1

(5 replies, posted in Introductions!)

I love this Liz! Fantastic news and a great lesson for others in the future to don't ever give up hope.  So very happy for you!  -Matt

2

(19 replies, posted in Introductions!)

Wow - fantastic!

3

(175 replies, posted in Introductions!)

Thank you all for the well wishes! Debbie, thanks for following along and best of luck to your husband. Please don't hesitate to reach out to me if you have any questions or want to compare notes.  -Matt

4

(14 replies, posted in General Discussion)

I had the same surgery myself in Jan 2014. Best of luck! Don't hesitate to ask questions here...

See my journey here: http://www.cholangiocarcinoma.org/punbb … .php?id=18

I had a clean resection in Jan 2014 and recurrence in Jan 2015. Doing chemo now in hopes of having another resection if it doesn't continue to spread. If it does, I'm going for an immunotherapy clinical trial at NIH/NCI.

6

(175 replies, posted in Introductions!)

MattReidy wrote:

After just one round (2 infusions) of gem/cis my CA 19-9 is down from 457 on 2/18/15 to 278 a month later on 3/18/15. Still "high" but moving in the right direction. I'll take it... Yay!

I'm waiting for labs before starting round 2 (infusion #3) right now.

I'm curious to know what other's experience has been with chemo, gem/cis or other, and the rise/fall of CA 19-9 during treatment.

Did it go up and then down? Just down? No change? Was the rise/fall/steady level an indicator in your case of the effectiveness of the treatment?

Reading the following, I'm not sure if I should be glad or worried that my level dropped by nearly 50% in a month while on chemo.

"Most doctors find that the most important use for tumor markers is to monitor patients being treated for advanced cancer. It is much easier to measure the marker to see if the treatment is working than to repeat chest x-rays, computed tomography (CT) scans, bone scans, or other complicated tests. It is also cheaper. If the marker level in the blood goes down, that is almost always a sign that the treatment is effective. On the other hand, if it goes up, then the treatment probably should be changed. One exception is if the cancer is very sensitive to a particular chemotherapy treatment. The chemotherapy can cause many cancer cells to rapidly die and release large amounts of the marker, which will cause the level of the marker in the blood to temporarily rise."

7

(175 replies, posted in Introductions!)

I'm hoping it's a downhill journey (in the good sense of the saying) from here...  wink

I'm just a regular 48 year old guy doing what he has to do given the situation...

Here's me and the kids this past September, on my 48th birthday.

http://s21.postimg.org/scengc2xv/matts48thbday.jpg

Lainy wrote:

Thanks, Matt, you know I love waking up to these amazing posts! You remind me of the little engine that could and just keep on chugging up that hill!

8

(175 replies, posted in Introductions!)

After just one round (2 infusions) of gem/cis my CA 19-9 is down from 457 on 2/18/15 to 278 a month later on 3/18/15. Still "high" but moving in the right direction. I'll take it... Yay!

I'm waiting for labs before starting round 2 (infusion #3) right now.

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10

(19 replies, posted in Introductions!)

I don't know Dr. Wood at Hopkins but have seen Dr. Tim Pawlik and he is excellent.

See http://www.hopkinsmedicine.org/profiles … hch_doc=no

11

(19 replies, posted in Introductions!)

Sherri,

I've got excellent contacts at Mayo and Hopkins - do you have time to meet perhaps Saturday around 4:30pm at the Short Pump Mall?

Either that or you can call me tonight between 8:30pm and 9:00pm or any time after 10am Saturday.

My number is 804-464-7245

-Matt

12

(175 replies, posted in Introductions!)

Sherri,

I responded to your post in your introduction and would be happy to speak with you in person or via phone or just online. It would be nice, I think, to meet in person if you're up for that.

-Matt

13

(19 replies, posted in Introductions!)

Sherri,

Welcome to the forum. You'll find lots of good information and support here.

I live in the Short Pump area and was diagnosed in December 2013. I'd be happy to meet you sometime and compare notes and give you some feedback in person.

There is hope.

Let me know...

-Matt

14

(175 replies, posted in Introductions!)

Kris,

Wow - lots of parallels in our journeys, for sure!

My FoundationOne report only recommended a few clinical trials with a couple of specific drugs. They did not recommend anything else.

I'm taking upon myself to look for trials/drugs related to my specific mutations and am seeking medical professionals who can help do the same. I've had some luck with doctors at Mass General in Boston who are eager to help. I've given them my report and history and they are going to consult internally and then I'll go up and meet with them to discuss.

Interestingly, and disappointingly, my team at Mayo Clinic has been quite unhelpful. When I ask for their recommendations all I get is 'try gem/cis and maybe another targeted drug'.

Let's compare mutations once you get your report... that sounds so odd... haha

-Matt

15

(6 replies, posted in Chemotherapy)

I had a clean resection in Jan 2014 and recurrence of a 1.5cm tumor in peritoneal cavity in Jan 2015. I'm now on the "standard" chemo plan of gem/cis for a few  months.

I'd recommend testing of your mom's new tumor for genetic mutations via FoundationOne and then a targeted therapy approach via clinical trial, if possible.

If mine doesn't spread I will have it resected (my "Plan A"), otherwise, this is the route that I will go as well. I've already had the genetic testing and identified several trials as my "Plan B".

RE: CA 19-9 result = 10

10 is a low, normal, value for CA 19-9. Mine has gone up over 450. I've see others reference results in the thousands and even over 100,000.

Some people apparently just don't produce that antigen too so maybe your husband falls into that group?

17

(175 replies, posted in Introductions!)

Hi Liz - I'm so glad you found my postings helpful. That's the main reason I put all this out here. I didn't need a PVE because only the left lobe of my liver was resected and it's the smaller of the two. I'm no surgeon but it seems to be a relatively simple and safe procedure compared to the resection itself.

I'm sure if you search or post a general request for feedback on the PVE you'll get plenty of info/advice.

I know that in my case, I didn't even think or worry about the tests, procedures, and resection surgery. I just wanted that damn tumor out so badly I just focused on that. As a result, I wasn't at all prepared for the recovery from the surgery and it was a lot harder than I expected. My expectation was unrealistic, mainly because I had met a man who had received a liver transplant right before I had my surgery and he was up and about, going out to dinner, etc just 3 days (!) after his surgery. I was thinking I'd be doing the same within at least 5 days. Noooo - 10 days in the hospital for me, but I had to be operated on twice, and my wound got infected. After getting out of the hospital it was another week or two before I felt like doing much of anything. I was 47.5 at the time and in great health too. Everybody is different I guess - maybe I'm just a wimp  wink

Good luck with the PVE - keep your eye focused on the end goal (resection and being cancer free) and don't sweat the "small stuff".

Keep us posted!

-Matt

Louie140 wrote:

Matt -

What a journey you have been on. Thank you for responding to you entry about my husband. In reading your entries it has helped me better understand what my husband and myself will be going through in the near future. They have just moved up his Portal Vein Embolism to take place on Monday, March 30th. We were told they will be going through his jugular vein due to the location of the tumor. I've read that this is a very tricky procedure. Did you have to have this procedure done prior to your resection? They said my husband has to have it done because they will need to take 78% of his liver in order to get a negative margin. Does anyone know of any side effects from the PVE?

I will continue to follow your entries and recovery. Thank you for sharing and my prayers go out to you and your family.

Liz

18

(14 replies, posted in General Discussion)

Roux-en-Y (Hepaticojejunostomy) is actually what they do after the resection of the tumor, common bile duct, gall bladder, and part of the liver to "re-plumb" the area so that the bile from the liver continues to flow into the intestine.

dhometexas wrote:

And a bit more- I have read that a Roux-en-Y is a surgery that would be used to remove a Klatskin tumor. Is this the case?

Welcome to the best little forum out there for information and support.

Take a look at my Introduction thread. I too had perihilar CCA and had it resected in Jan 2014 at age 47. Prior to CCA I was in excellent health. That helps.

http://www.cholangiocarcinoma.org/punbb … p?id=11456

I was in the hospital for 10 days and took another 4 to 6 weeks to recover at home before going back to work. I had some complications, however, and actually had two surgeries in under 24 hours and also had some wound infections to deal with. Within a year I was feeling great. Digestion and BMs have never been the same but that's manageable considering the extent of the plumbing work that was done.

20

(175 replies, posted in Introductions!)

My FoundationOne genetic test results from the recurrent tumor in my peritoneal cavity are in. It took just over a month to get them the sample and get the results back.

Gene - Alteration
FBXW7 - R278
KRAS - G12D
PIK3CA - N345K
TP53 - R175H
FAM123B - F173fs*36
MAP3K1 - L920fs*10
MLH1 - K678fs*7

Now on to searching for trials that target these specific genetic mutations...

21

(15 replies, posted in Good News / What's Working)

Congratulations to you! Fantastic news!!!

Julie - This is fantastic news! Like Porter said, move on and enjoy as much as you possibly can in between future checkups. You got this! We're continuing to root for you.  xoxo

23

(175 replies, posted in Introductions!)

Thanks Marion and Julie. Julie, I was "out" for the port installation. I made a point of being adamant about that. Not out enough to need breathing help, but I remember NOTHING.

After a 6 hour surgery to fix a bile leak 18 hours after my original 8 hour resection surgery I woke up on the table after the took my breathing tube out. That was because they were manipulating me to take xrays trying to find a missing needle (!) and it hurt like heck!

That story scares me and every anesthesiologist I tell it to so I make them hit me hard with fentanyl and propofol  when they're doing these "minor" procedures... ha

Nonetheless, I can see what a difficult time they had with the port and it's still tender a week later. I just didn't have to be aware of it at the time and I'm thankful for that.

24

(175 replies, posted in Introductions!)

Hi everyone,

I started my first round of Gem/Cis chemo last week and will have my second infusion tomorrow.

The installation of the port in my chest was apparently more difficult than normal. It took two hours and I've got about ten holes in my chest and neck where they attempted to thread the catheter into my vein along with a bunch of bruising to my neck and chest.

As for the chemo itself, it's been pretty uneventful. My only real complaint is that I'm foggy and sleepy most of the time. I'm not sure if it's the antiemetics I'm on or just my body's reaction to the chemo itself at this point.

I did want to ask: Do most people continue to take antiemetics all the time while doing chemo or only for a few days right after an infusion?

I'm sorry for what probably sounds like a bit of complaining... I'm finding myself using this thread as my blog in hope that it helps others in the future.

On another note, I found this interesting:  http://7thspace.com/headlines/504446/su … cases.html

25

(47 replies, posted in Clinical Trials)

F A N T A S T I C  !!!

Congratulations Melinda !  smile smile smile