2nd line started with CA rising like crazy! Need some hand holding.....

[kat98116]

I may kick myself for writing this post because I feel like a big baby! Last Friday I started my Doxil/Avastin regimen for my first recurrence just 4 months after finishing frontline. My CA125 had risen to 870 on June 25; on the day of chemo, just 3 weeks later July 13, it was around 1642. What???? I'm freaked out by the rise and....However, I will note that I was around 5000 at diagnosis with a high of 7000, so my numbers do run high. I was down to 27 after completing frontline. Can someone give me some comfort....I feel so scared and powerless right now. I was considered for a clinical trial but my insurance would not let me switch networks to get it. On Oct. 1, I'll have more options when I'm on Medicare here in the US.

[Lily-Anne]

What has your oncologist said? When I was on chemo last year my figures went up and then down then stabilised. I have low numbers but it is still reflective of current disease. It went to 96 then into the 100’s I suggested it wasn’t working but they insisted it was and the scan came back fine. After the last dose it was in 200’s. An u/s found two new tumours but no change in the others

I refused more chemo and at first it went up eventually to 488. Then it fell a couple of times last reading down to 327 and tumour sites unchanged in size.

So from that experience I would ask for a scan if it rises again

LA xx

[coksd in reply to Lily-Anne]

Hi Lily-Anne are you on avastin now is your CA 125s reducing now, Hope you are feeling well, Clare xx

[Lily-Anne in reply to coksd]

I’m on it of sorts. Had 2 doses one of which was delayed then dose 3 is apparently next week. It was supposed to be on acrobatic appreciation day. The gaps worry me. But nobody else seems as concerned. Dose 4 should be 3 weeks later.

How do you feel today?

Xx

[coksd in reply to Lily-Anne]

I actually feel really well and have loads of energy which is the scary thing as this disease just creeps up, I am a bit bloated and gaining weight but I had lost a stone and a half at diagnosis due to fluid drainage, shock and nausea. I don't know if avastin is working its supposed to be the best treatment but my ca 125s are rising my biggest fear is another plural effusion as draining it was the worst procedure I ever had. do you get your ca 125s checked regularly on it mine are checked every 3 weeks. Take Care Clare xx

[ssjmichael]

My mom's numbers were rising very quickly before she started 2nd line with a high over 5,000, and even rose after the first infusion, which freaked me out, but it eventually started dropping, and it is now down to 19 after her treatment finished.

I believe you may also see a rise initially with Doxil before any numbers start going lower.

It's easier said than done, but try your best not to worry about it. Let the treatment do its thing, and hopefully knock it out for good this time.

-Michael

[kat98116 in reply to ssjmichael]

OMG you have no idea how much you have helped me! I will sleep much easier tonight. I'm a pretty optimistic sort, but that number threw me for a loop! Thank you! I hope your mom is doing well.

[Maus123]

Hi Kat. I would be worried too.. but:

As Michael said, you could wait until after chemo or just some time before checking the tumour marker again, ideally accompanied by a CT scan. Give the treatment a chance to work. LA is right.. check with your oncologist if you should be worried by the latest numbers just yet.

My marker is always high (never dropped below 79 in between treatments, usually hovers around 100 and was 4500+ at diagnosis). While a sharp rise seems to be indicative for some disease activity, my oncology team wouldn't start treatment until/unless recurrence is actually confirmed by a scan and/or symptoms.

So for now, you could just concentrate on managing the chemo, unless/until your consultant advises a new course of action. One thing at a time.

Xx. Maus

[kat98116 in reply to Maus123]

Yep, Maus, well said. One thing at a time. This "chemo brain" can't comprehend much more than that anyway! I realize the futility of trying to figure it all out, but still I persist in doing so! Maybe that's the lesson here....let it go! (I should know that song very well as my granddaughter sings it to Frozen every day!)

[Maus123 in reply to kat98116]

So now I have the song in my head . But as songs go, it's a good one for us, so I don't mind at all. All the best to you, Kat.

[TarbonNZ]

When I was initially diagnosed I was 700 with significant ascites, and admitted to hospital as an acute admission. I went down to 12 by the end of treatment, op etc. I have now gone up in stages over the past 2 months to 57, and the CT scan shows stranding in my upper abdomen, with shadowing where the largest tumor was removed.. I also have ascites again. I start a new chemo round tomorrow. After reading some of the CA numbers on here which were significantly higher than mine, I spoke to my Oncologist. He has told me that some people have really high readings with little to no sign of recurrence of the disease, and others can have much lower readings with real signs of the disease. He said that the CA125 is not a really accurate measure as other things can push it up. They work on the principle that if your CA125 has doubled from your lowest point post treatment, then there looks to be something going on, and then they doublecheck this with a scan. Hope your new treatment round goes well. I understand your feelings re being frightened, as I feel the same, however finding this site and reading the posts has made me realise I am not alone, the lovely people here who are going through the same, and in many cases worse, never fail to offer support and positive thoughts. I live in NZ, and I appear to be the only one from here who has joined up, but the distance from the rest of this group has not made me feel any less supported. Cheers Therese

[kat98116 in reply to TarbonNZ]

Thanks Therese. Your comments are SO helpful. When my CA went from 27 to 850 four months after first line treatment new "activity" was confirmed by the scan. But my onc said the high reading was not truly indicative of the new cancer activity/nodules - he said he would have thought it would be higher. So as you mentioned, the numbers mean different things for each of us. As others have said, I need to "unplug" myself from these numbers and give the doxil (caylex)/Avastin time to do it's job. I think I'm still reeling from the fact that I only got 4 months remission out of frontline. What treatment will you be starting. Keep us posted! And thank you again.

[TarbonNZ]

Hi Kat. I saw my Oncologist today and my CA125 is still 57, however the cancer has been confirmed as now in the peritoneum. He Confirmed that my reading is not indicative of the cancer I have now. It is different for everyone. I could not work out why I had such bad symptoms with a reading which while it is high, in the scale of things is moderately low. I started treatment today Carboplatin/Gemcitabine. Unfortunately Avastin is not funded in NZ and the cost is huge to get it privately. The Oncologist has said I should not worry about it at this stage , so hopefully it is not a biggy. Just started to get some side effects from the chemo, e.g. a lousy headache so early to bed. 😩

I understand how worried you will feel, mine came back within a year, but I always knew this was a high risk of occurring. I was told right at the beginning that there was only a 27% chance of it not coming back in the first year, and the odds were only slightly better the second year. However my gynaecologist had told me his mother had the same cancer as me and was now at 14 years. If you want to know about bad luck, I Only had one ovary, as I had a partial hysterectomy 20 years ago, and they left one ovary to stop me going into menopause, as I was only just 40. Unfortunately I went straight into menopause after the operation, so the other ovary was not working at all, and it has been sitting there dead like a time bomb waiting to go off for 20 years!!

One thing I have taken a lot of hope from this site is that there are people who are on their 5th line treatment, and have kept going for years. It was also interesting to hear the viewpoint that it is a chronic disease. There is no getting around the fact that it is really hard and a knock to the confidence when you get the news, but I went and got the army haircut yesterday (which by the way my Oncologist and the nurses thought looked fantastic and really suited me), and I am ready to go to war.🤬 Take care Kat, and please let me know how you go. Therese💝💝

[kat98116 in reply to TarbonNZ]

Yes, Therese, I love this site too! Bummer about Avastin in NZ...hopefully that will change for you in the future. Let us know how you are doing on the new regimen. I, too, now like my hair shorter, and it is so maintenance free! Take care.

[Maxjor]

Hi Kat---Mine at diagnosis was 2100 and by the time chemo started (I had to start with chemo) it was 3600. In 3 weeks, it was 900, three more weeks it was 55, then went down to 20/15/5 over the course of all 6. You're giving them a swift kick in the butt and they should fall quickly again. It seems to be a good indicator for you and that's helpful to know how things are working. Wishing you good results on your next ca2125 and don't even think the word "baby" or we all will have to be called one!!! oxoxox

[kat98116 in reply to Maxjor]

Ha ha, Judy, I don't know why I put that "baby" phrase in there....We all certainly ARE NOT babies! Yes the CA is a good indicator for me....maybe too good. Yesterday my onc nurse called me to calm my nerves about the hysteria over the high reading. My onc mentioned that there are people loaded with tumors who have normal readings, and people like myself who "run high". True, the cancer is on the march again but not to the extent that the numbers would suggest. (his words) Like you, I responded very quickly to frontline with a rapidly dropping CA. I'm hoping for the same with Doxil/Avastin. If nothing else, this condition certainly teaches us patience!

[coksd]

Hi Kat what does your oncologist think, I started off over 1000 then 425, 385, 220,195,181 then a 2 month break down went up to 220 then one course of avastin 202, mine reduced on chemo but never went to normal levels I am stressed about them I have them checked every 3 weeks I am juicing raw ginger, wheat grass, spinach, kale I switched from dairy to KOKO milk and yogurts trying to stay on as much of the alkaline diet as possible and staying off refined sugars that could be feeding the cancer as my medical team can't shed any light on what works to reduce it. I don't know if any of this works, but for my own peace of mind I have to try something. I actually got my results today so this is after 3rd avastin and very healthy eating and they are gone up again to 249, They still don't seem bothered

[kat98116]

Thanks Clare. Maybe you're a "high reader" like I am. See my reply to Maxjor above. Besides calming my fears, my medical team keeps stressing not to put too much credence in the numbers. Oh, if I could just stop myself from looking up my labs online! I had been under the care of a naturopath here in the states but many of the supplements she gave me upset my stomach. Like you, my medical team hasn't a clue about the relation of cancer to diet and lifestyle....so I think most of us are on our own there. But heck, it can't hurt to try, right? I think it feels better to me to continue to try new things rather than feel totally "powerless" over this disease. Hang in there! Kat

[coksd in reply to kat98116]

Thanks Kat I know its awful when you feel fine and then just get the numbers you were hoping wouldn't be high, I got my results today 249 up from 202 last month this is after probably after having the healthiest month since diagnosis but I am going to keep up the healthy eating and hope it will help. keep me posted how you are going with this treatment I will follow you on here and watch out for updates. take care Clarexx