Morning all. Not been here for a while. Have felt a bit low.
Saw consultant yesterday. She's sending me for a PET scan. They need to see visible disease before they start chemo. A CT scan doesn't show anything.
My next chemo regime will be carbo and another one beginning with C. I won't lose my hair but it will thin. Will have chemo every four weeks.
I don't feel so much in limbo now but still worried.
Sending all you wonderful ladies lots of love xxxxx
Hi Suzanne wishing you all the best starting chemo again, L x
Aww. Thank you. . Xxxx
Hi Suzanne,
That's the same regime that has been proposed for me. I still haven't started yet, and I'm hoping not to for a few more weeks. Has your CA125 gone up again? I remember it being on the rise. My next follow up is on Tuesday.
Lots of love, Vicki x
Hi Vicki.
It was 113 three weeks ago. Not had any more bloods done yet. Next one will be after the PET scan. Once I'd finished chemo in January and was on avastin only, my CA125 went up each time.
I don't know when I will start the chemo. Got to wait till after the scan.
At least we won't lose our hair (it thins a little apparently) and chemo is every four weeks. I guess that's the positives out of a horrible situation.
You are in the same boat as me. Please let me know how you get on etc.
Thinking of you. Xxxxx
I will do, Suzanne. You do the same. I hope your scan comes through quickly xx
My consultant has suggested that for me if results on Monday are not good enough. My recurrence only showed on pet ct but ct after showed very little chemo started based on rising CA125
Good luck with scan hope it's clear
LA xx
Hi Lily.
Aww thank you. I was wondering that if they don't see anything on the scan would they still give me chemo but I think they would as my CA125 is rising but she wants to see something first.
I have a friend who has a small tumour yet her CA125 is half what mine is. I don't know why nothing is showing.
Weird disease this is. Horrible weird disease.
When will you start your chemo? Is this your first recurrence? Xxxx
Dose 4 is on Wednesday this is my 2nd recurrence the first was 2015. They are taking about adding caleyx if there's not enough improvement in my CA125. My last 3 readings were 196. 236, 228. Which is high for me. Results Monday. The only reason they started chemo is pet ct showed liver spots which isn't on ct.
xx
Hi Lily.
I hope your results are good. Let us know how you get on.
Maybe that's what I e got, little spots somewhere. Does it usually come back on the liver. Xxx
Hi i have just finished this cocktail for third recurrence, minimal thinning of hair, personally I didn't find this chemo too bad as it is 4 weeks i even managed a holiday to Portugal mid treatment! I hope all goes well for you Pam x
Hi Pam.
Thank you for your message. I've heard from others that it's not too bad. I'm hoping to be able to still work. Maybe a week off work and three weeks at work.
I'm glad you managed a holiday. I hope you had a fab time. Xxxx
I started caelyx on Thursday so just waiting for the side effects. Hoping it won't be too bad like Pam said xx
I've read a lot of women have said it's not as bad as taxo/carbo.
Good luck. Let us know how it goes. Xxxxx
Will do I'm just having Caelyx as on a trial and allergic to carbo. Hope the scan goes ok xx
Hi Suzanne--the waiting in all its forms is just hard! Waiting for CT scan results, waiting for blood results, waiting for something to show on your scan.....the mental aspect of this disease is so difficult as well. Strange your scan doesn't show anything. At MSK (NY) they won't do the PET scan--their m.o. is CT scan only (I am not sure why). I guess you can try to look at it as a longer break. It's also good to read above that the combination is not as hard as taxol/carbo---will they try a PARP for you after this treatment?
I went yesterday for my first treatment for my first relapse which is immunotherapy only. One hour in the chair for the infusion, no pre-meds, and every other week. I feel no different (I hear effects come later if any) and have 16 weeks before the scan that tells them if its working. I hope this will become another treatment for all down the road. Fingers crossed. I am wishing you a better day and that when treatment starts, its easier for you.
MaxJor
Hi there. Thank you for your message.
I've heard of immunotherapy. I don't know if and when they might use it here.
It sounds very good. I've heard so much positivity about it. I'm hoping it gives you a very very long remission.
Xxxxxx
Hello Suzanne, Just to say I hope that your PET scan goes well & your treatment. Good to know that you will not lose all your hair.
Take care,Love Caledaxxx
Hi Caleda.
Thank you. I'm a bit nervous but I'll be fine. I'm pleased about not losing my hair. I know it doesn't really matter if you do and it's your life which is obviously more important than your hair but I will be glad to keep my hair now that it's growing quite well.
I hope everything is good with you. Xxx
Hi Suzanne, So far everything is ok for me,sometimes I feel it is like living on a cliff edge,but generally speaking I just get on with my life. I have just had my first 6 monthly checkup come through which is not until 21 September so as the time gets nearer I will no doubt become more anxious.
I hope things turn out well for you.xxx
Hi Suzanne,
I will be having the same chemo for 2nd reoccurrence , CA125 went to 120
CT showed reoccurrence.... got bloods Monday and chemo Wednesday
I am really not looking forward to starting again as I feel so well .
Hope we all don't have to many side effects from carb/ caelyx
It will be nice to hear how you all get on .
Pauline xx
Hi Pauline.
Yes you're in the same boat as me. I'm sorry you are having a recurrence too. Bloody horrible disease. Wish it would leave us alone for a good few years.
Let me know how you get on. I've heard this regime isn't as harsh as taxo/carbo.
Take care. Xxxx
Hi,
I am sorry you are too..... To be fair I wasn't to bad on carb/taxol so I am hoping it won't be this time ...... just my luck if its the other way round for me and i get a lots of side effects ... Lol
Pauline xx
Hi pauline.
I'm sure it will be ok. Very doable. We will be fine. Xxx
Hi Suzanne,
Yes I am sure we will as you say doable..... last time I had it weekly that was hard but I got though it and I will this time .
Let me know how you are doing .
Pauline xx
Hi Suzanne. I found this article - foundationforwomenscancer.o... - eased my mind somewhat as my CA125 is almost 400 and freaked me out but the oncologist said that he has seen very much higher in ladies that have survived. Mind you, I don't start treatment until next week. I hope you get some good results from the PET. Good luck and hugs.
Hi Kryssy
Just before I started my first chemo my CA125 was over 5,000. At the moment it's 113. Whatever is in me is hopefully very small and will get zapped this time. Hope you are ok. Xx
I'll keep everything crossed for you. I suppose my CA125 isn't so bad considering but reading the article I linked to put it all into perspective. Good luck and more. xx
Hi Suzanne I hope your pet scan isn't as bad as feared. But a few ladies have found Carbo and Caelyx has worked for them so keep bearing that in mind.
Hi Suzuki.
Thank you for your positive post. I'm keeping positive. 👍🏻👍🏻
I hope everything is ok with you.
Xxx
Hi I'm in next bed to a lady with Caelyx drip she had saved her hair and on her tenth year.
Ladies.........may I say how much I admire you , all going through such scary times yet each and every one of you sounds soooo positive and upbeat, feel proud of you all! xx
Hi Suzanne
I have just had dose no 4 of carbo/caelyx and it is very do-able with very little hair loss but first round did give me constipation which is sorted with a few days of Laxido. The whole process on chemo days is only a couple of hours plus the usual flushes and I have been able to carry on much as normal except for some fatigue probably due to low blood counts and a low magnesium level that caused cramp in my hands and feet. Supplements have sorted that though!
I have managed a holiday abroad in July and just come back from a hectic city break. Will be getting ready to go off camping later in the week!
I am sure you won't find it as tough as carbo/taxol and wishing you all the best xxx
Hi and thank you for your reply.
I'm
Glad it's doable. Glad about the very little hair loss too.
I'm hoping to be able to go to work while on it. Hopefully. Did you get really tired for a few days after or were you ok?
I'm glad you managed to do the things you wanted to do. Xxxxxx
Hi Suzanne
Unlike the carbo / taxol this combo seemed to peak around two weeks later with the fatigue thing but not so bad that I couldn't keep going - just needed to pace myself a bit plus a bit of ankle swelling but that would go down overnight. The steroids kept me awake the first couple of days but otherwise it was fine! Hopefully you will be too and keeping everything crossed that it will work for you. I am waiting on midway scan results but we seem to have a backlog down here!
Best wishes, Jane😊
Hi Jane.
Aww thank you for that info. I feel better about having it.
I hope you get your scan results soon and they show everything is good.
Thinking of you. Xxxx
Hi. I've recently finished carbo/caelyx for first recurrence. It wasn't too bad at all although there was no pattern to my side effects and how I felt, it was different each time. As it is every 4 weeks I did manage to work in between - not the week immediately after, but the 3 weeks before the next one. The fatigue does accumulate though so be careful. I'm a teacher and was allowed to go on a reduced timetable meaning I didn't go in until mid morning. Hope it goes well for you x
Becky
Hi Becky.
Thank you for your reply.
I'm planning to do that too. One week off and three weeks working. I work in a college as a learning support assistant.
Did you get paid for the week you were off? Xxxx
Yes - as I took them as sick days and I had a fit for work note from my doctor saying I was fit for work as long as they made reasonable adjustments. I had a meeting with occupational health and we came up with a reduced timetable together.
Sending big positive hugs Suzanne! You got this xxx
Aww thank you Jessica. I'm all prepared.
I hope everything is good with you. Xxxxx
Hi lovely,
My special person has just finished Carbo /Caelyx and she has had a fantastic response to it she wore dark nail varnish throughout due to the possibility of nails falling off which none have and has had loads of energy she'll also be starting Niraparib in September as another maintenance drug she has a CT scan soon hopefully it'll show NED as it's been blasted with a 5th dose after her CA125 was 10 last week.
Xxx
Hi there and thank you for your very positive reply. I'm so glad she did ok on that regime.
Is she doing a trial in order to get the niraparib drug?
I'm so pleased shes doing well. 💪🏻💪🏻💪🏻💪🏻Xxxxx
No she can get it because it's 3rd line and she's responded really well to Carbo xxx
Hi Suzanne
I haven't had that combination but have heard it's effective. Wishing you all the best!
Juliet x
Hi Suzanne, I 'm on carbo/caelyx I have had 4 so far two more to go and it has been quite easy very little side effects. for me it's proven to be great my 125 went up 1300 after 3 treatments now down to 176 .
Next Monday will be my 5 treatment so hopping it's still going down. This is my 5th line treatment I did have single Caelyx as 3rd line and had some success, that is way my oncologist put me on Carbo/Caelyx , my history is as soon as I stop chemo my 125 goes back up.
So this time I will be going on a lower dose Calyx as a maintenance treatment after my last Carbo/ Caelyx, I hope this combo works as well for you.Best wishes Lorraine💙
ps, I still manage to go to my part time job.
Hi Lorraine.
Thank you for your message.
It gives me a positive feel about it. I'm glad I will probably be able to go back to work.
This will be my second line but my CA125 started rising as soon as chemo was stopped. Even on avastin.
I'm glad you are doing well.
Hugs. Xxxxxx
hi Suzanne
I hope it goes well. I was told PET wont see anything different from CT scan, they both have similar tolerances ie about 1cm size. so I wonder if your PET scan shows anything....
are they checking of distant sites mets?
it sucks to see CA numbers to up and not being able to see it 
Kx
Hi.
I don't know what it might show. I think they'll probably start chemo anyway.
On diagnosis my CT scan showed no mass just a thickness which was my omentum folded over.
Strange disease this is. Xxx
It can be strange however if you have mets in bones on brain (therefore nothing will be shown on either ct or pet scans) chemo isnt the answer and you might need radiotherapy instead. My onc said she wont be able to do any further treatment untill its detectable size/place. CA numbers arnt always reliable markings.
Good luck
Kx
Oc does not go into bones... well professor of oncology in Northampton told me this.. ?
Oh yes it does. Bones, brain and anywhere outside abdomen - heart, lungs etc...
Bones and brain are more rare but not unusual at all. Just search distant sites for ovca mets. No chemo gets into brain - read about blood-brain barrier. Therefore no chemo can be started without measurable disease.
Your professor knows it very well too whatever he tells you. Otherwise get second opinion
Wow you are so uplifting... ! Ladies here are looking for support.. just saying!
Ladies with reoccurrance
Morning ladies
