Tamoxifen

Hi ladies, I had appointment to see my oncologist today. My ca125 as risen slightly, Ihad scan beginning of January and was ned and ca125 had gone down to seven from nineteen I think 🤔. Today it's gone back up to nineteen. So he as put me on tamoxifen tablets, I have to take two a day and I see him again in eight weeks. I wondered if anyone else has been on these. Xx

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  • I'm on Tamoxifen. Been on it since November. I know some people have side effects but I've not really had any. I'm on it because I'm low grade and it's often hormone driven.

    Get more bloods next week but the previous ones my ca125 has continued to fall slowly.

    I'm happy to keep taking it for as long as it's working 😊

    Hope it works for you.

  • Thanks bibs, I have ppc stage four. Xx

  • I have been on tamoxifen over a year. If it helps keep taking it. For me it appears to have stopped working now. My next treatment will be calaex.

  • I've been on Tamoxifen for 15 months (after chemo and surgery for PPC) and have felt well during that period. Unfortunately new cancers have recently developed and I need more chemo. But it certainly helped me, and I hope it will help you for much longer.

  • Thank you Allison for your reply, I am sorry you have to go back on chemo,. I looked at your profile and we both started around the same time. In may 2015, I had never heard of ppc till then. I am hoping these tablets will help me, and good luck with your treatment. Please stay in touch. Xx x

  • I was told I had secondary cancer in my lymph nodes two years ago. I have been taking ibuprofen and my bloods have been up and down. But then about six months ago they went up quite a bit. So oncologist suggested I go on tamoxifen at November appointment. My ca125 went up to 83 in January. I was worried but oncologist said it may take a few months for tamoxifen to start working. Latest ca125 last week is 80. So it's come down 3 points. I am over the moon. I am still taking ibuprofen too. I was told tamoxifen doesn't work for everyone but for me it was a better option than chemo again, I think maybe it is working for me. It's worth a go. When I first went on it, I had a few hot sweats and I now have a lot of leg cramps. Don't know if this is related. Apart from that, I feel fine and keep busy. Good luck. Xxx

  • Thanks Sue, I hope it works for us both. I see oncologist again in eight weeks so won't know if it's working till I next see him. Good luck with your treatment. Xxx

  • Thanks very much. Yes I too hope tamoxifen works for us all. Xx

  • Hello Sue, May I ask why you are taking Ibuprofen?

  • Hello rijkje. I am taking ibuprofen because I used to take it for a shoulder injury and I noticed when I stopped taking it my ca125 went up. Also a lady (ex gp) who is on this website recommends it. As it works for her. I think there is some information out there that says that anti-inflammatory drugs can help. I also take omeprazole as I know taking ibuprofen long term isn't good for you. But at one time it definitely seemed to help me. I am still taking tamoxifen. Unfortunately my latest blood test shows my ca125 has gone up to 95. So I am having a ct scan shortly. I feel fine though, no symptoms. I have been tested for BRCA, I was negative.

    Hope you receive this okay.

    Take care. Sue

  • Hello sue. Thanks for your reply. My Onc will give me tamoxifen if i want it. I am also BRCA negative. Has the tamoxifen worked for you? If so how long have you been taking it. I finished 2nd line chemo in may and even though I've been on avastin my ca 125 has come back up too 200 an ct scan shows slight increase. I have no symptoms and feel fine. Hoping to hold of on chemo for as long as possible and looking for ways i could make that work. Not sure if my onc will support ibuprofen or aspirin for that matter. Now we've stopped avastin, which i have to privately fund in new zealand i am no longer financially interesting for him. What dosage of ibuprofen do you use? What stage oc do you have? Have you had any recurrences? How long since your last chemo? Do you get ibuprofen from your gp or onc? Good luck with your scan. Hope it shows at least stable disease. Sorry about all the questions. Take care Marijke xx

  • I was diagnosed with stage 1c ovarian cancer in 2008. I had a radical hysterectomy followed by chemo (carboplatin and pacletaxol) I was also on a clinical trial for one year on avastin. I am treated at st james hospital. Because I was on the clinical trial, even though there was no signs of cancer I was still seen in clinic. I had reached one yearly appointments. My ca125 was going up very gradually. Then in March 2015 it was over 35 so I had a ct scan. This showed a swollen lymph node. My oncologist said I had a reacurrance of cancer. Treatable but not curable. I was on what they call watch and wait. Over the past two years my bloods have been a bit up and down. But now steadily rising. I am having six monthly ct scans. My last one showed that I now have two swollen lymph nodes. Because of this and my rising ca125. My oncologist said he would try me on tamoxifen. I went on it November 2016. My bloods went down a little bit. But now 95. The highest they have been since first diagnosis. I feel ok. No symptoms. I am very positive and keep busy and try not to worry. St james hospital think chemotherapy should be used later on in treatments. From studies they have done these show that starting chemo sooner doesn't prolong life longer than if you start it later. I was very poorly first time round with chemo. So I have said I want to leave it as long as I can. I look after elderly relatives and grandchildren, so to be honest I haven't the time to be ill with chemo. I take 400mg ibuprofen three times per day plus 40mg tamoxifen daily. I get these from my gp. My friend is funding avastin herself too. It's not given now as second line treatment.

    I don't mind answering your questions. Just hope you understand what I have put.

    Good luck. Sue xxx

  • Are you BRCA positive?

    I have asked my oncologist for tamoxifen as I am facing my second recurrence.

  • Hi, no I had test done for brca but it was negative. Is your doctor going to give you tamoxifen? Xx

  • He will if i want it. Did it work for you?

  • Well last time I saw oncologist my ca125 had slightly risen. But he told me to carry on with them for now. I will be seeing him next Monday so fingers crossed I am hoping that the tablets have kicked in. And my ca125 as gone down. Xx

  • hi Juliet,

    I have been taking tamoxifen for 2 years now and will do so for the next 3 years - God willing!! Mine is a 5 year prescription to help reduce my risk of breast cancer! I had ovarian cancer in 2014 and afterwards found to be BRAC1 and so now at high risk of breast cancer. My mother had breast cancer at 48 years old and then again another primary found in the other breast a few years later. Sadly, she died when she was 60 years old. I don't mind taking the tamoxifen - anything that helps!! Good luck, hugs and best wishes Jacqui xx

  • Thanks jacqui, I am so so sorry about your mum, I had the braca done and it came out negative. My daughter in law is on the same tablets as us, she had breast cancer but is doing really well with them. Long may it last. Sending love and hugs. Julie xxx

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