How are we going to conquer this disease

My name is Jillian, and I am thirty years old.  I have lost a mom who was healthy as can be.  She was a nurse in the ER, ICU, Cardiac rehab, and diabetic educator.  This women was focused, and healthy.  She had no predisposing factors.  She was a health and fitness freak.   She had just turned 49 years old.     I am her daughter. 

I lost her almost a year ago today.  She had inopearable pancreatic cancer.  She had rounds of chemo.  Chemotherapy that laughed in her face.  I walked with her night after night for 6 month's because of how much pain she was in.  I left my family and took care of her daily.    She had 2 nerve blocks, and was on the highest doses of oxycontin, oxycodone, zofran, reglan, and compazine.  I am an intensive care nurse and already knew what I was in for.  My mom knew the minute of her diagnosis because she was twice the nurse I was.  She died 6 month's to her diagnosis. 

 I need to find the right people to blow Pancreatic cancer out of the waters.  I need a team of people that want to fight this devastating disease.  You hear about breast ca, but breast ca is more curable than almost any GI cancers.  We need to do something.  Our generations to come have this disease linked to them. 

The minute this disease affects a person there quality of life is almost gone.  There is no quality of life no matter what people say.  None.  I have experience in this. 

 Doctors are great, but not that great.  They give you hope.  Hope is already in your body, mind, and spirit.  You have to hope.  Hope.......  Well, hope is great, but what an experience to be there day in and day out with someone you love soooo much.  HA!!!

There are people that abuse themselves on a daily bases and my mom who was so health conscious all of her life has to suffer from this asshole disease.  HA!!!

 Anyhow, if anyone wants to ask me a question I will be straight forward and try to lead you in the right direction.  I also do have a relationship with God and work on it daily.  Although, it is challenging when you loose someone so significant to you.   

It is indeed frustrating that so little attention is paid to PC.

It is up to us, the families of the deceased, to raise awareness and money. All my cancer donations now go only to PC. I support Pancan any way I can.

I was so happy to read in the Philadelphia Inquirer several months ago that there is aggressive PC research being conducted right now. It is a three year project with the goal of developing more and better treatments. It is largely based at the University of Pennsylvania  but other doctors in other hospitals (including Johns Hopkins) are involved. The money is coming from the cancer fundraiser Katie Couric led on NBC last year.

We need to be aggressive and not accept the terrible survival rate this disease has. We need to keep it on the front burner. We need to speak for our loved ones.

Hi Jillian,

I have just read your powerful message; I know almost how you feel.  I am so sorry for the loss of your Mother. 

My husband had Whipple surgery in 12/06, and although he survives today, his quality of life is terrible.  He has constant diarrhea and has to wear diapers 24/ 7.  He has lost about 65 pounds and is now down to 125 and is 6' 1".  He is unable to retain any weight due to the diarrhea and his compromised pancreas, even though he takes enzymes with all food.  He also has history of rectal and colon cancer with bilateral, inoperable pulmonary mets.  Until recently he was able to get out with his friends and go bowling several times and play cards once every week.  Recently he has been unable to get around on his own, has had cataract surgery on his right eye and is unable to drive at this time.  He requires help with bathroom needs, up and down steps and is unable to care for himself in the most basic way.  This slow but steady decline over the past several years has been heartbreaking to watch.  I wonder when it will end; I can't imagine he is enjoying his life.

I will be pleased when there is better treatment for pc patients, even though it will be too late for us.

Joan L   

 

On 9/6/2009 Jillian Jarzombek wrote:

My name is Jillian, and I am thirty years old.  I have lost a mom who was healthy as can be.  She was a nurse in the ER, ICU, Cardiac rehab, and diabetic educator.  This women was focused, and healthy.  She had no predisposing factors.  She was a health and fitness freak.   She had just turned 49 years old.     I am her daughter. 

I lost her almost a year ago today.  She had inopearable pancreatic cancer.  She had rounds of chemo.  Chemotherapy that laughed in her face.  I walked with her night after night for 6 month's because of how much pain she was in.  I left my family and took care of her daily.    She had 2 nerve blocks, and was on the highest doses of oxycontin, oxycodone, zofran, reglan, and compazine.  I am an intensive care nurse and already knew what I was in for.  My mom knew the minute of her diagnosis because she was twice the nurse I was.  She died 6 month's to her diagnosis. 

 I need to find the right people to blow Pancreatic cancer out of the waters.  I need a team of people that want to fight this devastating disease.  You hear about breast ca, but breast ca is more curable than almost any GI cancers.  We need to do something.  Our generations to come have this disease linked to them. 

The minute this disease affects a person there quality of life is almost gone.  There is no quality of life no matter what people say.  None.  I have experience in this. 

 Doctors are great, but not that great.  They give you hope.  Hope is already in your body, mind, and spirit.  You have to hope.  Hope.......  Well, hope is great, but what an experience to be there day in and day out with someone you love soooo much.  HA!!!

There are people that abuse themselves on a daily bases and my mom who was so health conscious all of her life has to suffer from this asshole disease.  HA!!!

 Anyhow, if anyone wants to ask me a question I will be straight forward and try to lead you in the right direction.  I also do have a relationship with God and work on it daily.  Although, it is challenging when you loose someone so significant to you.   

Hi, Jillian.  I agree that something must be done about this disease.  I was diagnosed with stage IV PC a year ago and was given a chance to live for maybe 10 months.  I'm still on this side of the dirt and enjoying a good quality of life.  However, in November and December I was ready to go on to whatever lies on the other side.  That was because the recommended treatment, Gemzar and Tarceva was awful.  Side effects were so bad I lost over 40 pounds.

Thank God my oncologist changed my regimen to 5FU and Leukovarin.  My cysts and PC have stabalized and I've gained back more weight than I lost. 

From reading the posts on this website I know I'm one of the lucky ones.  I see some who don't make it 3 months past diagnosis while others seem to go on for years.

My point is that we need to find a treatment that will work for all those afflicted with this crappy disease.  I'll join in with whatever you undertake for as long as I have left.  I hope that's a long time.  Just let me know what I can do.

Sorry for you loss. 

 

On 9/6/2009 Jillian Jarzombek wrote:

My name is Jillian, and I am thirty years old.  I have lost a mom who was healthy as can be.  She was a nurse in the ER, ICU, Cardiac rehab, and diabetic educator.  This women was focused, and healthy.  She had no predisposing factors.  She was a health and fitness freak.   She had just turned 49 years old.     I am her daughter. 

I lost her almost a year ago today.  She had inopearable pancreatic cancer.  She had rounds of chemo.  Chemotherapy that laughed in her face.  I walked with her night after night for 6 month's because of how much pain she was in.  I left my family and took care of her daily.    She had 2 nerve blocks, and was on the highest doses of oxycontin, oxycodone, zofran, reglan, and compazine.  I am an intensive care nurse and already knew what I was in for.  My mom knew the minute of her diagnosis because she was twice the nurse I was.  She died 6 month's to her diagnosis. 

 I need to find the right people to blow Pancreatic cancer out of the waters.  I need a team of people that want to fight this devastating disease.  You hear about breast ca, but breast ca is more curable than almost any GI cancers.  We need to do something.  Our generations to come have this disease linked to them. 

The minute this disease affects a person there quality of life is almost gone.  There is no quality of life no matter what people say.  None.  I have experience in this. 

 Doctors are great, but not that great.  They give you hope.  Hope is already in your body, mind, and spirit.  You have to hope.  Hope.......  Well, hope is great, but what an experience to be there day in and day out with someone you love soooo much.  HA!!!

There are people that abuse themselves on a daily bases and my mom who was so health conscious all of her life has to suffer from this asshole disease.  HA!!!

 Anyhow, if anyone wants to ask me a question I will be straight forward and try to lead you in the right direction.  I also do have a relationship with God and work on it daily.  Although, it is challenging when you loose someone so significant to you.   

Hi Jillian, I am so sorry for your loss. I was diagnosed with stage IV neuro-endocrinePC in 2007 and had the Whipple in 2007. My entire pancreas was removed due to the tumor being so large. Surgery took 14 hours and I was in a induced coma for 2 weeks cause I developed renal failure and phnemmonia. The portal vein was damaged from the tumor and the docs tried to fix it by taking a vein from my neck, but all attempts to fix it failed leaving the portal vein thrombosed still to this day.

I may be one of the lucky ones, if having PC is lucky, the PC that I have is the very rare kind. Less aggressive slow growing PC. The cancer has spread to my liver, lymph nodes and know there are spots in my right lung. As for my quality of life, I have chronic diahrea, losing weight like crazy and pain that is not to severe its tollerable. Had I known I would be in this kind of condition after the Whipple, I really don't think I would have   had the surgery.

My latest struggle now is swelling in my ankles. None of my doc's can give me a reason why I have this BAD BAD swelling, my ankles are ballooned up all the time even taking meds.

I developed 2 hernias that I'm scheduled for surgery to repair this Friday 9/11/09. I'm hoping to recover from the surgery quickly cause I am planning to walk in a 3 mile PC walk on 9/27/09. I am willing to support PC in any way that I can.

I live in Northampton Pennsylvannia and I go to Fox Chase Cancer Center in Philadelphia Pa. involved in a clinical trial. I have had NO chemo or radiation, which I blessed not to have to go through that.

Again I am really sorry for your loss, but I 'm glad your out there fighting for all of us that have been stricken with this evil cancer. Thank you for all you do..................

God Bless You, Dawn M.

Dear ace42,

   My husband is currently on the gemzar, taxotere, and xeloda(GTX), is that the same treatment they took you off of. My husband just started getting itchy hands and his hair has started to fall out. He was diagnosed in June 2008 with PC Stage 1B and in Feb 2009 had a clean pet scan. Now end of July 2009 the cancer has come back and is Stage IV PC. My husband is only 37 years old, I am not ready to loose him at such an early age. We are hoping to be able to do Therasphere in about a month, we hope that will slow down the liver lesions and the pancreatric tumor size. If anyone can give me more info, I will greatly appreciate it. I am only 36 and this man I speak of is my life.

I just got done with the memorial service today on 9/9/09 for my Mom, best friend with PC stage IV, and only a 5 month battle.  I am sad, angry, and confused as to why NOTHING seems to get done with this cancer.  I am also a nurse, and I had to "nurse" my mom to her last breaths.  This is the most swept under the rug cancer that there is.  You never hear about it until you know someone who gets it.  That needs to change.  How can I help??  I will, anything.  After the memorials, we have about $2500.00 to be donated to Pan can.  That is where I wanted it all to go, no better place in the world! 

On 9/6/2009 Jillian Jarzombek wrote:

My name is Jillian, and I am thirty years old.  I have lost a mom who was healthy as can be.  She was a nurse in the ER, ICU, Cardiac rehab, and diabetic educator.  This women was focused, and healthy.  She had no predisposing factors.  She was a health and fitness freak.   She had just turned 49 years old.     I am her daughter. 

I lost her almost a year ago today.  She had inopearable pancreatic cancer.  She had rounds of chemo.  Chemotherapy that laughed in her face.  I walked with her night after night for 6 month's because of how much pain she was in.  I left my family and took care of her daily.    She had 2 nerve blocks, and was on the highest doses of oxycontin, oxycodone, zofran, reglan, and compazine.  I am an intensive care nurse and already knew what I was in for.  My mom knew the minute of her diagnosis because she was twice the nurse I was.  She died 6 month's to her diagnosis. 

 I need to find the right people to blow Pancreatic cancer out of the waters.  I need a team of people that want to fight this devastating disease.  You hear about breast ca, but breast ca is more curable than almost any GI cancers.  We need to do something.  Our generations to come have this disease linked to them. 

The minute this disease affects a person there quality of life is almost gone.  There is no quality of life no matter what people say.  None.  I have experience in this. 

 Doctors are great, but not that great.  They give you hope.  Hope is already in your body, mind, and spirit.  You have to hope.  Hope.......  Well, hope is great, but what an experience to be there day in and day out with someone you love soooo much.  HA!!!

There are people that abuse themselves on a daily bases and my mom who was so health conscious all of her life has to suffer from this asshole disease.  HA!!!

 Anyhow, if anyone wants to ask me a question I will be straight forward and try to lead you in the right direction.  I also do have a relationship with God and work on it daily.  Although, it is challenging when you loose someone so significant to you.   

I hear you and feel your pain. It will be a year next month that I lost my mom to pancreatic cancer. Her pain was under better control after cyberknife radiation, but came back after just 1 round of chemo, which did nothing but further weaken her system. She died 7 months after diagnosis, during a stomach surgery she had to go around a pancreatic tumor that was blocking off her stomach. She fought, she stayed as long as she could. We had her in home hospice, which I didn't like except for the fact that they're good at pain relief, which we were able to give her, Thank God. Her last words were, "I want to live." I miss her every day and it's just terrible. I dropped everything to take care of her too, so I'm now unemployed. The only thing I know is that the Lustgarten Foundation on LI is funded by Cablevision, whose executive died a number of years ago from this terrible disease. Because of Cablevision, 100% of donations go to pancreatic cancer research. There hasn't been enough of that to date as far as I'm concerned, so that's where we suggest donations go. We need research, and more research. My mom's only risk factors were a family history of melanoma. We ate very little meat, she didn't smoke,and wasn't overweight. So, who knows.... Blessings. It's a terrible, violent disease and I wouldn't wish it on anyone.

A start would be to go to www.pancan.org and use the links to contact your representative to sponsor HR 745 which is a bill that would increase the money for research into pancreatic cancer.  We still need co-sponsors.  Any contributions to pancreatic cancer research through the Lustgarten Foundation, or PANCAN would be helpful.  However, the source of the big bucks is still the US government.  Joan Kroc, of the McDonald's fortune, contributed a large amount of money to the American Cancer Society and that money was responsible for finding the BRCA gene.  Maybe Steve Jobs and Patrick Swayze, who have pancreatic cancer, will increase their efforts to bring awareness to this terrible disease and/or fund it with a large amount of money.  My husband died of it in December after only 3 months.  I volunteer for PANCAN.  It will be my life's work to do all I can to conquer this disease that took my love away from me.

 Barbara

It has been a year ago for our Mother as well. Mom was 71 yrs old and smoked, from the date of diagnosis she lasted three months. My sister and I saw her through to her final days, my sister nurturing her while I drove back and forth. We had never heard of this type of cancer prior to Mom’s diagnosis. The tumor was very large and her initial complaint was from stomach ache. The Gastro Doctor after the pain would not subside, and her becoming Jaundice went further down and found the mass. Mom smoked and ate oysters; we wish we could figure out what caused this. I am so sorry for your loss and we understand your pain. Everything just happened so fast and to make matters worse, we were burying her on a Monday and our brother was killed on the Sunday going to pick up his suit. Life will never be the same and I think pancreatic cancer is more common than we know.

 Melissa