Down the slippery slope...: I’m wondering if... - My Ovacome

My Ovacome

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Down the slippery slope...

Alifit profile image
46 Replies

I’m wondering if anyone else has had a reduction of their CA125 after chemo has finished. I had my last Carbo/Caelyx at the end of November with a partial response on imaging and CA125 at 184. I saw my consultant yesterday - my CA125 is now 130! I’m hoping it will go down more, but know that’s clutching at straws a bit!

I have permission to travel now - my title refers to my skiing holiday which I thought may be in jeapordy if things were going wrong. I don’t have to have a check up until I get back!

I do hope everyone is as well as they can be - we have so many folk on here going through really bad times - my thoughts are with you all.

With love, Ali x

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Alifit profile image
Alifit
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46 Replies
Caroles1 profile image
Caroles1

That’s wonderful Ali,

Go away and enjoy yourself, just be careful!😬xx

Alifit profile image
Alifit in reply toCaroles1

Me? I’m always careful!! ⛷🏇🥃! 😏 xx

ShropshireJo profile image
ShropshireJo

Good to hear from you. I was thinking about you the other day and wondering how you were getting on. Have a fantastic holiday. It will do you the world of good to get out of the OC world for a break. Love Jo xxx

Alifit profile image
Alifit in reply toShropshireJo

Thank you Jo, I feel great so as you say, will be capitalising on that for as long as I can.

How are you doing? I hope all is well and that we can catch up soon, love Ali x

ShropshireJo profile image
ShropshireJo in reply toAlifit

I’m doing ok thanks Ali. Getting my head round no more Niraparib and looking forward to a drug free period. I’m planning a new kitchen and trying not to get too carried away! Hope to see you again soon. Love Jo xx

Alifit profile image
Alifit in reply toShropshireJo

My new kitchen was chosen and installed while I was on first line chemo - most decisions weren’t mine, I wish I’d been more compos mentis - I went to plug in my blender about a month later and realised that the plug socket that had been there was gone! No one had noticed! (I felt I had an excuse). It couldn’t be rectified due to the beautiful glass panels we had installed instead of tiles! I just buy soup now!! X

ShropshireJo profile image
ShropshireJo in reply toAlifit

Not sure how I’d feel about that! Delighted to have a new kitchen but a little frustrated that I’d not been able to arrange it how I want, I guess. As I’ve been divorced for donkeys years, I’m used to having to make all the decisions 🙁. My sister is helping me which makes it fun. How are you getting on with the glass panels? I’m trying to decide between them and new tiling.

Alifit profile image
Alifit in reply toShropshireJo

I’m really pleased with the glass. I absolutely hate grout, so glass was the obvious choice for me. I’ve taken a picture of my kitchen which I was going to put in this post - then remembered it’s not possible in a reply! So I’ll pm it to you xx

Alifit profile image
Alifit in reply toAlifit

I’ve sent the picture and info about the glass company to your email address. Xx

antifer1234 profile image
antifer1234 in reply toShropshireJo

Hi Jo how are you?

Just read you have had to give up niraparib too. My ca125 started to rise and scan showed the beast was on the move in my abdomen!

Back on chemo, 1st last Wednesday taxol/gem a bit tired today but coping. 6xlots every 3 weeks with gem in between if bloods ok.

What have they got planned for you next?

Love to meet for a chat how about half way between Kidderminster and bridgenorth if that's good for you?

Sorry to but into your conversation with Alifit!

Alifit profile image
Alifit in reply toantifer1234

Hi Anthea, I’m determined that we’ll all get together again this year - I hope you are well, see you soon xx

ShropshireJo profile image
ShropshireJo in reply toantifer1234

Hi Anthea, it would be good to meet. I’m sure there are plenty of decent pubs between Bridgnorth and Kidderminster then when Ali is back from skiing, we could have a bigger get together. Sorry to hear you’re back on chemo. Hope you find it manageable. I’m just on watch and wait. Niraparib was stopped because of the adverse effect on my bone marrow but as far as I know, my CA125 is ok but plan to contact my lovely CNS Trudy tomorrow to find out. Didn’t really get a good run at Niraparib (barely four weeks) so just have everything crossed that the beast stays away as long as possible. I think my next course is likely to be cisplatin and gem. Taxol will be out as I wouldn’t want the neuropathy in my feet to get any worse. In the meantime, I plan to try to improve my mental and physical fitness so that I can cope better with the next onslaught. Love Jo

Lind58 profile image
Lind58

Enjoy this trip! Hopefully you ca125 will continue to fall. Until you get back do not even think about it - live in the moment

Alifit profile image
Alifit in reply toLind58

Hi Linda, let’s hope that it’s only my CA125 that has a fall! Xx

JulieP1986 profile image
JulieP1986

Hi

I was surprised and happy when mine continued to go down for a couple of appointments after end of treatment. 63 end of treatment, then 1st check up 46, now stabilised at 41.

Alifit profile image
Alifit in reply toJulieP1986

Thanks Julie - that’s positive, I hope I have the same news in March x

Lindaura profile image
Lindaura

Dear Ali,

Perhaps your diet and tough attitude are having good effects on your CA-125. I have heard this can happen if you keep active, which skiing is amazing for, eat loads of green leafy veggies, tomatoes and tofu and cut out dairy, meat and sweets.

Now, personally I am having a problem cutting out sugar, but I am cutting down.

I was very disappointed when I had a recurrence, after becoming a vegan after finishing first line, but I am not giving up and will try to make my diet even better.

Meanwhile, I am at the end of my 4th infusion of carbo/Caelyx and I have been totally exhausted for a full three weeks.

During the past 3 infusions, I snapped back after 7 or 8 days, so wonderingly if this happened to you?

I will have a blood test on Monday, but so far my blood levels have been adequate.

Hope you continue to recover,

Hugs,

Laura

Alifit profile image
Alifit in reply toLindaura

Hi Laura, I became progressively tired towards the end of the Carbo/Caelyx regime - my bloods were low so my last dose was reduced by about 30%. I certainly noticed the difference and it didn’t take me long to feel relatively normal again.

I have a very sweet tooth - particularly during chemo - fondant fancies were consumed in vast quantities! I think a healthy diet is very important, but I haven’t eaten meat since 1986 and it didn’t stop me getting cancer.

Good luck with your bloods, stick with it - my feeling is that it worked better for me than the carbo/Taxol regime.

Lots of love Ali xx

Lindaura profile image
Lindaura in reply toAlifit

Yes, I was bitter about having Ben a Vegetarian for 40 years, while my meat eating mother remains cancer free, but she doesn’t have the BRCA mutation.

I only quit dairy at the end of first line, but I am trying to curtail my sugar.

So, we shall see.

Thanks for the input about Caelyx.

Hugs,

Laura

Grace-53 profile image
Grace-53 in reply toLindaura

Hi Linda, what have you replaced dairy with? I find it so difficult to not have cheese or butter on my bread. And I am not really into hummus and tofu.....

Lindaura profile image
Lindaura in reply toGrace-53

A company called Vita-life makes excellent tasting cheeses, but most Vegan cheeses have no protein in them, so I have developed a taste for organic Waitrose Hummus.

I also buy Pure margerine or olive oil margarine, which tastes great on toast.

There is a terrific vegan mayo called Veganaise, too.

I use soya milk mostly, but my family loves Oatly Barrista, which is thick and creamy, not like the usual oat drinks.

Personally, I am happy with Tofu, but I do eat lots if vegan fake meat products like Tofurky Italian sausages and Quorn Spicy burgers!

Good luck on your explorations.

Best,

Laura

Grace-53 profile image
Grace-53 in reply toLindaura

Thank you Linda.

Grace

delia2 profile image
delia2

Enjoy your skiing trip! You deserve it. xo

Alifit profile image
Alifit in reply todelia2

I just can’t wait to be in the mountains - even if I couldn’t ski, just being in that environment make sure me happy! x

marylondon profile image
marylondon

Glad to hear from you & even glader to hear about your reducing Ca125 & ski-ing holiday.

Being in the snowy mountains with those brilliant blue skies is one of the best therapies ever .

Have a wonderful time .

Love , Mary x

Alifit profile image
Alifit in reply tomarylondon

Thank you Mary,

Lovely to hear from you - I hope all is well with.

With love, Ali x

marylondon profile image
marylondon in reply toAlifit

Thanks Ali . Am continuing with Niraparib & am generally ok .

I presume you decided against the Parps for now ?

X

Alifit profile image
Alifit in reply tomarylondon

I did, yes. My consultant said yesterday that she was pleased I made the decision to not have the Rucaparib. I do feel that my consultants ‘get’ me and understand what I want from this life - I’m not the sharpest decision maker though, hence seeking the opinion of others!

I hope you continue to be ok, much love, Ali x

marylondon profile image
marylondon in reply toAlifit

Your Consultant sounds perfect in her rapport & understanding of you . That’s so important.

Shame I broke my hip on the ice in the Peak District last year ; otherwise I d be up on those ski lifts !

X

Lily-Anne profile image
Lily-Anne

I finished chemo October 2017

CA125 levels have been up and down but last summer randomly fell it had peeped over the 400’s the highest I’ve had. Fell to 225 went up and now below 200. Disease is stable so as no tumour growth no antigens

Enjoy skiing. I love Austria. No fit to fly for me unless I win lottery and get private nurse.

Hope to see snowy pics

LA xx

Alifit profile image
Alifit in reply toLily-Anne

Hi Lily-Anne, the highest my CA125 has been was 722, when I was halfway through my second line chemo - it was over 200 when I was told I had IBS a year before diagnosis. I’ve often wondered if it can be naturally high, but I suspect that is at best wishful thinking and at worst, nonsense!!

Stay well and comfortable, with love, Ali x

KimLJ profile image
KimLJ

After surgery and chemo mine is 28 woo hoo. Was over 12000 at the beginning xx

Alifit profile image
Alifit in reply toKimLJ

Great news, that’s a massive drop! The highest mine has ever been was during second line chemo when it went up to 722 - a bit alarming at the time, but it has continued to drop since then.

Best wishes to you, Ali x

yudalef profile image
yudalef

Hi Alifit,

The best things you can do for your body and soul health as I

know , are those things that can cause you good feelings, lough

and joy. entertaining yourself is one of most improving health strategy.

So, going to skiing holiday is wonderful idea, inspite of fears.

Good luck and happy safe skiing holiday.

Alifit profile image
Alifit in reply toyudalef

Hi Yudalef,

This will be my third skiing holiday since diagnosis - I didn’t expect to be able to go on the first one, so this feels like a bonus to me! Hopefully I’ll manage many more!

I hope your wife is doing well, best wishes Ali x

yudalef profile image
yudalef in reply toAlifit

You will manage many more, I'm sure about!

I wish you all the best with real joy and faith .

Neona profile image
Neona

Have a great holiday.

Alifit profile image
Alifit in reply toNeona

Thank you x

Wanthealth profile image
Wanthealth

Congratulations! So glad you’re feeling well enough to go on a ski holiday, amazing 🤗. My highest Ca125 was 28 after incidental finding in Fallopian tube during routine hysterectomy... after 6 rounds carbo/tax finished September 4/18 it was done to 3 and at 3 month check scan clear and still down to 3 .. then had a prolapse repair and bladder lift 1/18/19 and found less than 1cm tissue that was positive 😟. Soooo will start on Wednesday 2/13/19 with carbo/gem. Then 1 week later just Gemzar. Then week off than both drugs together X 6 cycles. Ca125 now 5.69. He than said maintenance after with a parib ( but don’t know which ... does one seem to have less side effects?). Trying to be positive , and just keep active and eat healthy ... enough bout me go have fun on the mountain 🏔. HUGs 🤗

Sue

Alifit profile image
Alifit in reply toWanthealth

Hi Sue - I hope the chemo goes well this time and that side effects are kept to a minimum. Thank you for your good wishes, Ali x

Wanthealth profile image
Wanthealth in reply toAlifit

Thx 🙏🏻

SCWI profile image
SCWI

Lovely news about your CA125 Ali. Have a fantastic skiing holiday. Xx

January-2016-UK profile image
January-2016-UK

Have a great time, I remember your skiing pic from last year.

Melody6 profile image
Melody6

Hi Ali, my ca125 pre-surgery was 55, pre-chemo 11, post-chemo 8. Have a great holiday 😀 ⛷ 🎿. Best wishes, Mel xx.

kit5 profile image
kit5

how was the carbo? i just had my first round 2 weeks ago and am still feeling tired, achy and nauseous.... does it get progressively worse...maybe i need a dose reduction...i am also doing immunotherapy...

Alifit profile image
Alifit in reply tokit5

Are you just having Carbo or have they added anything else to your cocktail? My first treatment was Carboplatin with Taxol - I had very achey legs, felt dizzy and lost my hair. Then I had Avastin which made my blood pressure a bit high and made my nose dry and bloody . My most recent chemo was Carboplatin and Caelyx - I was very tired and dizzy, but the main reason for the dose reduction was low platelets and neutrophils. Talk to your team - they should be able to tweak your medications to help. Ali x

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