Freaking out and need some hope. CA125 jumped from 27 to 800 just 4 months after frontline.

[kat98116]

Hi Ladies,

I've been avoiding this board and trying to enjoy what now looks like will be a short "remission". After 10 months on carbo/taxol and 4 months "remission" my CA is up to over 800. I had a CT scan today and will meet with my onc on Friday. I'm so scared. When I first was diagnosed I was so sick I could "envision" dying, but now I don't want to! I love my grandchildren too much. I'm Stage IV (but only because of pleural effusion) originating in the tubes. I just need some ideas, options, hope. So scared. Thanks in advance. Kathy in Seattle USA

UPDATE THURSDAY 6/28: MY ONC CALLED LAST NIGHT WITH THE SCAN RESULTS. YES, IT'S BACK IN THE PERITONEUM, BUT NOT IN THE LIVER OR OTHER ORGANS. HE SAID THE CA125 OF 870 WAS ALARMING BUT HE EXPECTED THE CT SCAN TO BE MUCH WORSE THAN IT ACTUALLY WAS. I WILL SEE HIM TOMORROW. HE'S ALREADY CALLING AROUND RE CLINICAL TRIALS AND I WILL BE GETTING SECOND OPINIONS. SINCE I HAD SO MUCH CARBO/TAXOL I WILL DEFINITELY BE ON A NEW REGIMEN. THANK YOU ALL FOR YOUR SUPPORT AND VALUABLE SUGGESTIONS. SO HELPFUL! I

[Angie-69]

Oh bless ya heart! Made me so sad reading this and hearing your fear. I feel your pain have recently had similar ....1 day remission for me....bastard disease wish it would give some restbite here n there!!! Mines up in the 3000s and they're hoping to help me for a while yet so don't be too hard on yaself hunny...i personally think the wait between scan and appt is the toughest treatment we receive. Once you get past that you have an idea what you are facing and how ya gonna fight it.....you came this far you can deffo do it....keep going look forward not back and tell yaself...screw u I'm not giving up xx best of luck Friday I wish u a good result and ammo in ya arsenal!!!! X

[kat98116 in reply to Angie-69]

Oh Angie, thanks for your response especially considering what you are going through right now (I read your posts). My grandchildren (twins) are 4 and I am determined to see them grow up! Whatever it takes.....Much love and support. Kathy

[gmc920]

Hi Kathy, I’m still in the process of frontline, so don’t have much experience yet, but I know that many of the ladies on the forum have had longer remissions after second or third line treatments (or beyond) than they had after frontline. Everyone is different, so there’s every reason to believe that the next treatment can and will give you good results! Just wanted to wish you all the best.

xx Gina

[kat98116 in reply to gmc920]

Thanks Gina. I was just mentioning that fact to my daughter because I do recall reading that here. Maybe it just needs an extra dose of "healthy juice" (that's what my best friend calls chemo) to knock it out once and for all. The "one-two" punch. Best of luck with your treatment.

[lorraine71-Australia]

Hi Kathy, I would like to give you some encouragement When I was diagnosed was told I would not see the year out that was 4 years ago, I only had 5 month remission I'm now on my 6th treatment my history is as soon as I go of chemo my 123 goes up, at one time went 1300 but my congestion got it down 49,

We are all so different in how we react to chemo in the last couple of years new treatment and trial are improving our out comes we need more research.

I hope the scan give you a better outlook and you will feel better as soon as your team has a plain..Take care Lorraine xx

[kat98116 in reply to lorraine71-Australia]

Thanks Lorraine. That is so comforting.

[Lily-Anne]

It is scary knowing nothing has changed. They only consider you to be in remission if you have been NED for over six months and some use one year as a marker

I had chemo 06/17 to 10/17 but despite a clear scan my tumour had continued to grow like a film along the pelvis with two tumours, one into the bladder the other into the cervical area. This they believe was because of the carboplatin rather than in spite of it. My CA levels were stable. My tumours were only visible on U/S

In May 2017 I was told I’d be lucky to see Christmas. In January 2018 I was told April was a maybe and June out of the question.

In reality our bodies fight on to save themselves and we help that process with positivity and self belief. Don’t give in to the bad news push on past it and think well. There’s a fighting vibe to your post that will help you. Good luck on Friday

LA xx

[Maxjor]

Kat98116--I relapsed after 7 months from finishing Frontline and was scared stiff! How could this happen? Why me? What now? The good news is your onc knows what's next or will have suggestions for you to consider based on what they see in the scan. There are ladies who have a longer remission the 2nd time around. I agree with Angie--once you know what you are dealing with (once you get past the horrible waiting period between scan and results), its easier to feel in control of what will happen next and that you have a treatment plan you are confident with. Try to focus on your grandkids and family and friends while you wait--don't waste that wonderful time. Please keep us posted. oxoxo

[kat98116 in reply to Maxjor]

Thanks Maxjor. I have posted an update in my original post and knowing my symptoms are real (and not my monkey-mind going crazy) was a help in itself. My onc seems really on top of it. Luckily I'm in Seattle with so many cancer centers that they seem to compete. I hope you are well.

[Neona]

Hi Kathy, I, too, was extremely sick when diagnosed but my op was successful. I recurred during frontline treatment however and was offered caelyx. I decided to get a second opinion and paid for a consultation in London and am now on a phase one clinical trial which has kept me stable for the last 6 months. There are a lot of treatments out there and you are not necessarily told about them so you need to do your own research, see an oncologist from a top cancer centre and be prepared to travel if needed. Wishing you good luck and please let us know how you are getting on.

[klclarkson in reply to Neona]

Which would you say in your experience is the top cancer centre. I am prepared to travel and would welcome a second opinion as I don’t feel I am getting the most up to date advice. My appointments are usually me asking questions after researching different treatments and being told there’s no need/proof. I want to meet a dynamic and forward thinking oncologist!

[Neona in reply to klclarkson]

As you are in USA I can't answer but I know you have some excellent cancer centres- can anyone answer this please. Have you been on the Share site and Inspire which are more USA based? Otherwise you could ask Overcome help. Here in UK the Christie and Royal Marsden seem to be the leaders- my trial is at the UCLH Research facility but is under the Royal Marsden.

[BeeWild]

Hi Kat I was exactly the same timeframe as you really poorly pre and post surgery and 4 months after frontline and Ca 125 started to go up sharply so I’m back on treatment since May. I’m having weekly taxol and a trial drug has just been added. After 3 doses of taxol my Ca125 dropped 82%!

My prof believes he will get me a much longer remission this time and I’m now taking the cediranib so fingers crossed it blasts the beast into oblivion for a long time x

I was told to view this as a long term condition and along the road there will be bumps that mean treatment but doesn’t mean the road isn’t long and there’ll be some fun and happy times along the way x

Good luck and keep us posted xx

Bev

[kat98116 in reply to BeeWild]

Thanks Bev. Yes, very similar. I'm glad you are doing so well now. I just hope my body can take whatever's coming next. I struggled through frontline, but I made it! And I will again.

[ssjmichael]

Hi Kat, I'm sorry to hear that, but hopefully it's just some crazy mistake or something, and the scan itself is clear. My mom was also originally diagnosed as stage 4 purely because of a pleural effussion. I have a feeling even a little bit of fluid could increase the numbers a lot. When my mom had a recurrence, her CA-125 went to over 6,000, and they pretty much only found some fluid by her pelvis which they suspected was ascites.

One thing I'm wondering though is, you said you had 10 months of carbo/taxol? That seems like a long regimen. Was that continuous, or did you have a big break in between? I think usually chemo is done over the course of about 4 months, usually 6 cycles, one every 3 weeks, or 18-weekly cycles.

I pray everything will go fine, but even if somehow there's still a little remaining, you can see from others that it can certainly be treated again with great success.

-Michael

[kat98116 in reply to ssjmichael]

Thanks Michael. Yes, the 10 months of carbo/taxol was continuous (taxol weekly with carbo added in every third week) because after my surgery there was still a lot of residual "spots". My gyn-onc (my surgeon) and my medical oncologist decided to lengthen my treatment based on some studies. Towards the end the doses were lowered significantly because declining blood issues.

[Coutance]

This is my first post and I just want to say thank you to Kathy and everyone who has left comments to her post. I am in an absolutely identical situation and have probably sunk as low as it is possible to sink today - I had a scan on Tuesday and have been waiting for the phone to ring with the results. I have gained a huge amount of strength from the replies to Kathy and they have helped my to realise that, whatever the outcome of the scan, there will be a treatment plan for me. The strength, positivity and encouragement from everyone has really sustained my today and I just feel so much better to face whatever news might come my way tomorrow. Thank you everyone! Kathy, looking forward to hearing about your progress

[kat98116 in reply to Coutance]

Thanks for that Coutance. Sometimes I hesitate to post, but reading your reply and others reminds me of how we are all connected. If there's a blessing in cancer (and I've come to believe there are many) this support and knowing we're not alone is certainly one of them. Keep us posted on YOUR progress.

[lorraine71-Australia]

Hi Kat, I read your up date and yes 870 is high but as I said I've been 1300 while on treatment and we got it down other ladies have been in the same position,some good news it has not spread to other organs.

Now I hope you are on a treatment with good results..Take care keep in touch Lorraine xx

[Euphori]

Stay positive Happy Easter 😀