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UPSC Fighters- My Mom's story of hope! NED after 4 years

treebee
Posts: 17
Joined: Feb 2013

Ladies - wanted to share a glimmer of hope.  My Mom was diagnosed in 2011 with UPSC Grade 3A.  Had radical hysterectomy followed by the standard taxol/carboplatin every 3 weeks.  Had ascites and CA125 in 200's throughout 2014.  In early 2015 she had a recurrence of 3 nodules in her pelvis and Dr. Chu of Fox Chase Cancer Center in Philly prescribed her the latest "dose dense" treatment of the same chemo but weekly.  She did this last year and the result....NED - ascites completely disappeared, the nodules are gone and today her CA125 is 31!!!!!!!!!  So grateful!  You can fight this beast and win!  Ask about dose dense treatment - it is the new standard for ovarian and apparently kicks UPSC's butt too.  Best Wishes, thoughts and prayers to all you ladies, moms, sisters and friends xoxoxo!

Donswife48
Posts: 326
Joined: Nov 2015

I'm very happy for your mom, how wonderful that new must be to her (and you).  I just scanned over the new ovarian report just out, and noticed they mentioned dense dose treatment had success for ovarian cancer.  Hopefully this is something we all can consider for the future.  Hugs Nancy

EZLiving66's picture
EZLiving66
Posts: 1436
Joined: Oct 2015

We UPSC ladies love to hear success stories since most of the statistics are pretty grim.  Congratulations to you and your mom and many, many more years of NED!!  I do believe the only way we're going to kick UPSC's butt is through ovarian cancer treatments - there are just so many more of them than us.

Love,

Eldri

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

Wow, thank you treebee!!!  Do you know, and can you provide the details, of the "dose dense" treatment?  The same chemo (taxol/carbo) weekly for how long?  

So happy for your mom and your family.  Continued NED for her.

Jodisgoing180
Posts: 98
Joined: Feb 2016

I start dose dense for 18 weeks next week. It's Carbo/taxol for one week, two weeks of taxol, then repeated for six rounds. Each Carbo/taxol combination is the start of a new round. The taxol is a lower dose. 

treebee
Posts: 17
Joined: Feb 2013

hi again, yes it was 18 weeks.  It is notable that they call it dose dense because the chemo stays in your body longer despite it being a less toxic dose given weekly vs. a more toxic dose every three weeks.  I personally believe that it does not give the cancer a shot at growing back like the 3 week does... who knows, I am not a doctor but I urge each one of you to ask your doc and insist on the new standard for ovarian.  Hearing the recent news, they are now saying ovarian cancer may have originated from a different source, the bottom line - they do not know due to lack of research.  The dense dose worked for my 73 year old mom and I hope and pray it will work for you amazing women!

 

joannewtta's picture
joannewtta
Posts: 43
Joined: Jul 2014

Diagnosed 6/13 Stage 3 grade 3C. DeVinci hysterectomy, chemo, internal rad. I have not hear it referred to as dose dense but I had weekly chemo for a total of 18 treatments from August 15 2013 to Jan 9 2014. Mine was 1st week full carbo and 1/3 taxol; week two 1/3 dose taxol and same week 3. My blood counts would drop so low that we did the series of 3, next day neulasta shot and one week off. Did this six time. My gyny/onc said that this course of treatment had a slightly higher success rate and was a little less brutal on the body. Week one would be rough and two and three not great but a little bit easier. I had two blood transfusions; one in Oct and one late Dec or early Jan that was just enough  to get me through last treatments. It worked for me with just the extreme fatigue. Eating was a challenge but had very little nausea; just no appetite. I did take Claratin(Costo equilevant) and got through the neulasta shots with no problem at all. Each time I would be scared to death about the pain and it just did'nt happen. I don't want to ever be that tired again in my life. I am now two years Ned and feel good. Last year shoulder surgery; then fell seven weeks later and fractured the humerus where I just had the major surgery. I was in as much pain with that as I was tired with chemo. It just intensified the CRS.

Last year my daughter had four chemos 3 weeks apart after her double masectomy. She had a little more good time maybe than I did but she also only had four and it was a very different chemo. However; we have both experienced bald, just not at the same time. Mother daughter portrait would have been great.

Take care - thinking of all of you - those looking through the rear-view mirror and those scared to death at the beginning of this journey. I'm tough but sure couldn't hold back all the tears that first chemo. I have the greatest gyny/one in the world with a staff that could not be topped. After each checkup I make a run through the chemo room just to get a hug from my nurses.

 

Joanne

rcdeman
Posts: 257
Joined: Aug 2016

Hi, did your mom ever do any kind of radiation therapy or vaginal brachytherapy in combination with the "dose dense" treatment?

cindy0519
Posts: 173
Joined: Nov 2015

Great news for your mom and you family.  Thanks for sharing this.  It is definately something to keep in mind for future reference.  

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