Dear Mmking,

Please accept my sincere condolences on the passing of your mom.  You were a very supportive daughter and your mom was very lucky to have you as her advocate.  She is at peace now and in a much better place.  I hope she runs into my husband John who died on July 8th.  I'm sure he would like a good cookie.   Hugs,  PeggyP

Hi Pam,

Sorry to hear that Lauren is not tolerating the Xeloda very well.  When John was on Xeloda, he stayed very tired and also had the hand and foot syndrome.  His feet blistered so badly that he couldn't stand to put his feet on the floor because of the pain.  Hopefully, this will not be the case with Lauren.     She has done so well and I pray that she will continue to improve and keep fighting this cancer's butt.   Love,  PeggyP

Dear Kathy,

Congratulations on your good scans; I hope they continue for a long, long time.  Hugs,  PeggyP

Dear Phil,

I am so sorry to hear of the passing of your dear husband Gerry.  I lost my wonderful husband John on July 8th to this terrible disease.  He, also, was like a skeleton when he died.  He had lost over 55 pounds in about a month and a half.   John had fought a four year battle and had a chemoembolization done on April 17th that he never recovered from.  Everything just seemed to spiral out of control but I was able to keep him at home with the help of my dear sister from North Carolina who came to offer her support.  I still feel like I'm numb but I have to stay strong for the kids.  Your boys will keep you so busy that you will not have a lot of spare time to think about things.  I will pray for you and your family as I well know what you are going through right now.  Be strong for Gerry and remember that he is now at peace and will not have to suffer anymore.  Lots of hugs,  PeggyP

Hi Eli,

I am so sorry to hear about your mom.  It's enough dealing with your wife's illness, then to have this happen.  You appear to be a very strong person so I have complete faith that you will know how to handle this situation, too.  I know when John was first diagnosed my dad had been diagnosed with a very aggressive melanoma.  My mom also had alzheimers and was in a nursing home, so sometimes we don't have a choice but to accept what is and take one day at a time.   I will keep you and your family in my prayers and hope that the scans will bring better news.  Hugs,  PeggyP

6

(11 replies, posted in Introductions!)

Dear Dcmac,

I, also, know your pain; my husband just died on July 8th.  He fought this terrible disease for four years.  I still feel kind of numb; like in a dream that I don't want to wake up from.  I know I have to be strong for the kids and put on a happy face, but it's not easy.  We were together for 38 years and he was a wonderful husband as well as my best friend.  I know one day it's going to hit me hard and I hope I will be able to handle it when it does.  Just keep taking one day at a time and remember the good times you had with each other.  Sending hugs your way,  PeggyP

7

(15 replies, posted in In Remembrance)

Thanks everyone for your kind words and condolences.  John will be greatly missed.  I will try to post web site where his obit can be read.  I had requested donations be made to the Cholangiocarcinoma Foundation.

http://www.coffmanfuneralhome.net/sitem … ffenberger


If this works, thanks Eli.

It is with great sorrow that I am writing this post.  My husband, John E. Puffenberger, lost his 4-year battle with ICC on July 8.  He had fought a good fight but the chemoembolization he had on April 17, 2012 led to his death.  He never recovered from it and lost his appetite and 50 plus pounds and was too weak and tired to continue his fight.  We had a bad experience with Hospice the day he died, and I don't think I will ever get over the way he had to leave us.  It was anything but peaceful.  His oncologist called this morning and I relayed the info to him and he said I am the second person in the last six months that has had a similar experience.   He did say that John was an amazing man that overcame the odds and it was an honor and a privilege to be his doctor.   I lost my husband but I also lost my best friend; we had been together for over 38 years.  I will love him forever and always keep him in my heart.  To those of you still fighting, keep on fighting until the end, and maybe one day this terrible disease will be beaten.   Rest well my love until we meet again,  PeggyP

9

(18 replies, posted in Introductions!)

Dear ForMyDad,

Sorry to hear about your dad but sounds like you have the right attitude.  My husband was diagnosed Stage IV ICC almost 4 years ago.  He has fought a good fight and was doing very well until he had a second chemoembolization in April.  It has been downhill ever since.  He is very ill now and very weak since losing 41 pounds in about a month.  I still hope that we can get things turned around so he can continue to fight this terrible disease.   John used to get  hiccups a lot when he was first diagnosed.  His first chemo regimen sounds similar to your dad's.  He would get chemo at the cancer center and then be hooked up to a pump for 48 hours.  Sometimes his counts would drop too low so he might have to wait another week before getting it again.  I hope your dad does well with his treatment and that your brothers will come around and be strong for him, too.  Sending prayers and well wishes your way,  PeggyP

10

(8 replies, posted in Introductions!)

Hi Kendra,

Welcome to the CC family; sorry to hear about your boyfriend but I hope he gets the help he needs.  Sounds like he's headed in the right direction.  Just hang in there and stay strong for him because attitude does play a very important role in fighting this disease.  Sending lots of hugs and well wishes your way,  PeggyP

11

(7 replies, posted in In Remembrance)

Hi,

Your dad was lucky to have such a caring daughter; he is at peace now and will suffer no more.  I, too, was at my dad's side when he passed away a year and a half ago.  So, I know what you mean when you say you were blessed to be there.  My husband continues to fight this awful disease but he is very ill.  I pray that your family will find peace and comfort knowing that your dad is in a better place.  Sending lots of hugs your way,  PeggyP

12

(7 replies, posted in Grief Management)

Janet,

I am so sorry to hear about your husband's passing.  I am sending my condolences to you and your family.  I know this must be a trying time for you; yet, you are able to post this lovely message.  My husband is also very ill with this terrible disease; he has lost 41 pounds in the last month.  I continue to pray that he will somehow get better, but he continues to get weaker and weaker.  Sending lots of hugs your way,  PeggyP

Hi Maria,

What a great run you had!  Congratulations for being able to go the distance with such a great time.  Sorry to hear about your MRI results but I know you will keep that fighting spirit and kill those tumors.  John has continued to lose ground since his 2nd chemoembolization in April.  I still hold out hope that we can get things turned around.  Wishing you well,  PeggyP

14

(55 replies, posted in General Discussion)

Hi Jose,
I am sorry to hear about your sister but was wondering if anyone had mentioned anything about her calcium level.  My husband has not been doing well since having a chemoembolization in April.  He lost 34 pounds in three weeks, has been very confused, hallucinating, agitated, not sleeping but no energy to do anything but stay in bed.  I took him to the doctor on Wednesday for a checkup and told the NP that I was discontinuing the pain patch they started him on two weeks ago because he was getting worse than better.  She said she would call me with his bloodwork results yesterday.  She said that his calcium level was very high and could be causing the lethargic state he was experiencing.  Today, I took him for an infusion to bring his level down.  She referred to this as hypercalcemia.  Just a thought but maybe something like this is happening with your sister.  Take care,  PeggyP

15

(82 replies, posted in General Discussion)

Hi Grover,

Glad to hear that you're doing fine after jumping all the hurdles along the way.  Clean scans are great news!!  Keep them coming.  Hugs.  PeggyP

16

(16 replies, posted in In Remembrance)

I am so sorry to hear about Jim's passing.   He offered so much to this site--his compassion for others with this terrible disease and his thoughtful and kind words.  He will be  greatly missed.  My heartfelt condolences to Jim's family.  May you rest in peace sweet Jim.  PeggyP

Hi Maria,

I am so glad you are doing well.  Go, girl, and keep training and running.  Good luck in the Stockholm marathon.  I can't believe you have just had your 6th chemoembolization and still able to compete as you do.  John had his 2nd one on April 17 and things have gone down hill since then.  He has been terribly ill and had to spend a week in the hospital two weeks ago.  He has lost about 22 lbs. in the last week and is very weak and can't tolerate food that much.  I have tried some of Lainy's suggestions that she used for Teddy and some of the other ideas I have seen on this site, so I'm hoping that things will start to turn around.   He did manage to get up for a few hours yesterday and today, and his eyes seem more alert.  The doctors seem to think that some of the chemo beads got into his blood vessels and arteries, which made him so sick and in excruciating pain.  They also had him on so much pain meds that everything was working against him.   I take him back to his oncologist tomorrow and then he has an MRI at UVA on Thursday.     Just keep doing what you're doing because it seems to work for you.  Best wishes,  PeggyP

18

(10 replies, posted in Introductions!)

Hi THennesy,

Welcome to this site and I hope your brother continues to tolerate his chemo.  We went to Georgetown in October to see if my husband would qualify for a clinical trial.  We met with Dr. Jimmy Hwang.  We liked him very much and he was honest with my husband and said there were no trials that he could be considered for at that time because the chemo he was on had damaged his kidney function.  My husband was diagnosed almost four years ago with Stage IV ICC.   He has fought very hard and has kept a positive attitude most of the time.  I truly believe that attitude plays a big part in fighting this cancer.  Tell your brother to stay strong and fight with everything he's got and to never give up hope.  One day this cancer will be defeated; hopefully, sooner than later.  Hang in there and continue to support your sister and brother.  I will say a prayer for each of you,  PeggyP

Dear Shlamoney,

My husband's prognosis was 7 months.  He has Stage IV ICC.  His first symptom was a dull pain in his right side.  In July, it will be 4 years.  So don't put a timeline  on your life.  Take one day at a time and set goals and do things that you can while you can.  John has had some side effects from the different chemos he's been on, but his biggest complaint has been fatigue and stomach pain.   He still makes himself do as much as he can each day, and he knows when to quit.  He rests more during the day while the kids are at school so he can be up when they get home.   Prayer is a powerful thing and I'm sure that has helped John as well.  Stay positive and seek other opinions and research as much as you can.  God bless you and your family.  PeggyP

20

(13 replies, posted in Good News / What's Working)

GREAT NEWS Eli!!!

I know you and Marina are ecstatic.  Thanks for sharing this with us.  Here's to many more clean scans.   PeggyP

Nancy,

What great news!!  That's what we like to hear.  I hope you and Ron have a big celebration.  I live in Staunton, VA so I'm not too far from you.  My husband, John, has Stage IV ICC and is coming up on four years in July.  Sending tons of hugs your way,  PeggyP

Hi Amy,

Welcome to the CC family.  My husband was diagnosed Stage IV ICC in August '08.   He had a resection where they removed over 70 percent of his liver, gallbladder, right kidney, part of colon and part of his stomach cavity.  In March '09, he presented with multiple tumors in the part of liver that had been left.  He has been treated with Folfox, Gem/Cis and Xeloda.  He was also taking Avastin.   They did a trial run to see if he would be a candidate for radioembolization, but there was too much leakage into his stomach cavity.  He did have a chemoembolization the end of February and is scheduled for another one next week.   I think this has taken more out of him than his original resection.  He is very weak, stomach aches like crazy, and he has very little appetite.   I try to remain positive and hope that he responds better to the next one.   I can't imagine having five kids and having to do all that you do for your husband.  We have two kids at home (14 and 9) who are very active in sports.   I feel like I am running from one place to the other all the time.   I took Kaden to the doctor this morning as he is having some pain in his pitching arm.   He fell while playing basketball and hurt same arm.   The doctor said that he should not pitch as much or throw as hard because he could damage this arm for life.  He's only 9 and has a game tomorrow night.  I'm sure his coaches will love hearing this.   I just bought John some Boost drinks today.  He drank one and said that it wasn't bad.  I hope he gets his appetite back soon as he, too, has lost some weight.  I will keep you and your family in my prayers and hope that your husband will get better each day.   Hugs,  PeggyP





Derin,

You and John have something in common; his birthday is April 25th, too.

23

(8 replies, posted in Chemotherapy)

Hi Summergirl,

Sounds like a good report on your mom.   My husband's first chemo was Folfox and he had a significant response with it.  He had 18 cycles before he had an adverse reaction to the oxaliplatin.  Hope your mom responds to it well and that she has shrinkage on her next scans.  Hugs,  PeggyP

24

(6 replies, posted in General Discussion)

Hi Sti,

Moira seems to be a strong woman, battling this terrible disease with all her strength.  I know my husband stays cold most of the time.  Just as the others have said,  I think it's either from the cancer itself or the chemo.  John keeps a throw with him all the time so he can cover up when he feels too chilled.  You are so right when you say CC is so unfair--it seems to affect the nicest people.  I hope Moira continues her fight and that you can make many more memories.  Hugs,  PeggyP

25

(26 replies, posted in Introductions!)

Les,

I am so sorry to hear that Sarah has passed.  You have my heartfelt sympathy and prayers for you and your family.   I know Sarah is at peace now so be comforted by that until you and Sarah are reunited for eternity.  God bless,  PeggyP