Topic: Farmer Down, but not OUT!!!

My 60 yr old father was diagnosed with CC in Nov 2012. 
Brief History:
He is a farmer in MN, and if anyone knows farmers, they DO NOT take time out to go to the dr.  He had been having some upper abdomen pain and AFTER harvest, he went in to the dr and they treated him for diverticulitis.  Pain would not go away and a CT Scan was ordered, only to find a LARGE mass smack dab in the center of his liver.  After more tests it was diagnosed as ICC, with mets to lymph node by the heart.  Not operable.  His doctor sent him to Abbott Northwestern – Virginia Piper Cancer Institute.  After meeting with oncologist there, he decided to start Chemo.  He is on the Gem/Cis regiment and seems to be handling it ok, quite tired all the time (except day after Chemo) and quite a bit of pain.  He had a CT scan on Jan. 8th and it showed the cancer is stable, which I guess is better than growing, so we will take it.  On Feb 1, we are going down to Mayo Clinic in Rochester to get a second opinion and HOPE that they have something else that will start to kick this in the butt!!!
This whole process has been heart wrenching and mind numbing at the same time!  We are a VERY close knit family and all live within 10 minutes of each other, being a farm family, there usually isn’t a weekend that someone isn’t hanging out at the farm!!  On top of the diagnosis, we have to also worry about the farm, my poor dad was blessed with 3 daughters and has always done the majority of the fieldwork.  My head is spinning, how will my mother make it, what will happen to the farm, how can we help when we all have full time jobs…YIKES!!!  I’m depressing myself all over again!!
Any wisdom or words of encouragement are most certainly welcome!

Re: Farmer Down, but not OUT!!!

Tammy….welcome to the site no one wants to belong to, but is happy to have found. Unfortunately, when cancer strikes – it affects the entire family.  Things have to be shuffled around, we are in unknown territory, and most importantly we have to make changes not ever anticipated.  In other words: our lives are upside down. 
The good though, is that we lean on each other and work together as a unit, as it appears to be in your family.  Your closeness puts you ahead of the game in that you are able to tap your resources (emotionally) and allow each family member to become a pillar of strength. 
Your Dad is responding favorably to the treatment; your decision of obtaining a second opinion is the perfect way to go.  Good luck with the appointment.  Is your Dad receiving pain medication and how is he fairing with it?  The balance of lucidity and functionality is difficult to obtain, but it can be done.  Often times pain medications have to be tweaked a bit in order to find just the right doses. 
So glad you have found us, Tammy.  I am sure that others will be around real soon to greet you.  We are in this together – all the way.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Farmer Down, but not OUT!!!

Hi tammy, like you I am new to all this after my sister was diagnosed in October with a Klatskins tumour that is inoperable.  She's waiting for chemo but not well enough yet.  There is so much support on here - you've come to the right place.  As a family we are taking it one day at a time and discovering that we all have very different roles to play in supporting my sister and her young family.

Good luck at the second clinic - I've got everything crossed for your dad.

Clare

In the stars now . . . .

Re: Farmer Down, but not OUT!!!

Tammy, Welcome and sorry you had to find us. I am a CC survivor, 3 years and 6 months cancer free. There is HOPE! I have an amazing story to share,  please read it at www.catherinedunnagan.com.
I know how everything feels out of control right now, but you will gain a little control and "one day at a time" will be your mantra!! You are right to head to the Mayo Clinic they are very educated in our cancer.
Lots of prayers and HOPE-Cathy

Re: Farmer Down, but not OUT!!!

Hi Tammy,

I would just like to welcome you to this site. I'm sorry to hear your Dad was diagnosed with this rotten cancer. It is a tough road. My daughter, Lauren is the one with cancer and she is only 26. It seems as you are doing everything right. You feel there might be someone or something better for your Dad. A second opinion is great. We are lucky in that we are very happy with Lauren's care where she has been from the beginning. If we had not been, we definitely would have looked into somewhere else. It also helps to have a loving family offering support. I hope everything works out with regards to the farm and your Dad's medical care. I know it is so difficult to deal with things, but try to keep a positive attitude and hope in your heart. All the best.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Farmer Down, but not OUT!!!

Tammy, I am so glad you found us as we will all try to help you in any way we can. I am amazed at your resourcefulness already. A second (and sometimes 3rd and 4th) opinion is good - - pretty soon you are going to find yourself really educated about a cancer you never knew existed! I can now talk liver anatomy like a medical student, funny thing! So on the medical front, the fact that your Dad's tumor is stable on chemo is good news - - often these darn things keep growing. So since his tumor is chemo-sensitive (and there are other chemo cocktails to try but gem/cis is the frontline one) you have that in your toolbox. Try to think of this cancer as a chronic disease, with various things docs can throw at it. One definite good thing is your Dad's age and over all good health and physical strength. That's going to be very helpful and important in his fight. One book I was given (I am 55 with ICC initially not operable but after good response to chemo, going to surgery this week. It won't get every cancer cell, but it will take out my big tumor and then we will "clean up," according to my oncologist) is by Jeremy Geffen, called "The Journey Through Cancer," and I highly, strongly encourage you to grab a copy. Geffen is an oncologist who has spent his life in tradtitional cancer treatment but has also spent a great deal of time studying eastern medicine and all the emotional aspects of cancer. You will have to beware in your family's journey not to be overwhelmed by the internet and the many false promises of alternative therapies. Geffen's book gently helps you wade through it all and also helps enormously with turning "fright" into "fight" and marshalling the emotional resilience for the long haul with this cancer. Please know that we are all of us on these discussion boards pulling for your Dad, you, and your lovely closeknit family! One last thing is to be sure to file for social security disability. Don't wait. Every little bit helps, and with cancer, you can't be worrying all the time about the farm, too. So keep us posted on everything, ok? We'll be waiting here for you!

Re: Farmer Down, but not OUT!!!

Dear Tammy, welcome to our amazing family but sorry you had to find us. I know that when you first hear this disgnosis it's like getting hit with a bat to your stomach. Who ever heard of this? But the greatest thing is that you have a close family surrounding your Dad with lots of love. The next best thing is that you are taking him to Mayo, that is a big and a good step. Unfortunately you cannot worry about the farm. One thing at a time, one day at a time. Please keep us informed as to how things progress as we truly do care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Farmer Down, but not OUT!!!

Thank you everyone for the wonderful words of compassion and encouragement!  We are anxiously awaiting our appointment at Mayo and I will definitely post more after.

Re: Farmer Down, but not OUT!!!

Sorry I haven't posted any updates, but there is really nothing new. 

Our appt with Mayo went well.  The dr. said he couldn't understand why we were there?  He said that everything is working so why are you here?  I just told him that it was for our piece of mind and to make sure we were proceeding with the treatment that they would recommend. 

After we got that out of the way, he agreed with the treatment, however, he seems to think that my dad has primary liver cancer along with the cholangiocarcinoma, so, I'm not sure what that means.

He did say that depending on how his chemo progresses, he might be a candidate for embolization down the road.  At this point that is really the best we can hope for.

He has another scan in 2 weeks so we should know more at that point.  Hoping this time that the tumor has shrunk some.

Re: Farmer Down, but not OUT!!!

Hi Tammy,

I hope you feel better since getting the 2nd opinion. Sounds like you are doing everything right. Don't get too wrapped up and worried about shrinkage. It is awesome, but stable is good too. It means the chemo is keeping the tumor from growing!! I hope to continue to hear good things about your Dad. Take care.

Hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Farmer Down, but not OUT!!!

Tammy...appears that you had a good visit.  Also wanted to mention that    combined HCC-CC (hepatocellular and Cholangiocarcinoma)is a rare subtype of Hepatocellular Carcinoma. 
Fingers crossed for a great scan.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER