My wife's latest test results plus I wanted to just say hello again.

bigjohnaz
bigjohnaz Member Posts: 9
in Ovarian Cancer #1

Michele was diagnosed with stage 3C or 4 on March 31st. She's now had a full round of 3 chemo treatments plus the first treatment on her 2nd round, so 4 total. Her appetite hasn't changed a bit and she doesn't have any change in the taste in her mouth. She finally started losing her hair this past week, so I got the honor of shaving her head. Luckily she bought a fabulous looking wig a few weeks ago, in anticipation of today. She dealt with it today like the champ she is. When she was diagnosed her CA125 was over 2,000, and after the debulking surgery around the 4th of Aril, that number came down to 424. She just got it tested last Tuesday and her new CA125 is 179. I know you are not all doctors, but in many ways you are as experienced with seeing these numbers, so I just wanted your opinions on how you feel her results are. In my opinion she seems to be on course for an average person in the same situation. We are thrilled that she isn't having side effects from chemo and that she is seeing results in a positive direction. I'd just like to hear of others in their numbers and how it compares to Michele's during the time of all your treatments in the past. Also, I wonder how soon, if all goes well, that would could possibly see her numbers fall to the magic number of 35 or less. Also if she attains that number during her 18 weeks of chemo, do they still continue with the chemo even though her CA125 could have reached 35 or less. We never asked, so I don't know if they complete the full 18 weeks, and if she doesn't get to that magic number during those 18 weeks, do they try a different cocktail of chemo or continue the same as she's been getting, or do they just stop administering the chemo???? I hear it's cancer survivors day, and I only wish the best for all of you ladies. I'm a supportive husband and am the curious one in the relationship and I appreciate you all allowing me to learn from you........thanks......big john

Comments

  • scatsm
    scatsm Member Posts: 296 Member
    edited June 2016 #2
    Hi Big John

    It sounds like it's all going in the right direcction!

    I started at 2200 and went down eventually to 4 where I stayed for almost 2 years. Hate to say it but there really aren't "magic" numbers. You want to see a downward trend and then, once you get to remission, you want to see it holding somewhat steady. It's the upward trend that can be worrisome.

    IMHO most docs want to do the full cycle of chemo. I was down to single digits with 3 more to go but was told that microscopic cells could still be there so I finished as planned. So glad to hear she is doing well. Some people tolerate chemo well...not me though!

    Usually if someone doesn't get to remission, some other plan is put into place. It's all about the CT scan and that doesn't happen til first round is done. Docs don't treat based just on the ca125...it's so unpredictable, but they do treat based on CT scans so that's the important test.

    Good luck to you and your wife and let us know how things go for you!

    Best,

    Susan

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    edited June 2016 #3
    Big John - It's a great report

    Hade other comments, but presently, as usual, my companion SECURITY ERROR is coming up this morning.  Seems as the techs can't seem to get this glitch fixed!

    Loretta

    Will send it when I can. Private msg won't work either, so if this get's through, know that you will be hearing from me "sooner or later". 

    Loretta

    Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #4
    Good morning again John - Can't post my entire msg!

    Hey John - I sent another message to "Security".  Still can't post a letter.  Sorry.  I sent them a copy and said, "Please post this for me."  Now I don't expect them to do it, but they want us to send them a copy of what we were trying to post and was unable to "submit" it.

    Loretta

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #5
    "BigJohn"-PART 1 OF 2 -Will try 2 send my ltr in 2 parts-

    Well good morning “BigJohn”

    Your name reminds me of the song, “Big Bad John”.    Now I think the ladies will have to be a bit older to remember that old coal miner song by Jimmy Dean.   It was popular in the 60’s.  He saved a whole crew of coal miners by holding up some collapsed timbers while all the others escaped to safety.  Now I don’t expect you to be “left at the bottom” of the mine.  I expect you to be “holding up” Michele, and both of you get out alive.

    As far as your update on your wife, you should both be smiling and happy.  You ask for a comparison from some of those who also have Ovarian Cancer.  We always hope that our “first” series of chemo treatments will show positive results.  But just in case they did not, the oncologist might consider changing the chemo combo.

    As to the CA-125 numbers, that’s a great reduction.  However, unless your wife is considered “cured”, and she isn’t, her levels will vary from time to time.  I have a CA-125 check once a month.  And yes, it can fall below the normal range of 35, but that doesn’t necessarily mean that “all is well.”  For instance, I am Stage IV, and my CA-125 dropped to a low of “8” in December of 2015.  I had completed my second series of 6 treatments of Carboplatin and Taxol in September of 2015.  So the number can still drop even after the series has been completed.  So Michele’s number will probably drop some more.  And in one sense that is good, but it doesn’t mean that there are no signs of cancer left in her body.  However, a drop, or a steady number is better than rapid elevation.  As time goes by, based on my understanding of my own cancer, I expect my CA-125 tumor marker # to rise.

    Expectations for me as a Stage IV Ovarian cancer patient is a “slow elevation” relative to my tumor marker level with no outward obvious symptoms of progression.  My hope is that there will be long periods of quality of life before some new metastasis (spread) arises within my body.  Unless something “crops up” all of a sudden, I will have periodic CT scans, and possibly even a PET/Ct scan if considered necessary.  A PET scan will show “live” cancer activity in the body. 

    So none of us can judge what one person will necessarily experience solely by their “numbers”.  For instance my numbers were never anywhere near Michele’s and yet I was found to be Stage IV from my very first CT scan! 

    So as of June 2, 2016, my numbers have risen from a low of “8” in December to now a high of 252.  My number one month ago was 202.  It’s been rising by “leaps and bounds”.  And yet I have just read my latest CT scan report dated June 3, 2016.  It shows some small increase in the size of some of my tumors, and some slight Pleural effusion, but no new metastasis.  Since I know that it would love to attack my lungs and/or liver, and it hasn’t invaded them yet, I’m happy.  That’s enough for me to say, “Thank You Lord!”  I am not at all surprised with these results.  I fully expected that they could have been even worse. 

    Loretta

    Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

     

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #6
    "BigJohn" - Part 2 of 2 - of my ltr 2 you

     PART 2 OF 2 PARTS TO MY LETTER - Guess this falls under the category of "there's more than one way to skin a cat."  We Southerners are familiar with that phrase, although I've never known anyone that "skinned a cat"!

    (Part 2)

    Actually, the CT scan findings were sent to me via e-mail because I have created a personal medical chart and my doctor can release all kinds of test results, lab results, etc. to this chart, so that I have a “running record” of my progress or lack thereof.  Most hospitals and doctors’ practices these days have electronic messaging available.  If you haven’t availed yourself of this helpful electronic medical record option, and if one is available where Michele is being treated, you might want to set one up.  Then you can keep a check on all her lab reports, and her CA-125 levels from the beginning of her treatment to date.  You can even send the doctor questions, and set up appointments, etc.  Now that is unless it is an “emergency situation”, in that case an e-mail would not be fast enough.  You would either call him or 911!

     As for how much chemo relative to the “magic number” of 35-- my oncologist isn’t trying to retain that level as his only gauge of success.  For instance, we’ve been “watching” my number rise from “8” in December to 252 as of last week, and yet I don’t expect him to recommend any new series of treatments if my interpretation of these CT findings are correct.  He wants me to go as long as I can between any kind of treatments.  And until and unless I begin to have some symptoms indicative of “progression”, I will remain on a “watch” list.  The longer I can go between treatments of any kind, the better.  Chemo isn’t a magic bullet, and with successive treatments, the body is weakened with a Stage IV diagnosis.  A Stage IV diagnosis isn’t going to be cured by Cytoreductive Surgery, but it can and usually does afford the patients a longer life expectancy.  Clinical trials bear that out.  My prayer is that I will have long periods of “progression free survival” (PFS).  And given that my case is terminal at some point, I’m happy to be experiencing a good quality of life presently.

     And although I was aware of Cancer Survivor’s Day, my husband and I celebrate my cancer survival EVERY DAY!    And I’m sure you two do as well. 

     And like I always like to say, one of my favorite Psalms is Psalm 139.  I’m not gonna’ depart this life one day sooner than my “allotted” numbers of days on this Planet.  It’s just that I don’t see a “date on my calendar” that tells me, “This is your day Loretta.”  And so I am happy to wake up one more day with the sun rising, moderate warmth and humidity, no mosquitoes to speak of yet, and birds are chirping, humming birds are humming, and I am saying Thank You Lord for another good day. 

     So perhaps I have answered some of your questions.

     Hoping for many good “progression free survival” days for you and Michele, I am,

     Loretta

     Peritoneal Carcinomatosis/Ovarian Cancer Stage IV diagnosed 11-2012

     https://www.youtube.com/watch?v=KnnHprUGKF0

     “Big John” sung by Jimmy Dean

      

  • bigjohnaz
    bigjohnaz Member Posts: 9
    #7
    I don't have an account yet, but this is Michele commenting

    Susan - Thank you for your words of encouragement. I appreciate it and I'm sure that Big John will continue to post updates on this site for you to follow. :-)

    Loretta - I loved your coal miner analysis and the song "Big John" by Jimmy Dean! I truly appreciate you sharing your journey with us in an effort to help us understand what to possibly expect. I can feel your strength and courage throughout your emails and it is inspiring. THANK YOU!!! :-)

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