Biochemical Relapse & CA 125 Levels Explained

Strongwoman

Hey Gals,
  I am doing some research on the above.  Has anyone heard of it or dealt with this within their own treatment at some point in time. OR Had a discussion with your team regarding this? 
 For those who don't know.  I will copy and paste from an article I found and an excerpt from it to help explain.
"Recurrent disease detection The CA 125 test is most reliable and useful for the detection of recurrent disease in women previously diagnosed with and treated for ovarian cancer. Also, CA 125 levels can be elevated even when an exam and scan (CT or PET) do not show any cancer. This is called “biochemical recurrence.” The role of the CA 125 test results and when to start treatment for recurrent disease should be discussed with your gynecologic oncologist."  FWC-CA-125-Levels-Your-Guide.pdf (foundationforwomenscancer.org)

CA-125–indicated asymptomatic relapse confers survival benefit to ovarian cancer patients who underwent secondary cytoreduction surgery - PMC (nih.gov)

These articles are very informative about CA 125 levels and know there have been quite a few questions regarding this both past and present.  I hope this will find some answers to those that were looking for them.  

If anyone has any other references to Biochemical Relapse that I have not indicated here, kindly let me know where to find more info to research more.

Thank you!

Fearless_Moderator

This is good information.  Strongwoman is right in saying there continue to be questions about reliability of the CA125 so these articles provide an interesting perspective.  That said, as Moderator I'd be remiss in not reminding you the sources of these articles  have not been vetted by the OCC medical team.  But they do include information that you may want to vet with your own oncology team.  

Strongwoman

Good Morning Ladies!
  I hope everyone is safe and keeping away (the best you can) from the wildfires and air pollution or smoke plumes (depending on area) of the wildfires.  My heart goes out to anyone who has had to flee from their homes.  I have had to do it and it is scary and affects one greatly.
  I am updating regarding my latest post in case any others go through the same thing.
I saw my Oncologist yesterday and we discussed the discrepancies in my CT scan (possibility of voice recognition picking up pulmonary nodules instead of peritoneal), reporting I have stable bilateral (both sides) hydroureternephrosis (last CT scan indicated mild to moderate on the left and severe on the right), no inidication as to what the tumours along my descending colon are doing,  Then the question is/was "am I having a biochemical reaction?".  The answer was "we don't know yet".  We are waiting to see what the latest blood work and CA 125 level is indicating.  If it has made another significant jump (for myself and my case) then "yes we are more than likely looking at that and that it indicates disease progression". Combined with my symptoms is what they are going on.  
The feeling of being able to feel peristalsis (movement that makes thing move in the intestines), the acute nature of it, cramping feeling and feels like it is "raw" inside is concerning.  They are prescribing Buscopan which is to help when I have these episodes and will reduce the need (hopefully) for upping my pain meds which as everyone knows can cause constipation.  
  I did ask (as it has been a year since we last revisited it) about timelines I may be looking at. Although a guess it was indicated even with treatment 3-6 months.  That does not mean that I can't or won't have an acute bleed (from the tumours) which could shorten that even less.  My hope is that it is wrong and I will have many more months but a good tool for me to get my butt in gear to finish off my Legacy work and to see/do the things I want to do.  I don't want to miss out on any experiences or the chances of making great memories that will last in their minds forever.  
  There it is in a nutshell and I meet next with my Oncolgist on the 19th via a video chat.
Take care all and I hope to be on today's chat. Hoping my drooling will have stopped as I am seeing the dentist at 11:30am to have 2 silver fillings replaced. One has caused my tooth to crack in half (not seen on X-ray) and caught early enough that there is no decay. Yay!! Who knew that this was a thing that the old silver fillings did and was told it was caused by the constant contrasts of heat and cold in the mouth.

Petra

Thank you for sharing the details of your experience, @Strongwoman.
I'm blown away by the equanimity and courage you are showing in the face of the reality that you are dealing with.
This is such a brutal disease. 

Strongwoman

Hello!
  Here is my latest update after speaking with the Oncologist yesterday.  It does seem like the Radiologist made an error in dictation and wrote an addendum to the report which indicated peritoneal and omental NOT pulmonary.  I am relieved at that!  My Oncologist spoke directly to the Radiologist and it seems that despite my symptoms, that any changes were minimal at the time of the scan and thusly noted that they were either stable or minimal at that time.  That does not preclude my latest CA 125 level which elevated another 23 points.  This tells us that combined with my symptoms that the disease is progressing. We still have no idea if the Letrozole is working or not and I am to remain on it as symptoms continue to be present.  My creatinine level is at 72 and all my other bloodwork is normal.  Loss of weight of 3 lbs since a month ago.
I continue to experience fatigue, nausea, swelling/edema, skin itchiness, pain in abdominal area and a bit more frequency of urination.  I am to watch for discoloured urine, rapid weight loss, increased nausea or vomiting, bowel changes, increased weakness or fatigue, trouble breathing to name a few. We will currently monitor with bloodwork monthly and CT scan every 3 months.  I do believe she is sticking still with a timeline of 3-6 months. I hope she is wrong!
I have been speaking with my neighbour who was in the medical field and have a bit of research to do today.  We are thinking of testing my own urine at home weekly to monitor for any changes which would indicate kidney involvement so we head that off quickly as I am functioning on the one kidney pretty much solely (right may help slightly).  So, I am going to see what I can find available to me to be able to do that and hope it works.
In the meantime, my family knows and understands that things are not stable but progressing and I didn't give them a timeline as I don't want to and I don't think it is accurate (or don't want to believe it myself) at this point in time.  I am finding purpose in my daily routines as I move along in completing some of my Legacy work.  I am getting there. I have painted 2 more pieces of pottery, have another one almost done and have to work on a project I am excited about for my parents and hubby.  Lots of writing, wrapping to do but I will get it done!  If nothing else, it has lit a firecracker under my A** to get going. Enjoy life to its fullest before I can't or am unable to get away from the house.  
So, to anyone else with LGSC this may be helpful and for others it may not.
I also believe that between the CBD (helps immensely with the nausea) and low level of THC (helps with some pain and reduces taking the oral narcotic drugs that can constipate), that my bowel movements are good and has helped with my ability to eat as well.  All positive things.
God willing, I would like to be here until the end of the year and secretly wish we are well past any holiday time before I should pass away so it is not associated with holidays for the family.  But...we don't control that do we or Do we? HMM food for thought.