My Introduction
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Matt,
Nice picture of you and your family. Looks like it was a very happy birthday and the way things are going I’m sure there will be many more.
Hugs,
DarlaI’m hoping it’s a downhill journey (in the good sense of the saying) from here…
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.
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!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!
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.
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
Hi Matt. My nameis Sherri and I live in richmond too. I understand your comment about no one responding fast here. I just went through 4 chemo treatments of cisplatin and gemcitabine only to be told yesterday it’s not working. I’m looking into Anderson Cancer Center. How did you decide and get into Mayo Clinic. I’m will to go anywhere that will take me
Thanks for information. I’m sorry your Mayo team hasn’t been helpful. My results won’t be available for another week or so. When I get them, I will let you know what their findings are.
~Kris
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
Hi Matt –
I was reading your posts and saw some similarities and thought I would reach out to you. My initial introduction can be found here:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=12625
When I had my surgery in February of 2014, everything seemed to be healing fine until I found myself with an incisional hernia. My bowel was pushing through the abdominal wall. At the time, I was still going through chemo and radiation and the surgeon wanted to wait until at least 3 months after my last treatment. My last treatment was Sept 15th and surgery to fix the hernia was performed on January 30, 2015. The surgeon who performed my initial surgery also performed this surgery.
During the surgery, she discovered three nodules, two of the nodules were intraperitoneal and one of them was adherent to the peritoneum. One of the nodules was biopsied and was found to be positive. Although not entirely surprised, it seemed a bit odd that all of my scans have been clean. My oncologist thinks this is a recurrence of the same cancer and not new.
My oncologist sent my specimen to Foundation One for genomic testing and I am waiting on my results (will probably be another week or so). I noticed that you too had a recurrence in what seems to be the same area and sent your specimen to Foundation One as well.
Although mutations found will be specific to each person, were the treatments they suggested for you include chemo? Do they also suggest other types of treatments other than chemo?
Thanks for any information you can provide.
~Kris
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
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
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
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