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Recurrance...can anyone offer insight?

Angel1505
Posts: 2
Joined: Jan 2014

Hello everyone-

My Mom was diagnosed with Primary Peritoneal in June of 2013.  She had gone in for a routine physical and asked for a annual exam which hadn't been done in two years because her Dr. didn't feel as though she needed one the previous year.  Mom is 60 years old and beat breast cancer 19 years ago.  Anyway, those labs came back abnormal.  One thing led to another and she wound up with having a hysterectomy with a Gynecological Oncologist...just in case.  The surgeon who performed that surgery proclaimed there was no cancer and Mom would be fine.  A week later we got the call that the pathologist disagreed.  Although there was no visibile disease there were cells consistent with Primary Peritoneal in her ovaries, fallopian tube and her omentum - Stage 3 they called it.  No surgery was recommended as the disease could not be seen my the naked eye.  In June we started Carboplatin and taxol...six treatments.  Her CA 125 numbers fell to the lower teens but before the last treatment they had started to inch up again.  Dr. told us not to worry since it was still within normal limits.  She got a break from treatment from October to December when we she had a CT scan and labs again.  Her CA 125 is up to 345 and her scan shows several small masses that were not there before.  They masses are primarily in her belly but there is also concern over the lymph nodes in her chest.  She is set to begin an unknown number of treatments with Doxil.  The Dr. and all that we have read about this drug scares the crud out of us.  Can anyone offer any insight/experpience with recurrance?  And, please give us some idea what to expect from Doxil?

Thanks so much,

Angie

Nflinchum
Posts: 73
Joined: Jun 2012

Hi Angie, 

I was diagnosed with PPC in December of 2011 stage 4. I had a major surgery plus 9 aggressive treatments of carboplatins and taxol. 6 treatments of Avastin. I went in remission in August  2012 with my CA 125's only down to 48. They started climbing back up over a course of 5 months. Nothing was showing on the CT scans. So in May 2013 the dr. Did an exploratory surgery. The results being cancer cells in the abdominal wash out he did. They tried carboplatins again for 3 months--no response plus my CA's had soared to 4075. Then in October 2013 I got on a clincial trial of doxil and trial drug AMG386. So far with 3 treatments of doxil and 12 weeks of trial drug my CA 125's have came down to 1135 and my CT scan shows improvement. I had to go through several test before I could take the doxil for it can cause issues with your heart. They did a muga scan to see how healthy and strong my heart was. I have to have a EKG every 4 weeks, bloodwork and they check my urine. The side effects I have had are no appetite, sores in my mouth, tired,rashes on my body, fluid,and hand and foot syndrome (which has been the worse--blisters on my feet after third treatment could hardly walk for a week--feet hurt so bad---now they are peeling). My rashes and hand and foot issues didn't start until about 15 to 17 days after I took my treatment. I have talked with one lady that says she didn't have any side effects from doxil The dr is going to reduce my dosage next week so hopefully I won't have as many side effects. All of the side effects of the chemo scare me and has scarred me for life. I also have severe neuropathy in my hands and feet from my first treatments. Seems to only get worse instead of better. Sorry there are not lots of positives in this post but I  know if I hadn't taken the chemo treatments I wouldn't be here today. I certainly wouldn't have taken it the second time around if it hadn't been for my daughter and granddaughter. They are the reason I fight this horrible disease. Keep me posted on your decisions and progress. You will be in my thoughts and prayers.

Nadine

seatown's picture
seatown
Posts: 217
Joined: Sep 2012

I have the same questions as you...I've basically been on Carboplatin/Taxol for most of the last 18 months; went into remission briefly last year but now am looking at recurrence. I can't help with what to expect on Doxil. Ten days ago when my surgeon said I "probably" had a recurrence, additional chemo with new drugs (not specified) was one of the options he offered. Instead I'm doing another option, hormone supression with Arimidex, which was the surgeon's recommendation. I see my oncologist this week and am eager to hear what he has to say.

So sorry to hear about your mom and hope she has minimal side effects. I'll look forward to hearing of her progress.  Good luck!

FYI, my treatment(s) and the ups and downs of my illness are at www.CaringBridge.org/visit/CaroleSeaton

Angel1505
Posts: 2
Joined: Jan 2014

Thanks ladies for your replies.  Every little bit of information is helpful.  We like my Mom's doctors but too often they don't give enough information about real world experience with all these treatments.  I was able to fine several ladies that had been on doxil over on the ovarian cancer board.  That gave us a good idea of what to expect and maybe how to manage the side effects.  It is nice too to find someone else with the same diagnosis as my Mom.  We had gone into treatment so hopeful, at first for a cure and then for  long remission.  When we didn't get either of those it felt like I'd been punched in the stomach by a professional boxer.  Pretty much been that way ever since.  But, I'm sure you know as well as we do how that feels.  We are hoping Doxil can manage Mom's disease.  For now, we will put one foot in front of the other. 

I am really curious to know more about the hormone therapy.  That hasn't even been mentioned here.  Just the different chemo combinations and that there are many more to try. 

 

Mom starts her Doxil on Tuesday.  I will let you know how it goes.

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