I only finished first line chemo in Jan with a summary that I was stable with no visible disease and ca125 of 8. Now my ca 125 has risen 3x from 15 to 29 and 42 and there is signs of active disease on my CT scan in peritoneum and outside the bowel in my pelvis.
Onc wants me screened for the Mek inhibitors trial LOGS or I can start on letrozole with metaformin.
If I choose mek trial, could get randomised to chemo and my and oncologists choice would be letrozole before chemo as I have poor response.
Are there any low graders on LOGS who can tell me how frequently you get the mek inhibitor and the side effects.
Any thoughts from anyone whether I could try the letrozole hormone therapy first and see if that stabilises me first. I suppose I'm looking for the courage to try that - you never know I may stabilise and it might give me time to reverse my stoma before more chemo. but oncologist said the mek inhibitor trial could close and I might miss out.
Just looking for any advice or experiences to help me in my decision. My nurse is back on Monday but want to start informing myself today. Thanks in advance.
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Hi I can't comment on the LOGS trial but I'm also low grade serous. I do follow the COC protocol and I'm on Tamoxifen. Initially I was put on letrozole but I had side effects so I was changed to Tamoxifen. Interestingly the coc clinic prefers me on Tamoxifen, something about they work better together. I have read some interesting articles about how metformin makes Tamoxifen more effective.
When I finished chemo last May my ca125 was still in the 50's but the scan was clear since then it has fallen slowly but consistently (with a jump up here and there then a fall back) and this weeks reading is 28. Interestingly in Norway where I was first initially treated the normal ca125 range is 0-50 so I've been in the Norway normal about 9 months or so.
I've been to see Prof G in Edinburgh who's leading the LOGS trial but he's happy with me at the moment and the treatment I'm getting. Particularly the Tamoxifen.
It's a difficult decision. I really have no idea what I would do in your position. In America every low grade lady is automatically started on a hormone blocker as soon as chemo is complete. A paper from MD Anderson in Houston came out last July discussing the importance of hormone blockers. It was this paper that I took into my oncologist in Norway and asked to be put on the hormone blocker. I've shared this paper before so if you look at my posts you'll see it. It has been shown to have really positive effects.
You wonderful lady! You know I have been going to and fro with oncologist about adding hormone therapy to the Avastin and also COC. So right now I'm kicking myself and trying not to reflect on the past which I can't change. Oncologist says the letrozole wouldn't have changed the outcome but then is offering it as a therapy if I don't want the trial. I think the unexpectedly relapse means he wants to start with soemthing.
Remembering that you weren't ever quite clear and are keeping more or less stable is so heartening - thank you for sharing. I know I'm not but let's see if I can get back there.
Good news is that I'm in touch with Prof g the USA specialist, referral to your guy is in progress and so is COC. So I'm inclined to stay off trial unless mek inhibitor evidence is compelling (which I don't think it is) to try my more integrated regime with hormone treatment or more chemo. You never know I may stabilise.
Today's confirmation has just shown that whilst all the above was happening, I haven't acted soon enough. Sadly I was trying to see a chap first at msk who focuses on preventing the first relapse - just missed that boat. Lesson harshly learned but onwards and upwards!
I would also say that I have changed my diet and I exercise much more and I think these have had an impact also. I also take melatonin at night. For 2 reasons, firstly it has been shown to have anti cancer properties and secondly it makes Tamoxifen more effective.
I do not believe there is a silver bullet but a combination of things working together works better . Finding the right combination now that's the problem.
Absolutely. I've done the same. I love my exercise regime which is mixed and includes yoga, cycling, walking, body balance. And now I'm adding in resistance work a couple of times a week. Diet is always a work in progress as symptoms change but again. I do the obvious supplements including starting melatonin a couple of weeks ago and I was planning to add in mushroom extract too. So it's just a bummer. When I realised I was relapsing. I felt like reaching for a glass of wine but then I got my other half to go to the gym with me as usual and I did a bodybalance class!
After my chemo I was not put on Tamoxafin, did not even know they recommend that for ovarian cancer, just breast. I was diagnosed and treated in Ecuador. Who is professor G you mentioned. Also what is COC. Big hugs to all you wonderful ladies that I just might through this blog. What a great tool to have to help each other in many ways.
Hi there - wow, you are so informed. I am about to start taking Metformin via my GP here in France. Can you tell me how much you take per day? Are you also taking the statin and the other COC protocol stuff? Do send message if easier. Huge thanks, Nicola
I'm taking the metformin, the statin and the mebendozole but not the antibiotic (it didn't agree with me). So I take mebendozole 3 months on 1 month off.
Metformin I take 500mg twice a day. They did discuss increasing this but because my diet is healthy they have left it. I'm assuming if my ca125 starts to rise then maybe they would change it.
Hi Michelle - thanks for all this. Will discuss with GP here. Very keen to try. (Now confused as in another post I see melatonin also being mentioned...). I may come back to you as I plough through all the information/research. Huge thanks - Nicola
I also take Melatonin at night. It's difficult to get at high doses in Europe so I stock up when I or any of my family travels to the US. It's classed as a vitamin there but a hormone here. The weird thing is vitamin D is classed as a hormone but sold as a vitamin!!! Doesn't seam to be any consensus.
Happy to pass on what I'm doing or what I've found. No problem at all just get in touch
I am on letrozole for high grade stage 3 reaccurance after 3 mounths of first line treatment ca125 still going up but they say it takes 3 mounths to work so won't know till August been ok on tablet I can't get more chemo just now to soon xx
Well the hormone therapy does work. It's the choice maintenance therapy in the USA for low grade. Fingers crossed for your results in August. If I find anything out that might help you during my investigations, will let you know. You might want to google metaformin and impact on ovarian cancer. It's an idea of soemthing to consider adding to your regime if you haven't already. I thought it before but am now convinced, we have nothing to lose by a multipronged attack on this heterogenous disease x
Hi my CA has been creeping back up since I finished chemo (carbo) and started on letrazole 18 months ago. It was 49 in March and a scan showed a new nodule on my spleen and some thickening of the bowel wall so I was referred to see someone to see if I was eligible for the LOGS trial. I was told no as you need to have measurable disease of at least 10mm and mine was measuring in at 8mm. The onc I saw seemed to think that another hormone blocker would be better for me than chemo and if I was put on the trial she would recommend tamoxifen and then if that didn't work then I would be offered the trial drug. As I was eligible for the trial I was offered another hormone blocker to try (I can't remember the name but it wasn't Tamoxifen) but another CA125 I had done showed a drop down to 46 so I decided to stick with the letrazole. I saw my Onc again last week and my CA125 has dropped again to 42 so I'm now considered stable and am booked in to see her again in September. I'm confused as to why it has dropped and I'm not holding my breath that it will continue to do so but being told I'm stable is good enough for me. My advice would be to go and discuss the trial and then make a decision from there as it may be that you aren't eligible anyway. I hope this helps, Kerry X
Kerry I'm so sorry you have had a creeping ca125 until disease was evident too. But thank you for sharing. It's good advice to explore the trial and get screened. I will. I admit my oncologist warned that I may not meet criteria yet.
The problem is that if I didn't get the mek inhibitor I would withdraw because all the second arm drug options are available off trial and then I wouldn't have to stop complementary treatments. I know ethically it shouldn't but I wouldn't want a withdrawal from a trial to be held against me because I will need trials in the future.
Also very interesting to Hear hormone therapy working for you. USA doc wanted me to maintain on that not Avastin anyhow.
I would still look into the Trial anyway because my understanding is that if the first option they offer you doesn't work then they automatically give you the trial drug as a second option. You might even be offered the Trial drug straight away. Kerry xx
I see you live in the U.K. And consulted MD Anderson. We live in Canada and also want to consult them. Do you have ideas about costs if that's not to rude? I read somewhere we will need 40$ thousand in a bank account there before they will even look at you. Not sure it's worth it as finding that money for us would be so tough
Hi Maxine. I would share if I knew the professor who has reviewed my case was very generous and didn't charge because I was introduced via my American brother in law who is also a medic. I will message his details. Treatment might require such an amount but a proper case review won't. I nearly paid for a review at memorial Sloan Kettering in ny. So I will look up their charges and message you. I will also send you details of the low grade specialist at md Anderson but I bet you know his name.
Hope it works. You may have to register. I think maybe I did but when anything relating to OC is published I get an email. Find it interesting on the whole. It's not often it's about low grade serous but this one is.
I did wonder if that would happen. You can join medscape. I did previously and signed up to emails regarding oc. They notify when there's anything about oc. It's a US site but I find it interesting.
This is a really interesting post. thank you. I am a low-grader, took Letrozole for about 2 years, no side effects whatsoever and kept my disease stable. If I were you I would take Letrozole, but of course you may prefer the trial. There are people on the trial who belong to this forum, I am sure they will reply to you soon. All best - Nicola
That is encouraging. Were you ER/PR positive - abundance of eostrigen receptors when your tumour was analysed. I'm not but the hormone blockers allegedly can still work
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