1

(13 replies, posted in General Discussion)

"HECK" no, Lainy, I was the one doing the escorting. I look pretty darn cute in my class A uni too.  :0)

My last scan was scheduled at 6:45pm. Would have been OK except when I checked in they asked if had had been drinking contrast for the past hour. Nobody had even mentioned drinking contrast or asked me to come pick some up.  Really ticked me off. So, I began drinking contrast, the MRI tech agreed to stay later and I had my scan sometime around 8:30pm.

There's my story and I'm sticking to it.

3

(13 replies, posted in General Discussion)

Trevor,

I am 57 and consider myself the youngest person on this site.  :0)
I understand the days when you just want to get mad and yell at something or someone. Let it out the best way you can, 'cause it just has to come out.
Then, take a deep breath and know that many many people here love you and share your pain and anguish.

I don't know Dr. Javle personally, but I have somewhat of a connection. My Onc used to work with him in Houston before moving up here to Salt Lake City. I hear nothing but good about him, but with this disease, no doctor is a total miracle worker.

Keep your chin held high, kiddo. We are pulling for you.  Yes, I had a great 4th of July. My wife and I rode with the Sheriff's posse in a parade yesterday, then enjoyed a picnic and played on the lake with friends. Hope you did something fun.

4

(6 replies, posted in Introductions!)

Hey, mmking, looks like you are just up the road from me. Huntsville is not too far from Hooper.

Wow, is all I can say about your mom. What a constitution. I went through 2 1/2 rounds of gemcitabine/cisplatin and it just did a lot of damage and didn't stop my cancer from growing.  I'm jealous   :0).   

Welcome to this sight and please keep us posted.

5

(14 replies, posted in General Discussion)

Mary,

Words do not really do justice to how you must feel right now. Just know that my thoughts and prayers are with you and your family as you proceed through the next phase of your lives.

6

(16 replies, posted in General Discussion)

Thanks, friends. I won't be disappearing. Just going to be pulling a lot of weeds this weekend.  Quite cathartic.

7

(15 replies, posted in General Discussion)

Hang in there, Kris.

Janet, my heart breaks for you and admires you all at the same time. God bless you and your family. Yes, Pete is in a happier state.

9

(16 replies, posted in General Discussion)

Well, some bad news for me. I was getting set for my 2nd chemoembolization when the Onc decided he wanted scans first.  I had chest and abdominal CT done Wednesday evening. Thursday morning we were told I now had mets (couple of small ones) on my lungs and the area of adenopathy in the hepatic area had enlarged further, so any further embolizations were cancelled. Now, they would like me to participate in a clinical trial.

Going to take a few days for me to gather my wits back together and decide what I want to do from here.

10

(12 replies, posted in Introductions!)

Welcome, Dana.  Prayers being sent your way. Give my best to your Mom and let her know there are lots of folks pulling for her.

You are a great example to me, Cathy. Congratulations. I am told I will not ever be cancer free, but I plan on proving them wrong. 3 years from now, I plan on whooping and hollering with a big ole' smile on my face.

Here's to your continuing great news for 3 more years.

12

(6 replies, posted in Introductions!)

Cheri, my thoughts and prayers are with you and your family. "Cling to that which is good".

Nothing like this kind of news to "take your breath away" in the bad sort of way. The bad way is to land on your tailbone and get the wind knocked out of you or the proverbial "getting hit in the stomach with a baseball bat (cricket bat, for those in the UK). My heart strings are pulling tight for you and your husband.

Susan, find out all you can and never "settle". The fight has begun, so give it all you've got.

God bless you both and hang in there.

14

(8 replies, posted in Introductions!)

EDH,

I had never heard of "Bland" embolization until you brought it up.

I did well on my chemoembolization. The procedure went smoothly, although the doc said he couldn't get chemo beads everywhere he wanted because my previous chemo (only 5 treatments gem/cis) had already damaged some of the blood vessels.

I had major pain for a while. It was supposed to be just an overnite stay but I got an extra night because we couldn't get pain (in the liver) controlled via oral meds until the 2nd day.  Pain gradually dissipated after 4-5 days, then it was gone.  I've been a little tired, but nothing like it was with gem/cis.  I'm scheduled for a second treatment in a couple of weeks.

4Neil,
Just want you to know that my prayers and thoughts are with you as you begin to put life back in order. I have this disease myself but I cannot imagine the feelings you had to go through in such a short period of time.

I spent considerable time yesterday just sitting in the shade in my backyard, feeling a little bit of a breeze, listening to the animals, birds chattering, horses chewing hay, chickens scratching in the dirt. It was truly peaceful and wonderful.

Take some time to sit and ponder the great times, feel the breeze and listen to the birds.

God bless you.

Lita,
Welcome to the family. I feel my chest swell with concern and love each time I hear of a new case of CC. I have inoperable intrahepatic CC myself. My first experience with chemo didn't fare so well either. It did nothing as my tumors continued to grow (although I consider myself blessed at the slow rate they are progressing). Because of the way I reacted to chemo, the docs went right to the interventional radiology route rather than trying different chemos. I had my first chemo embolization 4 weeks ago. The next one was scheduled for next Thursday but I am having a flare up with the ulcerations in my small intestine. Dr. wanted chest/abdomen CT before the embolization but does not want to inject dye while I am having flare up..........so everything will be moved back a while.

Just continue to believe and enjoy every tiny experience.

Let Oli know we love him and are pulling for him.

17

(12 replies, posted in Introductions!)

Dianne,

Welcome to this group. We really do feel for you and with you. I am 56 with intrahapatic CC with lymphadenopathy. The folks on this site are so experienced and knowledgeable. It is a real comfort. Please let your husband know that there are lots of people here sending prayers, wishes and sharing his pains and concerns.

Fortunately, my bilirubin has never been abnormal to this point. I had a few weeks where other enzymes spiked a bit, but they headed back down.

Please let us know how he progresses and if there is anything we can do. Again, our prayers are with you and your husband.

18

(10 replies, posted in Introductions!)

Absolutely more hugs and prayers coming your way from out west. Positive thinking and living gives our bodies incredible power to fight things.
Give my best to your brother. He needs to know that there are legions of folks who know about him and are pulling for him.

19

(5 replies, posted in General Discussion)

Jose,
I truly send all my love to you and your sister. God bless you both.

Dr. Sonnenday, how extraordinarily kind of you to chime in here. Thank you for extending a hand to folks in need.

Katheryn, I too know the pain of cholangitis. The pain is very intense, like kidney stones.

Please relay to Patrick my concern but also my love and prayers.
One day at a time...........and he can lick this.

People keep asking if I am concerned about my condition. I just smile and reply, "I'm not going anywhere"................and I really believe it.

22

(16 replies, posted in General Discussion)

Sorry to all.  I forget that in this business, no news is not necessarily good news.

My first chemoembolization went OK. The Dr. told us that he couldn't get the beads into all areas he wanted to because my previous chemo treatments (I only had 5 treatments of gem/cis) had damaged some of the arteries in my liver. Oh, and by the way, the results of this treatment hurts like a son of a gun. It was just supposed to be an overnight stay, but since they could not control the pain via oral medication, I got to stay an extra day until I could manage the pain.

The chemo beads plug up the arteries leading to the tumors, so they get their blood supply cut off.  Your body tends to signal intense pain when tissue gets blood starved.

I just kept telling myself  "it's just the darned tumor tissue dying".

23

(16 replies, posted in General Discussion)

Well, I guess it's about time I came out of hibernation.  I got so disgusted trying to get my y-90 radioembolization approved that I just hid out so I wouldn't think about it. Insurance initially denied, then denied 2 appeals. Then, state law allows me to file through them for a 3rd party impartial appeal. they hire that out to a company, and this company sided with the insurance company. After that, only recourse is lawsuit for breach of contract.  Now, we did find some "peer approved" literature supporting the procedure, unfortunately, the language in those reviews said "further investigation is suggested".  Well, this language just went to prove the insurance company's position that the procedure is still "investigational" for this specific cancer.

My wife went to Hawaii for 2 weeks in April and I can't say how much that was enjoyed.  I could have stayed forever had it not been for family being so far away. I should add that after visiting my regular doc...who again prescribed some testosterone, I felt better in Hawaii than I have felt in over a year.

The day after I returned from the islands, I had a chemoembolization done. All went well with that and we will repeat the procedure on May 31st, then scans every couple of months to see how the tumors are progressing or retrogressing.

Just thought I would jump back in and say HOWDY to y'all.

John, I am patiently waiting for a chance to try the Y90 radioembolization. I have ready quite a bit about it, including some recorded trials at different hospitals. The procedure, and they tell you this, does not cure the disesase, but is quite effective at knocking back and reducing the tumors to buy time. Some have had very very good results with it.

25

(61 replies, posted in Introductions!)

Bkat, I sense that although your dad hurts, he is at peace now with his journey. Quoting from a Beatle's song (and changing a word)....."All HE needs is love"........."Love is all HE needs".  Don't forget the pain meds, though.

I truly feel heavy with feelings for you and your dad and family. God bless you all.