6 month check-up: feeling great, but whoops! - My Ovacome

My Ovacome

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6 month check-up: feeling great, but whoops!

Lindaura
Lindaura

So, I have been wanting to post about my recovery after first line treatment for high grade serous Ovarian Cancer, but I thought I would wait for my sixth month check up.

They only run a CA-125 blood test and talk to us, and only require a CT scan if your CA-125 climbs.

I have been feeling better and better every day. My Chemo side effects have all but faded away and having been tested and found to be positive for BRCA 1, I was feeling like statistics were on my side.

Yes, I am prone to reproductive and breast cancer, but my body responds well to treatment- and there is a lower recurrence rate.

I decided to be healthy for a year and then opt for a double mastectomy to cut my risk of breast cancer.

And, I feel so damn healthy, I dressed up and walked into the doctor’s office feeling elegant with my new curly blonde hair and felt as if I radiated good health.

To my dismay, my CA-125, which is a good marker for me, had climbed from 11 to 69.

Now I am worried. I don’t go back for 6 weeks, and will have a CT scan somewhere in there and another blood test before my appointment, but I am disappointed and surprised and hate to have to wait and see.

Sadly, I feel too healthy to think it might be raised because of some other kind of internal infection .

So here I am. Having to wait and worry about any niggling tickle in my belly.

Yikes!

Laura

38 Replies

Lindaura, sorry to hear about the increase in your CA125. You won't know what is happening till you get your scan results. But besides all that you look great! I love the polkadot earrings matching your outfit. Hair looks lovely too.

Lindaura
Lindaura in reply to RonLitBer

Thanks so much for noticing.

I do really feel well and empowered by my strange new head of curly hair!

Aw lovely I’m so sorry and totally understand your disappointment and dismay!! 6 weeks seems along time to have you anxious waiting for a CT scan! Is there no way to bring it forward? When this happened to me I too was shocked as felt great albeit mine was only 4 months from frontline. I had my scan the next week and within 4 weeks I was diagnosed with a recurrence and on a trial!

I’d try and get your scan earlier if you can for your own peace of mind x

You look absolutely fab by the way! Stunning x

Hugs

Bev x

Lindaura
Lindaura in reply to BeeWild

Thanks for that.

What was your CA-125?

69 isn’t all that high, just shockingly high, when I expected it to be 9.

I hate to have to step back on the rollercoaster again

I did call the CNS nurse, who is terrific.

She says she will try to urgent it up and I am willing to go in st the spur of the moment if there is a cancellation. I only live 10 minuets away from the hospital.

I will get my GP to test my CA-125

In 2 weeks, in case this is a glitch...

Best wishes,

Laura

BeeWild
BeeWild in reply to Lindaura

It had gone from 18 at the end of first line chemo in January and at the end of April it was 95 so had a scan within a week and started on the CEBOC trial in May by the time I started the trial after about 4 weeks my Ca125 had risen rapidly to 1993!! So think you having a repeat test is a good idea xx

I’ve used the cold cap through this weekly taxol and have kept my hair that had regrow and it has grown whilst on the chemo too! I’ve now got very curly hair!!

Got everything crossed this is a glitch for you but there are lots of options if it’s the bloody beast that’s stirring!

Hugs

Bev

Lindaura
Lindaura in reply to BeeWild

Thanks, Bev,

I was thinking about the cold cap, but I hate thinking about all this happening again.

Hope whatever your treatment is does the job now!

Fingers crossed,

Laura

The results can fluctuate though. They (experts) say that if it doubles twice then scan time. If it goes up and down disease is stable. Don’t forget stable disease can be one rogue cell so don’t stress our bodies fight back all the time. Mine looks pretty ropey right now but I’m super impressed by its power to protect me and fight back.

Fingers crossed it goes down again

LA xx

Lindaura
Lindaura in reply to Lily-Anne

Thanks, Lily-Anne,

I am hoping this is a glitch and already am planning to have it tested in two weeks and I am putting a rush on the scan!

Hope your body keeps on fighting, too.

Fondly,

Laura

Fantastic photo and I have to say I hope I look that good at yr age ( gosh I hope that doesnt sound rude lol) . I'm gonna be honest and say i'm surprised you have a six week wait. My CA125 went to 65 and i started chemo within a week. Is it yr idea to wait 6 weeks? xx

Lindaura
Lindaura in reply to Katmal-UK

Absolutely not my idea to wait!

Am worried as hell and waiting is not going to be easy, but I am pressuring for an earlier scan and getting my own CA-125 test done next week.

Gee, did you have a scan before starting back on Chemo?

More worried!

Thanks for the compliment, but I can’t believe my age either!

Kind regards,

Laura

Katmal-UK
Katmal-UK in reply to Lindaura

Hi Laura, sorry it wasnt my intention to worry you any more than you already are but I have had 2 recurrences and both times my CA125 had risen not significantly, in fact its stayed below 100 but is a good indicator for me. Both times I started chemo within a week and yes I had a CT scan before starting chemo. Might be worth asking for second opinion xx I wish you well xx Kathy xx

You are looking good, kid. Were you curly before chemo (assuming you lost your hair)? I'm loving my curls now and dread having to lose them again. My oncologist told me that my CA125 is not a good indication for me and that only a scan determines the state of play. Mind you, I wouldn't mind a CA of 69. Never been that low yet. I agree that you are having to wait a while for your scan. Time to make some noise maybe? All the best. Kryssy xxxx

Lindaura
Lindaura in reply to Kryssy

Thanks Kryssy,

I am still not used to the curls and dread having to start over again as it took 6 months for this to grow in!

I worry about you and hope you are managing okay.

I am trying not to worry and hoping this is some kind of glitch.

It was just so unexpected!

Kind regards,

Laura

Mine went up to 65 from 17 and was told they’d retest after 6 weeks then reassess - I was so worried I asked for early scan and my reg persuaded onc to agree - otherwise I’d have had to wait at least 6 weeks - while you clearly want to know what is going on , scanning too soon might show nothing even if something is happening and often starting treatment is delayed until you as symptomatic anyway - hoping it’s a blip - you look great x

Yes I'd push for repeat bloods and earlier CT scan. The waiting is agony and I'm sure in your shoes the medics would feel the same. Be proactive, sometimes I've been very passive and then have wanted to kick myself! You look great and yes it could be inflammation which has caused a rise so fingers crossed your ca125 will be heading down when rechecked. If not there'll be plenty of other options open to you. Good luck, you look amazing. x

Lindaura
Lindaura in reply to sticky3006

Hey, thanks for all the compliments. That’s the main problem! I was just beginning to lead a normal life again and felt good about myself, even with the new head of hair!

Kind regards,

Laura

Your hair looks fantastic and I love those earrings.

I'm sorry your CA-125 has risen although not by much. It may be that you might be better waiting for the six weeks before having a scan, just in case there's nothing has yet to be seen on a scan. Then you'd have to wait another eight weeks or so before having another scan if the CA-125 continues to rise. However, waiting is so very hard to do. I know when I came off the Javelin 200 trial, my CA-125 rose very slowly for six months before treatment was restarted. And although my mind knew something was there, as far as I was concerned I was fit and healthy and did enjoy that time being treatment free.

Are you able to ask your Onc's PA or CNS why six weeks was suggested?

All the best. Your hair grows much faster than mine!

But this is six months! Hair, I mean.

My CNS has been very helpful and understanding. She is trying to rush the scan, but our Radiology Department is having a refit, so we can only try.

And yes , they kind of want to wait to see if something shows up in the scans, but I cannot wait and will get another blood test next week!

Kind regards,

Laura

I know! I finished my weekly Taxol in March and my hair is nowhere near as long as yours. Same thing happened to me after first line, took ages to regrow. I had naturally curly hair before diagnosis, so maybe that's why, who knows. I know I'm envious though!

Good luck!

Hey can I just say something. Don’t worry about your CA125 test mine was also elivated . First time 104 and then it dropped to 62. I have an endtrioma cyst on my ovary nothing bad going on. Try not worry .easier said than done I know . I’m just getting over a breast cancer scare.u look amazing love your hair .,💜

Hi lindaura, you do look lovely in your photo ,i hope all goes well with your blood test take care you are doing well Lorraine xx

Thank you, Lorraine,

Hope you are doing well, too.

Kind regards,

Laura

Hi just had to say how great you look 😊 hope they can arrange a scan ASAP, we all know how hard the waiting for tests is.

All the best Maggie

Lindaura
Lindaura in reply to Mjb49

I hope so, too. I am working on it.

Thanks for the compliments!

Best wishes,

Laura

That you feel and look so fabulous is a positive - long may it continue.

I have six weekly blood tests which always includes CA125, it has remained low since finishing Chemo in April.

I hope you can get n early scan and the outcome is not what your tickling tummy worries about. Let us know and stay smiling. So lovely to hear that you feel amazing, 🤞🏻🤞🏻🤞🏻🤞🏻

Joy xx

Lindaura
Lindaura in reply to JayGeeCee

Our tests are every 3 months, but I could have requested more, as my GP let’s me order blood tests at will. I keep a check on my Magnesium levels, but my bloods have been good and I guess I became over-confident that I would be one of the lucky ones and escape a recurrence.

But, this could just be a glitch...

I need to know though as I am on pins and needles right now.

Still feel fine, though!

Kind regards,

Laura

Hello, have to agree with everyone you look really good. I’m particularly impressed with the earings.

I used to be a meek and mild person always doing what I was told. Thanks to this site I now question everything and push for everything to be speedy. I think my oncologist goes along with my wishes just to get rid of me. Keep on pestering.

Kathy

Fortunately, when it comes to healthcare, I am not meek and mild, although it is a lot easier to advocate for someone else, then to plead my own case.

However, I am ready to act now.

Thanks for the compliments and the support,

Kind regards,

Laura

Hi Lindaura. Fabulous photo of you. Glowing. Yes it's a big shock I know and if you can get an earlier scan as some have suggested and it's a good idea. I find the waiting really difficult even though part of me doesn't want to know the result! Just wanted to say, that on my 1st recurrence, I was told by my surgeon and oncologist that they don't treat a number. they treat symptoms and the scan results. I 'watched and waited' for 6 months when my CA125 started climbing and went from 16 to 1100! I knew at 850, I would start chemo soon but we still managed to slip away to Singapore for a week before starting!

We are all different though and sometimes don't have a choice. But if scan isn't showing much and you don't have strong symptoms, see what your oncologist say's. Sometimes we have to jump onto chemo or trials quickly and sometimes not.

Rabbitgal (who used to write Friday's Corner) and I found inspirational always said; "We are eating uncertainty for breakfast, lunch and dinner and having nerves of steel." I'm still working on that bit! Let us know how you go. Hugs from Oz.

Lindaura
Lindaura in reply to tara108

I can’t believe you waited so long for treatment for your first recurrence!

I definitely can’t do that. My daughter would whip me into shape!

So, I shall carry on and hope this is a glib, but if not, I am prepared to fight on.

Thank you for your sweet compliments and support,

Laura

tara108
tara108 in reply to Lindaura

Hi again. It felt right for me and worked out well as I went into remission after 5 chemo's on a lower dose of Carbo/Taxol that I pushed for, so I could have quality of life as well as quantity. It was good decision cos my bloods collapsed after 2 chemo's, unlike frontline treatment. So its been start and stop which has been frustrating but also feeling so much better than my 1st year from hell. I think we are all learning and making different choices as we r all different. Hope your scan is clear and its just a hiccup!

You look so beautiful and that smile! (And of course, the matching polka dot earrings). I do not know if I could wait with your ca125. You either should put your mind at rest or you should know its more than nothing to plan what you want to do next. Any way to push for a re-test sooner letting them know the wait is unhealthy by itself? Mine also jumped from a 15 to a 73 but (in the US) they took action right away to see if it was a glitch or recurrence. Wishing you luck and a way not to wait 6 weeks! oxox

Lindaura
Lindaura in reply to Maxjor

Thanks Max!

Waiting is not good for any of us.

My sister lives in LA and is treated by UCLA, but just finished her treatment for second recurrence if Breast Cancer, but she had to wait 6 weeks for her various scans and biopsies and it was murder for all of us.

Happily, as she is also BRCA1 positive, her treatment was successful and she opted for a double mastectomy and will have a BSO, to rule out Ovarian Cancer.

Still, they are good here in the UK and all this risk reduction surgery is available for myself and my daughter, which is amazing .

I don’t know why they think I should wait 6 weeks for a retest, but I simply can’t.

So, fingers crossed I get that scan soon and fingers crossed this is just a glitch.

Kind regards,

Laura

Hi Linda. What a fab look.. I am envious :).

But... I agree with Tara. Yes it's a worry seeing the dreaded tumour marker climb again. However, I understand from speaking with my onc that our overall survival time is hardly affected either way, whether treatment starts quickly or whether you watch and wait for a while, as long as you have no symptoms or visible/bothersome disease.

My ca125 - after first line treatment - dropped only as far as 79, and then very slowly rose to about 115 over the following 2 years. Yet we did nothing except for regular tumour marker checks and (by and large clear) scans.

Recurrence treatment didn't commence until the marker rose sharply over the course of a few weeks, and the scan showed recurrence in lymph nodes. I'm no worse off for having enjoyed more than two years of treatment free time... even with a tumour marker in the three digits.

Hope yours will balance out or stabilize as well, and you will enjoy a long remission. But if it's not to be, we're here. Hugs. Maus

Lindaura
Lindaura in reply to Maus123

Thanks, Maus,

That’s really helpful,

I think I am just panicking ,

Because I have heard what you are saying before and did not really believe it.

I would really love to have a few treatmentless years.

How are you doing now?

Kind regards,

Laura

Maus123
Maus123 in reply to Lindaura

Cheers Linda, here's to treatment free years. 🍹

I'm a tad fitter than I was three weeks ago, thanks to rehab clinic, and with a ca125 of 86 quite chuffed actually... plus I'm ready to go back to work next week.

The good mood will last at least until my next check up / scan in October, at which point mindless panic will set in... I feel like a little hypocrite at times, advising others not to worry.. but there you go ;). xx. Maus

Hi Linda,

Wow. You look fabulous! Love love love the hair!!!!

We'll all have our collective body parts crossed for you, fingers, toes, bra straps, whatever can be crossed.

You have some good suggestions here so I won't repeat any, but I will tell you that my sister had breast cancer 12 years ago and opted for the double mastectomy. Just a few weeks ago she had a hysterectomy which eased my worries considerably. She leads a healthy and productive life :)

Best wishes,

XXOO

It's all about the hair! Mine is just about that long for the second time. I was devastated the second time I lost mine. But I have to put a lot of product in mine and roll it on a curling brush to get that look. So I say, get everything set in place as best you can, then concentrate on the hair. Let's celebrate the wonderful thing, and not let the maybe destroy our happiness. Looking good makes us feel better. A compliment when you go out is a gift. Get out there and collect all the gifts. You deserve it. Many blessings, Eileen

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