jamie-d

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  • in reply to: Octreotide, Sutent and Nexovar… #50618
    jamie-d
    Member

    Patti I just wanted to say thanks for posting this info. I made a copy of the papers on octreotide and gave them to my Dr last month. He did some more checking and is ordering a blood test my next visit to evaluate if it may be effective. WooHoo anything that may help is greatly appreciated, especially when it is a non- chemo drug with little side effects. Options are so limited, so it is nice when something new is found. Dr was not aware it was being used for CC so it was great information! This board is so great for so many reasons, including sharing what may be helping. Thanks again and God Bless,
    Jamie

    in reply to: David has passed away #51193
    jamie-d
    Member

    Chrissy I am so very sorry for the loss of your beloved husband. I will keep you and your daughter in my prayers. God Bless you and your family.
    Jamie D

    in reply to: A new update on Dad #50909
    jamie-d
    Member

    Jen,
    How blessed you Father is to have you!!! Just wanted to let you know that you, your Dad and family are in my prayers. God Bless you,
    Jamie

    in reply to: Mayo Clinic #50942
    jamie-d
    Member

    Johanna, I was originally seen by Dr Quevada at Mayo in Oct 07. I did not “click” with him and changed Docs after a couple of months. I was also told that resection was not a possibility and that I was looking at months. I started on Gemzar/Xeloda and had a good response. In June 08 I had a 65% resection of my liver. Most surgeons wouldnt have tried but I was blessed to see Dr. Nagorney and he agreed to give me a chance. I went a year with clear scans but then it came back in my lungs. At that time the oncologist told me 6-9 months. This Oct will be 4 years since I was diagnosed. I have left Mayo and am currently being seen by the original oncologist I saw. I prefer his attitude and beliefs. He knows I dont want to give up yet and want to fight this and he is willing to fight for me. For me one of the most important things was feeling comfortable and trusting of my Dr. It may change along the way and I saw 3 different oncologists at Mayo. Each had their place in my treatment but when I felt I needed something different I wasnt afraid to move on. I am currently on Folfox and had a scan last Thur. Drs nurse called Friday to let me know it was improved but will get details at appt tomorrow. They have had to decrease dose and frequency because of low platelets. Do not give up the fight. My odds were dismal when I was diagnosed and told it was impossible when I asked about 5 year survival. I want to prove them wrong. All they can tell you is about statistics, but we are more than statistics. I have a strong belief system and believe that God is the ultimate healer and will determine how many days I have in this world. If you want anymore info about Mayo or just would like to chat, feel free to message me and I can give you my number or we can email. Also, if you would like to meet when you are at Mayo let me know when you’ll be there. I live about an hour north of Mayo. Take care and keep fighting!!
    God Bless,
    Jamie

    in reply to: Not the way to start a Monday … #50393
    jamie-d
    Member

    I will be praying for her. It is such devastating news for a parent. Last month on our local news they talked about a 17 yr old here in Minnesota that is also battling aggresive liver cancer. So hard to understand…. Please keep us updated on her progress. Again, I will be adding her to my prayers.
    Jamie

    in reply to: People who just don’t get it #49135
    jamie-d
    Member

    Boy Missy your post really hit me hard. I feel exatly the same way. In the beginning people called, stopped by and now I hardly hear from anyone. What is the hardest is my own daughter. She turned 20 this summer, got married to a guy she only knew a few months, is expecting a baby any day, which was one of my goals to live long enough to see a grandchild (thought it would be her older brother). She has cut me off entirely the last 4 months. She wont call or visit. I dont know whether I will even be allowed to see my grandchild (in Dec/Jan I was so sick and hospitalized twice, I didnt even know if I would live to see the birth). She talks to her Dad when she wants/needs something but ignores her brother and I. Long story but I think the husband and mother-in-law have alot to do with it. But bottom line is I am her Mother and she shouldnt allow anyone to manipulate her into doing what she is doing. There are no do overs. She cant take back that they wouldnt come for Christmas after they had promised they would. That could be my last and they ruined it for me.. I cried most of the day. Everyone says that she will regret it someday. It hurts more than I can describe but as my son told me, I have to concentrate on the positives and staying alive as long as I can. I can’t do that if I am crying and depressed all the time. So I am somewhat at the point where I say to heck with those that choose to not enjoy my company while I am still here. They wont have the opportunity when I am gone. I enjoy those that are here and do care. Focus on the positives and what you do have not what you dont. I’m not saying it is easy, it took me months to get to this point and there are still days that I am disappointed and hurt. WHen I read other daughters taking care of their Mothers and missing them it really hurts. The cancer was really growing when I was at the lowest and now that I have started focusing on my son and the positives I had a more stable scan last time. Stress really does effect you. Even my oncologist said that the situation was having a negative effect on my health. Sorry to ramble on but I guess my point is that we cant control how others act. I feel like others have posted, that you are there for friends and family when they are in need. Alot of people run from illness or when the going gets tough. Give his parents the benefit of a phone call talking to them honestly. As a parent nothing would keep me away from a sick child, as a child nothing kept me away from taking care of my parents. Unfortunately not everyone feels the same way. Like others have said, they will regret it later.. but that will be there problem. Sorry again for the long post, but this topic really hit me hard. I know exactly what sadness Kevin is feeling. Take care and God Bless,
    Jamie

    in reply to: My husband’s treatment was discontinued today. #48543
    jamie-d
    Member

    Melanie,
    I am not at that point yet so I dont have any advice from experience. As I have been thinking about what my wishes are I would say that comfort is the biggest concern. So pain relief would be one of the things I would discuss. The only other thing I can offer is prayer for you and your husband. I am so sorry that you both are having to go through this… I am sorry that we all are having to deal with CC. Wish they’d find more options for us or a cure. God Bless,
    Jamie

    in reply to: Devoncat no more #46299
    jamie-d
    Member

    Hans, thank you for the update. I am glad that you didnt have any problems bringing her home. She was so blessed to have you as her husband and have you in her life. We all miss her wonderful posts and presence on this board. May God Bless you during this time. I will be thinking of her and saying a prayer for Kris on Saturday.

    Jamie

    in reply to: Dave’s Journey is over #47870
    jamie-d
    Member

    Beth I am so sorry for your loss. You and Maycie will be in my prayers. He was an inspiration to many. He truly was “superman”. God Bless you both…

    Jamie

    in reply to: Not so great update #47197
    jamie-d
    Member

    Great news!! So happy for you and your family!
    Jamie

    in reply to: Bad bad news from Mayo #47374
    jamie-d
    Member

    Rick I am so sorry to hear this news. Hopefully in the morning the news will be better. I am an hour north of Mayo and if you would like I would be happy to come and keep Cindy company. Just let me know if I can help in any way.
    Jamie

    in reply to: Bad news about my Dad #47256
    jamie-d
    Member

    Lisa, I dont know what to say. I am so sorry to hear this news. I have been having a few conversations with God lately about giving us more than we can handle. I’ve been sharing with Him that I think He overestimates me :) I know you and your family dont need more to deal with. I will add your Dad to my prayers along with the rest of your family. I will pray that they got it all and there are no other signs of it. If there is anything I can do dont hesitate to ask. God Bless you and your family.
    Jamie

    in reply to: Devoncat no more #46235
    jamie-d
    Member

    Hans,
    Thank you for sharing your last few days. My heart is breaking for you. Kris was an amazing woman and her love for you was always obvious. I don’t know how to put into words all the emotions I am feeling. Just know that there is someone across the ocean in snowy Minnesota that will be praying for you as hard as I prayed for Kris. May God Bless you and bring you comfort and peace.
    Jamie

    in reply to: Mom lost her battle… #46375
    jamie-d
    Member

    Dear codergirl, I am so sorry for your loss. You were such a loving and compassionate daughter. I know that you made your Moms last days wonderful. She had a wonderful Christmas, birthday and New Years. You were with her and let her know she was loved. Take care of yourself now. God Bless,
    Jamie

    in reply to: How much warning #46388
    jamie-d
    Member

    Rick, as another patient with cc I can totally understand your post. I have been feeling the same way lately but especially today when I learned that Kris had passed away. Yesterday I talked to my Pastor and started planning my memorial service with him. Today my husband and I finally did our wills and trust for our children. I at times worry about what my death will be like… will I be in pain and suffer, will I go quickly and quietly, will I know days or weeks in advance so I can say my last goodbyes? God only knows the answers and most of the time I am at peace with that and leave it in His hands knowing that He knows best… but then there are the thoughts that creep into my head and I think of things I want to be around for, need to do,etc and then the worry may start. What I am trying my hardest to do although not always successful is to try and get things prepared so that if the Lord takes me home I have as much done as possible (will never be able to get all the projects I want to do for my kids finished but I have good intentions :) ), also I try and think of someone else each day and do something for them, and last but not least I always try and tell those I care about and love how much they mean to me and how much I love them. I am getting a port on Friday and am starting a new chemo regimen on Monday. I am a little afraid of the new treatment but am praying it will help. Take care of yourself, hug those 2 beautiful children and your wife, tell them how much you love them and enjoy everyday. God Bless,
    Jamie

Viewing 15 posts - 16 through 30 (of 228 total)
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