Topic: My new onc

I met with my new onc today. You like those words, Lainy, Marion, Pam???
Her suggestion: a phase 1 clinical trial using no chemo. This drug (LY2801653), as I understand it, is to work with the body to keep the disease stable. I can handle that, as I am not "sick" and was not looking forward to chemo. If we can keep it stable for four months or so, I can revisit radiation!!
I am so excited, but need to read all 27 or so pages.
It looks like there are side effects, but not as bad as chemo. And they will need to do an endoscopic biopsy thru my stomach wall to get to the new node to have a biopsy done. They are also using genetic testing to see how "we" handle the drug...
And if it doesn't work, the new node is not in that dangerous an area where we need to worry immediately. If it doesn't work, we go to the evil that we know: chemo. More on the trial as I learn more.

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: My new onc

OMGoodness, Kris. I am so elated! I am over the moon! Happy as a lark. I would do 1 push up if I could get up off the floor after! How soon could it start and looks like it is for 4 months? Know what? The GI I am now going to, who saved my life 2 X now, said this, when I told him of my concerns with the Humira side effects for UC, "nothing else is working AND the benefits could very well outweigh the side effects" and that was when I decided to go for it and guess what? Only a weakness in my legs and some tiredness. I can live with that and if the side effects are less than chemo, you are tough, you can live with that!  yippee

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: My new onc

How very exciting Kris!!  Yay for you and your new onc!
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: My new onc

I love to hear about new things to try. You rock, Kris!

Re: My new onc

Yippee, Yippee, Yahooooooo!!!! I am so happy you finally found someone else to be your doctor. Having the right doctor makes all the difference in the world.
Your world will become so less stressful.

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: My new onc

Kris, this sounds promising and I am glad you like your new oncologist. Keeping you in my thoughts and prayers for success with this medication. Willow

Willow

Re: My new onc

I have been asking god what he wants of me, and saying I can't figure it out... Well, I am at a place where I can hopefully do so much good for so many people!! And my situation is such that I can try this without too much worry, because where the new lymph node is is not dangerous. So I think He answered my question.

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: My new onc

Kris, just the other day I saw a new quote I just loved. "God has a plan for all of us and he really doesn't need to ask our advise". Sometimes we have to take the long way around to get to where we need to be. And anyway, Teddy's Italian restaurant in the sky has been very full, too full as of late so I just know you are going to have to wait a long time for a seat and he doesn't take reservations!

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: My new onc

No, but I see he changes yours!! Haha

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: My new onc

Kris,

This is such great news!!!  Have you made your final decision to go with it?  Sounds like you have and it sounds really promising.  Please keep us posted as you progress along - this is so exciting.  Also, glad you feel good about your new oncologist.  Keep on keeping on!!!

Spring is here and hope is in the air!!!

Mary

Re: My new onc

Hi Kris, you are too funny! I was wondering if you have any dates yet (not that kind) to start your new adventure?

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: My new onc

Hi Kris,

That is great news about your new onc and the possible trial. Sounds very exciting and I wish you well with it. Please let us know more about it if you can when you know more yourself. Fingers are crossed for you!

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: My new onc

Kris....this appears to be the study:
http://clinicaltrials.gov/show/NCT01285037
and here is a bit more about the drug:
http://www.medkoo.com/Anticancer-trials/LY2801653.htm
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: My new onc

Marion: your persistence pays off again! That's it.

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: My new onc

Lainy will appreciate this...
As many of you know, I've been asking God what He wants me to do... Every time I thought things were settling down another wall would slam me... So for the past few months I've been asking what he wanted me to do.
Well, I finally had enough after two years and had this really strong urge to finally shop around for a new onc. I decided I liked all Dr. Denlinger had to say. I signed the consent forms for the clinical trial, and God willing, we should get the ball rolling rather quickly to see if I'm eligible.
Now for why I mentioned Lainy... I faxed the papers this afternoon and have found 3 pennies on the floor or ground since then. I think he's happy that I listened!!

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: My new onc

Hi Kris,

I'm so glad you made your decision and seem to be at peace with it.  The clinical trial sounds exciting.  I'm excited to hear how you do as it moves along.

It's so tough making these decisions - I know what you mean.  I feel like I'm at a crossroads right now since I've been re-diagnosed and told its intrahepatic cholangiocarcinoma stage III.  I feel like I'm starting all over again with doctors and treatments to choose.  It can be so overwhelming so I can appreciate how at peace you must feel with making the decision.  I wish you the best.

Take care,
Mary

Re: My new onc

Woot, woot, Kris. If you can be bought with pennies can you imagine what hundred dollar bills would buy? Sorry, couldn't resist. Man, you will do anything not to come here to visit! OK...enough joking, I do that cause I can with you! I am so excited for you but am wondering who sent the pennies, any idea? Usually the first person you think of is the one! I am also happy for you that he is not going to sit around but wants to get started. YIPPEE! Love you, girl!

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: My new onc

Dear Mary, I am so sorry for what you are going through. Does this mean the SBRT is postponed? If so, at least it sounds like you have some other options? This is exactly why we call this a roller coaster ride....that no one wants to buy a ticket for! What is next for you, have they said anything else like talking about options? 

                                         I asked for strength.
                     God gave me difficulties to make me strong.
                                         I asked for wisdom.
                              God gave me problems to solve.
                                        I asked for prosperity.
                         God gave me brawn and brain to work.
                                         I asked for courage.
                           God gave me dangers to overcome.
                                         I asked for patience.
            God placed me in situations where I was forced to wait.
                                         I asked for love.
                     God gave me troubled people to help.
                                         I asked for favors.
                               God gave me opportunities.
                               I received nothing I wanted.
                             I received everything I needed. By Aaron Hoopes

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: My new onc

Oh Lainy, you're so sweet.  I love that poem!!!  It always makes me cry when I read it and the tears bring strength to keep on trying.

The SBRT is still on for next month. It's just that getting so much information on this website and reading other stuff, I feel like my head is spinning and I'm wondering if I made the right decision.  I think I have and this is just me being anxious but who really knows for sure about such tough decisions we're forced to make with this disease.

I have a list of questions to ask the interventional radiologist on Monday when I have my simulation appt for SBRT.  Maybe the answers will help me feel better about my decision.

Mary

Re: My new onc

Mary, guess I would turn your feelings around and think, before they changed the DX I was doing well with my decision, so if they feel it will be a good thing, then it still is a good thing. Not sure that makes sense, I don't always make sense on this doggone Prednisone but point is they felt no need to change treatment and I am sure the Radiologist will put your mind at ease. You are so right about the tough decisions as if this family doesn't have enough on their plates. Its like CC has a brain that tells it to pick the strongest to contend with this "thing". If you are feeling anxious write to us all you want as it is cathartic. I bet Monday cannot come soon enough!

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: My new onc

Mary: the SBRT worked great for me for 7 months! I had a number of places to be radiated and they weren't sure how the affected areas would react. All was quiet for 7 months. My rad onc says we can revisit SBRT in a few months.
I say relax and let the experts do the calculations and worrying.

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: My new onc

Lainy & Kris -

Thanks for the words of encouragement.  I guess I just keep hearing how surgery is the best option and I'm being told surgery isn't an option for me.  That's where my confusion comes in and I have to clear it up at my appt on Monday.  I thought surgery wasn't an option on my first tumor (when I was diagnosed with Adenocarcinoma - unknown primary) that was wrapped around the celiac and hepatic arteries.  But that tumor was killed off by radiation last year and is still inactive as of my last scan and MRI on 2/14/13. 

Based on the MRI on 2/14 I was given my new diagnosis of Intrahepatic Cholangiocarcinoma - Stage III.  I'm told the tumor is in my bile duct in my liver.  I've never been jaundiced and I'm told my liver is functioning well.  Although my Alkaline Phosphatase level has been as high as 360.  As of last testing on 3/18 it was 274.  Oncologist was not concerned about this since she felt it could be from chemo I was on at the time.  I haven't been I chemo since 1/29/13.  Also, Bilirubin has always been within normal range.

Obviously, I don't want to go through if I don't have to but I want to get the best possible treatment now while I'm relatively healthy to give me a better chance of survival.

Sorry for rambling but Lainy did say it was ok and she is right - it is cathartic!!! (chuckle, chuckle!!!)

Kris - thanks so much for the vote of confidence for the SBRT.  Would love to hear what your side effects were from it.

Thanks for listening guys!

Mary

Re: My new onc

Mary, none of us want to be here in any capacity, but we are so we make the best of it which includes cathartic writing! Truth be told IF we were not here I would miss you all. Please keep in mind that even though you are off Chemo it keeps on tickin awhile like the Timex watch. I know when Teddy had Radiation it cooked up to 3 more months after. I really don't think the "Radiator" would continue with the Simulation if he felt they could not or should not do this. OK, so I have a new name for all our CC patients......Professional Patients!

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: My new onc

SBRT for me at least "kept in ticking" as Lainy put it, for 7 months, and the radiated cells are still docile, or quiet, or whatever word you want to use. There is still cancer, but it is hardly reactive on the only PET scan I've been allowed to get.
The new node is just that: new.
Anyway, the only side effect I had was tiredness. I won't even say fatigue, because it was just until the next day and then I was fine. I had no reactions, but they do warn you to watch for changes in skin and a few other things (no memory... Thanks chemo!)
My levels are the lowest they've ever been. CA19-9 is at 60, which is the lowest it's been since all this started 2 years ago. And everything else is normal or close.
1 year ago I was supposed to be having my resection, but God had other plans and my lymph nodes blew up and it was cancelled. I have never been jaundiced and never felt sick except from treatments. But I will always be inoperable now, according to Dr. Fong.
Lisa Craine also had SBRT. If she reads this, maybe she will chime in.
Good luck!

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: My new onc

Thanks again Lainy and Kris.  Even though I've had cancer since August 2011, I feel like I'm starting all over again with this new diagnosis last month.

Yes Lainy I agree with the terminology "professional patient" since this is like a job - the most important job of our lives maybe - besides raising our kids.  I feel like my decisions can be the difference between dying and surviving.  That's what I think about when I wonder why not surgery for me.  I read surgery is the best option.  I'm hoping my mind will be put at ease on Monday when I meet with the interventional radiologist. 

Kris, your situation sounds very similar to mine except that they were going to do a resection on you until the lymph nodes blew up.  It's good to hear some tiredness was all you experienced for the SBRT.  I have spoke to Lisa a couple of times and she also seems positive about the SBRT.  It's good to hear from people who have gone through it.  I believe you guys more than the doctors since you've actually experienced it.  Was the actual treatment hard to get through?  Lisa said they clamp your nose and put something in your mouth?  I have my breathing exercises scheduled as part of my simulation on Monday. I guess they'll go over all that with me then.

Thanks again for helping me move through all this.  It really means a lot to have others to talk to who actually know what I'm going through.

Mary