I am on Zejula. Negative CT but the CA 125 keeps rising. Does it always mean s reoccurrence? .
I am on zejula CA125 riding. Does it ... - SHARE Ovarian Can...
I am on zejula CA125 riding. Does it always mean PARP not working and reoccurrence is happening?
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Rosemarymemo
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27 Replies
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Hello Rosemarrymemo
I am also on Zejula. My ca125 keeps going up also. There is something in my abdomen but not showing cancer. My Dr said that it could be caused by inflammation also. Still checking to see what it is. You do not necessarily need surgery. Make sure you do your research and ask lots of questions. Hope you do well. I will be praying you do.
BL21
Rosemarymemo• in reply to
Thank you.
jools53• in reply to
I’m the same ! Scan shows little surface area on liver but not concerned! 🙄
Rosemarymemo• in reply to
My ascitis came up on an an ultrasound. Ct negative it he is sure there is small cell cancer. I’m going back on carbo, taxol and Avastin. Starting at square one. So devastated
Not always. My CA125 is not a marker number we can go by anymore. My numbers were good and low but my CT showed new cells and Ascites. So don’t focus on the number. Focus on how you feel Stay positive always and keep on keeping on
Thank you.
Hi rosemary, I’m the same negative 10 days in reducing to 200 for now, but ca was 105 now 150 🙄 but was told this happens first then it will drop . Hope so, how you coping on it! 2015 111c 😘😘
I am doing well on the parp. I don’t like the numbers game with CA 125. I need to be positive and deal with the anxiety. No side effects from the Zejula. Hope it is working.thank you for the support.
Feel better on 200. Going to up it back 300 over weekend to see if body copes better now xx
jools53 I didn't cope well at 300mg (dog sick) and going down to 200mg didn't help matters. I now alternate my dose based on input I got on this site. I take 100mg 1 day and 200mg next and alternate. I now have no side-effects and my CA125 is staying very low. So if don't cope at 300mg you may want to talk to your doc about alternating 200/300 every other day or 100/200 - whatever works.
I have no side effects on 200mg a day. CT is normal as of yesterday even though the numbers are up. Doctor says the CT and ultrasounds are better for me. He still does the CA 125. I hate it. All is good so far until I hear outerwise. Thank you for your post. You are in my prayers.
😘😘
CA125 is a ping pong game. It's an inflammation marker so doesn't necessarily mean that you are having a recurrence. I agree with your other replies not to focus on that so much. Other factors than just the cancer can make it rise.
I had an appointment with my oncologist today. CT is negative but CA 125 has risen. He doesn’t seem to be very concerned. He did infer that once a reoccurrence had happened like mine last year that I probably will have another at some time. I am not so hopeful today waiting for the other shoe to drop. He is very blunt and honest. He did say he had a list of alternatives if it comes back. Unfortunately the hard questions I asked he had no answers for as there is no research done yet. It is hard to be positive. Fear has taken over today. Besides my appointment I had to rush my mom to the hospital as she could not breath. I am overwhelmed and got slammed twice today. Foes anyone know where the most current research is being done? I know this disease is chronic. Hard to be hopeful. Thanks for listening.
Hi I was on Zejula and my numbers kept going up . My ct scan showed a little something but my Doctor told me it was nothing to worry about and told me to keep taking it. Well as some more weeks went by I started having pains in my abdomen. Went for another ct scan and this time it showed I had tumors every were . They can’t take them out they said so I got started on chemo again. This time I couldn’t finish my chemo because my blood count was low and wouldn’t go up . Mean while I’m having more pain and waiting to see my doctor for another ct scan .I hope you have better luck keep on top of it if you start having pain.
I hope all will be well. I will keep you in my prayers.
I was onZejulia for 25 year s reacuurance this month but it ts small in the begin ng it would rise and fall due to UTIS but after that would go down it was 100 then 3 then 40 then back to three so don't panic I ll keep you in my prayers
Tesla_7US• in reply to
On Zejula for 25 years?
Rosemarymemo• in reply to
Thank you.
I just inscribe made a mistake with computer I don't need this delete account
My dr. says pet scans are more accurate.
Diagnosis: Stage IIIC High Grade Serous Ovarian Cancer, Stage I endometrial and breast cancer in July 2015
First Line: Intraperitoneal (IP)/IV Cisplatin & Abraxane (protein bound form of Paclitaxel)
Genetically negative for BRCA 1/2
I was optimally debulked and started on my first line of chemo in September 2015. Finished 6 cycles with CA 125 falling to 19 and CT showing no measurable disease. CA 125 started to rise within 2 months. Sent tumor samples for analysis and although I am genetically negative for BRCA1/2, my tumor samples tested positive for BRCA1 (known as a somatic mutation, i.e., not an inherited mutation but one that is acquired).
Started Lynparza in April 2016. CA 125 retreated and stayed below 25 for almost 10 months. Started to rise in February 2017. CT Scans in March and April showed no disease. CT scan in June lit up like a Christmas tree.
My CA 125 is very closely tied to my disease progression, but every woman is different.
I am now on my 8th line of treatment. My CA 125 has been a much better barometer of disease progression than my CT scans, consistently rising anywhere 2 months before any progression is shown on imaging.
My suggestion is to look at clinical trials. Read the literature associated with the trials. I am now in my 3rd clinical trial and am somewhat hopeful even though I wished that the dosing schedule of the investigational drug was different. When evaluating trials, look at both the upsides and the downsides. The later phases have data that show potential side effects, some of which can be quite nasty. Unfortunately,the later phases are also usually randomized, which means you may or may not get the investigational drug.
Also evaluate whether being in one clinical trial EXCLUDES you from being in other trials. For example, I am staying away from trials of most of the checkpoint inhibitors because if you have taken a checkpoint inhibitor in the past, most of those trials will exclude you from participation. I'm saving checkpoint inhibitor use as a fallback position.
My current trial is the investigational agent RRX-001 combined with carboplatin. There have been/are 11 trials. Almost no side effects (one of the trials is in Phase 3) so that's a relief after my 2 previous clinical trials. It is an interesting drug that may reverse platinum resistance. I am considered platinum refractory and have had 3 previous lines of platinum containing combinatorial therapy. After my first cycle, my CA 125 went from 5190 to 2900. I am in cycle 2 and will get my next post cycle CA 125 later this month. CT scans show stable disease.
This is a hard disease. It's smart and mutates quickly. Stay on TOP of your treatments. My docs are good, some of them outstanding, but they are not as invested in my treatment as I am...lol. There is a lot of literature out there but it can be overwhelming, especially if you don't have a background in health care. Read what you can and question your docs. You have to be your own advocate.
Good luck!
