mattreidy

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Viewing 15 posts - 76 through 90 (of 163 total)
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  • in reply to: Introduction #87353
    mattreidy
    Spectator

    Wow – fantastic!

    in reply to: My Introduction #80322
    mattreidy
    Spectator

    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

    in reply to: Klatskin Tumor #87067
    mattreidy
    Spectator

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

    mattreidy
    Spectator

    See my journey here: http://www.cholangiocarcinoma.org/punbb/viewforum.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.

    in reply to: My Introduction #80316
    mattreidy
    Spectator
    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.

    in reply to: My Introduction #80313
    mattreidy
    Spectator

    I’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.

    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!
    in reply to: My Introduction #80307
    mattreidy
    Spectator

    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.

    in reply to: Introduction #87345
    mattreidy
    Spectator
    in reply to: Introduction #87341
    mattreidy
    Spectator

    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

    in reply to: My Introduction #80306
    mattreidy
    Spectator

    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

    in reply to: Introduction #87339
    mattreidy
    Spectator

    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

    in reply to: My Introduction #80303
    mattreidy
    Spectator

    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

    in reply to: Treatment following reoccurrence #87318
    mattreidy
    Spectator

    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”.

    mattreidy
    Spectator

    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?

    in reply to: My Introduction #80301
    mattreidy
    Spectator

    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

Viewing 15 posts - 76 through 90 (of 163 total)