Topic: Results of 4/8 PET Scan

Hi Everyone,

I got some not so good news on Friday and am still trying to take it all in.  It seems it's always one step ahead and two steps back with this disease.  It's very discouraging and though I'm trying to stay positive I'm finding it very difficult to do so.  Overall, I'm do ok - just have some bowel/gas issues which seems to be from the surgery on 3/25 (details below).

My PET scan on 4/8 is showing that the tumor in my bile duct in my liver has grown considerably and the tumor that was dormant (more details below) is showing some activity again.  They are still going ahead with the SBRT.  They will hit the older tumor with a lower dose of SBRT and the new tumor with the higher dose as planned.  They are still saying surgery is not an option for me because the tumor is on both sides of the bile duct in the liver and they would have to take too much of the liver and I would need a transplant and I'm not a candidate for a transplant.  In March I was told this is intrahepatic cholangiocarcinoma - Stage III (lymph nodes were involved).  Now the radiation oncologist is also saying possible klatksin tumor (along with intrahepatic) because my tumor is at the junction of the bile ducts outside the liver and then goes into the liver.  I'm still trying to understand this all!!!

I'm sorry this is going to be a long post as I want to re-tell my story to see if anyone can provide any insight for me to help deal with this. 

As I mentioned in my first post, when I joined this website, I was diagnosed with adenocarcinoma - unknown primary in August 2011.  The tumor they found was wrapped around my celiac and hepatic arteries.  After two biopsies (at two different hospitals), it was determined that the cells that were found in the tumor are usually cells found in the pancreas or bile ducts.  However, both areas were coming up clean with every CT and PET scan.  That was until February of this year when I had a PET scan and MRI.  That's when they saw the primary site - in my bile duct in the liver and re-diagnosed me as Intrahepatic Cholangiocarcinoma - Stage III (because lymph nodes were involved). 

Treatment in Oct-Dec 2011 was 5-FU, oxaliplatin and leucovorin together for 4 cycles (went home hooked up to 5-FU for 3 days each cycle). Then in Jan-Feb 2012 I had 28 radiation treatments. That's when it seemed like the tumor was dead but what they called, at the time, a regional spread showed up running along the portal vein.  So in May-Oct 2012 I started chemo again - same as above but 8 cycles.  That didn't help at all so in November 2012 they started me on gemcitabine.  Was suppose to be one day a week for three weeks then off a week and back on again. I wasn't able to get full dose because my counts kept going down drastically. I continued on gemcitabine until January of this year.  Then on 2/14/13 I had the PET scan and MRI and that's when they saw the tumor in the bile duct in the liver and decided on stereotactic body radiation therapy (SBRT).  After several doctor appts and surgery (3/25/13) to have mesh spacers put in to push my stomach and small intestine back so the radiation only hits my liver - also had fiducial markers (gold seeds) inserted in the tumor to help, more accurately, guide the SBRT, I am scheduled to start SBRT on 5/8/13.  It will be 5 treatments - Wed, Fri then Mon, Wed, Fri the next week.

I'm being treat at Memorial Sloan Kettering in NYC. 

Any advice anyone can give me would be much appreciated.

Mary

Re: Results of 4/8 PET Scan

Mary,
Some people call this a roller coaster ride, but I call it Chutes and Ladders! You think you are getting somewhere, only to slide down the chute. Ugh!
I am sorry you are going thru yet more problems. All I can say is the SBRT SHOULD be a piece of cake compared to eat you've already experienced. I had fatigue when I did it. That's all. I pray that will be your biggest side effect.
I think I responded to one of your previous posts, but here goes: SBRT bought me 7 treatment free months. The radiated areas are still quiet, but the disease has spread again. From the looks of the node, it might have already been cancerous and treated with chemo: it does have signs of necrosis. But not enough.
I was at MSKCC also, but recently changed to Fox Chase Cancer Center. I will be participating in a clinical trial using a new drug that is NOT chemo! They are accepting candidates. Please remember this IF (and I pray you won't) you need this. By then it might be to Phase II, and much safer. Please contact me if you want to know more. Kjacobson8@yahoo.com or 267-625-9873.
I start the trial 1 week from today, and will keep everyone posted on outcomes, side effects, etc.
Good luck with the SBRT. I will pray you get many years of "QUIET" cells.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Results of 4/8 PET Scan

Dear Mary, This is not the news we all hoped for. I just re read Kris's post to you and it all sounds logical. Why oh why does everything with CC have to get so complicated. Who the heck invented this CC anyway! I don't know enough about what is happening to you, I want to chime in and say I hope the rollercoaster begins it's climb again. Just know I am thinking of you and sending a ton of hugs and I know you will keep us informed. I think Kris's  post is good for you, I would give her a call!

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: Results of 4/8 PET Scan

Hi Kris,

I like the chutes and ladders analogy - that's exactly how I feel!!!

I do remember your story and am holding on to the hope that it works for me at least as long as it did for you or longer! 

I look forward to hearing from you when you start the clinical trial next week and the weeks to come.  It is something I will definitely keep in mind for the future but hope I won't need!!!

Trying to explain this to family and friends is taxing as I'm trying to take it all in myself.  I feel like my head is spinning and I'm having trouble concentrating.  On a positive note though, I am leaving on 5/1 for a pilgrimage to Lourdes, France.  I hear it is a very spiritual experience and I'm hoping the Blessed Mother (I'm catholic) will bring me peace (maybe even a cure) to deal with this disease.  I come back on 5/7.  That's why I'm not starting SBRT until 5/8. The radiation oncologist fully supported my going to Lourdes and waiting until 5/8 to start SBRT.

Lainy - thank you for your kind words.

Mary

Re: Results of 4/8 PET Scan

Mary....This cancer is difficult to understand and even more difficult to explain to others.  There are many variables in disease presentation, treatment responses, and recurrence rate.  Therefore, I like to compare it to a fire; some areas high in flames while other areas are smoldering away. 
You hang in there, dear Mary.  I am so thrilled to know that your much awaited trip to Lourdes will happen soon.
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: Results of 4/8 PET Scan

can i ask a dumb question?  i was under the impression that once CC had spread ANYWHERE else(out of the liver) it was considered stage IV cancer---is that not always true?

(I know my husbands HAS spread and that's why it's considered stage IV--it has left the liver...)

i'm mostly just curious.... thanks and sorry if this is a dumb question.

and also what is SBRT???

(new to all this and don't know all the acronyms)

Re: Results of 4/8 PET Scan

Thanks Marion.

Dorien - no questions are dumb.  SBRT stands for Stereotactic Body Radiation Therapy.  It's a very high dose of radiation that is image guided directly to the tumor - in my case in the liver. I had four fiducial markers (known as gold seeds) inserted in the tumor in my liver that will assist in guiding the SBRT directly to the tumor.

As for my staging, I was told stage III the beginning of March when I was re-diagnosed from my 2011 diagnosis of adenocarcinoma - unknown primary. However, I didn't ask, and the doctor didn't say, if my staging has changed since the old tumor is showing activity again.  I will ask that on my next visit and let you know.

Mary

Re: Results of 4/8 PET Scan

Thanks Mary for your quick response!

There seem to be multiple things that people to do treat this (depending on size, where it is, how far it's gone, if it can be operated on, etc.)

Some of it is quite confusing to us.

In fact, as we've learned more and more about this cancer--we find it "weird"
that Kyle has had almost none of the "typical" signs that patients usually see with this cancer--we sometimes wonder if he doesn't have the OTHER type of liver cancer....

They say pathology and smears and all that stuff indicate CC--but he was "unknown primary" for a while too.

Re: Results of 4/8 PET Scan

PS-- medicine seems to be a big "guessing" game sometimes too i think--

i used to think it was much more definitive and it doesn't seem to be.

Re: Results of 4/8 PET Scan

Staging is a bit complicated and can become more complicated yet.  The basics are listed here:
http://www.cholangiocarcinoma.org/staging.htm

and this one pertains to Extrahepatic:
http://www.cancer.gov/cancertopics/pdq/ … ages/Print

and a bit on intrahepatic staging:
http://www.ncbi.nlm.nih.gov/pubmed/20179593

Our Bruce (2000miler) and Eli have prepared an updated staging system, which is in the process of being reviewed (it is lengthy, but very informative.)  Thanks to both of you, dear Bruce and dear Eli.
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: Results of 4/8 PET Scan

Dear Mary,

I am sorry you didn't have the best news, well actually the news pretty much stinks, right? With this cancer, I have found that sometimes news is good and sometimes news is not good. You have to learn to accept the bad with the good, deal with it and go on. The most important thing is to keep a positive attitude and don't give up hope. I am hoping the SBRT works wonders for you. I appreciate all the support you give Lauren and I. Now it is my turn to support you. I am sending my best wishes for you on May 8th and the days following. God bless you.

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: Results of 4/8 PET Scan

Mary,
I hope you enjoy your trip to Lourdes. As for these bumps in the road; I kept asking God what he wanted of me and why he kept making treatment plans work for a little bit and then either stop working or I had to stop because of side effects. I was SO frustrated! I got the answer a few weeks ago when I finally broke down and changed oncologists. She is the one who suggested this trial. As I left the first meeting with her (which was 45 minutes long) I looked up and thanked God for finally hitting me over the head. I fully believe he led me here. And to get in the trial other treatments have to have proven not to work or to have made the patient unable to continue them. That's my story. This is what He wants. So now I thank Him for leading me to Dr. Denlinger.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Results of 4/8 PET Scan

Pam & Kris,

Thank you for your words of encouragement.  As you both know, this can be so overwhelming.  I feel like I have to be a doctor to understand this all and it can be so stressful.  But it's my life and I don't want to miss a thing so I research and research until my head is spinning!!!  I'm learning a lot and I'm so grateful for this site but sometimes I'm so tired I just want to give up. 

I thought myself pretty lucky at being so healthy with this disease (especially when it was adenocarcinoma unknown primary) and really believed I was going to beat the odds.  But now with the new diagnosis, and since the surgery on 3/25, I have to really convince myself to stay positive.  I guess it takes time to recover from any surgery and maybe that's what I have to remember and not be so hard on myself.

Anyway, thank you again for your support.  I will keep you guys in my thoughts and prayers.  I intend to think of all of you when I am at the Grotto in Lourdes and will ask the Blessed Mother to help us all with this disease.

Dorien - I second your comment above.  That is some of my problem too.  I want definitive answers and they just don't have them sometimes.  I think I'm being taught the gift of patience with this disease!!!

Re: Results of 4/8 PET Scan

Marion,

Thank you for all your information.  You are a godsend!!!

Mary