Viewing 15 posts - 1 through 15 (of 46 total)
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  • #67949
    lainy
    Participant

    Nikki, how wonderful, sounds good to me! Did they give Dad anything for the nausea? I think 2 X a year for scans sounds about right. Of course he probably won’t make a decision until he gets this next Scan report. I bet you all can’t wait until Nov 1st! Try not to worry too much as we really never know but I like to use the phrase that we will remain realistically optimistic. Looking forward to more great news!

    #67948
    nikki4470
    Participant

    Just another quick update…my dad could not handle the gem/ox combo, so he is now just doing 3 weeks on and 1 week off of gem. We went 10/3 and they decreased his dose by 25% because of his platelet count. He will be done on 11/1. He will get a base line CT scan, then it’s just back for regular CT scans and blood work. His Doctor was not there, so we asked the nurse how often he would get scans and she thought maybe twice a year. I thought that was a little too spread out, so we will see what the Doctor has to say. His CA-19 is still hovering around 26 which is fantastic! Other than the chemo completely making him sick to his stomach, he is doing A OK! His Doctor called him 1 in 1,000! I find it very difficult not to keep worrying…I don’t want to get too excited, but I feel like we should celebrate his good health. We are very blessed and we thank God everyday for each day he gives to our family.

    #67947
    Randi
    Participant

    Great news Nikki!! I know the feeling of getting good news after all of the news is bad leading up to it. Please keep us updated.

    Enjoy the good news.

    Hugs,
    -Randi-

    #67946
    gavin
    Moderator

    Yay great news Nikki!!! Just what we love to hear and I can just picture your dads eyes all welling up on hearing this! Hope you are all celebrating and looking forward to hearing more good news from you!

    My best to you and your dad,

    Gavin

    #67945
    jeeyoung
    Member

    Oh! I’m so happy to hear such great news! Keep up the good luck and savor this moment! And thank you for sharing, Nikki!

    Jeeyoung

    #67944
    lainy
    Participant

    YIPPEE for the Miracle Dad and his wonderful Daughter, Nikki. Your post brings music to my ears and heart! I am so happy for you and my wish is for the success to continue. YEA!

    #67943
    nikki4470
    Participant

    First CT scan post surgery and it’s CLEAN! CA-19 is normal! Best part of receiving the good news was seeing my dad’s eyes well up with happy tears for the first time in almost a year :) He received his first gem/ox post surgery treatment…6 more to go! My dad is a walking miracle.

    #67942
    marions
    Moderator

    Nikki…thanks for sharing this fantastic news with us. Congratulations. The healing from this surgery will take time and digestive issues are part of the game. But it will continue to improve with time. Enzymes before each meal may prove to be beneficial. Scan anxiety, as we call it, seems to come with the territory. Please, let your Dad know that tons of positive wishes are heading his way. Like you, I believe that he is looking at a clean scan.
    Hugs,
    Marion

    #67941
    lainy
    Participant

    WHAT? NO! A stubborn Italian. One suggestion Nikki, have him graze on food all day rather then trying to digest a big meal. Also nothing too spicy or fried. I was so lucky as Teddy was so cooperative. I just have a feeling the nausea and some of the pain could be related to the way he is eating. Also walking is good. The ONC had told T to walk just to the end of the driveway first then like every couple of days increase his walk. That also helps with digestion. Not sure how you make the sauce but we always added baking soda at the end. It takes out all the acid from the tomatoes and sweetens the sauce. You can see the acid just foam up out of there. I ASK YOU WHERE ELSE IN THE WORLD CAN YOU TALK ABOUT CC AND GET COOKING HINTS AS WELL?

    #67940
    nikki4470
    Participant

    Thanks Lainy! It’s funny how their taste buds change as well as their reaction to foods they have been eating their whole lives! I guess it takes a long time to figure out what works and what doesn’t! We talked to his ONC about his ailments and they did offer suggestions – talking to a therapist, a low dose anxiety medicine, seeing a nutritionist…he is on pain medication for the cramping, but luckily he has been able to decrease his dose overtime. He hates taking any kind of medication at all! Although they give him all this advice, it is only him that can make the decisions on how he wants to handle his ailments. He can be stubborn and mostly I think because he doesn’t want to come off as “weak”. I keep telling him how strong he is and that it’s okay to need help. The doctors said that a lot of the cramping is from his digestive tract healing and growing. We hope that is the case!

    #67939
    lainy
    Participant

    Nikki, I am thrilled to read your update today! Attitude is not everything, it is the ONLY thing! Got to get those Italians back to work where they love to be, I know. I am sure his CT Scan will be just fine as he is doing so well. My Teddy had a Whipple and it really takes awhile for he recovery, after all it is the largest surgery to the human body. You mention that Dad has nausea, cramping, exhaustion, anxiety and I am wondering if you have told the ONC. The only thing T had was tiredness. After a Whipple your digestive system is thrown for a loop and you have to be careful what you eat. Your tastes change too. T was a chocaholic and couldn’t stand sweets ever after. He couldn’t even eat pasta for a long time. Can you imagine a Sicilian not having his red sauce? My only suggestion is to ask the ONC for something for what ails him. If he is in discomfort that interferes with his healing. Wishing you the best and can’t wait to read about the good CT!

    #67938
    nikki4470
    Participant

    Hello CC Family!

    Even though I don’t have much to report, I wanted to give a quick update because I know how much it helps for other people reading the posts on this board to hear good news.

    My dad is closing in on 2 months post Whipple/Liver Resection and is doing remarkably well according to his wound nurse and his doctors at Dana Farber. His wound only has about two inches to go before it is completely closed. He will start his one cycle of chemo on July 25th. His first CT scan is July 23rd (which he is already pre-stressing)! His doctors at Dana Farber told him that he has so much to be thankful for and that he is exactly where he wanted to be when this whole rollercoaster started back in September of 2012. They are very hopeful that he CT scan will be clean. I know it will be too :) He is gaining energy back and eating a lot more than he was. He has his bad days too – nausea, cramping, exhaustion, anxiety – but like I said to him, he has more good days than bad. He is going to start working again soon – he is a bartender/manager at our family owned Italian restaurant. I think this will help get him back into the swing of life and will take his mind of the C word.

    I can’t tell you how important positive thinking is. We are thankful for everyday and go out to the world with the attitude that we beat CC because we did and we will continue to do so!

    Nikki

    #67937
    pamela
    Participant

    Hi Nikki,

    I am so happy to hear the great news. It sounds as though your Dad is doing great!! Lauren’s incision from her surgery the end of March did not get infected, but hers opened right at the bottom of the breastbone. Her surgeon wasn’t too worried about it and said it would heal eventually. Plus, she has a second surgery next week, so it would be silly to fix something that is going to be opened again. Eating has been the big challenge for Lauren as well. I hope your dad gets stronger and stronger each day and has an easy time if he has chemo. I am definitely on the same page as you when you say there is hope and never take no for an answer. Amen to that!!

    Love and hugs,
    -Pam

    #67936
    gavin
    Moderator

    Hi Nikki,

    Thanks so much for sharing your dads great news with us all!! It is brilliant news indeed, and like Lainy says, it doesn’t get any better than that! My fingers are crossed for the rest of your dads recovery to go smoothly and let us know how he gets on with things.

    My best wishes to you and your dad,

    Gavin

    #67935
    lainy
    Participant

    Nikki, YEA!!!! for such a fabulous report. Doesn’t get any better than this. Again patience is the #1 tool. My husband had his scar open too, I think it’s a fistula. It seems to take forever to heal but it does go with this territory. But it’s really all the best news and we have a new Super Hero! Thanks so much for the update.

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