Input please on follow up care

judndav
judndav Member Posts: 5
in Ovarian Cancer #1

My wife was diagnosed with Ovarian Cancer in July 2107.  Did three rounds of chemo Paclitaxil + Taxol, complete historectomy surgery followed by three more rounds of chemo Cisplatin + Taxol.  IV and IP ports used other than first infusion which was IV innto her arms.

CT scan after surgery showed no masses and CA-125 numbers had dropped to about 18 from 271 prior to initial chemo.  Three months after last chemo CA-125 was 10.  She feels well and is exercising regularily. Weight is about 8 pounds less that prior to the cancer. 

Genetic testing revealed she is BRCA2 mutation positive, with indications of elevated breast, colon, melanoma and ovarian cancer risk in the future.

We have a daughter that is a cancer research scientist for a small biopharmaceutical and she has been an emense help, we are blessed.

But OC as you all know is a dangerous cancer that typically recurs and we want to do all we can.

We THINK our doctor's maintenance care will be:

Pelvic exam, CA-125 blood work every three months.

Imaging and complete blood panel testing frequency unknown at this time.  Her first follow up appointment was not the typical appointment with  wife's Surgical-Oncologist, where he typically sits down and takes 10 minutes to have question and answer session.  He did ask her if she had any questions and wife said no so away he went.  I had left the exam room since I felt wife would feel more comfortable with me out.  I think she was not expecting a pelvic exam and it threw her off balance.  Daughter is now mad at Doc since he did not give mom enough time, but actually doc asked if she had questions.  

I have investigated PARP inhibitors on investing sites, clinicaltrials.gov, the drug company sites and internet searches.  They show promise with lesser side effects than chemo, however there are dangerous side effects in some people.  I have looked into our Medicare Advantage plan for coverage and it seems they will cover Lynparza at around $8500/year out of pocket.  This would be an Off Formulary Approval.  

We looked into the Zejula Trial for maintenance therapy, but were too close to the 12 week time cut off since last chemo infusion to get the blood work, imaging scan and HRD tissue testing completed prior to first dosing.

IF OTHERS HERE ARE THINKING ABOUT A TRIAL START EARLY AND FIND OUT WHAT THE REQUIREMENTS ARE SO YOU DO NOT FALL INTO THE SAME SITUATION WE DID.  I called Tesaro and talked to their trial director and she sent me an email with all the clinics that were doing them.  Very helpful.  I would recommend going to the clinic that is doing the trial and get an initial appointment so you get the real scoop.

What are others out there on this board doing for follow up care?  Any with PARP experience?  Avastin?  Just monitoring blood, and scans?

Thank you.

 

Comments

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #2
    Folow up care

    judndav,

    Congratulations to your wife for being NED.  This is always good news.  You are correct.  Ovarian cancer is notorious for coming back after initial treatment.  The good news, for your wife, however, is that patients with the BRCA2 mutation tend to have longer remissions than BRCA negative patients and even BRCA1 positive patients.  That in itself is a blessing.

    I completed front line chemo in February of 2010, for stage III ovarian cancer.  I continued with Avastin for 11 additional rounds ( I received it during chemo with carboplatin and taxol as well).  So far, so good, I have been NED since early 2010.  I am BRCA 1 positive.

    I chose to take a very proactive approach, because I wasn't comfortable with just monitoring my CA-125 and making occasional doctor visits.  I hired a naturopath and followed her advice, changing my diet, managing my stress, removing toxins from my home, exercising, and supporting my methylation, which is related to DNA production - the thing impacted by the BRCA mutation.  The whole process was life changing and I feel better now than I did for years prior to my diagnosis.  I learned that cancer is not only a result of the BRCA mutation, but also toxins and lack of nutrients. 

    I can't give you any advice on clinical trials.  I do know that the Univeristy of New Mexico is conducting a trial on BRCA positive women, who have a recurrance.  They are using a combination of PARP inhibitor and immunotherapy.  The results are excellent, from what I have heard. 

    Congratulations and good luck to your wife.

     

  • judndav
    judndav Member Posts: 5
    edited April 2018 #3
    Input please on follow up care

    Thank you for your reply and congratulations on NED since 2010.

    We did get another appointment coming up in a week to have a sit down and talk about the "Plan" from here on out.  I will be present with wifey and daughter on speaker phone.  Want to clarify when next scan will be and frequency and whether complete blood panels will be done and at what frequenccy.  Also will make it clear we want a sit down meeting at least for 5 minutes.

    At upcoming meeting want to discuss pros and cons of our own Mini Trial of Lynparza (with no chance of placebo).  Downside to this is cost, but do-able and never knowing if they are working or whether the chemo killed the bugs for now.  If we do a parp now on our own will likely exclude us from future Parp trials.

    Not sure we want to go the Avastin route now as maintenance it may be an exclusion for other trials if you use it.

    Heck, wife is NOT going to have a recurrance!!!!!

     

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