CA125 fluctuations on avastin : Hi all, i hope... - My Ovacome

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CA125 fluctuations on avastin

Dollie22
Dollie22

Hi all,

i hope everyone is keeping well during this difficult time. i was just wondering what kind of fluctuations in CA125 did people with high grave serous ovarian cancer( stage 3) experience while on avastin as maintenance- without it signalling a recurrence. My CA125 has been 3 for about a year and is now 4 .. i’m worried that this might be the start of an upward trend again . I recurred previously with a CA125 of 18.

Best wishes ,

D

31 Replies
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Hi Dollie22

I do remember it going up and down again... I have RA as well as cancer, so mine is always subject to inflammation. Don’t forget that what they look for is an upward trend over time, not blips. The Avastin made my nose very sore and that in itself can affect the bloods. Try not to worry xx

Dollie22
Dollie22
in reply to Lyndy

Hi Lyndy,,

i hope you’re doing ok now ? Did you get a long remission on avastin? i hope you did .

Stay well , D

Lyndy
Lyndy
in reply to Dollie22

I had nearly 5 years after a stage 4 diagnosis... not sure it was Avastin that enabled this although it must have played a part.... best of luck with it xx

Dollie22
Dollie22
in reply to Lyndy

Hi lyndy ,

That was a long remission . i hope you are doing well now. Best wishes, D

Hi Dollie, when I was diagnosed Jan last year my ca125 was well over 2000 & as far as I am aware hasn't got any lower than 80 . I have been told they will probably never get it any lower than that so your ca125 been 3 & 4 sounds great to me. I am still on avastin every 3 weeks & recently it was fluctuating up & down & I like you , felt anxious but my oncologist told me that he would only be worried if it kept going up. If it puts your mind at ease I had a CT scan last week & it was clear so it really reassures me that all is well , so try not to worry even though I know it's harder during these strange times as you have more time to think . I am sure they will keep a good eye on you & I hope all will be ok. If your feeling anxious talk to the nurses. I will be thinking of you & please let me know how your doing 🌸

Dollie22
Dollie22
in reply to Tulips66

Thanks so much for your detailed response. I’m delighted to hear that your scan is clear . stay well and i hope everything stays well for you , D

Meridian14
Meridian14
in reply to Tulips66

Hi Tulips,

Hope its okay to jump in on this chat... I've had to push back #13 Avastin infusion. Over the past couple of months my hands have been seizing up very badly... it seems to be getting slowly worse. So i asked my Oncologist if I cold postpone the treatment I was due last week.

I've also been having terrible shoulder pain for months, stiff painful, clunky.. and now the hands.

I had a telephone consultation with Rheumatoid and Lupus and I have been prescribed Etoricoxib. I have been taking it for 3 weeks but it doesn't seem to be working. I was taking Naproxen before, that didn't work either and gave me terrible tummy trouble.

I was wondering if you had/are having any of these symptoms on Avastin. Also, can i ask how long you have been on Avastin for? how many infusions you have had an how many more to go?

Great to read that Avastin is working for you. My Ca125 has been fairly stable at 6-7 all along, so far, since chemo finished and avastin continued. I have 6 more Avastin to go... after which I have no idea what will happen. I'm worried about my hands and my shoulders, worried that if i continue with the Avastin will my hands continue to get worse. My Oncologist is unable to say either way, but she thinks it's all caused by a mix of chemo, avastin and menopause.

Any advice would be very much appreciated.

thank you

Lisa

Tulips66
Tulips66
in reply to Meridian14

Hi Lisa, sorry to hear you are having such a hard time on Avastin. I will be having my 18th infusion tomorrow & my oncologist told me last week that I will be on it for as long as I can tolerate it. I don't suffer with the pains you are having, but I do find that after Iying or sitting down for awhile, that when I get up I have to steady myself as my bones in my feet are sore. After moving around for a few minutes I am fine. Maybe you should ask your oncologist if there is a different drug you can try because it sounds like Avastin is making you miserable & after having Ovarian cancer you have been through enough. I hope your team will listen to you & make you more comfortable. I also read your profile & see like myself you have a stoma & I am just wondering how you are getting on with it & does Avastin have any effect on it? Take care & let me know how you get on Xx Mag

Hi. A small fluctuation like this is nothing to worry about. Although I have now recurred, I was NED for several years and my CA125 often varied up or down a few points. It's not just cancer that accounts for the reading.

Jenny

Dollie22
Dollie22
in reply to 27-359

Thanks Jenny,

Are you doing ok now? i’m sorry to hear that you recurred . stay safe , d

Mine fluctuated between 3 and 6. It still does that. I’m on Olaparib now.

Dollie22
Dollie22
in reply to WoolyHat

Thanks for you reply . i hope you’re doing well now and continue to do so, D

WoolyHat
WoolyHat
in reply to Dollie22

Doing okay at the moment, 🤞🤞🤞🤞 It’s always hard to have confidence in it once you’ve had a recurrence. Thank you for asking.

Dollie22
Dollie22
in reply to WoolyHat

i think if you have the brca gene your prognosis seems better , and parp inhibitors appear to be showing great results. i don’t have the Brca gene so i’m more limited re treatment options i think , D

Hi.

I have had 13 infusions of Avastin and my CA125 has bounced around between 15 and 19. Again, as stated by others, the staff just watches until there is a steady rise. But it does mess with your head when it goes up. Stay the course and good luck to you.

Thanks for taking the time to reply . i hope you’re doing well. kind regards D

Hi there, my lowest Ca125 has only ever been as low as 18 (With NED) and has gone up and down since I had Covid symptoms. Currently back down to 30. My Consultant says this is in the normal range and that everyone has different levels they sit at. He is always very honest and says they look at trends but the levels can vary for each person. Wishing you all the best and hope it all settles for you. I always worry too though!

Denise xxx

Thanks Denise, hopefully it’s normal variation . wishing you all the best, hope you’re doing well? D

Hi Dollie, much better now thanks. Covid symptoms almost gone, just feel nauseous again going back on Olaparib after a two week break. I originally felt like this when I started on it and it did get a lot better over time. I guess I have to be patient again. The main thing is my CA125 started going down again; phew!

I really think 4 is fantastically low though, so really don’t worry at all!

Xxxxx

Glad to hear you have recovered from covid and that your CA 125 is going down , D

What you watch for is a spike a jump for instance from 5 to 10

Thanks Ruebacelle , hope you’re doing well .

A friend who is a haematologist told me a variation of 1 or 2 can be in the testing while on avastin mine went down to 9 but for six months was between 13 and 15. Then it started climbing 2 every 3 weeks now I have had 18 avastins it climbs 3 every two weeks and is up to 43 and constant wants scan in 4 weeks worried now.

Thanks for your post. I hope your scan is clear . are you feeling well ? D

Hi Dollie,

I've only had 5 treatments of Avastin for 1st Line and will be on Maintenance unless something goes wrong for next 12 treatments. Sorry for delay in getting back came home from 2 week stay in Hospital with Pluerisy today. All the best, Sue xxx

hi Sue,

sorry to hear you were in hospital . hope you’re feeling better again . Best of luck with your treatment and hope the avastin works for you. D

As others advised watch for jumps of 5. Thank you I don't feel any worse since my ca125 doubled still same fatigue and pain level. Good luck keeping your really low score.

Thanks so much. I hope your upcoming scan is clear. Best wishes , D

Thank you I hope Avastin helps you too. It's a good drug.x

Hi Dollie,

I was diagnosed in May 2019: OC 3c high grade.

Had debulking,

6 x taxol & Carbo.

Started Avastin during 2nd chemo infusion

Have just postponed #13 of Avastin as my hands are seizing up very badly.

still have 6 infusions of avastin to go, due to finish end September 2020.

My CA125 has stayed pretty stable all along, so far; 6 -7. Oncologist said it is usual for it to fluctuate 6,7,8,9, up and down. Although mine has stayed on 6 -7. She said only when it hits double figures and continues to rise in double figures will they start to get concerned.

all the best.

Lisa x

Dollie22
Dollie22
in reply to Meridian14

Thanks lisa,

Its good to know that it can fluctuate.. i hope your hands get better. it must be really annoying. I used to suffer from muscle stiffness but it has eased greatly . i exercise daily so i’m not sure if that has helped. stay well and i hope you stay in remission for ever now.

D

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