July check in

CA 125 at 52 last month--hoping it might be in the normal range after chemo again in a week. After that, I think I have just one more chemo session in this present program. Feeling pretty good; got Neulasta for my anemia at my last chemo 2 wks ago and my stamina is improving, tho not really where I'd like it. The 2-yr anniversary of my diagnosis is next week. Since 12-24 months (it's old data, I know) is the median survival for my primary peritoneal cancer (treated like ovarian), I feel grateful to have made it this far while feeling reasonably good most of the time.

Greetings & best wishes to all!

Carole

www.CaringBridge.org/visit/CaroleSeaton

I am going on the third month on the PARP trial. I feel fine, no side effects, CA125 is in the normal range (33). I think about all of you every day, even if I don't post as much. I feel a little guilty about how easy I got it compared to those of you on chemo. Feel better y'all !

Many hugs,

Alexandra

scatsm said:

No guilt, Alexandra...

It makes me happy to think that you are feeling good and kicking cancer's butt at the same time.....keep it up and keep posting!

xoxo Susan

I've been gratefully living with NED (no evidence of disease) since finishing my frontline chemo in March 2011 - 3 years and 4 months so far of NED.  I so admire the strength and courage of you ladies.  You are my heroes!

Wishing the best for you all.

Love and hugs,

Kelly

Gratefully I also have been NED since my initial surgery in April 2008...6 yrs 3 mo. I do lurk here and say prayers for all you wonderful ladies that are fighting this horrible disease. As Val always says "Stay Strong"

Joan

Released from PARP drug trial after 11 months.  Havent had treatment since end of March.  Hoping to get into another clinicl trial this month. 

Hi, Everyone!

My thoughts and prayers to all of you who continue to be on this journey.  I haven't forgotten how it feels, nor all that we go through.

Well, my first DX in 2000 (Stage 1C OVCA), and recurrance in 2006; breast cancer in 2013.  Feeling better after completion radiation, not fond of the aromatase inhibitor.  But if that's the worst it will get, I can live with it.  Still a little pain from the surgery, but nothing I can't handle.  Living each day in thanksgiving for another opportunity to be here!

(((HUGS))) & Prayers to you all! 

Monika

Hi All, 

I haven't checked in for awhile and it's wonderful to see your beautiful faces and hear that you're doing well whether in NED or chemoing. I celebrated my 8th year anniversary since my diagnosis ( 3C ). I've been chemoing for the last 4 1/2 years.... Whew... that sounds long even to me. My CA-125's have stayed stable, although not in the normal range. My Onc is calling my chemo "maintenance". I have been on the cocktail of cisplatin w/Gemzar one week and Gemzar the next with 2 to 3 weeks off in between. My Onc lets me set that schedule according to what I have planned. I'd love to stretch the time between chemos, but this cocktail has been working so well for that I don't want to lose it as an option.

I'm going to try and catch up with the news here on the board and I send my best wishes for all.

                      (((((((HUGS))))))).    Maria

Mwee said:

July check in

Hi All, 

I haven't checked in for awhile and it's wonderful to see your beautiful faces and hear that you're doing well whether in NED or chemoing. I celebrated my 8th year anniversary since my diagnosis ( 3C ). I've been chemoing for the last 4 1/2 years.... Whew... that sounds long even to me. My CA-125's have stayed stable, although not in the normal range. My Onc is calling my chemo "maintenance". I have been on the cocktail of cisplatin w/Gemzar one week and Gemzar the next with 2 to 3 weeks off in between. My Onc lets me set that schedule according to what I have planned. I'd love to stretch the time between chemos, but this cocktail has been working so well for that I don't want to lose it as an option.

I'm going to try and catch up with the news here on the board and I send my best wishes for all.

                      (((((((HUGS))))))).    Maria

I am so glad you checked in.  I thought of you when I posted on this thread.  Glad to hear you are doing well.  You are an inspiration to me since I am on my second recurrance and can see that there is always hope.  

Karen

I do not post on here much.  My last post was in November right before I went into the hospital for surgery.  My official diagnosis was surgery day - 7 years go this July 10th.  Yay!

I have not read all the posts - but skimmed quite a few and it looks like a lot of you are having some good successes which is awesome to read!  As for me I believe I have been granted so many miracles over the past several years and well every day is truely a blessing.  

This is long - but here is what has been going on with me since Dec of last year.  

I was on Doxil last year (second reoccurence) and started feeling sick and having a lot of stomach trouble towards the end of the year.  A colonoscopy discovered a tumor that had grown into my large intestine.  I was not a good candidate for a second surgery - primarily due to excessive scar tissue.  But we didn't really have a choice so I was scheduled for surgery on December 3.  

What was to be about a 3 hour surgery and a 1-2 week hospital stay turned into a 6 hour surgery followed by a month in the hospital.  It took them a while to locate it but they successfully removed the part of my large intestine with the tumor.  But the worse news was that I had an insane amount of scar tissue all in and around my small intestine gumming everything up like glue.  This is what had been giving me so much trouble - probably more so than the tumor.  When my doctor found this - he called in the chief of surgery - who was thankfully on duty and in the hospital - to help out.  Most of the extra time was due to them trying to remove as much of the scar tissue as they could.  The result was removal of a little less than 5 feet of my gut and multiple resections.  I was lucky I did not come out with a bag.  Then I developed an infection and a bowel leak.  Successfully got the infection drained by a radiologist and they started me on major antibiotics.  If there was a bowel leak it fixed itself.  SO thankfully opening me backup was off the table.  Well then I went into renal failure due to the antibiotics!  Gheeze!  So now I have my gyn/onc, the other surgeon who helped, an infectious disease doctor and a renal doctor!  At one point I counted and between IV's, drains, etc I had 14 tubes coming out of various parts of my body! 

But we got it all under control and I came home from the hospital on New Years Eve.  It was a long bad haul and I am very lucky to be here typing this!  I think this was at least the second or third miracle I feel like I had been granted since all of this started.  

I have recovered from surgery nicely.  I lost over 30 pounds in the hospital and didn't have so much as a pair of sweat pants that I could wear when I got home!  Good excuse to buy a new wardrobe I guess.  I had gotten a little fluffy but a month long stay in the hospital with a stomach tube and no solid food was not the diet plan I had in mind!  

Switched from Doxil to Gemzar this January.  Then got sick a couple of weeks ago - this time after what happened that ultimately led to surgery I knew what was going on - I was pretty sure I had another bowel obstruction.   I was admitted to the ER on a Thursday and it was determined that I had a narrowing in part of my colon from scar tissue and or tumor growth.   We were pretty sure I was getting colostomy but the coloRectal specialist successfully got it cleared up and determined that I should be able to continue to function without surgery.  Five days later on the following Tuesday I was released.  This was the third or fourth miracle.  

Got out of the hospital on a Tuesday - left for vacation on Friday.  A week in the mountains fishing, hiking and doing a whole lot of nothing!  It was awesome!  But before we left the hospital my doctor discussed prognosis with me for the first time in 7 years.  Due to the progression of my diesease and the fact that I am so high risk for another bowel obstruction - he suggested we start making end of life plans and that my life span could be as short as 6 months to a year.  

I am on a pretty strict low fiber diet in an effort to reduce the possibility of another bowel obstruction.  Also I am supposed to take Miralax at least two times a day to help keep things moving.  I started on anew chemo drug today -  Topotecan and so far so good.  

I am amazingly upbeat - my husband on the other hand is understandably having a really hard time.  He asked me and I said

"I am happy today becasue I feel good today.  I am going to forge ahead with all my plans for the remainder of the year like everything is fine.  Who knows we may look up before long and find it is time to decorate for Christmas!"

123Miley said:

7 Year Survivor - Every Day is a Blessing

I do not post on here much.  My last post was in November right before I went into the hospital for surgery.  My official diagnosis was surgery day - 7 years go this July 10th.  Yay!

I have not read all the posts - but skimmed quite a few and it looks like a lot of you are having some good successes which is awesome to read!  As for me I believe I have been granted so many miracles over the past several years and well every day is truely a blessing.  

This is long - but here is what has been going on with me since Dec of last year.  

I was on Doxil last year (second reoccurence) and started feeling sick and having a lot of stomach trouble towards the end of the year.  A colonoscopy discovered a tumor that had grown into my large intestine.  I was not a good candidate for a second surgery - primarily due to excessive scar tissue.  But we didn't really have a choice so I was scheduled for surgery on December 3.  

What was to be about a 3 hour surgery and a 1-2 week hospital stay turned into a 6 hour surgery followed by a month in the hospital.  It took them a while to locate it but they successfully removed the part of my large intestine with the tumor.  But the worse news was that I had an insane amount of scar tissue all in and around my small intestine gumming everything up like glue.  This is what had been giving me so much trouble - probably more so than the tumor.  When my doctor found this - he called in the chief of surgery - who was thankfully on duty and in the hospital - to help out.  Most of the extra time was due to them trying to remove as much of the scar tissue as they could.  The result was removal of a little less than 5 feet of my gut and multiple resections.  I was lucky I did not come out with a bag.  Then I developed an infection and a bowel leak.  Successfully got the infection drained by a radiologist and they started me on major antibiotics.  If there was a bowel leak it fixed itself.  SO thankfully opening me backup was off the table.  Well then I went into renal failure due to the antibiotics!  Gheeze!  So now I have my gyn/onc, the other surgeon who helped, an infectious disease doctor and a renal doctor!  At one point I counted and between IV's, drains, etc I had 14 tubes coming out of various parts of my body! 

But we got it all under control and I came home from the hospital on New Years Eve.  It was a long bad haul and I am very lucky to be here typing this!  I think this was at least the second or third miracle I feel like I had been granted since all of this started.  

I have recovered from surgery nicely.  I lost over 30 pounds in the hospital and didn't have so much as a pair of sweat pants that I could wear when I got home!  Good excuse to buy a new wardrobe I guess.  I had gotten a little fluffy but a month long stay in the hospital with a stomach tube and no solid food was not the diet plan I had in mind!  

Switched from Doxil to Gemzar this January.  Then got sick a couple of weeks ago - this time after what happened that ultimately led to surgery I knew what was going on - I was pretty sure I had another bowel obstruction.   I was admitted to the ER on a Thursday and it was determined that I had a narrowing in part of my colon from scar tissue and or tumor growth.   We were pretty sure I was getting colostomy but the coloRectal specialist successfully got it cleared up and determined that I should be able to continue to function without surgery.  Five days later on the following Tuesday I was released.  This was the third or fourth miracle.  

Got out of the hospital on a Tuesday - left for vacation on Friday.  A week in the mountains fishing, hiking and doing a whole lot of nothing!  It was awesome!  But before we left the hospital my doctor discussed prognosis with me for the first time in 7 years.  Due to the progression of my diesease and the fact that I am so high risk for another bowel obstruction - he suggested we start making end of life plans and that my life span could be as short as 6 months to a year.  

I am on a pretty strict low fiber diet in an effort to reduce the possibility of another bowel obstruction.  Also I am supposed to take Miralax at least two times a day to help keep things moving.  I started on anew chemo drug today -  Topotecan and so far so good.  

I am amazingly upbeat - my husband on the other hand is understandably having a really hard time.  He asked me and I said

"I am happy today becasue I feel good today.  I am going to forge ahead with all my plans for the remainder of the year like everything is fine.  Who knows we may look up before long and find it is time to decorate for Christmas!"

Don't count the days, just enjoy each and everyone of them Before you know it another year will pass. New research is happening all of the time and may help you. Don't give up hope. Kim