1

(188 replies, posted in Introductions!)

A little update for the record...

I had my 5th infusion of chemo (Gem/Cis) on Wednesday, 4/15/15, and by Friday I was feeling very poorly (no energy and lots of diarrhea). My extended family was gathering in NY for my father's 80th birthday party so I drove from VA to NY for the weekend and felt worse and worse all weekend.

After getting home to VA Sunday night I pretty much didn't get out of bed for 48 hours. I tried to stay hydrated but wasn't eating much at all.

Infusion #6 was scheduled yesterday, Wednesday, 4/22/15. I went in and had labs which all came back normal even though I still wasn't feeling well at all. I decided that 5 infusions was enough. Either it's helped by now or it's not going to.

My goal with chemo was two-fold; 1) "check the box" for attempting the "standard of care" so that I can join clinical trials that require that and 2) prove that I can keep the one small tumor I have in my peritoneal cavity at bay with no further metastasis so that my surgeon is willing to operate and remove it.

I've been doing the chemo locally in VA and will be heading back to the Mayo Clinic next week (week of 4/27/15) to have a chest CT and abdominal MRI to see if the chemo has prevented any further metastasis. If that's the case, I will also be meeting with my surgeon to discuss the possibility of operating to remove the tumor. It's near the head/neck of my pancreas and there is a possibility that a Whipple might be required. I sure hope not...

-Matt

2

(188 replies, posted in Introductions!)

Hi everyone,

I thought I'd document my recent experience with Neulasta for others in hopes that it might be helpful.

After my first round (2 infusions) of gem/cis chemo, I went back for the start of my second round, but my labs came back showing that my neutrophils (one type of white blood cells) we low. I think mine had dropped to about 800 and my oncologist requires them to be above 1,000 before an infusion.

I waited 5 days, went back, had labs, and the neutrophils were back up to about 1,300 so we proceeded with chemo infusion number 3.

The family and I had planned a week on the beach in Mexico for Spring break the week after finishing chemo round 2 and I was concerned that my neutrophils would bottom out while there, leaving me susceptible to getting sick.

As a result my oncologist agreed to give me a shot of Neulasta to boost the neutrophils.

I did some reading about Neulasta and got really concerned about potentially severe bone pain, an apparently common side effect. More reading suggested that taking Claritin could prevent/lessen the bone pain side effect.

I was given a shot of Neulasta in my belly the day after infusion #4 (a Tue) and took my first Claritin that same day. I continued to take the Claritin daily and had no issues thru Saturday. We were leaving for Mexico Monday morning and I was thrilled to have escaped the bone pain.

Saturday night, while laying in bed, I started feeling what I thought was kidney pain. I could feel throbbing pain with EVERY heartbeat. Tossing and turning, wondering what it was for a few hours. The throbbing pain was constant, but sometimes much worse than others. I had never felt anything like this before. It finally dawned on me that this must be the bone pain that people had warned me about. It wasn't my kidneys, but my pelvis that was throbbing so. Surprisingly, I took some ibuprofen and the pain dissipated quickly.

I continued to take ibuprofen and Claritin on Sunday and I never had the same intensity of pain again.

I'm sitting on a lounge chair by the oceanfront pool at the house we're renting in Mexico writing this now and am happy to say that the pain never did come back this week. I'm still taking Claritin daily until I get back home, just in case, and do feel an occasional throb in the pelvic region, but not something that prevents me from doing anything.

http://s17.postimg.org/z61m6soyz/mxpool.jpg

That's fantastic Andy - It sounds like you really know your way around. What trial was your wife considering?

Andy12 wrote:

Sure Matt.  I find the best way to make decisions is by talking to people who have already gone down that road.  I'm pretty active in that I reach out to people via a combination of emails, phone calls, and Facebook.  For example, my wife is considering joining a particular clinical trial and we had some questions about how it works.  I scoured Facebook to find people talking about the trial then instantly messaged them.  Within a few minutes I was on the phone with another CC patient who spent an hour with me on the phone telling me about his experience with this particular trial.  My wife and I are now armed with more information to base our decision.  All this was done in a matter of a few minutes because I'm willing to reach out and make phone calls.  Not everyone is comfortable doing that.  Perhaps I could help people do those kinds of things.

Welcome Andy! I'd be interested to know more about your wife's journey and the type of information you've found to be most useful so that others with similar journeys can benefit. Would you mind sharing?

5

(2 replies, posted in General Discussion)

Hi Julie,

I've attached some history of my labs for you to compare to - not sure if it'll help you but here you go.

Note that the severe changes in my results were around the time of my resection/surgery in Jan 2014.

-Matt

Creatinine
http://s22.postimg.org/cgzf6efdp/Screen_Shot_2015_03_31_at_9_01_53_PM.jpg

Hemoglobin
http://s21.postimg.org/olxsh0oib/Screen_Shot_2015_03_31_at_9_01_25_PM.jpg

6

(188 replies, posted in Introductions!)

Likewise Sherri. It was so nice to meet someone else in person going through a similar journey. I'm anxiously awaiting your feedback of the trip to MD Anderson. No matter what, you'll know more after that and can at least formulate a plan.  We will get together again!  -Matt  smile

7

(14 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

8

(31 replies, posted in Introductions!)

Wow - fantastic!

9

(188 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

10

(21 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.

12

(188 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."

13

(188 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!

14

(188 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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16

(31 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

17

(31 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

18

(188 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

19

(31 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

20

(188 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

21

(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?

23

(188 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

24

(21 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.