Topic: My Report Card(CT Results)

Hi All.......CT results... to keep it short and sweet was increased numbers and size of tumors/nodes.  This now includes abdominal wall.  The only two areas that remain stable post radiation treatment approximately one year ago is my liver and spinal area. All other organ remain clear. Short discussion with Doctor..... is within the last 3 or so years I have tried every chemo drug possible with exception of Tarceva pill form.  Over 35 different drugs to include side effect meds. I told my doctor it was time for my body to take a break and I would think about Tarceva later.  Appointment ended with that doctor saying that is reasonable with me.  Recommended I continue taking meds for fluid retention and stay consistant with pain meds and to keep my bowels moving, and I'll see you in 3 months unless you want to see me sooner.  He shook my hand and I said have a good day see you in 3 months time.  We did talk about radiation and I agreed with him that trying to do a whole body treatment would mostly likely kill my liver.  I did inform him that I was going to participate in a EFT Study specific for Cholangocarcinoma patients of which he was quite interested in.  I could see his scientific mind start twirling, when I mention study and specific CC.  Any who, I pressed on and feel pretty good about my decision.  It's now time to put all toward nutrition and EFT (emotional freedom technique), which I have really took a good hankering too.  Did I just say that Ha! I must have heard it from somewhere. Just making the decsion to stop this current regimen and take a 3 month break, feels so good.  I forgot to mention, we did have one disagreement about this most recent chemo regimen.  I told him I thought it had aggravated my tumor growth and he got a tiny bit defensive by saying I don't believe the treatment caused the the increase or progression and I just smiled and said I know, you have to look at it scientifically but I have to look at it my way, and/if/or who knows really for sure. That's when we shook hands and smiled.  He has been a great Oncologist and I will certainly be seeing him in three months. I told him maybe something really really novel will pop up in the mean time.  Tha..Tha...Tha..That's all Folks!  Look forward to talking with some of you, during the up coming EFT Study.
Have the Bestest Day Possible,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: My Report Card(CT Results)

hey jeff,  I am so sorry to hear about the increased # of tumors/nodes however judging by your personality it sounds like  you are just getting ready to rest up a bit and kick butt!!!!!!!!!  Feel good and enjoy a little freedom from the chemo/radiation.  who knows your body better than you....have a good night guy smile deb keeping you in my prayers

Re: My Report Card(CT Results)

Everyone deserves a break now and then. I wish there were a thousand Jeffs  and we could each take one with us when we visit our doctors. You are something else. With your positive attitude and due to the fact that we honestly do need you, you will be around with us for awhile yet because your job is not done!!! Always thinking about you and wishing for the best. Come to think of it, we will not let you rest, we will keep you plenty busy!

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 Report Card(CT Results)

Jeff,

It seems like you have tried almost every treatment, the chapter on cc in medical books should just be your case study.

There is one treatment I have not seen discussed on here and I have been hesitant to bring it up because it is controversial but, Jeff, if you are looking for something really really novel, you might be interested. My sister was weaning her son and we decided to give my Mom her breast milk, which some think has potential:

http://cbs5.com/health/Health.Dr.Kim.2.455691.html

Has anyone else tried this? I am not sure if the breast milk has helped her or not but I think it can definitely boost the immune system, although she was only getting a very small amount. My cousin who is a nurse at the hospital where my mom was said the doctors told her they have no idea how she is still alive (that was when I realized that sometimes the doctors don't see her, they see the tumors) so who knows?

The controversy, of course, is that premature babies need breast milk, too, and the supply is limited.

Patty

Re: My Report Card(CT Results)

Jeff,
Sorry the last round of poison didnt do everything we all wanted. You are truly an inspiration.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: My Report Card(CT Results)

Hey Jeff, I agree that all the treatments are so hard on the liver, maybe this will be just what you need.  You're going with what we've always called your "gut feeling".  That is so important to be tuned into in life.  I personally believe it's the still, small voice of God trying to tell us something, if we would just listen.  Believe that what you're doing is the right thing for you. 

Carol

Re: My Report Card(CT Results)

Good luck, Jeff. I'm sure your body is telling you the right thing. You need a break!! Keep up the good fight and keep those positive thoughts flowing. We will too and send them your way!!   Mary

Re: My Report Card(CT Results)

Hey Jeff,
Sorry you didn't get an "A" on that report card, but I am sure playing "hooky" for a while will help both the body and the mind.  Take good care and prayers are coming your way.
Karen

Wishing all God's blessings!

Re: My Report Card(CT Results)

Dear Jeff:

While you are taking a break from your oncologist, I hope you are not taking a break from this group! Your comments have been very helpful to me and many others here.

A word about Tarceva, which you have not tried yet: I feel I have gotten a good result from Tarceva. I have had absolutely no side effects from this drug, though I know others here have reported differently. Tarceva is the drug of choice for my onco at MD Anderson, who specializes in cholangio.

Wishing you all the best. Enjoy your rest from the chemo-go-round!

Violarob in Texas

10 (edited by JeffG Sun, 27 Jul 2008 09:16:19)

Re: My Report Card(CT Results)

Thanks Everyone for your support and words of encouragement.  Like my 80 year old British Mother in Law told me" Keep your pecker up"  Ha! I have to laugh.  English Definition:  Don't let your worries pile up on you and Stay optimistic; Keep your chin high.  Different cultures and there sayings just blow me away with laughter! Have you had tea yet?  (Supper) Ha! Mate would you like a fag? (cigarette) it goes on and I love it. It all came will my loving english wife of 31 years.

Cheerio, Ta Ta, Later Mate, Jolly good Day,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: My Report Card(CT Results)

Jeff --

Break a leg (but not really!)

Irene

Re: My Report Card(CT Results)

Jeff,
       ou are our inspiration - you are also a walking encyclopedeia of CC info!

Joyce (From Butch recovery room here at the UPMC hospital - good wishes from him, too)

Joyce

Re: My Report Card(CT Results)

Jeff, as we brought my father closer to family to live out his last days he saw a new oncologist who has just started him on Tarceva.  He started it last Friday.  Will keep ya'll posted.

Re: My Report Card(CT Results)

Jeff, your posts are the light of the website and truly show how its not the hand that's dealt, but rather how you play them. Keep it up, we need your wise words and witty inspiration. Belle

Re: My Report Card(CT Results)

Hey Jeff,

I WANT MY OWN PERSONAL JEFF!  Hang in there!  All teachers KNOW that a less than favorable report card can jet up there to an A report card, and that's what I'm praying for for you. 

I'm up here at Truckee enjoying the last 2 days of my little vacation, and my daughter told me that if I was a bird I'd be a blue jay because they are so feisty and always in the mix....stirring it up and cranky with each other.  And your mother-in-law said to keep your pecker up.  I had to really laugh at that one.  I'm a blue jay, and you're walking around with a continual erection.  I can't even believe I'm having this conversation, but I need to make myself laugh. 

I was reading a book over the weekend (actually a Brian Jacques book) and the character said, "As long as there is life, there is hope."  I'm clinging to that one.

You and all the others on this site continually remain in my prayers.

Sophie

Re: My Report Card(CT Results)

Hello Jeff, I read your posts with much interest and appreciation.  That is not the best news but there is some good stuff there, that your liver is OK and other organs are stable.  Sounds to me like a wise decision to take the break and then try the other treatment (EFT) that interests you.  I will read up on that, hadn't heard of it before.  Sounds like your physician is perceptive and supportive, as you are too.

17 (edited by JeffG Mon, 28 Jul 2008 18:41:44)

Re: My Report Card(CT Results)

Thanks again Guys!  I took note Violarob about your Tarceva experience.  Sophie , That's what I'm doing is making up all those incomplete assignments to get a better grade Ha! I always played hooky to much, but I had fun doing it. I watch are you smarter than a Fifth Grader every week and if I was on the show, I would have won the Million twice now. Oh, wouldn't that be nice. Salsarcat, You are 100% correct liver remaining stable and all other organs clear is a big plus! Actually, I've requested the doc to order me some zometa treatments, to add a little strength to my bones during this time.  It's not a chemo drug but some studies have shown it helps starve off cancer. Thanks Mary , I love positive flowing thoughts flowing my way. Carol it's been a rough road but, I will always be listening for the whisper. Rank I hope your Dad has a positive experience with Tarceva.  Patty, I have explored that possibility but never followed through.  I still have a plan of maybe trying Baby's formula mixed with natural grape juice.  The only problem, is who would burp me? Ha! Sorry I couldn't resist.
Good  Night and God Bless to All,  P.S. Belle , a prayer for your Sis.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: My Report Card(CT Results)

Jeff,

I hope you know that you are an inspiration to me (well, I think to us all) Keep up the great attitude!  I love it.  Jeff also, I have to agree with Violarob about Tarceva.  Our oncologist said that he has been having great results from the combination of gemzar and tarceva.  He said he had a patient that he put on these two drugs and her tumors shrunk so fast he couldn't believe it.  Also with very little side effects.  Gemzar and Xeloda are first protocal but he only left chucks on Xeloda for a week and a half and then switched him to Tarceva just to show he tried first protocal and say it didn't work.  He said that he really believe in the gemzar+Tarceva.  Best of luck Jeff.

Christina

Re: My Report Card(CT Results)

Jeff, it has been a rough road, but we won't give up!  God Bless You Jeff!!

Carol

Re: My Report Card(CT Results)

I can see why the members here want their own personal Jeff! Thank you for your positive vibes!

21 (edited by dldct Wed, 30 Jul 2008 09:08:20)

Re: My Report Card(CT Results)

Hi,

I just want to echo what Christina has said on Gemzar and Tarceva. My mom who was diagnosed last month has been on this for three weeks and feels the best she has since a month before she even knew what was wrong. Her only real side effect is the acne/rash. Don't want to push any drugs but just wanted to share her experience too. Best of luck with whatever you choose. I always enjoy reading you posts.

Best,
Dawn

Re: My Report Card(CT Results)

This is really weird.   I posted up a topic "good or bad"  basically saying how it is so strange that after 4 weeks of chemo  (gemzar/tarceva) chucks is feeling better than ever.  He is active, eating, walking, feeling pretty good other than tuesdays when he gets the chemo.  I was worrying that it meant his body was not reacting to chemo but hearing all this good stuff about everyone else.  I feel some relieve.  Keep up the good work guys.   I think we are making some progress on this sucker!

Christina.

Re: My Report Card(CT Results)

Jeff - when Sam was going through all of this, Mark Clements, Valerie McCrea, and Kelly Lester's blog were so meaningful to me.  I have to admit that since Sam is gone and so is Mark, Valerie and Kelly, it is difficult to stay so involved but Jeff, you keep that going for everyone else that is going through this difficult time.  You have been and will continue to be such an inspiration to me and everyone on this site that is facing this unbelievable time in their lives.  You do this with such grace, humor, love, caring, unselfishness, dignity, humbleness, and I could go on and on - - - you are incredible.  I so wish I could meet you and I am sure one day I will . . . as Sam said  - "see you on the other side".  You are an inspiration to me and to everyone on this site and we intend to keep reading your postings for many, many years . . . hang in there and know that you are loved by so many.  As Sam would say - this is just a little bump in the road.  Love you.
Love Betty

24 (edited by JeffG Sat, 02 Aug 2008 19:35:54)

Re: My Report Card(CT Results)

Hi Betty,  I almost missed your post! Really great to hear from you.  Your message really made me feel good. Thank You.  You know It's so strange; I was thinking about You and Sam today.  I even bounced back and forth lookng at your pictures.  All I could think of, is if you have added your art room yet?  My Mom used to do paintings until her parkison's took over. In fact, her last painting we did together.  It was a big one. We did it on the wall in her sunroom about 6x8 feet; a scene of sailboats on the lake with evergreen trees and mountains in the background and a beautiful sunny  day.  we did it in one weekend using arcrylic tubes of paint.  She did all the mixing though,as I didn't have a clue what colors made other colors. Ha! It was a fun weekend for us both. We laughed so much ,because we added a speed boat to the picture and a guy on the sailboat waving his hands and a think note above saying "are you crazy?" Last month when I went to Maine to visit her in the Nursing home, the painting is still there! I got my younger brother to live there and keep the place in good repair.  I thought it would get painted over by now. Gosh , I've gone off rambling again.  I hope you have been keeping well?  So, What kind of art work do you do?  I met a guy camping years ago, who carved birds out of chunks of wood. He was good at it too.  As far as meeting, Like I tell my Mother-in-law who lives in England, "You Never Know?" If your ever driving through Wichita, give me a ring and we'll have lunch. There is a few Mcdonalds here. Ha! just kidding.
I better sign of now, I just get carried away some times; ok a lot of times.

God Bless Ya!
Jeff

Take it to the Limit,One More Time! (Eagles)

25 (edited by celoi Mon, 04 Aug 2008 14:32:48)

Re: My Report Card(CT Results)

Hi Jeff,

I am just getting back to the cc board. I haven't been here in awhile, now trying to catch up..
I was sorry to read of your ct scan results, but I know you will continue to fight and do well. Keep us posted and "laughing". 

We too are here for you!!!!

Charlene Eloi
Daughter of David Cook