"SandiDogLover"~Welcome~Most ladies Here R DX w/some type of OC~a fewer# have Peritoneal Cancer also

LorettaMarshall
LorettaMarshall Member Posts: 662 Member
in Ovarian Cancer #1

Good morning Sandi ~

You came on late last night, consequently I missed reading your post.  I was watching the World Series baseball game.  But I’m glad I didn’t miss it altogether.  I will say that the forum on which you wrote mainly dealt with Lynparza vs. chemo as written about by “VajraWoman8”.  There were 16 replies mostly addressed to her.  She first posted here in December of 2017, and last wrote here on April 17, 2018.  She was curious about Lynparza.  However, after her doctors prescribed it for her, she was taken off of it 2 months later.  We haven’t heard from her lately.  But if she writes again, I’m sure she will come back to this same topic forum and give us an update.  So presently, we don’t know her latest status.  She did not mention anything about Peritoneal Cancer in all her writings.

I say all that to say this, since you specifically state that you are a Stage IV Ovarian cancer and Peritoneal cancer, this puts you in a different category than most here.  As I continue to read on this forum, it seems that most here do not have Peritoneal involvement.  So that makes you a bit unique in that you are wanting to hear from others who have progressed to this stage I believe.  For that reason, I want to put your request on a “new topic forum”.  If you will return here to the new post, we can better keep up with your own situation.  So please read my reponse to you as you first wrote here: 

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 “https://csn.cancer.org/comment/1643460#comment-1643460

lynparza for last 8 mos, so far so good

 

Oct 23, 2018 - 10:06 pm - sandidoglover

i am not brca positive.  i was stage four ovarian and pertonitel cancer victim.   seeking a friend to share the experience with  sandi”

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So Sandi, it seems that you and I seem to be “in the same boat.”  Without any previous inclination of problems, at age 73, I felt a small nodule below my waist line on the left side.  This led me to believe that I might have a hernia.  So after one weekend with some slight abdominal discomfort and groin pain, I went to the emergency room here in Virginia Beach.  (November of 2012) they asked, “Why are you here?”  I said, “I think I have a hernia.”  (I WISH!)  Two hours later a CT scan revealed Peritoneal Carcinomatosis!  Just 3 weeks later I had a second opinion which included a PET scan and exploratory surgery at the University of Pittsburgh Medical Center (UPMC).  There it was revealed that ovaries were cancerous as well.  So while there are many here with Ovarian cancer, not as many have metastasis to the Peritoneal space as well. 

In December of 2012, UPMC recommended chemotherapy first (Carboplatin & Paclitaxel (Taxol), and then CYTOREDUCTIVE surgery (CRS) which is major surgery.  So I came home and went through my first series of chemotherapy.  It reduced enough of the cancer to qualify me for Cytoreductive Surgery. 

Then on July 1, 2013, surgery took place at UPMC.  After the first few days I questioned my ability to “make it through”.  However, with God’s help, I’m still here today and will soon celebrate 6 years of life after what could have been death early on.  No—it’s not been a piece of cake. With God’s help and total support of family and friends and a wonderful oncologist and supportive staff, so far the “struggle” has been worth it.  BUT I would be remiss if I didn’t say life is filled with “highs and lows”.  I find keeping life in perspective, living and coping with our “rearranged” life, not of our own making, and a strong personal faith in the Lord have sustained me through some dark days. 

Now Sandi, since you did not elaborate on your “about me” page, I don’t know how far along you are at this Stage of  life you are, but with peritoneal issues, this means that the cancer is in more than one place.  I, too, am not BRCA positive, although there were 20 major cancers on my mom’s side of the family that included breast cancer.  My own sister was diagnosed with breast cancer as well as were several of my cousins.  So I’m a bit perplexed as to why my test was negative.  Nevertheless, here we are. 

Presently, I am in my 6th and last series of Carboplatin/Paclitaxel (Taxol) treatments.  The last one before this only afforded me 10 weeks before my CA-125 began to escalate rapidly.  So what my oncologist suggested proved to be true.  (What would he know—ha ha?)  He felt that my body had built up a resistance to this combination and that I should switch to another drug.  He suggested DOXIL and I said “NO”.  So now completion of this present treatment is intended to try to reduce the tumor marker level down one more time and then be switched to an oral drug “OLAPARIB”.  Now I know that my body cannot sustain a constant chemo level indefinitely without debilitating effects, but as we say, “IT IS WHAT IT IS!” 

Presently I have developed 3 blood clots in the last week although I was on the drug Coumadin.  My “Warfarin” level ideally is to be between 2 and 3.  However, in the last 3 weeks of testing, the numbers were 1.9—1.5—1.2.  So for some unknown reason, the drug wasn’t being processed by my body.  So I was given LOVINOX injections for 3 straight days plus greatly increasing my Coumadin dosage.  Monday the count was back up to 1.9.  I return tomorrow for another check to see what’s going on. 

One theory was that because of my ongoing problem with diarrhea as a result of my surgery in which a substantial amount of my intestines were removed, that the drug may not have remained in my system long enough to take effect.  I have lost a good amount of weight and diarrhea is a “monster.”  But I find that since my surgery, the see-saw between Constipation and Diarrhea has been my biggest constant problem.  On “D” days, it isn’t smart to wander far from home!  But hey, I’m still happily alive and in my right mind. 

So if you don’t hear from me quickly, it may mean that I am not doing well on that particular day.  No matter how I feel, I try to keep a check on this site, as well as the Peritoneal and Esophageal forums because I’m not the only one having difficulties.  Other’s experiences help us to better understand our own, and we try to help them with their problems.

So for me, it’s never a matter of “recurrence” but when something new is going to “occur”.  Now if I concentrate on the future possibilities I find that leads to wasted time I could be enjoying what I still am blessed to have in the here and now.  So it is a constant battle to keep my thoughts on what’s happening in the moment and to keep my “mind” on today’s problem. 

Many of my sisters here express a strong abiding faith in the Lord and naturally credit Him with their ability to cope.  But regardless of how we best cope—cope we must.  But this truth goes for all of us who are in this “day-to-day/moment-by-moment” struggle to stay positive and stay strong.  And on that note I would like to share something that the theologian Oswald Chambers wrote years ago on the subject of living in the moment.  He writes:

                                     “God does not give us overcoming life.  

                                      He gives us life as we overcome.

                                      The strain is the strength.

                                      If there is no strain, there is no strength.

                                     God never gives strength for tomorrow,

                                     or for the next hour, but only for the strain of the minute!” 

Borrowing trouble from tomorrow is a constant temptation but only ends in futility.  Yes—it’s easier said than done—living in the moment.  Often that advice is given to us by those who seemingly are enjoying the good life and have few problems—certainly not a Stage IV cancer.  But we will be forever miserable if we find we are “fixed” on the future, of which none of us can be sure, instead of enjoying what God has given us today.  There are blessings and God has to continually remind me that He hasn’t forgotten me.

And just like many others here have stated, I know that my capacity for compassion and appreciation for life have been greatly expanded due to cancer.  Cancer has its own circle of friends.  I think of so many of my friends who died of cancer in my lifetime.  But not until I entered that exclusive circle myself, first as a caregiver to my husband and his Esophageal Cancer some 16 years ago and now my own Stage IV cancer, did I know what it feels like to be diagnosed with cancer.  To say it is a “life changer” is an understatement.  Now what we do with that diagnosis will determine how we “make it.”  No—I’m not wishing I had cancer much earlier in life—I’m just saying now I can say, “I know just how you feel” and really mean it.  And because of that I see now how inadequate I was to actually comfort my many friends who died before me.  So Sandi, since we seem to have much in common, if there is anything I can help you with, I’ll do my best.  Someone has summed it up so beautifully.

                                    “He cannot heal who has not suffered much,

                                     For only sorrow—sorrow understands.

                                     He will not come for healing at our touch,

                                     Who have not seen the scars upon our hands.”

So Sandi, you will find many friends here who have “scars upon their hands” and suffered much  Cry and will gladly help you as well.

Love Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV (DX 11-2012)

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