1 (edited by JeffG Fri, 02 Feb 2007 17:13:48)

Topic: Introduction

Hi,  My name is Jeff and I have CC.  It was discovered March, 1999 stage IV.  Have had 2 surgeries. One to remove the left lobe of liver and my gal bladder and the other was one year later for lung biopsy.  Biopsy showed positive for mets.  I monitored by way of CT Scans for a few years and pressed on with my life.  As of two years ago I started Chemotherpy as nodules on lungs were begining to multiply and the tumor that returned to my liver started to enlarge.  I'm about to complete my third different regimen of chemo on Wednesday and next week have a CT to see what if anything has changed.  I've tried many different treatments.  Some may have helped to slow down this beast but who knows for sure.  My prognosis I'm told is terminal and have 6-12 months.  That's what I was told two years ago.  My heart and prayers go out to all of you!  I've been dealing with this CC for quite a while, so I'm completely open to questions and always looking for new suggestion.

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

2 (edited by JeffG Mon, 16 Oct 2006 09:01:58)

Re: Introduction

Same as introduction. Sorry I replied to myself.  Must be the chemo -brain effect. Ha!

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

Re: Introduction

Hi Jeff,
 
    First of all, I wish you all the best and pray for your continued progress!  I do have a few questions for you.  What hospital has been treating you?  It sounds like they have been doing a great job.  Also, was your cancer metastasized when they preformed the surgeries?  Finally, have you had any radiation?  Thanks Jeff!  My mother was diganosed March 06 at stage IV, so I'm trying to get all the info I can!  Her story is in the Introductions too. 
Best of Luck..Alison

Re: Introduction

Hi Alison,

    Initially the Mayo Clinic in MN thought only the left lobe of my liver was involved, but during surgery my gal bladder was cancerous and removed as well.  At the time, I was told all else appeared okay and that I would be fine.  I moved from ND to ME where I was born and raised.  About 12 months after surgery CT showed something on the right lobe of my liver.  A surgeon from the Maine Medical Center wanted to take and do another resection, but after coordinating with the surgeon and oncology tumor board at Mayo, they felt it was a hemoginoma and surgery was cancelled 3 days before Christmas.  Six months later another CT and spots on both lungs.  Biopsy proved mets.  At that time My Oncologist in ME stated there has been no treatment to date that has cured this type of cancer and it was up to me as he stated it could be months or years, that it's growth is so individual.  I chose quality over quanity.  I pressed on tried some special tea, soup, IP-6, I ate wild blueberries and bran flakes and a lot of fish.  We then moved to KS as my daughter was having our first grandchild.  Was followed by Kansas Cancer center for two years having CT's done every 3-4 months.  Spots continued to grow slowly but surely and Oncologist thought it might be a good time to try something.  The last two years I've been getting treatment at the VA Medical Center as I'm retired military.  I have had no radiation yet and I don't plan on it.  The only thing I've done consistently is stay busy, eat daily bran flakes, blueberries and bananas. Also take Multivitamins and minerals. I also take 1mg tablet of clonazepam usually once before bed to ensure I get agood nights sleep; basically slow down my nervous system.  I strongly feel the nervous system and adrenalin makes a difference on how quickly it grows.  Got to keep calm. In hind sight, I'm sure the cancer had already mets but just could not be seen.  If I had maybe done some chemo after surgery would it have helped ? who knows? I pray and do a lot of visualization and listening to healing CDs. Again everyting keeps pointing to restful mind and body that includes nutrients, minerals, and exercise with a lot of bubble baths and aroma candles.  I think I have really rambled away! Alison, This cancer reacts so differently on different people that I got my affairs in order years ago and just pressed on with life and learned to live with the big"C".  I've had my share of up and downs and all arounds believe me; But Your Mom has to be in control not the big"C".  Again , I'm sorry for rambling. If you have any other questions or doubts about treatments feel free to ask, my modesty went out the window quite a while ago.

God Bless You and your Mom!

Jeff     
   P.S.  I'm going to go read your Mom's Intro now.  Stay in touch if you like.  It has been a blessing in disguise just being able to talk openly with people about this challenge of life.

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

Re: Introduction

Wow, Jeff - there are not many people around 7 years after their diagnosis.  You must be doing some thing right.  Your positive attitutude will be a blessing to many here on the website.  Thanks for sharing your information and please continue to do so.

Stacie

Re: Introduction

Hi Jeff

Your story is truly an inspiration to us all.  My CC was diagnosed in 2005 and was resected.  Mets (in lymph nodes plus 1 lung) were diagnosed in April 2006 at which time I was given 3-6 months. 6 months later I feel fine and my mets  are stable.  I did have chemo for 3 months but it was supended due to its affect on my immune system - my body just doesn't tolerate chemo very well.  Having stopped the chemo I now feel much better and my mets remain stable.

I'm now focussing on diet + supplements but am still developing my approach (in the face of inconsistent advice from different sources).  But it sounds like you are 6 years ahead of me - amazing!

I'd be very grateful if you could provide a bit more detail on your nutritional regime and on some of the foods/supplements you mentioned ie:

special tea - is that green tea or something else ?

soup - what kind of soup ?

IP-6 - what's that ?

multivitamins + minerals - which ones and what daily doses ?

Regarding sleep, I agree that it's crucial and it's been a serious problem for me, at the moment I'm using melatonin which seems to help me without any next-day hangover which I always get with other sleep aids. Melatonin is also said to be an anti-oxident and immune system booster.

Geoff

Re: Introduction

Hi Geoff,
The tea was Eissiac (sp) tea I used to drink x2 daily a couple of ounces mixed with filtered water.
The Soup was called Sun Farm Vegetable soup.  Nasty tasting! I also tried their dehydrated vegtable packets.  You can mix that with sugar  free applesauce and is less expensive.
IP-6 with Inostol powdered formula developed supposively by a group of Oncologists to help boost the immune system and kill off cancerous cells.  Can buy at most Health stores or on line. Again, some swear by it others don't. I use for about 3 months.
Multivitamin/Minerals with lycopene I get at Walmart The equate brand half the price of big company brands. I take a couple tablets in the morning with my Bran flakes and bananas and blueberries all mixed together. Again, Bran Flakes Vitamin enriched generic brand at Walmart.
Otherwise I eat what I want when I want.  I love Italian food. I feel a loaded pizza with exra sauce and cheese is a healthy meal.  I make my own; puts Pizza Hut to shame Ha! I eat a lot of veggies and fruits actually canned more than fresh as everything in cans has been peeled and cleaned reducing  pesticides a bit. I've got green tea in the cupboard but never tried it.  My wife has a cup now and then.
You know Geoff, I've search High and Low and tried many different things.  I finally decided to do it my way as I got tired of paying out too Companies who are making billions on these alternative remedies.  If you get a blood test CBC wDiFF  and Metabolic you can see whats L or H and research yourself just by using your search; I feel it's so much less bias.
Sorry, I have a habit of Ramblin on.

Keep on Trucking Geoff!  Chat anytime!

Jeff

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

Re: Introduction

Hi Stacie,

Just wanted to say thanks! This is a a very user friendly site.  You know your right about the 7 years; I had to stop and count the time again.   How time just zooms along.  Well, I guess I'll shoot for a decade who knows?  You know, I emailed Dr. Nagorney about 4 weeks ago to see about some more resection surgery and he basically told me that it is a systemic situation now and nothing he could do surgically.  Excellent Chief of Surgery at Mayo in MN.  Thought I would mention if anyone is looking.

Thanks! Gods Speed to you all!
Jeff

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

Re: Introduction

Hi Jeff G.
My sister watches this site and forwarded me your message.  I was so very excited to hear how well you are doing.  Seven years is fantastic.
I was diagnosed in Sept. 2003 with CC stage IV.  My liver was involved with Mets to both lungs.  I was told I was treatable but not curable and treatabel meant 6 month to 1 year approx.
Since 2003 I have had a met to my left hip and had radiation to that area.  It seems to have taken care of it.
I have had no surgeries.  What ever we looked into for surgery I was told I was not a candidate.
What do I credit my 3 years of being here and enjoying life to?
Diet!  I started to eat a Macrobiotic diet which I believe has taken a lot of stress off of my liver.  It hasn't been an easy transistion but I do my best.
I also do a lot of Visualization and listen to CD's dealing with visualization and and positive affermations.
I go for Acupuncture, Cranial Sacral therapy.  I feel these this keep my body in balance.
I too used E tea for a while and need to get back to that.
I do not take a lot of supplements but do use Milk Thistle, which is good for the liver.
I am on my 4 line of Chemo.  I have a doctor at a larger hospital that felt 4 line Chemo does not work with CC.  I have chosen not to listen to those negitive words and keep moving ahead.
Any suggestions you have or if anyone out there knows of any new treatments being used I would love to hear about them.
God Bless you and keep positive and peaceful.
CLR

Re: Introduction

Jeff,

Thank you so much for sharing your story.    I did not think you were rambling at all.  You were very informative, with a lot of good advice that I will share with my Mother.  Again, I wish you all the best and Thank you for all of your input!!

Alison

Re: Introduction

To CLR & Jeff - Thanks to both of you for your stories.  You give us all hope!

Dear CLR -

I have a pain in my left hip that the doctor thinks could be bursitis, but I'm having scans on November 1st (CT and bone) to make sure the cancer hasn't spread to the bone on that side.  Where was your cancer in your left hip?  Had it metastisized from the cholangio?   My oncologist said that CC doesn't usually go to the bone, but we're scanning to make sure.

-Caroline Stoufer, Ouray, CO

Re: Introduction

Hi Caroline Stoufer,
The bone Met was from the CC.  I started have pain when walking.  At first I thought it may be just some arthritis but had a bone scan.
I had 12 treatments of Radiation to the area and it seems to be stable since then.
I was diagnosed Sept. of 03 and this happened in the spring of 04.

I still have a bit of discomfort in the area from time to time but scans show things to be stable.
Good idea to have it checked out.

Let me know what happens with your scan.
Stay positive. :-)
CLR

Re: Introduction

Hi Jeff - my dad, recently turned 64 has been diagnosed with CC (last April). He is stage IV and his condition seems to be similar to yours with mets to the lungs. The big question and oddity we are still facing is that - thank god - there is still no visible mass on the ducts or the liver. All the cells that have been found where by brushing and for a while some doctors thoughts it could actually be pancreatic cancer and not CC. Was your condition similar in any way?

(Dad is currently on Gemzar and has responded OK, at least with relatively mild symptoms. That said we are still confused because there is no clear pattern and we are not sure what to expect.)

If you or anyone in the forum can relate to this progression we would like to hear from you. I personally feel like we are in the eye of the storm so I would really appreciate to learn from similar experiences.

Thanks and best of luck to you all.

Amilcar

Re: Introduction

Hi Amilcar,
I would be getting a second opinion if the Doctors stated they were not sure.  I have never heard of brushing biopsy but I'm not a doctor either.  My CC started in the liver or the galbladder.  It was seen on scan on the liver but during surgery it was on my balbladder as well.  When it mets to the lungs I had an endoscopic biopsy to determine type of cancer even though I had already been diagnosed with cc. My lungs results were called adenocarcinoma which goes synonomous with cc, heptocelluar, and bile duct.  It is possible to have cancer of an unknow origin.
Ask questions and strongly advocate.  To me I would think they would have done a tissuse biopsy in a manner where they got a large enough tissue sample to properly diagnosis for sure.  I know my surgeon said if he could not get enough tissue endoscopically he would have to open me up to do so.  Check it out ask some more questions. 

Jeff

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

Re: Introduction

Thanks Jeff. This situation with my dad is really complex; he had the endoscopy done and since there was no visible tumoral mass to get a sample the doctors did brushing in and that is how they got the cells. Since dad also had x-rays they found nodules in the lungs  and had a biopsy - that turned out to be adenocarcinoma; in fact some doctors suggested it might have been primary lung but for some reason they rapidly ruled that out.

After that my dad came to Seattle (he lives in Mexico City) and we went to several hospitals in the area (Virginia Mason, Swedish and even an oncology center in Olympia). After all these visits, new CT scans and review of the paraffin blocks there is still no conclusion. We are thinking about Sloan-Kettering and the Mayo Clinic as well; at least so they can review his latest CT which came out essentially identical to the first one (althoug the Dr's think some of the mets are calcified).

Again, thanks for your feedback and hopefully we can make some progress with my dad.

Best of luck!

Amilcar

16 (edited by Caroline Stoufer Thu, 02 Nov 2006 07:04:36)

Re: Introduction

Hey y'all -

I did find out today that the cancer has metastisized to my left hip bone.  I see a radiologist about radiation tomorrow.  CLR, thanks for your info.  My doctor says this is very treatable.  Did you have to limit any of your activities and did you have much in the way of side effects from the radiation?

I have more info at my blog which is accessible from this site or you can go to www.carolinestoufercancer.blogspot.com.  I will know more tomorrow when I see the radiologist.

-Caroline Stoufer

Re: Introduction

Hi Caroline,
My Met was more to the back of my hip bone.  There was a question at one point of it being by my joint but they decided what they were seeing was most likely a reaction to the radiation.

I had 12 sessions of Radiation.  I have to say I had no problem with them at all.  I had no burning or discomfort.  I did have some dry skin and just kept a good lotion on the area.
Also I am on a Macrobiotic diet and my counselor suggested Miso soup everyday  during radiation and continuing on for a couple weeks after.  The thought is that it helps protect the body from the effects of radiation.   I love Miso soup so I followed instructions.

I have not been restricted in my activities.  I never asked about skiing.  I have played golf and walked quite often.

I also am on Zometa for bone strength.  I have been getting it for about a year and a half.  It can cause bone pain and aches for a few days but I found as time went on I had an easier time of it or learned how to handle it better.  It was suggested to me that walking might help with the bone pain caused by Zometa.
the Zometa seems to have kept the C from causing me any new mets in my bones.
YEA!

I was on Xeloda for about 9 months.  It was wonderful not to have to go in for treatment.  I took it on it's own.

I hope you do well with your treatments and I hope some of this is helpful.
I'll be thinking of you.
I went to your online diary.  That is a great idea for keeping everyone up to date.
CLR (Cindy)

Re: Introduction

Cindy,

Rick has posted instructions on the general information page if you would like to set up a blog of your own it is very simple.  If you need help just email rick@cholangiocarcinoma.org

Stacie

Re: Introduction

Cindy-

Zemota is the drug that my oncologist said he wants to start me on soon.  Thanks so much for your response and the miso soup tip.  We are hoping to make some soon.  We're trying to go to as much of a plant-based diet as possible.

Thanks again,
Caroline Stoufer
buckskin@ouraynet.com

Re: Introduction

I haven't written for awhile but my husband Joe was diagnosed with cc July of 06.  We have a blog on this website under Coburn.  He had mets to the lung when diagnosed confirmed by lung biopsy and a large mass in his liver.  They say it is intrahepatic.  Second opinion by Mayo clinic confirmed with the only option being chemo.  Since he is in no pain and healthy otherwise we opted for no chemo and enjoy the quality of life.  We are following a almost raw diet of vegetables, fruits. whole grains, nuts and seeds.  We have a free day once in awhile but have been doing this since diagnosis.  Went back to oncologist at Northwestern this week and she agreed with our decision.  Since there are no symptoms to treat, chemo would be only palliative and we want to enjoy the good days.  We feel the diet and prayers are our best option.  Joe has long wanted to visit the National Parks in Utah and we did that in October.  We go to Bonaire every January to scuba dive and are still planning on that.  His attitidue is great, we have a great support system but Jeff your suggestion about decreasing the stress is the one area we have not addressed specifically.  Even tho he is 66 and retired day to day things cause stress and I know this is not good for him.  We just heard about essiac tea and although he is not a tea drinker we will try it.  Thanks so much for the support on this website.  We feel fortunate that we have had so many years together but hope to continue our jouney togetheri f it is in God's plan.  We will keep all of you in our prayers and continue to keep in touch.