lisas

I am delighted for you both. While I have extrahepatic cc, I’m about to undergo IMRT and I’m hoping to share a similar report down the road!

And, my brother was named Mark, so always happy to hear good news for a Mark!

Hoping your upcoming scans are good. I’m about to start IMRT myself in a few weeks. When I asked my medical and radiation oncologists why IMRT instead of proton therapy, I was told that they think the IMRT is better because of all the tentacles on my Klatskin tumor (extrahepatic perihilar). They feel there is a better chance of not missing some of it with the IMRT rather than the proton. I was willing to travel for proton if I had to – Baylor won’t be opening their proton facility until 2015. No one said a word about insurance not covering it for cc.

I think the waiting 2 months for new scans when I’m done will be awful. As I said in my signature line, I’m an impatient patient.

Hopefully, the stent will help a lot. I had a blocked bile duct too I had per cutaneous drains and that helped bring my bilirubin down to normal range (I also had an issue with the tumor squishing my duodenum and preventing me from eating or drinking without throwing up. I had to have, in essence, a gastric bypass, to re-rout my stomach, but what a difference it made in how I felt! Hopefully, her procedures will give her relief, so she can eat and get energy back.

You may be surprised that she doesn’t lose her hair. My oncologist hold me that most people on my chemo regime (gemcitibine/cisplatin) don’t lose their hair and that was true for me. A nurse told me it might thin, but it didn’t even find that to be the case. For some reason, the chemo they give breast cancer patients makes them all lose their hair. I’d gladly shave mine off and go bald the rest of my life if it gave me an advantage, but at least keeping my hair was a tiny perk.

Lisa

Since you are closer to St. Louis than Houston, Barnes/wash U is a good place for a second opinion. Dr Chapman there came highly recommended to me by others on this board and, even though I was diagnosed with extraheoatic cc here in Dallas, I sought a second opinion from him. He was in agreement with my doctors here, which, while it wasn’t happy that none of them felt I was a surgical candidate, made me more comfortable with the chemo treatments I’m doing.

Best of luck to you both as you wade your way through what is confusing/frightening/frustrating.

Hi, Theresa,

I turned 56 in August, although I like that you think I write “younger.”. I thought of 56 as young. And, I thought of myself as super fit. In fact, the week before I was diagnosed, I did a 100k charity bike ride in hilly Nashville. In hindsight, I complained a lot about how awful the food was all weekend at the hotel and I’m guessing now it really wasn’t that bad and that it was the beginning of my tumor making itself known. The jaundice came a few days later and progressed fast.

In reading back through your earlier posts, How high was your mom’s bilirubin? Has it come down? Mine was high to start and I looked like a waxy banana (according to one doctor), but it has dropped constantly since I got my PTC drains and so far, knock on wood, is well within normal range (0.3).

Wow, I was having trouble keeping things down early on and it wasn’t normal nausea. I could drink water and then throw it up quickly. It turned out my tumor was squeezing my duodenum and that and a plump lymph node were keeping me from getting any nutrition, causing the nausea and making me feel really, really sick. I thought I was dying. Fortunately, I am being treated at a large hospital that treats a lot of cholangio patients and figured it out really quickly. I had a surgical procedure called a gastrojujenostomy (gastro j) which is what, in essence, they do for gastric bypass patients. It re-routed my stomach around the blockage and saved me (for now), allowing me to get to chemo and work on attacking the cancer. So, something to ask about. I’ve written about it on my personal thread here and on a thread in the general discussion. You can search my posts by my name if you want.

Hope they can figure it out.

Lisa

Ps, my doctors not only encouraged me to get a second opinion, they said they’d help me get one wherever I wanted. I disagree with their saying one isn’t necessary.

Whatever I can do to aid in this, I’m up for doing. Please let me know specifically what I could to to help establish a protocol. I am very lucky that once my oncologist and surgeon knew that I was in the hospital and dehydrated, they knew just what to do within minutes of getting a CT scan and seeing where the blockage was.

Honestly, living with the surgery has not been hard once I got over being sore (although, at 56, I was in pretty darn good shape before all this started in late September, so my experience may not be typical). My surgeon chose to do an “old fashioned” normal incision and not do the procedure laproscopically because he said “I was just a skinny girl anyway” and I’d have a smaller incision that way versus the multiple incisions he would do laproscopically. Tell me I’m a skinny girl and I’m putty in one’s hands.

I was just exhausted for weeks after the surgery and that really surprised me – I’m generally a high energy, active person, but man, it was a chore to do anything and I walked around like a little old lady, sort of hunched over and very slow. But, your abdominal area doesn’t really like to be messed with all that much and it fights back at such an intrusion and recovery does take more time than one would expect.

I’m back to daily walks at normal pace (haven’t really gotten on my bike much, but that’s coming soon). I’ve also used one of those giant balls that you sit on and gently bounce to get some exercise (the physical therapists at Baylor helped me plan out some exercises with it).

It took a pretty good while to get much appetite back and I had to eat really small meals – sometimes just a few bites and I was done, but taste (and this may be due to chemo, not the Gastro J surgery) and appetite and the ability to eat more than a few bites have all come back.

Even if the recovery were far worse, I absolutely believe I wouldn’t still be here without the surgery. I was getting zero nutrition, losing weight at an alarming pace and just sick as a dog.

Wow, I’m sorry that your aunt is so sick, so quickly. She’s my age, so that hits home. I think of 56 as young! I wish I had answers for you. I think every single person’s experience with this nasty disease is unique. Some, as I’ve discovered, don’t get much time after diagnosis, but others do, despite good and bad periods.

I have a hard time accepting there is nothing that can be done, but that’s me personally. My biggest question would be how much experience the doctors/hospital where she is has with this very specific and rare cancer and if it’s not a lot, I’d be trying hard to get her in for a second opinion somewhere they are experienced.

Don’t worry about venting. Vent away.

Lisa