Intro and another question

I've asked a couple of questions on here but have never introduced myself.  My name is Carrie and my dad was disagnosed with PC in May of this year.  He was scheduled for Whipple surgery the end of May but they were unable to do operation due to attached to some of the main viens. My family was absolutely heartbroken.  Next was a month to heal.  We were told they would do chemo along with radiation but that then changed.  Doctor wanted to save radiation for pain control down the line????  The choice was between chemo's-either Gemzar or Folfirinox.  He chose the Folfirinox and has had one treatment.  He started last week.  It has been rough to say the least.  He is loosing alot of weight.  His appetite is almost nonexistant and everything tastes horrible, even water.  Any suggestions on how to  ease that horrible taste?  He's using plastic utensils but it doesn't seem to be helping.  I've researched and researched but haven't found anything that works. He's not the most cooperative pt either.  I can't stand to see him fade away but don't know what else to suggest. I keep telling him he has to eat and drink but he's just not getting enough.  I hate this, hate this, hate this!!!!  I'm suppose to be strong for him but seeing him like this is tearing me apart. 

Carrie

On Jul 03, 2012 2:46 AM Canary92 wrote:

I've asked a couple of questions on here but have never introduced myself.  My name is Carrie and my dad was disagnosed with PC in May of this year.  He was scheduled for Whipple surgery the end of May but they were unable to do operation due to attached to some of the main viens. My family was absolutely heartbroken.  Next was a month to heal.  We were told they would do chemo along with radiation but that then changed.  Doctor wanted to save radiation for pain control down the line????  The choice was between chemo's-either Gemzar or Folfirinox.  He chose the Folfirinox and has had one treatment.  He started last week.  It has been rough to say the least.  He is loosing alot of weight.  His appetite is almost nonexistant and everything tastes horrible, even water.  Any suggestions on how to  ease that horrible taste?  He's using plastic utensils but it doesn't seem to be helping.  I've researched and researched but haven't found anything that works. He's not the most cooperative pt either.  I can't stand to see him fade away but don't know what else to suggest. I keep telling him he has to eat and drink but he's just not getting enough.  I hate this, hate this, hate this!!!!  I'm suppose to be strong for him but seeing him like this is tearing me apart. 

Carrie

Hi Carrie,

Our stories sound very similar. My mom is battling PC too. We went in for the Whipple and it was also abandoned based on artery involvement. My mom is also taking FOLFIRINOX, and she is doing well. I'm sorry you are having the problems with your dad. Mom had issues with weight loss and diarrhea at first, but she is past that now. They say the first few treatments are the most difficult.

I'm so sorry you are going through this. My heart breaks for all families facing this horrible cancer. I just thank God every day for my mom's quality of life. We have been truly blessed. Try to focus on the positives each day, and just be thankful. It helps. I will be praying you and your father, Carrie. God Bless!

On Jul 03, 2012 4:44 AM BlessedDaughter wrote:

On Jul 03, 2012 2:46 AM Canary92 wrote:

I've asked a couple of questions on here but have never introduced myself.  My name is Carrie and my dad was disagnosed with PC in May of this year.  He was scheduled for Whipple surgery the end of May but they were unable to do operation due to attached to some of the main viens. My family was absolutely heartbroken.  Next was a month to heal.  We were told they would do chemo along with radiation but that then changed.  Doctor wanted to save radiation for pain control down the line????  The choice was between chemo's-either Gemzar or Folfirinox.  He chose the Folfirinox and has had one treatment.  He started last week.  It has been rough to say the least.  He is loosing alot of weight.  His appetite is almost nonexistant and everything tastes horrible, even water.  Any suggestions on how to  ease that horrible taste?  He's using plastic utensils but it doesn't seem to be helping.  I've researched and researched but haven't found anything that works. He's not the most cooperative pt either.  I can't stand to see him fade away but don't know what else to suggest. I keep telling him he has to eat and drink but he's just not getting enough.  I hate this, hate this, hate this!!!!  I'm suppose to be strong for him but seeing him like this is tearing me apart. 

Carrie

Hi Carrie,

Our stories sound very similar. My mom is battling PC too. We went in for the Whipple and it was also abandoned based on artery involvement. My mom is also taking FOLFIRINOX, and she is doing well. I'm sorry you are having the problems with your dad. Mom had issues with weight loss and diarrhea at first, but she is past that now. They say the first few treatments are the most difficult.

I'm so sorry you are going through this. My heart breaks for all families facing this horrible cancer. I just thank God every day for my mom's quality of life. We have been truly blessed. Try to focus on the positives each day, and just be thankful. It helps. I will be praying you and your father, Carrie. God Bless!

Hi Carrie,

My husband was diagnoised October 5, 2011 with stage 4 PC with liver mets. He has been having chemo since November 2011. As of today we are on treatment number 18. My husband had changed his eating habits and in the beginning had to force himself to eat. Right now he likes foods that have lots of spices or is hot. The more flavor the better he likes it. He has gained over half his weight back that he lost in the beginning.

I am so sorry that you are going through this. I hope that you will beable to find something that will work. I will be praying for you and your family.

Kerry

Dearest Carrie,

I have lived with a husband with similar symptoms in May and June. He was even sensitive to smells of food. We tried using Vicks Vaporub under his nosse to shield him from food smells. He also had no appetite because of constant nausea. PC is a ruthless disease and I know all too well what hell you are going through right now.  Be strong for him, by giving him hope in something larger than himself.  God Bless You and be with you during this struggle!

Sue

My Dad was also diagnosed with PC in March of this year after fainting at home in Jan. He went to ER where scans showed potential cancer. It took 2 more months for definite diagnosis. He's had biopsies, scans, and only 3 treatments of chemo during all this time. I am certainly not blaming his doctor. He has a good doctor and treatment facility, but there have been issues with dehydration, enlarged prostate, and nausea. I understand what you are saying this disease and all that comes with it is pure devastation.  I'm an only child and am close to my parents. It is hard on everyone involved. The doctor says he is stable, but I don't know how long he will be stable if he continues to not be able to have scheduled treatments. We are Christian people and have support of our church family, friends, and certainly God. I will keep your family in my prayers. We have to stay strong and continue to hope.

Thank you all for your kind words and prayers.  I admit to being a daddy's girl and this has all been such a shock.  A healthy man all of his life, he finally retires and now this....  But tonight I can report good news.  He is feeling better today-I could here it in his voice when I called to check in this morning.  He called me at work tonight to let me know he had eaten 2 cheeseburgers, a few cheesies and ice cream for supper!!!!!!  He said it still didn't taste great but he ate!!!  Was so thrilled to here the news.  I guess that is where we are right now, being thrilled with the small things to help keep the hope.  BlessedDaughter, I have never heard that the treatments get easier.  I thought if anything they would get harder.  That sentence alone made me breath a little easier tonite.  I hope that is the case with Dad.  Keeping you and your families in my thoughts and prayers.

Carrie

I wonder if he might benefit from marinol which are pills that may help appetite made from marijuana, though not sure if legal in all states, a friend with intestinal cancer had been given them.  I don't know if its the chemo or will improve once on it a while.  Try many small meals a day, avoid dairy, try alternatives like almond/rice/coconut milk products maybe soy.  He may or may not need enzymes with omeprazole, a stent, ....  I only know B6 and l-glutamine for neurologic effects and some trials using chinese herbs to avoid some side effects, maybe mushroom extract used in japan too.  Part of the problem is if a patient is motivated to take the treatment or hasn't willingness or the fight in them.  Pancreatic cancer can induce depression in some patients too.  Try small kid type vanilla and chocolate graham cookies like pepperidge farm or annies bunnies, those little cookies helped me (amongst other foods) gain weight during pancreatitis prior to whipple and after the surgery.  Think of relatively healthy foods that please finicky taste buds and maybe some will be palatable to him.  Look in health food section for cookies/crackers too.  Try different brands of yogurts, organic included and even coconut, soy or other nondairy.  I have learned to love almond and coconut frozen fake ice cream-like treats, soy too.  Good luck. 

On Jul 04, 2012 1:39 AM Canary92 wrote:

Thank you all for your kind words and prayers.  I admit to being a daddy's girl and this has all been such a shock.  A healthy man all of his life, he finally retires and now this....  But tonight I can report good news.  He is feeling better today-I could here it in his voice when I called to check in this morning.  He called me at work tonight to let me know he had eaten 2 cheeseburgers, a few cheesies and ice cream for supper!!!!!!  He said it still didn't taste great but he ate!!!  Was so thrilled to here the news.  I guess that is where we are right now, being thrilled with the small things to help keep the hope.  BlessedDaughter, I have never heard that the treatments get easier.  I thought if anything they would get harder.  That sentence alone made me breath a little easier tonite.  I hope that is the case with Dad.  Keeping you and your families in my thoughts and prayers.

Carrie

I was just wondering how your Dad is doing now?

Marinol is a great idea. If you don't live in a state that allows or it doesn't work, etc you can also try Megace. This is a med that is supposed to make the pt hungry and reduce smell induced nausea. I'm a Home Health nurse and have had many pt's respond very favorable. Also had some pts not respond at all so it's a gamble, also another idea. What worked for me was zofran in conjunction with low dose of ativan. Guess it's just finding the magic bullet. Your family will be in my prayers. Cal

Hi Carrie,

I am so sorry your Dad is having these horrible problems and hope he will soon be better.  I pray he will respond to the chemo and soon be able to have surgery.

When we are taking chemo, food just does not taste good in our mouth.  It is most important to keep him hydrated.  A drinking straw works miracles!  Try cold Ensure with protien, broths, juices, etc.; have him put the straw deep in his mouth and as he sucks on the straw and swallows, the liquid will go directly into his throat....not into his mouth.

I hope this will help your Dad and any others that have the problem of.

Keep a positive attitude, stay strong, have hope and faith for better days ahead.

Prayers and blessings,

B