Topic: Intro- Hoping for a long road ahead

Hi,

To introduce myself- Life changed in October when Mom (74, healthy) was diagnosed with CC.  It was found through a routine blood test- no symptoms. The "good" was that we thought she would be able to have the 6 cm tumor resected, but after opening her up, they saw that the location and spread of the tumor made it inoperable.So, closed her up and now looking at way forward.

She went through 3 cycles of Gen/Cis.  After first week, we didn't think it would be tolerable, but adjusting meds (adding emend and 4 days of steroids) improved side effects so drastically that she was able to go without the other nausea meds (reglan and zofran) and finished 3 cycles. The first round was also difficult since she had not healed completely from the surgery.

Scan after chemo showed a 20% reduction in tumor   Very good results, but asked oncologist and was told that tumor still will not be resectable in future due to location and morbidity risks.

Next step is Y-90 spheres- mapping will be next week.  There is a chance that the right lobe is involved, but hoping only the left- mapping will confirm.  They also discussed doing cyberknife down the road if the the tumors reacts well to the radiation. My thought is if we can't remove it, let's just kill it smile

Mom feels great now that chemo is done; hard to believe she is sick.  I'm hoping that since she is otherwise healthy, liver function good, and chemo did show a positive result, that I will be a member on this group for a long time to come. 

Mom has heard the "year" for non-resecatable CC, but I'm trying to convey to her that we can look for longer; it is not hopeless.  My daughter will be getting her PhD in 3 years, and I'm trying to tell her that it is not impossible that she will be with us to share in the celebration.

I've been reading the board for a while now and truly appreciate the kindness and information that is shared through this community.

So.. I have been scanning boards... if anyone has a 3-year non-surgical survival story to share, it would be appreciated.  Otherwise, I guess we'll have to hope to pave the way.

Thoughts and prayers to all families and friends that are sharing this journey.

Catherine

Re: Intro- Hoping for a long road ahead

Dearest Catherine-
Welcome to the best family ever. Sorry you had to join us but you will not find a better support group for what is going on in your life and hers.

First off don't worry about years, survival rates or any of that. Those types of statistics are most always based on the past and we are moving into the future. And none of us are born with expiration dates. There will be those that will pop in who have been living with this for years and it is treated more as a chronic disease.

It does sound like things have been going fairly well and you have definitely headed in right direction with it.

A couple of questions: Where is your mother getting treatment and have you sought a second opinion, especially for the surgery?

Best wishes,
KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Intro- Hoping for a long road ahead

middlesister....welcome to our special group.  I like your approach - cautiously realistic with a good dose of optimism.  Personally, I prefer this cancer to that of a chronic disease rather than setting time limits which truly are unknown. Your Mom has had a great response to Gem/Cis and there is no reason to believe that she won't do equally (or better yet) with the proposed selective internal radiation therapy.  Side effects of the treatment may include flu-like symptoms however; I will leave the explaining up to those with personal experience.  If indeed you are looking for quick answers, the Search function will lead you to some previous postings.  Oh, I also wanted to mention that the biliary book might be of help to you.  It provides the patient's perspective as well as that of the physicians.  I believe that everyone touched by this cancer should download the free e-mail version as knowledge empowers us and aids us in the decision making process.  (Hard copies may be ordered for a small fee real soon.
Here is the link:
http://cholangiocarcinoma.org/bookorder-ebook.htm
You are a fantastic advocate for you Mom.
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: Intro- Hoping for a long road ahead

Hi Catherine,

Welcome to the site. Sorry that you had to find us all here and I'm sorry to hear what your mum is going through but I'm glad that you've joined us all as you're in the best place for support and help and I know that you'll get a load of both from everyone here. Thanks for sharing what your mum has been through so far.

Please do not focus on the stats or anything like that. I know that sometimes it can be hard not to do that but it would be better to focus on the positives. Your mum has reacted well to the chemo and that is very positive news indeed. Her medical team have a plan in place with further treatment options and that too is a positive in my book. Hopefully she will react as well to them as she has the chemo.

Things are indeed not hopeless as you say and I so like your attitude of if it can't be removed then let's kill it! A positive attitude will carry you both far with everything involved here. You say your mum feels and looks great and to me that is excellent news indeed.

Please keep coming back here and know that you are around people who care and know exactly how you feel and what you are going through. We are here for you and will help in any way if we can.

My best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Intro- Hoping for a long road ahead

Thank you all for the information and the warm welcome!

In response to Kris- She is being treated at Univ of MD.  It was the head of oncological surgery who operated on her in Nov.  We knew at that time that the surgery did have a risk that she could die on the table, but Mom and the surgeon felt this was her chance for a cure.  He also warned that if they went in and it had spread further, they might not resect it.  The tumor (only one tumor) is not round, but instead has portions extending out- and is located in the center of her liver.  He mentioned that it has extended to the Vena Cava.

Fortunately, I do not feel that a "better" surgeon would have been able to remove it when she was in surgery; Univ of MD seems to be one of the top hospitals and she had an experienced surgeon.  So far they seem to be aggressively attacking it through the chemo and radiation. Her tumor has been through a few "tumor boards" and the docs seem to agree with approach. 

However, we do have Hopkins just a few miles down the road as well.  Once we are through with the sphere treatment, I guess we could ask for a second opinion.  Do people go for second opinions when they are already at a top facility?

Thank you,
Catherine

Re: Intro- Hoping for a long road ahead

This is the first time I have posted on this site.  I am encouraged by Middlesister.  please excuse my mistakes - new to computer, too.  I have been reading this site for a long time and it has really helped.  I was diagnosed at  age 74, 18 mos. ago.


I, too, had a good surgeon and they removed 1/3 of liver - 5 cm. cancerous.
It was decided not to have any treatment (decision mine).  So far I have been doing pretty well.  However, it has changed my whole life.  I moved from being  a lifelong Fl. resident to wonderful, snow country, Upstate NY to be near son and family. 

I have a very good G.P. and she keeps me humming with palliative drugs. I am optimistic  and  enjoying every minute of life.  However,  it is always at the back of my mind.         sallyr

Re: Intro- Hoping for a long road ahead

Hi Catherine,

I would like to welcome you to this site, but I am very sorry to hear about your Mom. In answer to your question about second opinions, I would go for second opinions and more until I found a surgeon that I was happy with and I trusted completely. I know many people seek more than one opinion to make sure they are making the right decisions. My daughter, Lauren, was the one with cancer and we did not seek a 2nd opinion. We were happy with her doctors and loved and trusted them. I think our situation was different in that my daughterand son-in-law are both doctors and had done surgeries with her surgeon. They saw first hand the brilliance of his work. Lauren was inoperable, but became operable after two years of many treatments. Sadly, she passed away after complications from her surgery, but to this day we do not regret our decisions. She wanted a shot at a cancer free life and took it. It is a personal choice and I believe a smart one to seek second opinions. If you are asking if you need a second opinion, you already have your answer. I wish your Mom all the best in fighting this disease and strength for the family.

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: Intro- Hoping for a long road ahead

Pam,

The hope of someday becoming operable someday is not something I'm ready to give up hope on; we'll see how she does after the radiation.

One thing from this board, and also from our time spent during chemo, was seeing those who are so much younger and have to go through this.  Also, Mom's heart went out to those who were getting the chemo by themselves. We're fortunate to have the family support, so even chemo treatments were an opportunity to visit, bring hot chocolate, and have some tears, but also laughs as we take turns sitting with Mom since there was only room for two others to be with her at a time. 

I am very sorry for your loss.  I have a daughter, and can not imagine how I would be able to stay positive and have the grace to support others.  After reading your response, I had to take a computer break due to tears and again think about how blessed we still are. 

Note to  Sally-  although cold in NY, glad to hear you're closer to family now. We'll be taking a vacation with Mom to Ft Myers at the end of April and will think of you as we enjoy the warmth. 

Catherine

Re: Intro- Hoping for a long road ahead

Catherine -
I would still think a second opinion would be warranted and it does not mean you are unhappy with your current team, just exploring all the options. I know that some doctors are more willing to take risks that others. Or have different techniques to do surgery than others. And the nice things about where you live is that you have many, many choice of where to go.

We were very, very lucky that when we were referred to Seattle for my husband's surgery, we got the top liver surgeon in our area. He trained at Memorial Sloan Kettering and there was no doubt that he was going to do the surgery. We were told the same thing though that he could die on the table and that they could open him up and find it spread too bad. 14 hours later he was out of surgery tumor removed.

But, no matter how well I liked our entire team and trusted them implicitly I would have sough 2nd and 3rd opinions if necessary.

Of course, it is always your choice and your mother's choice.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Intro- Hoping for a long road ahead

Catherine....I can only agree with the others - search out an additional opinion from a surgeon operating a high volume of Cholangiocarcinoma  patients.  You might also want to peruse our Medical Advisory Committee for additional information:
http://www.cholangiocarcinoma.org/medic … ouncil.htm
I am not trying to imply that your current surgeon is not experienced however; you would want to confirm his/her approach with that of other  specialists. 
Please keep us posted.
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: Intro- Hoping for a long road ahead

Dear Catherine, welcome to our remarkable family but sorry you had to join us. As far as getting a 2nd opinion please remember that his CC is VERY rare and sometimes a 2nd set of eyes see things that the 1st set didn't. I think 2nd opinions are good if for no other reason you will never look back and think, oh we should have done that  for peace of mind. You mentioned Cyber Knife and my Teddy had C.K. It is a real Miracle and bought him 2 extra years. He was 73 and lived to 78.C.K. is pain free and I do know the tumor must be under 7cm. You are a great advocate and know that any decisions you make are almost always the right ones! I always say I graduated FROM gut 101! Wishing you and your Mom the very best and please do keep us posted as we truly 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: Intro- Hoping for a long road ahead

Dear Catherine,

I am very sorry to have upset you. My intention is to help others. This is why I tread lightly on this site. I know our story is very sad and I have to deal with it every day, but I hope I can help in some small way by writing about our experiences. My daughter and our family were blessed as well and always had family around. Continue to have hope. That is what helped us.

Love and 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: Intro- Hoping for a long road ahead

Pam, 

I'm sorry if I wasn't clear-  please do not apologize.  I was just so touched by your journey and willingness to help others- tears are not always a bad thing.

You have already positively touched me; I'm sure there are many, many more who you have helped.

Re: Intro- Hoping for a long road ahead

Dear Sally, welcome to our wonderful family but sorry you had to find us.  You mentioned that your GP is giving you Palliative care and I am curious are you not under the care of an Oncologist? Wow what a change from Florida to NY. Brrrr. I think thought that it is good you moved near your son. Wishing you a ton of luck and please do 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: Intro- Hoping for a long road ahead

Thank you, Catherine. I agree that tears are not a bad thing. They always make me feel better.

Welcome to this site, Sally. You are doing great for being new to the computer. I am also happy you are doing well and live closer to your family. Everything is better when you are near family that loves you.



-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: Intro- Hoping for a long road ahead

Dear Lainy,

Thank you for the encouraging news.  The chemo did shrink the tumor down to under 5 cm and hopefully the spheres will further attack it. It's not the size, but the location that is her challenge.  I don't envision Mom wanting to put the radiation treatment on hold for a second opinion; it was already delayed 2 weeks on getting FDA to approve its use for her CC (I guess it's an automatic approval for colon cancer but not for CC).  Mapping is Thursday and 7-10 days later the seeds will be implanted.

From what I've read, I don't think any harm could come out of proceeding with the SIRT.  But, I will suggest that we may want to get a second opinion from Hopkins once it is completed.  If there is a surgeon out there who can remove it rather than CK, she would be willing to try again.  This board mentions the ups and downs, having Mom wake from surgery and having to tell her they left it in, was one of the lows. I

Thank you all.

Re: Intro- Hoping for a long road ahead

Catherine,

Here is a thread on some SIRT research that I found interesting.  You might also be interested.

http://www.cholangiocarcinoma.org/punbb … p?id=10537

When I was looking into this for my wife, the main thing I was concerned with was whether the SIRT treatment was "whole" liver of "partial" liver.  To treat the whole liver, some institutions will do it all in one procedure, and others will do it over two procedures. 

I personally think the research indicates that using two procedures is safer, but I am not a doctor, and I know that opinions amongst interventional radiologists vary.

Hopefully this is helpful to you.

Best wishes for your mom,

Jason

Re: Intro- Hoping for a long road ahead

Catherine -

I was diagnosed in July, 2013.  Initially, tumor in liver was 17 cm.  It's now down to 13 cm.  No surgery for me.

As for the numbers game, I am an engineer - numbers are my life.  I told people at work that I was lucky enough to "win" the low-odds CC lottery, so I expect to also win the low-odds survival lottery.  Someone is keeping the right end of the curve past five years above zero so I figure it might as well be me.

I'd say make your plans for graduation.  It might provide incentive for your mom.  Medicine is not the only curative power in the universe.

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: Intro- Hoping for a long road ahead

Duke-

I agree.  Thank you for the good thoughts and I wish you the best.

And I hope that you, my mother, and all others associated with this site help not only increase the right end, but drastically shift the whole Bell Curve on survivability far to the right.

Re: Intro- Hoping for a long road ahead

I'm all for blasting that blasted bell curve off the chart. Welcome and, yes, hope you and your mom are here for the long haul, along with a lot of the rest of us.

Impatient patient.

Re: Intro- Hoping for a long road ahead

Jason,

I finally read the link while eating lunch.  We're hoping only left lope is involved, but even if mapping shows the right lobe is as well, they will wait a month in between and then decide if they do the SIRT on the right or an internal chemo.  They mentioned wanting to limit radiation in case she may be a CK candidate down the road.

However, since we went through 3 cycles of the Gem/Cis, I will question the risks.  I wonder if the treamtment plan involving  SIRT was a reason they only wanted the 3 cycles of chemo rather than the highter number others here have done.

Thank you!

Re: Intro- Hoping for a long road ahead

Catherine,
Welcome to this wonderful group of supportive and loving friends. I agree with earlier posts that a second or third opinion is in order. I was overwhelmed with all the statistics when I was diagnosed and came to realize that we are each unique and some of the data is old! I have read many stories on this site where someone was inoperable and became operable so please don't give up Hope.
Sending thoughts and prayers of healing
Lisa

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