jeffg
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Kristen… Just my personal opinion. 70 years old, Surgeon’s very confident of clear margins, Chemo known absolutely to be toxic and could have adverse reaction including death. Its not any safer than any other chemo but we take it because we are in a life threatoning condition and have no choice. Is he a real healthy 70 year old or is there other questionable issues? As we all get older ( the normal aging process our bodies find it more difficult to fight off illnesses and infections. Right now looking at it at face value; he is now healthy why compromise it. I’ve been through enough chemo regimens that I lost count. I would say think on the positive side in (my opinion) and monitor. If chemo will work, it will work then( if it returns) as much as now if it were present. I chose to wait almost 6 years post resection and glad I did, as Gemzar did not work for me. I had a wonderful unresstricted life for 6 years. It started going down hill when I started Chemo. Why compromise his immune system now. Let him recover and let his own immune system prepare in case of a return. If you do chemo now then his immune system is weakened automatically, maybe giving recurrence an opportunity to return or return sooner. Tough Family and Individual decsion! You’ll have to go on your gut feelings as there is no sure thing either way. Weigh the pros and cons. will it work for me or not. Read the fine print of your chemo patients advisory. God’s strenght for you all.
God Bless,
JeffHi Tess, Sorry to hear your Dad is in so much pain. Has he had a MRI lately? I’ve been fighting pain for a while and founds out it had got in to my spine and caused vertabral fractures. I will be having a Vertiplasty/Kyphoplasty Tuesday to hopefully relieve the pain. My situation is inoperable as well, but when it comes to pain management you really got to insist on x-rays to determine fluid in lung cavity, CT to determine soft tissuse tumors that could be apply pressure to your spinal roots, and MRI to determine vertabral fractures or involvement. Also make so your refered to the pain Management clinic of what ever hospital your at. They are more experienced with pain management than the every day oncologist I’m afraid to say. Yes the tumor it’s self can be causing the the pain depending on it’s location and size. But the got to check for mets. Even if your going to recieve only pallative treatment, they need to deal with the pain until comfortable. It can be done. Personally it sounds like fluid build up or possible mets in the vertbrals or ribs. They can controll the pain. advocate for it loud and clear. I’m on 300MGs Morphine and 50MG fentnyal patch daily with 8 mgs hydromorphone for break through pain. When it gets in the bones it can get pretty bad and you have to keep a constant level of pain meds and have anti nausea meds on stand by. Wish you Dad the best possible but if you don’t get the pain under control ,it’ll wear him out. Yes , even with a large support group it is so lonley deep inside.
God Bless You Both!
JeffHave been scheduled for “Kiphoplasty” tuesday 7:am. Basically they’ll go in with needles and fill the two fractured vertabrals with a bone cement. basically like reinflating an innertube. It realigns the spine and puts back the appropriate space to take pressure off my spinal roots and allow me to walk straight and lay on my back again without pain. If you google it , it will show a video on one of the sites of how it is done. Sure hope it works as well as the movie shows. Out-patient sugery. Probally spend half day or little more.
JeffLainy. that’s great ! Face it, they didn’t have much of a choice with a tiger like you on their tail. That’s Grrrrr eat!
JeffDear Charlene and Mary Anne, May you both find the strenght needed some how some way. I just returned from the hospital from having another liter of fluid drained from my lung cavity. I was asked a few times, who was my hospice doctor. I guess that is telling me something. I feel the way you two do in a way, except how can I let go of my sweatheart. I surely don’t want to be a burden on her ,although she doesn’t look at it that way. She just wants what is best and least painless but with plenty of love as well. We have all come so far and made progress with trying to make the end of the journey as loving and natural as possible. The only thing is ending of life just isn’t going the way I had hope, well not completely if you know what mean. It’s like being born going backwards. I’m so sorry for you two and my wife. I too wish it was over and I was in the hands of God. I don’t know how far behind I am of Joe and John, but I’m completely happy and accept my future. it’s okay. I love God but I love my family as well ,which makes it so hard. I guess if this Tarceva does not turn out to be some type of miracle, then my miracle will be joining John and Joe when the time is right for us. Bless you all! And bless Mark and his family for such a loving and supportive web site and beautiful vision. Should I send this post ? sure, my heart says yes. I’ve asked my daughter and wife if and when I’m unable to continue posting, to simply let you know just that; as I desire privacy until my obituary is read. Am I getting to far ahead of myself ? No I don’t think so, you just never know. Hope is in the air and always will be ! some will be able to make use of it ,some won’t.
God Bless,
JeffHi Mary Anne, I ‘m glad you found this section, the site has made a few changes in the last couple years. I’m sad to hear Joe has entered hospice , but glad he is still able to get around at home. I pray for a calm and loving time for the remainder of Joe’s journey. I pray God’s strenght for you all.
God Bless,
JeffHI Sue, My sincere condolences. May Ray rest in peace. Unfortunately this CC is giving me several different complications with pain included. But hopefully the Pain Manaement tean can keep up. It is so wierd as I have manage to keep it away from major organs and it decided to got soft tissues and bone route instead. Will just keep on motivating and hope this Tarceva does some good.
God Bless,
JeffHi Gary, Thanks for your reply. Glad to hear your having more good than bad days now. Sounds like you you had top notch care at Duke. Let’s hope patients’s body cooperates for now on hey? Jump in any time gary ,we love to chat about everything if you have checked out some other section. We like to keep on the positive note for the most part, but deal with what ever pops up.
God Bless,
JeffHi Gary… I’m so sorry to hear all the complications you have gone through! Wow! And still not finished yet? Do you know why all this happened ? This is a very unusual occurrence. Were you allergic to something? Again this is really a rough road or should I say detour, as you are yet done. I and all of us here on the site wish you nothing but a positive recovery real soon. You have already had your share of ups and downs. Your whipple stitches let loose because of the infections? Did you have this done in Myrtle beach area? Feel free to talk about what happened if you wish. I can imagine it was quite a trauma for you.
God Bless,
JeffHi Lynn… Sorry to hear about your husband. Don’t second guess yourself or feel guilty about the sitiuation. Other than my initial resection 9 years and 7months ago, I have gone to local cancer centers close to home. I could have chose to go to all the major centers and and by now been flat broke, house repossed or morgated to the hilt. I ‘ve compared the treatment I’m recieving at my local cancer center with that of major centers many times just to make sure they are on track with the same protocal, of which you’ll find that they are, in most if not all cases they are. Everyone on this site has always suggested getting second and third opinions, personally, a good surgeon is who ultimately makes the call if you are looking soley for surgery. Also Oncologist and Radioncologist who know their stuff knows the score as well if your looking at other alternative treatments. You say you have been to a surgeon who specializes in livers. If you want to get one more opinion from a surgeon for peace of mind that is your choice. Is his tumor confined to one lobe or metastic else where? That make a difference without a doubt. I don’t ever say give up faith or hope, But I always look at reality as well. I’m in the situation right now about getting another opinion from a surgeon who specializes in removing tumors from my spinal area. This opinion is not to find a miracle cure but possibally buy me more time on this good ole earth. I’ve done my research and with this type chemo, I almost already know the answers I’ll get at my consult. The trauma of the surgery may jeopardize the quality and quanity in my case. He could say nothing he can do or leave it up to me. So, I’ve yacked away Lynn, but the choice is yours. Memorial,Sloan Kettering , MD Anderson, Mayo, all good choices. There is a list of others above in the menu area under Newly Diagnosed or Cholangiocarcinoma. Is your husband healthy other wise? That can make a difference as well. I wish there was a clear cut answer Lynn but there isn’t. If you would like to share more about his situation, type of tumor or tumors and locations and size, I would give my personal opinion, or others. Most important is what does your husband want to do? I wish you both the best outcome possible and look forward to hearing more from you. Maybe we can add a little more infor to help make your guys choice a little bit easier, although it never is an easier choice. who knows?
God Bless,
Jeff G.Peg…My sincere condolences to you and the family for your lost of Aunt Pat. May she rest in peace.
JeffHi Kris and John… Yes It was Gavin from Scotland-Dundee. Last post I remember is father tryied going out in the sunlight with his gloves off and started to get red skin, so they were diappointed that he had to wait longer before going outside. If you Google” Gavin” above and click in one of his entries there is an e-mail link through Cholangiocarcinoma if you would like to try contacting. It looks like Octber ist was last entry. Or type in Gavin in the search forum and open one of his post.
Jeff
P.S. Sorrry Gavin’s e-mail was there a couple hours ago. It must have been removed for privacy reasons. I surely hope all is well with his father.
JeffHi and welcome John, I think everyone said it all. I was Stationed at Raf Lakenheath for for years. Have stopped in Mildenhall many times. Nice little pub on the right not far from the roundabout coming from Lakenheath. Also a Bed and Breakfast on the right across from air terminal. Can’t remember names. Probally to many pints of Dark Brown. Wish you all the best mate in battling this disease. Positive mind and lots of hope.
Cheers!
Jeff
