1st reoccurrence?: Down in dumps today. CA12... - My Ovacome

My Ovacome

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1st reoccurrence?

Robbo16 profile image

Down in dumps today. CA125 been gradually rising since I started Niraparib and Letrozole in April. From 7 on April to now being 40.8. Although only just out of normal range the trajectory is up and based on the level of rises so far I expect it to be around 80 in a couple of weeks time. My scan in September was NED.

Call with Oncologist yesterday he said likely that cancer was active again just not being picked up on CT yet.

My next CT will be in 6 weeks and if cancer shows I will be considered for secondary debaulking surgery and more chemo. If cancer doesn’t show it’s ugly head on CT I will have a PET scan.

I had carbo/taxol first time round but Oncologist said I would likely have carbo and something else.

I’m interested if any of you lovely ladies have been in this same position and what your treatment pathway was for 1st reoccurrence? 🤔

43 Replies

Hi... ive had recurrences and for the first had carbo/gemcitabene (think thats how its spelt lol). Same side effect as prev tho no hair loss (slight thinning). Happy to say it worked fine. I wish u well. Kathy xx

Robbo16 profile image
Robbo16 in reply to Katmal-UK

Thank you Kathy. Hope you are keeping well and continue to keep the beastie away x

Wow no hair loss? Am just worried if i will have recurrence, to lose hair second time. Mine haven't started to grow yet 8 weeks after last chemo (((

nope , slight thinning but I used natural hair fibres to make it look better x

wow what is that natural hair fibres? never heard.....

Google natural hair fibres. I discovered them on a trip to the USA. Basically you sprinkle them on your hair and the make yr hair look thick. Sounds odd I know but it works. I cried when someone first showed me how they work. X

Leniko profile image
Leniko in reply to organicinna

Hair loss is tough (lost mine twice), but keep the focus on fighting the cancer!!

organicinna profile image
organicinna in reply to Leniko

oh of course I understand that but am so tired to hide my head )) And very nice quality wigs are so expensive ! I can afford good once / I got NHS one but it does look unnatural. Am thinking go back to work part time and in that wig I don't wont to ))

Leniko profile image
Leniko in reply to organicinna

I had a nice collection of turbans that were much more comfortable than my wig.

organicinna profile image
organicinna in reply to Leniko

hate turbans for me no no no )) wearing sleeve hats but if i go back to work i dont think i be aloud to wear hat ( I work in the supermarket they not allowing that. But may be they give me exception?....

Cher96 profile image
Cher96 in reply to organicinna

Try a baseball cap. That works for me.

organicinna profile image
organicinna in reply to Cher96

Nooo thanx. Its England not America ))) and they still will see that no hair under this cap )))

Jacky5 profile image
Jacky5 in reply to organicinna

Look out for low density wigs....not so thick so look much more natural. And a very light spray with dry shampoo takes off the high shine of a nylon wig x

organicinna profile image
organicinna in reply to Jacky5

OK I will. I v heard about dry shampoo on wigs so yes i try that too. Thank you Jacky ))

Cher96 profile image
Cher96 in reply to organicinna

My hair is looking like duck down after 6 weeks. I feel like tweety bird. This is a second bout with chemo, first was 2019 with breast cancer. My hair grew back differently first time. Not sure where this is going now. Very fuzzy!

organicinna profile image
organicinna in reply to Cher96

How fast is yr hair grow first time and this time please? Mine is 8 weeks after first line chemo finished and still nothing. Am splashing g Keratin oil on my head because its suppose to help with hair growth, but nothing yet ((( )))

Cher96 profile image
Cher96 in reply to organicinna

My fuzz is after 6 weeks. It’s taking a long time. First time took less and it wasn’t fuzzy just came in. Btw they make caps with hair that I was thinking of getting but went with a wig instead, which I never wore. Just wasn’t me. Waste of money 🤷‍♀️

Hello, sorry to hear your levels are climbing. Mine did the same after about 2.5 years. Something was seen on the scan but after that everything went quiet for another 2 years! Then I did have a recurrence. Just to let you know that the trajectory may change even now. I asked for a second opinion when things started to kick off… just to give me some options… might be an idea? xx

Thank you Lindy x

My mom had her 1st recurrence after 3 years. She's doing well so far. Just stay calm and positive and also ask for other opinions as well. On first recurrence, docs were giving my mom only chemo. But my sister insisted on getting HIPEC surgery and we got it done. Never hesitate to ask questions.

Jacky5 profile image
Jacky5 in reply to HealthyBeing

Glad to hear your mom is doing well. Is she in the UK and if so where did she go for the HIPEC treatment?Did she need a second opinion or did her original consultant organise it...and was it difficult to get the treatment approved?

Thanks x

HealthyBeing profile image
HealthyBeing in reply to Jacky5

I'm from India and she's gotten her treatment from AIIMS Delhi

Robbo16 profile image
Robbo16 in reply to HealthyBeing

Thank you and really glad to hear mum is doing well x.What is HIPEC surgery?

HealthyBeing profile image
HealthyBeing in reply to Robbo16

Its chemotherapy given during debunlking surgery on target area. Rest you can consult with your doctors. :)

Hi Robbo16 Yes you are more or less mirroring me , back in April scan showed NED and my CA-125 was 7 , I have been on Avastin every 3 weeks for maintenance and my CA-125 slowest rose it is now 36 , however I had a scan back in September as I said I kept coming over nauseous and had the odd diarrhoea and odd pains in stomach , on this scan it showed I now have 4 cancerous lymph nodes going across stomach and am now on a 3 weekly regime of carbo / gemzar

Robbo16 profile image
Robbo16 in reply to Tj511

Thank you Tj511. I really hope your new regime works out for you. Linda x

So had my 1st one around April but had a tumour as means of indicating that the cancer was back, CA125 is unreliable for me even as a first time indication it was to low, I had an operation in May of this year and now on chemo chances are you may be on carbo and caelyx, have posted some of the issues I have been having, I have two more rounds to go but taking a break due to the side effects that I had recently, would just as what options are available to you ...best of luck.

Robbo16 profile image
Robbo16 in reply to MarleyZ

Thank you MarleyZ. Even though we know CA125 is unreliable I think we all can't help but worry about every movement.

Wishing you all the best.

Linda x

MarleyZ profile image
MarleyZ in reply to Robbo16

CA125 turned out to be unreliable in my case, I admit didn't follow that initially at diagnosis in Nov 2019 but having had my 2nd surgery in May 2021 they traced the ca125 markers and they were incredibly low at initial stage and at the re occurrence stage, pretty sure markers work for some accurately and for others not, wish you well.

I'm on carbo and caelyx for first recurrence. Only had 1 session but the large metastatic lump in my chest muscle has almost completely gone 😁, so it's doing something good. No side effects apart from thinking hair.

Robbo16 profile image
Robbo16 in reply to Saffery1

Many thanks - wishing you all the very best x

My heart sank when I was Re diagnosed 6 years after my initial occurence. It took me a few days to accept/believe it was back. You must persevere, just take it one day at a time. I had carbo/doxorubicin (Doxil) for second round chemo. I’ve been on maintenance Avastin infusion every 4 weeks, which keeps my CA 125 low. Wishing you a good outcome! ❤️🙏

Robbo16 profile image
Robbo16 in reply to Leniko

Thank you Leniko. Glad to hear you are doing well and long may it continue x

Leniko profile image
Leniko in reply to Robbo16

❤️

i had a first recurrence in june this year after having big op and chemo last year (from july). had another op to take it out (at belly button) then radiotherapy for a week. since then i've been doing lots of alternative stuff because my hospital's not very proactive and even when i thought there was something wrong, they wouldn't see me. hope that your team's plan works for you. good luck.

my feeling is that they should move ahead with the PET scan now as that will be a better indicator rather than waiting 6 weeks and having another CT. cag x

Thank you and all the best with your treatment x

I had csrbo gemsar gemsar very hard on bloods

Robbo16 profile image
Robbo16 in reply to Ruebacelle

Thank you x

I did CT scan after ca rising but showed no different than 6 months prior. HOWEVER I still felt something going on and Dr said we would do PET after I finished my Avastin infusions in May. I was a bit miffed but figured she's the Doc....... CA went to 60 three points higher than when I was first diagnosed. Pet scan showed (of course) it was back in my lower lymph nodes. Nothing on organs so that was good. Started Doxil/carbo two weeks later with a biopsy of lymph to see if cancer had mutated. It didn't but after only one chem it was knocked down to 27.......I still have one more to go but scan shows NED after 3 months and CA is currently at 8. Will be starting lymparza after for maintenance hopefully more time! CA is very good indicator for me not always for all women. I was STAGE 3c with 7cmm by 5cm tumor when ca was 57. This is first reoccurrence after chemo April 2020 and debunking Dec 2019

Debbie

Robbo16 profile image
Robbo16 in reply to Summergold2

So glad to hear the carbo/doxil is working for you. Long may it continue x

Hi I had carbo caelyx (doxil) for first recurrence. I found it easier than carbo taxol and I liked the four week cycles. It did harshly affect my platelets but they bounced back. I wish you luck and hope you don’t need chemo right away!

Robbo16 profile image
Robbo16 in reply to delia2

Many thanks Delia - all the best x

I had a reoccurrence less than a year from being done with chemo, Don’t let this fear define you , I understand the notion of is this going to be my life. I am a God centered woman and most of my friends are too. Command his truth to keep you hopeful and centered. You can come out on this free. And I think that is all we want to be free of fear of dying. When I let go and realize that my life was never something I owned I started living again , it takes a daily reminder but I choose to be a survivor. And when the good Lord decides my work is through here I will let go. Be blessed my sister.

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