My Dad

Hi all.

My Father was dx'd with Barretts last summer, then with EC in August.  He went in on Oct 26 for the stomach pull-up surgery.  Something awful happened while in surgery, we are still trying to get all the records and reports from the hospital/surgeon, but they have not at all been forthcoming.  We found out before he was discharged, that he had started bleeding in surgery, that his entire stomach bled out, and became unusable.  They reconstructed a stomach from a piece of his intestine.  The surgery took about 11-12 hours.

   We have come to find out that not only does my father still have all the cancer that he started with, but that he actually DIED on the table!!!~  The scary part is that he was DNR Do Not Ressucitate.  We Still don't know all the detalis and the surgeon has moved to another hospital accross the country.

  We now are using the local Doc that has been with us from day 1.  He will be going in soon for Radio frequency ablation soon and we are praying to God that this works as its the last chance before The nastier radiation and chemo treatments.

  We are starting to contact Lawyers to persue a case, but with my Dad's health as it is, and I also have cancer right now, I just don't know how we will have the stregnth and tenacity to see this thru.

  I wonder if anyone out there can give us some uplifting information on survival rates for EC.  Dad has been looking at stats and I think he is starting to feel defeated already.  any words of wisdom will be appreciated.

Thanks, Lori in California

OMG Lori,

What a horror story!  It's amazing that your dad even survived the surgery.  But saying that, it makes me believe that your dad has a lot of strength and fight in him.

My husband has EC, stage IVb.  We have been fighting it since December 21, 2006.  So he's already a one year survivor.  He's had 3 rounds of chemo and radiation.  The first round of chemo put him in partial remission - his chemo was carboplatin and xeloda.  The cancer came back in October 2007 and we are still fighting it.  He was on cistplatin and ironotecan but it was very hard on his system.  The tumors did shrink a little bit but not enough to keep him on chemo.

He's been off chemo for 1 month now and feels SO MUCH BETTER.  He is getting daily hydration (I do it at home, as he has a PICC line)  So every morning I hook him up to the IV so that he can receive his one litre of sodium chloride - it's a drip system and takes about 3 hours.  I can't believe how much the hydration has helped him.

Please tell your dad that chemo CAN help - radiation can also help, but I think that chemo is probably the first drug of choice to begin with.

I noticed you are from California - so am I.  Harley (hubby) and I live in the San Francisco Bay Area in a tiny little town called Crockett.

Where in CA do you live?

Sending gentle hugs to you and your dad,

Azzie

On 3/13/2008 lorilocks wrote:

Hi all.

My Father was dx'd with Barretts last summer, then with EC in August.  He went in on Oct 26 for the stomach pull-up surgery.  Something awful happened while in surgery, we are still trying to get all the records and reports from the hospital/surgeon, but they have not at all been forthcoming.  We found out before he was discharged, that he had started bleeding in surgery, that his entire stomach bled out, and became unusable.  They reconstructed a stomach from a piece of his intestine.  The surgery took about 11-12 hours.

   We have come to find out that not only does my father still have all the cancer that he started with, but that he actually DIED on the table!!!~  The scary part is that he was DNR Do Not Ressucitate.  We Still don't know all the detalis and the surgeon has moved to another hospital accross the country.

  We now are using the local Doc that has been with us from day 1.  He will be going in soon for Radio frequency ablation soon and we are praying to God that this works as its the last chance before The nastier radiation and chemo treatments.

  We are starting to contact Lawyers to persue a case, but with my Dad's health as it is, and I also have cancer right now, I just don't know how we will have the stregnth and tenacity to see this thru.

  I wonder if anyone out there can give us some uplifting information on survival rates for EC.  Dad has been looking at stats and I think he is starting to feel defeated already.  any words of wisdom will be appreciated.

Thanks, Lori in California

Thank you so much Azzie 

It is amazing he is alive, but you are right he is a very strong man.  If you knew the whole story, you would be amazed.  Did I mention that I am disabled and recently found I have a recurrence of my cancer now?  (nothing as bad as EC)  yeah...I have also been the primary caretaker as my mother does not drive and has the begining stages of Alzhiemers.

   My Father is going in for radio frequency ablation soon.  He somehow picked up an infection in a small cut on his knee that the infection Doc thinks came from when he was in the hospital.  He has been on antibiotics since January, and now is on Cipro.  They are assuming that since his immune system is down, it is taking longer to heal.  He was cleared by that doc to start the RFA.  IF that does not work, then we go on to Chemo.  (I start a topical chemo next week)

  I am happy to hear that the hydration is helping your Hubby.  What is your course of action now?  Is he on a break from the Chemo, or will they try radiation now?  Do you go to a Cancer center or a local Doctor?

   I know where Crockett is! :)  I was raised in Fremont, moved to the Sierras for a time, and now live in the Santa Cruz Mountains.  My Mom and Dad are in Capitola. 

   I wish you and your Husband the very best.  Thanks again, so much, for replying.

Lori 40 in California
1990-1997 HPV, LEEP, 5FU
June 1997 Hysterectomy~Endometrial and Cervical Cancer
Dec 1998 Lumbar surgery
Aug 2001 Lumbar surgery
Feb 2008 Vulvar lesions excised,Vaginal biopsies performed.
March 2008 VIN3

May your Joy be Pure Joy,
and all your Pain, Champagne...

On 3/14/2008 Azzie21 wrote:

OMG Lori,

What a horror story!  It's amazing that your dad even .survived the surgery.  But saying that, it makes me believe that your dad has a lot of strength and fight in him.

My husband has EC, stage IVb.  We have been fighting it since December 21, 2006.  So he's already a one year survivor.  He's had 3 rounds of chemo and radiation.  The first round of chemo put him in partial remission - his chemo was carboplatin and xeloda.  The cancer came back in October 2007 and we are still fighting it.  He was on cistplatin and ironotecan but it was very hard on his system.  The tumors did shrink a little bit but not enough to keep him on chemo.

He's been off chemo for 1 month now and feels SO MUCH BETTER.  He is getting daily hydration (I do it at home, as he has a PICC line)  So every morning I hook him up to the IV so that he can receive his one litre of sodium chloride - it's a drip system and takes about 3 hours.  I can't believe how much the hydration has helped him.

Please tell your dad that chemo CAN help - radiation can also help, but I think that chemo is probably the first drug of choice to begin with.

I noticed you are from California - so am I.  Harley (hubby) and I live in the San Francisco Bay Area in a tiny little town called Crockett.

Where in CA do you live?

Sending gentle hugs to you and your dad,

Azzie

Thank you so much Azzie 

It is amazing he is alive, but you are right he is a very strong man.  If you knew the whole story, you would be amazed.  Did I mention that I am disabled and recently found I have a recurrence of my cancer now?  (nothing as bad as EC)  yeah...I have also been the primary caretaker as my mother does not drive and has the begining stages of Alzhiemers.

   My Father is going in for radio frequency ablation soon.  He somehow picked up an infection in a small cut on his knee that the infection Doc thinks came from when he was in the hospital.  He has been on antibiotics since January, and now is on Cipro.  They are assuming that since his immune system is down, it is taking longer to heal.  He was cleared by that doc to start the RFA.  IF that does not work, then we go on to Chemo.  (I start a topical chemo next week)

  I am happy to hear that the hydration is helping your Hubby.  What is your course of action now?  Is he on a break from the Chemo, or will they try radiation now?  Do you go to a Cancer center or a local Doctor?

   I know where Crockett is! :)  I was raised in Fremont, moved to the Sierras for a time, and now live in the Santa Cruz Mountains.  My Mom and Dad are in Capitola. 

   I wish you and your Husband the very best.  Thanks again, so much, for replying.

Lori 40 in California
1990-1997 HPV, LEEP, 5FU
June 1997 Hysterectomy~Endometrial and Cervical Cancer
Dec 1998 Lumbar surgery
Aug 2001 Lumbar surgery
Feb 2008 Vulvar lesions excised,Vaginal biopsies performed.
March 2008 VIN3

May your Joy be Pure Joy,
and all your Pain, Champagne...

On 3/14/2008 Azzie21 wrote:

OMG Lori,

What a horror story!  It's amazing that your dad even .survived the surgery.  But saying that, it makes me believe that your dad has a lot of strength and fight in him.

My husband has EC, stage IVb.  We have been fighting it since December 21, 2006.  So he's already a one year survivor.  He's had 3 rounds of chemo and radiation.  The first round of chemo put him in partial remission - his chemo was carboplatin and xeloda.  The cancer came back in October 2007 and we are still fighting it.  He was on cistplatin and ironotecan but it was very hard on his system.  The tumors did shrink a little bit but not enough to keep him on chemo.

He's been off chemo for 1 month now and feels SO MUCH BETTER.  He is getting daily hydration (I do it at home, as he has a PICC line)  So every morning I hook him up to the IV so that he can receive his one litre of sodium chloride - it's a drip system and takes about 3 hours.  I can't believe how much the hydration has helped him.

Please tell your dad that chemo CAN help - radiation can also help, but I think that chemo is probably the first drug of choice to begin with.

I noticed you are from California - so am I.  Harley (hubby) and I live in the San Francisco Bay Area in a tiny little town called Crockett.

Where in CA do you live?

Sending gentle hugs to you and your dad,

Azzie