take care Clare

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I hadn't heard of it, but when I went to Google I found it is an NSAID, Naproxen, with esomeprazole built in to protect the stomach, which is fine. Yes, I believe you can take that along with avastin, but best to check with your oncologist to make sure it is ok for you.

Best wishes.

Eileen x

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Thanks Eileen my oncologists approved it as I could not tolerate Tramadol or codeine but it was prescribed for pain from chemotherapy, as i am no longer in pain on avastin I have stopped taken it I might try disprin my CA125s are so worrying i hope you are still doing well. Thanks Clare

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Dose of disprin would be 75mg tablet once a day, or similar if you are in another country. As long as you tell your oncologist you want to take it, as he/she knows your full medical history, and I don't.

E x

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