Hello my dear ladies. Hope you are hanging in there and getting some joy out of the summer days.
Just an update from my side...
Background reading: Diagnosed Oct 2015 with stage 3 borderline/low-grade serous OC. Had surgery, then watch and wait. Low-grade recurrence in lymph nodes in early 2018 was treated via surgery, followed by 6x carb/tax chemo and then maintenance Avastin and Letrozole.
And so it went, until last month, when my bowels started a summer revolution and decided to bleed. I would say it scared the cr*p out of me but that would be a really bad pun. Still.. all I could think about was a recurrence involving bowels, and a bag. Contrary to that slightly worrying imagination though, my ca125 had dropped a little further, down to 69 (which is an all time low for me), so maybe it wasn't OC after all?
After a couple of weeks during which I observed that my bowels were fine as long as the stool was nice and soft (one industry sized order for Movic*l coming up) (sorry, TMI), I went and had a colonoscopy to see what's up in there.
Colonoscopy - nice experience. Pleasantly friendly staff, perfect anaesthesia, didn't feel a thing. Woke up and was fine.
Preparation - oh my. Ok, it wasn't my first rodeo in that regard, and there are so much worse conditions out there... I shouldn't complain. And.. as you probably know, a bowel cleansing exercise goes with the big debulking surgery too. Already back then, the vile liquid I had to ingest decided to come out the wrong way. But this time I was told it was a brand new mixture.. very well tolerated indeed by everyone. 3...2...1...cue the bucket. Apparently I'm not everyone. Yay?
The savvy project planner thinks ahead though and preps his/her tiny loo as follows, for an extended stay the day before a colonoscopy: A travel bidet, a bucket, a water glass, a small laptop table, a gaming laptop. So at least I could game a bit while doing the cleansing thing. Thank you Ikea, and thank god my internet router is right next to the loo. Is that a pro-active setup or what?
Luckily the colonoscopy showed nothing sinister (the people in the know talked about hemorrhoids or possible small fissures causing the bleeding, and advised to drink 3l of water a day) - pheeew. That said, I subsequently agreed with my oncologist to stop Avastin after all. Bowel damage (however minor) & Avastin is just a scary combination in my mind, even though I had hoped to continue with it for a while at least.
So.. no more Avastin, which also means no more bloodpressure meds. Just Letrozole and low dose ASS, plus 6-monthly tumor marker checks (scans if needed).
And you know what? I feel considerably livelier already. The neuropathy damage in my feet is easing up a little too, funnily enough. And the nasty cough is gone, which came free with the ACE bloodpressure meds. Almost like starting a return journey to the person I used to define as me. It's not perfect, as I still get very tired in the afternoon/early evening and am shattered after a full work day. But I do feel noticeably more alive and interested in the world around me now. Wow.
So, long story short: I'm fine.
Please stay as well as possible, everyone. Your compassion, advice, and general kindness softens the edges of this disease for me. I owe you . xx, Maus
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Hah Katie, I think sometimes, when the misery isn't actually too bad, you've got to laugh at yourself and think 'What if aliens invaded earth right this minute, and started at my flat? What would they think of us...?' . Stay well. xx. Maus
Glad it wasn’t anything sinister -I’ve never lived in such intimacy with my bowels since diagnosis and it’s clearly an OC thing! Yay to feeling alive and long may that continue xx
Fair point, Linda. I stopped the BP meds on my own initiative, based on the reasoning that.. no Avastin, no BP rise, no meds. But uhm.. I haven't actually kept tabs on it very well lately. Maybe I better dust off that sleeve and keep an eye on it. Hope your BP settles soon. xx. Maus
Thanks for an informative and helpful post. I am low grade 3c also. My oncologist recently suggested that I start Avastin. It scares the heck out of me due to bowel involvement and risk of perforation. My oncologist said we can "try it and monitor how it goes." Can you tell me more about your monitoring protocol to ensure avastin wasn't causing bowel issues and the decision to stop it? Could you tell me how many avastin infusions you had before stopping? Thanks!
Ditto to busbee3's comments. Headed to see Gershenson at MD Anderson next week. Numbers on the rise so would love to be prepared if he recommends Avastin. Thanks and glad you're feeling like your former self!
Hi Busbee. It's really a tad experimental for low grade, listening to my consultant. I started Avastin during the regular Carb/Tax chemo last year and have had 20 doses of it, over the course of about 13-14 months. Mine was the full dosage i.e. 15mg (per 1 kg bodyweight or something ? don't quote me on that).
My oncologist said that he would only be concerned if I had bowel involvement with my OC (beyond the initial non-invasive borderline deposits) and/or bowel resection. We didn't monitor bowels specifically. They raised their case on their own via a light red stain on the tp after going to the loo (sorry, TMI again). It's not a perforation nor a fistula (both of which worried me about Avastin), so I'm content. From where I stand now, I'd take it again I think, in the same situation, since the therapy options for low grade are somewhat limited.
Thanks for posting this uplifting message Maus, just what I need today as I'm feeling things are not going right. Great to hear you are feeling more alive - that is a truly wonderful feeling!! Ruth xx
Uh oh, Ruth. I thought you were on observation and any potentially microscopic tumour cells had agreed to lay low for some years to come? Hope you feel better soon. xx. Maus
Tnx Maus ... So kind of you to think of me. Feeling more like my old self today - had been slowly working myself up into a frenzy the past couple of weeks, culminated yesterday. Got everything crossed the weird sensation I'm getting is surgery related, adhesions, scars etc. It's a very odd kind of pulling or feeling like something is wriggling inside me and occasionally makes me jump as it feels that something is about to turn inside out. Can last for a few hours a day. Only on left side right under one boob & kind of on the diaphragm. There is a lot of scarring there. Discussed it a month ago with onc. He had a good poke around & he seems to think it is exactly that & damage to nerve endings. Having a PET scan end of this month as it's over a year now since last one prior to my surgery (so I'm anxious about that too). My CA125 has been great at 10. Yep hoping anything lurking about is in a deep coma. You keep well - love your loo setup. xx Ruth
Nice to hear from you...sorry Avastin didn’t work out. It seems to be rather uneven in its results. I had 16 cycles but I have no idea if it really did anything. I certainly felt better once I stopped. Best of luck for the future xx
Thank you Lyndy. It is the one thing that's a tad scary about these last days: What if it was Avastin that's been responsible for the drop in ca125? But still I feel this is the right decision at the moment. We'll have to see what happens over the next few months. All the best. xx. Maus
Maus--a humorous way to say things were not so wonderful for you but I am so glad the bowels are good, you feel more human and you are moving onward! I will tell you at Memorial Sloan in NY, they started a new regimen for the bowel cleanse before those surgeries and I found it much more tolerable. If you ever have to again (let's hope not) I will figure out how to attach the instructions on here for you and possibly others. Hope you are having a lovely weekend. oxoxoxo Judy
It's a first world complaint really, compared to what many of us are facing every day in or out of treatment, including yourself right now. Oh, I'd be interested in that new bowel cleanse procedure, if you come across details. Sure it wasn't the last time.
How are you doing on your new chemo regimen? Is it ok to tolerate? Fingers crossed for you, Judy. Hugs. Maus
You are so kind to remember Maus. I am not finding this regimen an easy one or something else is up. I cannot "go"!!! I take so much I almost worry its too much, and then nothing. I know we all have dealt with it and I did fine through 2 other lines of treatment but this one--or whatever else is going on--is not easy. (Gemzar is the new agent for me). I don't know what to do but not happy right now. My ca125 after the first cycle halved (800 to 400) so I believe its working, but the pain I am having is not normal. I am STILL going swimming daily (gotta keep moving as they say) and in NY right now, we are dealing with 100 degree heat that feels like 110, which isn't helpful either! OK I feel bad complaining so will stop here. If you know of some miracle substance I may not have tried, let me know but otherwise, I am calling my oncologist tomorrow.
I will also try to figure out how to upload those instructions so you can print them out for some time in the future and I will post for all (I don't know how to tag you but I know you see my posts so you will know when I do). oxoxxoxoxo Judy
Maus you got through all that and now the bonus is how well you presently feel. Long may it last. I've had 4 weeks without chemo or meds and am feeling the joys of summer. Start on Olaparib next week, so see how that goes. Thankful that the NHS has had a re think on who can get this drug. All the best.
Thank you Sylvia. Glad to hear that you enjoyed the break. Is this Olaparib part of the icon trial or on its own? Regardless, I hope you see similar results as Kathy and it will keep your disease in check for many years. Best of luck with it. xx. Maus
It will be on it's own, unless the ICon 9 trial accept me. Still in limbo on this as my blood pressure has not been within limits of late. So l have new bp meds but only this week so need time to take effect. Will update in due course. Stay well. x
Hi Maus So glad your colonoscopy showed everything was ok and there was nothing sinister up your bum lol x
That must of been scary bleeding from your bum and we automatically go to worse case scenario in our heads don’t we x
I love your toilet set up that made me giggle 😂
Lovely that you’re starting to feel better and more like you already! I’m hoping that’s going to happen to me soon after finishing chemo 2 weeks ago! Like you, I think I’ve forgotten what ‘me’ feels like now!
I really hope the neuropathy in your feet continues to improve as I know you’ve had problems with it for a while now x will keep everything crossed for you 🤞
Hey Maus, thanks for the update . I’m so glad you feel more like you again... long may that continue.
Is there a plan for what next or are you just carrying on and crossing that bridge as and when?
I completely resonated with you re stopping a treatment and feeling really well again. I had two cycles of Carboplatin a couple of months again that made me so very ill that we stopped. It didn’t reduce my ca125 anyway. Once I recovered from second cycle , like you I felt more like me than I have in a long time. Some days I don’t even feel like I have cancer!
Apparently Avastin is not available to me (UK) so I do not yet know what is next. I’m back on hormone blockers for now.
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. Thank you kindly. xx. Maus
. Cheers, Debs.
Carboplatin/taxol with Avastin for 2nd line treatment
continuing on avastin
THE REASON WHY I HAVE BEEN REFUSED AVASTIN - but it aint over yet folks
Immunotherapy with Avastin 
Cyclophosphamide and Avastin
