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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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
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
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
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.
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
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
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.
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.
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.
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.....
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!
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!
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.
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!!
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.
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!
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 🤗
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...
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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