1

(7 replies, posted in In Remembrance)

I dreaded the day I would have to create this post.


My father lost the fight to CC. He was diagnosed May 5, 2012 and had been a soldier.  He tried two different clinical trials ( over 18 rounds of chemo).  Nothing worked. He was offered another but in the side effects section it discussed HORRIBLE possibilities of what may come of his body for only a 10% success rate.   It was a difficult decision not to be part of the clinical trial because he thought he was giving up. 

He wasn't.  He fought SO hard.  He lost over 100 pounds from his 6'3" 265 lbs. frame.  My dad became so weak he fell, hit his head and had to have 3 stitches.  He had two deadly blood clots at the beginning of his fight which caused him to have to administer a shot to himself every night.  My father was such an amazing man. He was strong, tough, funny, dedicated to his family, jobs, and my mother.   

We went home to visit him for Christmas.  It was the last time I saw him awake and lucid.  We all sat down and had a conversation about why he wasn't participating in the clinical trial  and what he wanted for his death arrangements.  It was the saddest moment of my life.  He was dying and there was nothing I could do.  He seemed so sad, so depressed and so helpless but tried to stay strong for us.  He told us how wonderful we were as his daughters and that we made him so proud.  He told us to continue to be who we are and always fight (like he did).  We all cried.  Hugging him for the the last time and saying my last goodbye was the most difficult thing I have ever had to do.  I can still feel his hug, his bones sticking out from the nasty CC and hear his voice telling me, "I'm sorry I have to leave you so early."

He entered hospice because he was becoming so weak and didn't want to die at home.  While at hospice he was comfortable.  Some days he didn't understand why he was there and others he was content with it. He entered into a coma on the night of the 11th.  My mom held the phone up to his ear so I could tell him I love him and that he could go.  He could stop fighting.  On February 13, 2013 at 4 p.m. he went to heaven.

I'm so angry. So sad. He was young, perfectly healthy and had many years in front of him.  I hated seeing my dad, the warrior, fall down at the feet of this disease.  It didn't matter how hard he fought, it fought harder.  He was so strong and tough.  Even on the worst days he would tell me he was ok.

I want my daughter to know him.  She loved her Papa so much.  My daughter is only two but all she asks for is Papa.  It breaks my heart.  He was such an amazing man. 

My family has lost such a great man.  I worry for my mom.  Last year at this time we were planning a trip to Florida to see them (they're snowbirds) for their 40th wedding anniversary and this year we are planning to attend his funeral.  She's strong but she has lost her husband, soul mate, life-time best friend and all the other things he was to her.  It makes my heart hurt.

My husband, daughter and I will travel home this week for his memorial service.  He didn't want a funeral.  After, there will be a party, just like my dad wanted it.  He wanted food and beer.    Gosh, I wish he was going to be there. 

God Bless you all in this fight. 

Suzy

Wonderful!  Wonderful!  Thanks for the positive post!  I need this today.  Enjoy every moment.  You showed CC where to go and how to get there!  Happy day!!!!!!


Praying,

Suzy

My dad just got his scan results back about an hour ago and the tumors are shrinking inside liver but not out.  He is off the clinical trial at U of M because of the lack of shrinkage on outside tumors.    The next option is Folfox with a 30% success rate or two phase one trials with a 5% success rate. 

My suggestion is for us to seek treatment elsewhere.  I want to go to MD Andersen.  What do I do? What don't I do?  Where do I begin?  Any info would be appreciated. 

Hurting and Praying,

Suzy

4

(15 replies, posted in Introductions!)

Dear tlcassara,


I am sorry you have joined us but you came to the right place.  My father (65) was diagnosed back in May and it felt like someone took my heart out and cut it into pieces.  He didn't show any signs either, other than loss of appetite and an episode of extreme gas.  It is in his liver too.  He was stage four when first diagnosed.

Now he is doing so well.  He will finish his 8th round of chemo and we know due to last scan thinks have shrunk.  Please don't take it as a death sentence as I did.  There is hope.  We don't know the outcome but every day we are thankful he is here and staying positive (SO IMPORTANT).  Chemo hasn't been the greatest (of course, because it is a change in their daily lives) but he deals.  He is actually going hunting this weekend with my brothers and friends.  He can't shoot because of his port but he feels good enough to go along for the ride.  WE ARE SO HAPPY FOR THAT!!!

I know you need time to allow it to sink in but stay with us and ask away.  This place is full of info and great people.  Allow us to support you and answer any questions we can (not me though, I just try to give support, understanding and positive updates).  I ask a lot of questions.

If I can be of any help, let me know.  Take it one day at a time.  God bless you and your children. 

Praying,

Suzy

5

(7 replies, posted in General Discussion)

Thanks all!  This place is filled with so much information.  I copy and pasted the information in an email to my mom. 

@Notdoneyet- Hilarious!  It fit so perfect in that spot considering our topic!  No harm done. 

I appreciate all of your input.  Thank you so much for your time, input and concern.  I hope everyone has a great Wednesday!

Praying,

Suzy

6

(7 replies, posted in General Discussion)

Not the best topic to discuss but my dad has been really struggling with a lot of gas.  This symptom typically happens 3 days after his chemo session.    He takes GasX and Ducolax (sp) but still is constipated and full of gas.  He did have an Xray in order to rule out a blockage and everything came back fine.  He has also tried wheat grass to get things moving but that just gave him more gas... :-((.  Any suggestions?  Thanks.  Have a great Tuesday!

YES!!!!!  So happy to hear.  I've been thinking of you guys.  We traveled back to MI in August to spend time with family.  I went with my dad and mom to U of M for one of his chemo days.  He had an appointment with the doctor first that I sat in on but left in tears.  It was too real.  I needed to experience that though. 

Things are good now.  Dad is feeling well and has his 8th round of chemo in beginning of Oct.  Dr. F. is happy with the results thus far. His current doctor is leaving in 6 weeks so his new doctor will be Mark M. Zalupski.  Since our visit we have decided we are moving back home. 


It's great about Lauren.  She is such a strong lady. She has a wonderful mom too.  Stay strong.  We'll be praying.

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(2 replies, posted in General Discussion)

It's been awhile because I started back to work (teacher).  The beginning of the year is CRAZY.  I'm here to give a very positive update on my father.  He was diagnosed in May 2012 (stage 4).  He finished his 8th round of chemo on Thursday.  Although chemo hasn't been pleasant for him, it wasn't horrible like other stories I have heard.   

His doctor is extremely pleased.  My father's liver function is normal, blood normal and even gained weight.  According to the scan back in August the cancer was reacting to the chemo.  He will be scanned on Oct. 4th and then the doctor will decide the next steps.  My dad was in a clinical trial at the U of M which ends in November.  IF the chemo shows no change since last scan he will no longer be able to be part of the clinical trial. 


We (siblings) have been looking at other options.  I have advised my mother to be sure she has EVERY test, scan, blood work and any other file of my father's ready to go if we decide to seek another hospital, tops on our list, MD Anderson.   She is in the process of gathering those records. 

I know this cancer is nasty but I am happy with these results.  It has been a much more positive (if positive is even the appropriate term) journey than expected.  I post this because we must hear positive journeys about this cancer.  I HATE it, but for now, my dad is killing it! 


PS- My daughter (2) and I pray for all of those sick with this cancer and any other ailments every night.  Stay strong!!!

God Bless,

Suzy

9

(8 replies, posted in General Discussion)

Is it your thyroid? I have Hashimoto's and Hypothyroidism.  I was/am always cold, more so off my thyroid med.  It could very well be the chemo but speaking from experience my chills come from one small gland not working.   I hope you find warmth.

:-))
Suzy

10

(17 replies, posted in Introductions!)

Great post Joanna!  I appreciate your story.  My father was diagnosed in May.  He is currently in a clinical trial at U of M.  As of last scan cancer has reacted to chemo!  YAY!  We are in the process of getting other "plans" in place.  We're not giving up and will fight this disease with all of our might.  I shared your story with my siblings.  Thank you again for your positive and touching story.  Praying for you!

:-))
Suzy

Shel,

My father (65 and healthy) is also seen at U of M.  He was diagnosed in May 2012 and receives chemo every two weeks.  As of now his cancer is reacting to the chemo (yesterday was his 6th session).  We were told at his last appointment that he can't be on chemo forever.  After hearing that statement my siblings and I are getting a plan in place for him to be seen at another (bigger) facility where specialists available to work with us.  Please use the lists Gavin has shared.  They hold important information. 

I understand it's overwhelming and frustrating.  I'm still mad.  It doesn't make sense and is very unfair.  Please know that this is a great place to share, release and gain info.  Take care of yourself and keep your head up!

:-)
Suzy

12

(21 replies, posted in General Discussion)

My father's chemo lasts up to almost 6 hours.  The first hour or so is anti nausea medication and the rest is the actual chemo. They also see the doctor prior to chemo. When they travel to U of M for treatment it is an all day ordeal, 9am to almost 8/9pm.  Keep in mind, my parents live almost 2 hours (4 hours are travel time) away from the facility where treatment is held. Hope this helps.

13

(18 replies, posted in Introductions!)

Hi all,

It's been awhile since I posted...needed a break, coming here often makes me too emotional.  My dad had his third chemo treatment last week and is doing well.  Dr. Fakih says liver is regressing,  billrubin levels are down and blood work is good.  He will go for his fourth treatment on Thursday then a scan to come in the next few weeks.  My dad does okay with the chemo, kinda slow and tired but no nausea or other side effects :-)).

He did end up in the hospital with a blood clot in his lung and is now on a blood thinner and will be for the rest of his life.  He gives himself injections at home.  He was in the hospital for 3 days. 

My daughter and I will be traveling home at the beginning of August for 2 weeks to spend time with my family.  My husband will come on the last leg of our trip and spend a week with us.  We plan on attending a chemo session with my mom and dad at U of M then going out to dinner after.   Things seem to going okay.  It's just a waiting game and than what???  I just keep praying.

Strange for a procedure to begin at 9:40 in the evening...random. Hoping and praying for the best!

Suzy

Pam,

So sorry to hear your news.  I will be praying for the both of you.  Stay strong and positive. 

Suzy

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(18 replies, posted in Introductions!)

Pam,

Glad to hear Lauren likes to eat.  No worries about closing the curtain, it makes sense.  I hope that maybe one day you could meet my parents.  I sent your story about Lauren to my entire family and it seemed to uplift them.  Thanks so much.  If their schedule changes I will let you know.  God bless, and I will be praying!

PS- My parents names are Dennis and Sidni!  Talk soon!

17

(18 replies, posted in Introductions!)

Mmking,

It does suck!  I agree we are lucky to have these experts here because I would be lost and sad without them.  It is so difficult living far away and getting the filtered information.  I just want to know and I want to know everything.  Regardless if it is bad or good, tell me.  I understand where my brothers are coming from because they are "in it".  They have gone to doctor visits with my mom and dad so they hear the news straight from the doctor, perception is reality.  I am planning a trip home this summer in August...hopefully.    Good luck and to you and yours!  God Bless!

What a crazy cancer!  How is your husband doing?  Great they could remove the tumor.

19

(1 replies, posted in General Discussion)

Now, that my father has been diagnosed, does anyone know what his children should look out for?

I know. After all the conversations and reading it seems that makes the most sense.  I continue to get more information from my mom daily.  I'm kinda putting all the pieces together.  I appreciate your input! :-))

21

(18 replies, posted in Introductions!)

Wow!  25? God bless her.  I spoke with my mom this evening and told her I had met you on here.  She couldn't believe how young your daughter is.  How unfair?  I'm so happy to hear the approach you have taken toward this nasty cancer.  I did go to the blog you have set up for this fight.  It was nice to read about everything you are all doing.  Your daughter has a great support group. 

Some more info on my dad and his treatment.

He has liver and bile duct cancer.  The tissue of origin test came back from California and they still can't determine where it started?????  The drugs they are using in his trial are 5-Fluorouracil, Gemcitabine (sp), and Cisplatin (which you mentioned).  They have also found cancer on his 5th lumbar and on a rib (they're not concerned about it because it's not primary).  His doctor is Fakih Marwan.  Supposedly, the nurses are amazed at my father's blood levels and don't understand how he is sick with levels such as his????  I finally asked the question of the stage....ugh.  My mom said they didn't tell her a stage but she is assuming at least stage 3.  She also informed me that it is in the lymph-nodes surrounding the liver so after all my reading I would say it is stage 4.  But just like you and your family, we don't want to know (I kinda do, just the way I am).   

They're ready to fight it and reading stories like your daughter's is very uplifting.  I'm all about positive thinking and kicking butt!  My parents are at U of M for chemo next Thursday...if you happen to be there.   My dad is about 6'3" 265 (used to be) maybe 240 now and my mom is short in stature, red curly hair (short) and very friendly and talkative.  I know you mentioned your daughter likes to close the curtain but if you happen to feel like talking they'll be there.  I told her your name and your daughters (hope you don't mind), small world. 

I will keep your family in my prayers.  Thank you for all of the info.

Susan,

I am sorry we had to meet here but you will find support.  I'm not sure if you had gotten a second opinion but my father who was diagnosed with CC in May, started at Beaumont in MI and he is now at the U of M.  He has started a clinical trial and both he and my mom are very happy there.  If you google U of M clinical trials for bile duct cancer you will find information.  I will be happy to help you in any way I can.  Stay strong, and take minute by minute!

Ok. So, it is Intrahepatic CC.  Thanks.  This too helps me make sense of things.  Gosh.  I hate it.

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(18 replies, posted in Introductions!)

Hi Pam,

Nice to meet you!  I am sorry to hear about your daughter but it's almost been a year since diagnosis, that's great!  My parents seem really happy with U of M.  I'm glad you feel the same way.  It's difficult being far away and not hearing "all" the information they are given.  How was your daughter diagnosed, stage, and effects from chemo?  How many treatments has she had?  How do you feel about the clinical trial?  Thanks so much for answering questions, this is all so new!


PS-I'm sure I'll have more!

Thanks for the clarification!  I'm a visual person.  I better understand now.