My Introduction

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  • September 23, 2015 at 3:34 pm #80374
    mattreidy
    Spectator

    Results from my check-up at Mayo this week are mixed. I’m about two months post-radiation treatments.

    The good news is that there is “no measurable disease”. i.e. There are no visible tumors or other visible signs of cancer, which is fantastic.

    The bad news is that the cancer marker in my blood is at an all time high (just over 1,000) which leads us to believe that the cancer is there but just not visible. There is some “thickening” of some bile ducts in what remains of my liver which may or may not be cancer. I opted not to have an ERCP to look and do a biopsy because either way, I’m planning to start chemo again locally in Richmond and continue to monitor things.

    All of my other labs are completely normal and I feel just fine.

    Are there others who did radiation and then had elevated CA 19-9 numbers and/or thickening of the bile ducts? I’m hopeful that both are just a result of the irritation from the radiation.

    July 11, 2015 at 1:16 am #80373
    iowagirl
    Member

    Okay…..I know this is going to sound vain….but my hair…..looks pretty bad. It’s been doing great…..nice volume….but this morning…..I blew my hair dry….and it just fell flat. The only difference,…hotel water and hotel shampoo. But, it has grown back, so for that, I remain thankful….and on better hair days…it actually looks kind of like I wished it would back when i was a teenager. :) Really wished it would have looked better for the picture though.

    It was wonderful to meet Matt. He’s a very sweet guy. We shared pictures of our families(he has a beautiful family)….and stories. I think I knew Matt’s Cc history by heart, but my husband didn’t and I think it was an eye opener for him. Matt “looks” good…..and if you didn’t know what he’s going through, you would never have known. Though technically, I’m not old enough to be his mom….I wanted to “mother” him. If you didn’t know his age, you would probably think he was barely 35. What a sweetheart he is. We also talked a little about work history…and I think my husband would have loved to have talked with him for quite a while longer.

    Matt…thank you for taking some of your time to meet with us today. We wish you only good results from your treatments…..and soon, you will get back home to that family of yours. Life may never be the same again….but I’ve come to understand, it doesn’t have to be….it only has to move on.

    Julie

    July 10, 2015 at 9:44 pm #80372
    marions
    Moderator

    So happy you were able to meet in person. Thanks for letting us share by taking the great picture.
    Hugs,
    Marion

    July 10, 2015 at 8:31 pm #80371
    gavin
    Moderator

    Superb! What a great pic of you and Julie, so glad that the 2 of you were able to meet up!! :)

    July 10, 2015 at 6:27 pm #80370
    mattreidy
    Spectator
    Lainy wrote:
    LOVE< LOVE

    Lainy, Julie even gave me a special hug just from you! xo

    July 10, 2015 at 6:19 pm #80369
    lainy
    Spectator

    LOVE< LOVE

    July 10, 2015 at 5:50 pm #80368
    mattreidy
    Spectator

    I’m happy to have met my second fellow CCA survivor, in addition to myself.

    Julie T. (Iowagirl) and I had a chance to meet while we were both at Mayo Clinic this week.

    It was great to finally put a face with a name and meet in person to share stories and give each other encouragement!

    Julie_And_Matt.jpg

    June 23, 2015 at 2:31 pm #80367
    darla
    Spectator

    Matt,

    Thanks for letting us know how things are going. Hoping this all works out for you. Let us know how things are going when you can. We care.

    Hugs,
    Darla

    June 23, 2015 at 1:22 pm #80366
    sherri
    Member

    Matt,
    WOW!, Curative not just Palliative is the miracle you have been fighting for. I know the treatments are rough and bringing you down but on those bad days just remember what it’s for. Your kids and being there for all those special times with your family, birthdays, graduations and weddings. Keep fighting.

    Sherri

    June 23, 2015 at 6:37 am #80365
    mbachini
    Moderator

    Matt,

    Hang in there, it is hard, I know, but you got this!! Take your nap, eat your protein and keep winning the war on this cc…..we are all here for you, cheering you on! Hugs, prayers and tons of good thoughts coming your way!
    Melinda

    June 21, 2015 at 6:08 pm #80364
    gavin
    Moderator

    Hi Matt,

    Great to hear from you and thanks for letting us know what is happening with everything. That would be great if you and Julie could meet up, and remember, we need pics of you both if possible!

    I hear what you say about getting tired of treatments and no wonder, you have every right to talk about that and I wish I had some answers for you. I do like Marion’s idea about seeing if you can take a break from things for a while, would that be a possibility for you?

    Hope you 2 can meet up!

    My best to you Matt,

    Gavin

    June 20, 2015 at 2:12 pm #80363
    lainy
    Spectator

    Oh, Matt, I do have a feeling that good is going to come out of this, CC did not know what it was getting in to when it met Matt the valiant warrior!

    I do hope you and Julie and you can meet up, that would be awesome. I always get jealous when 2 members meet as I wish we could all meet!!

    Wishing you the best luck in the world and as Marion said, a break would be a fantastic thing to look forward to.

    June 20, 2015 at 11:40 am #80362
    middlesister1
    Moderator

    Matt,

    Great to hear from you. Thanks for checking in and letting us know how you’re doing. It is a long time to be away from home, but as you alluded to, it’s probably very nice up there now and extremely hot and humid in Richmond (have to find something good in what you’re going through besides potential cure)

    Best of luck,

    Catherine

    June 20, 2015 at 7:06 am #80361
    marions
    Moderator

    Matt….. Cancer diagnoses, treatments and side effects undoubtedly interfere with quality of life. No crystal ball allows for a clear picture of the future, but we must assume that your treatments allow you to have a future. Perhaps you are tired, depressed and anxious and that in itself is not the best time to make decisions of any kind. Is it possible to get a break from treatment prior to the beginning of gem/cis? You may just need some off time, regain your emotional and physical strength.
    Hugs,
    Marion

    June 20, 2015 at 4:13 am #80360
    iowagirl
    Member

    Matt…..First…..bravo….as much as you are growing tired of treatment….you have so much to live for…..in the long term….that I would venture that you know it is worth the try to kick this cancer . I get it about doing the chemo and losing some feeling good time. But, you know that if you didn’t do this…and it did come back again….you’d be kicking yourself and asking, “What if”?

    HEY……I think we’re going to meet finally if you’d like. My husband and I will be up there on the 9th and 10th of July for my next scans. I have blood tests and scans during the day on the 9th….so free that evening (which is a Thursday). Then, we have the consult and get results on Friday morning. Normally, we’d be doing this all in one day, but my oncologist has now only morning hours, which makes doing it in one day impossible.

    I’ll be in touch with you again before we go up to Mayo. We always stay at the Kayler Grand Hotel right across from the clinic for convenience. So, maybe we can pick you up and do dinner if you feel like it…or just sit and chat for a while if you’d rather. We can see where you’re at , at that point. It’s only a short three weeks away.

    Julie T.

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