1 (edited by stephylynn Wed, 14 Jan 2009 09:18:30)

Topic: Trying to keep hope

Hi my name is Stephanie. My mother starting having problems in July with nausea and jaundice. She had a scan and they found a blockage. She had the whipple surgery. They said the tumor was cancerous, but her lymph nodes were fine. She then had chemo and radiation for what we thought was a precautionary thing. She got her scans back 2 months ago and they were fine. Great!!! My mom will be back to normal in no time. She recently started getting sick again, so they put her on enzymes and did another scan. She came to my house on Friday night to tell me she got bad news, the cancer was back. Spots on her liver, colon, and ducts. How can this happen so fast???? There was nothing 2 months ago. We went yesterday and her insurance company would not cover the chemo they wanted to do, so she is on Nexavar. We had no idea what this cancer was even called. When I came home and looked it up I was SHOCKED. When we asked how long she would have to be on this pill, he said hopefullly for the rest of your life. I came home feeling hope, now I dont know what to think. I'm scared, my mom is only 55.

Re: Trying to keep hope

Hi Stephanie. We are so very sorry you had to join our elite little club that no one wishes to join. My husband had a Whipple 3 years ago and the cancer returned last April where the duodenum used to be. We are lucky, he had radiation last summer and just finished cyber knife and he is cancer free again.
The only thing we know for sure about CC is that it affects everyone differently and that we really do not know much. With that in mind your feelings are perfectly normal. We always suggest getting another opinion. Read up as much as you can and especially in our search site there is valuable information. Its a lot for anyone to take in but all of a sudden when you feel informed and secure with the doctors your strength comes through and you become a real fighter against this disease. Do not know where you are located but please let us know as I am sure someone could be from your area and advise you of a place to turn to if you want a second opinion. Please keep us posted.

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: Trying to keep hope

Wow. Thank you for writing back so fast. We are from South Bend, Indiana (Notre Dame). We have been told that we have a great oncologist. Dr. Ansari. My mom is at peace with his decisions. She had colon cancer at 30 and feels she got her second chance then and that maybe now it is someone elses turn. I know she is in a lot more pain than she is telling me. At this time she doesnt feel she needs to get a second opinion. They want her to take the pills for 2 months and then check to see if theres been any change. She said she will go from there. I need to get my mind right again so I can keep the hope that this will help.

Re: Trying to keep hope

Hi Stephanie,

Sorry you've had to join this club.  You are wonderful for being there for your Mom.  One thing that stands out in your post is the issue of her having pain.  You need to address this with her doctor.  There are things that can be done and she doesn't need her strength being sapped by being in pain. 

This is a wonderful site for information with some of the most helpful and compassionate people on the planet.  You are in good company and I wish you the best.

We are all here for you and your family!

Hugs to you,

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Trying to keep hope

Hi Stephanie - We all understand how crazy and scary this thing can be. I'm only 29 and have no idea if I'll live to see 40. I have been reading Patrick Quillin's book "Beating Cancer with Nutrition" - some other members of the site have recommended it too. Whether it will help or not remains to be seen, but the book helps me to remain positive and optimistic and makes me feel like there is something I can do every day to try and help myself.

I've heard that Northwestern in Chicago is very strong in treating this disease.

Re: Trying to keep hope

Hi Stephanie,

Yes, this cancer has no shame and will pull the rug out from under you but I think now is not the time to throw in the towel, we have to fight fire with fire. Your mom is pretty young so I think she has that on her side, what is her current condition--mobility, appetite, energy level?

Patty

Re: Trying to keep hope

Stephanie...I also would like to welcome you.  On this board we have seen several members with CC/bile duct cancer following a previous bout with colon cancer.  I am wondering about the connection.  Wish someone could answer this for us.  You have mentioned that the insurance company rejected a requested chemotherapy.  Which one was that? 
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: Trying to keep hope

Thank you, everyone. The doctor said she is in stage 4 advanced. She is going in next week to have a stent put in because she is so sick right now. She can hardly eat anything without severe pain and then getting sick. She is currently getting more jaundiced. We are hoping that this will relieve these symptoms so she can concentrate on taking her pills and hopefully just dealing with those side effects. After reading more on this site, I feel better. Definately not ready to throw in the towel.

Re: Trying to keep hope

Hi Stephy,

I am so sorry to hear of your mom's diagnosis.  It is so shocking and scary.  I know what you are going through - my mom also has this disease.  She was diagnosed in December 2007 and we were completely blindsided.  She was 59 at diagnosis (a week from her 60th birthday) and in what we thought perfect health.  Stay strong and search everyday for grace - it's there.   The people on this board are so wonderful.  Stay connected and informed. 

Many blessings,
Annie

Re: Trying to keep hope

Again, thank you to all that wrote. I knew there were great people around, but I never expected to here from you so soon. What I am realizing is that I know absolutely nothing about cancer. I have read other peoples posts and I have no clue what they are talking about. I do not know what kind of chemo they wanted to give to my mom, I just know that it was for colon cancer. And since she doesnt officially have colon cancer they wont do it. My mom is going in for her stent tom. and when I called her she didnt want to tell me because she said I need to be home with my kids. I know this is a mom thing because we always try to put others before ourself. I think this is my time to become the mom in charge and take care of her. I didnt think it would ever be this hard though. I am learning a lot from you guys, and I know I need to be the one to ask the hard questions. I am not a religious person and I almost feel guilty for asking for GODS help.  But, I am, almost every waking moment.  Thank you again. I dont know how much time I will be able to devote to talking on here. My mission now, knowing how bad this cancer is, is spending time with my mom. Having her, let me, help her.

Re: Trying to keep hope

Hi Stephanie,

Welcome to the site. I am so glad you have found it. Everyone here is so helpful, supportive & comforting. You have found the best place to be as you travel this road you don't want to be on. The people here are great and will be here for you when you need them for knowledge, support & comfort.

You are right on track to spend as much time with your Mom as you can & to let her know that you are there for her.

I will be thinking of you & your Mom & hoping for the best.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Trying to keep hope

Stpehanie.....I have a few questions.  Has your Mom's cancer been identified as bile/duct cancer?   I took note of one comment made by a physician in re: to Nexavar. She mentioned that Nexavar only works with primary liver tumors and in your Mom's case, the way you are describing it, I understand that we are talking about mestastses to the liver. 5-FU (for example)  has been used, for many years, to treat cholangiocarcinoma.  Within the last few years other agents have been added therefore, I am perplexed by the denial of the insuranance company.
Please, stay in touch
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

13 (edited by stephylynn Fri, 16 Jan 2009 10:15:22)

Re: Trying to keep hope

Thanks Marion.
We had the doctor write down the name of her cancer, and she wrote down 2 things. Hepatobiliary adenocarcinoma and cholagiocarcinoma. Not sure what that means. If they are the same thing. I am going to call the doctor today and ask what the chemo was they at first wanted to give her. She went in for her stent and it is a 4 step process. All went as well as possible. She is in a lot of pain as she is having spasms, which is under control with pain medicine. Thanks.. Steph

Re: Trying to keep hope

Hi Steph. I was re-reading the posts here and I just want to say one thing...for you.  It does not matter if you are religious or not. Its what in your heart that counts.  God does not judge or keep score. He does not give a time table so ask him for strength and there is no time like the present to start believing.

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.

15 (edited by marions Tue, 10 Feb 2009 09:47:12)

Re: Trying to keep hope

Steph....Glad your Mom had the stent.   Hope the spasms have been controlled also.  Your latest posting explains the use of the Nexava.I would love to know a bit more why the physician had choosen this particular therapy.  Stay strong and don't keep up the hope for your Mom to be feeling much better than she has so far.
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: Trying to keep hope

Stephanie,

I meant to weigh in on the God thing as well. You said you almost feel guilty asking for help from God and I am also not the most religious person but I was thinking maybe God looks kindly on those who don't bother him about the little stuff. I mean, look around, God is kinda busy right now. Since cc is pretty big stuff, I think it's ok to ask for some help and I'll start pestering him (or her), too.

Patty

Re: Trying to keep hope

Stephanie;

After reading the posts to your original thread, it's easy to see that all responders are concerned for you and your Mother!  As am I.....

One particular item caught my attention in that your Mother has recently had stints to reduce "blockage" and is in pain.  One particular treatment of consideration that's worth discussing with your Mother's physicians is the usage of PDT (Photo Dynamic Therapy).

I don't have the link handy at the moment, but if you browse my introduction from yesterday you will find a link of PDT, to which our family recently learned about in usage with stints to not only stop the progression of CC but control the pain as well.

It is a procedure I recently discussed with our doctors and all are in agreement we will utilize when my fathers no longer able to tolerate the Gemzar he's receiving or the cancer regains momentum.

I am truly sorry to learn about your Mother's situation and recall others similiar to hers where the cancer returned and/or spread from unknown sites.

I also agree it's important to maintain an aggressive approach as well, with all considerations towards your Mother and what her wishes are going forward.

The concept of "Faith" is important too.....and will pray for you and your Mother, as I do of others.

I can certainly appreciate your efforts in doing what you can for your Mother, just remember to not forget about yourself when you can get a break.....I know the feeling and feel guilty even if I am briefly away from our situation, but you will need your own space and time to continue being "strong" for her and your family.

Please feel free to contact me if you need someone to talk with or simply "listen".....

Rob

Have "faith".....

Re: Trying to keep hope

Im sorry to here adout your mom. My sister was diagnosis 10/17/08 after two surgerys of bowl obtruction. she has the same as your mom she has under went her firts bout of chemo.Found ouy it didnt work,now on to her second bout of chemo. I dont like what i see on statistic & out come .To answer your question on asking God ask for him to bless your mother. Have you ever read the prayer of jabez? Good book

Re: Trying to keep hope

please let me know about treatments,clinicals trials, where this foundation is located for cholangiocarcinoma. Anyone out there please.

Re: Trying to keep hope

Hello Angie....Welcome.  I am sorry to hear about your sister and her continuous fight with this cancer.  There is much information on the cholangicarcinoma.org website.  Please, let us know if you need some help  navigating it.  Of course, please continue to ask specific question.  There are many wonderful people on this board ready to pass on whatever they know and they are willing and ready to help you and guide you through this world of Cholangiocarcinoma/bile duct cancer.  Place your pointer to the top green bar where it says: Search Forum and enter any word such as "clinical trials" radiation, chemotherapy, etc.
Also, clinicaltrials.gov will lead you to current listings of clinical trials including, bile duct cancer.   
Please, stay in touch.
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: Trying to keep hope

Stephanie, The stents they put in will prevent the bile from leaking into her system, hopefully they put the metal stents in because the plastic ones only last for 4 to 6 weeks, my plastic one plugged up therefore really making me real sick, the metal ones I have in my bile ducts now seem to be working well, as I haven't been jaunticed [eyes or skin] at all. My thoughts and prayers are with you and your mother...Larry

22 (edited by swarty1 Tue, 17 Feb 2009 10:44:10)

Re: Trying to keep hope

Hello everyone, I just met with my oncologist today and she has set up  an appt. with a radiologist on the 24th. Sounds like 5 days a week for about 6 weeks of radiation and chemo. How is it to have that port in you along with the pump and bag with the fluid?  I'm kind of not wanting all of that but guess it goes with the territory. Is it tough to shower with that on you and also is it very cumbersome with that going about your daily routine? She [my oncologist] said that it doesn't look like my cancer [bile duct] has spread at all, which is good news. I was wondering that if my 9 chemo treatments has hopefully slowed it down, why not just continue with the chemo and not go to radiation? I forgot to ask her that question but will ask  the radiologist. Hope this finds you or your loved ones stable and fighting this dreaded disease as best you can. God Bless you all...Larry