jeffg
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Dear Darla,
Thank You so much for your post. Your friend of your sister’s hit it on the nail head. I’m so sorry this relentless disease snuck up and and took your Husband so quickly. You are right though he is in a better place with eternal peace , no physical or mental pain. In my particular case it has been 9 1/2 years of a constant battle . Up and Down and all around. Lost track of how many different chemo regimens, Ct Scans, blood test, and I do remember two different bouts of radiation of the liver and a soft tissue tumor tickling my spinal roots, except it doesn’t tickle. Well, They say there is not much more to they can do. I stopped chemo for a while to see what it felt like to be human again. Feels good. Don’t know my next course of action or if I decide to do anymore. It would have to be a trial I think or something really novel. I should be thanking the God for letting me hang around for so long ,and I do. My family have been quite supportive, but how much longer am I suppose to pull them through this torture.
I’m sorry Darla ,I went on rambling not knowing really what I’m trying to say. I look at your situation and ask why? and then I look at my situation and ask the same question. As you read through the many post of individuals who have and still are fighting this nasty disease, you’ll see so many variances of when,where, different treatments etc. world wide. This site has kinda been my life for quite sometime. As a moderator I try my best to offer suggestion and keep the questions and answers going and many members, patients and caregivers on this site are so warm and heart -caring people it’s amazing. They have supported each other time and time again, usually from first hand experience. They are the most unselfish and giving group of individuals ever. I’m sure they will be reading and sharing with you in the near future. The weekends are usually a little slow on responses.
Now I have to apologize for my post being so long. So much to talk about and get off your mind on some days. Feel free to ask any questions or whatever, when your ready. With things going as quick as they did, I can imagine your mind is still spinning. Again, Thank You So much for sharing and may God’s love and support follow you and your family.God Bless,
Jeff G.Wabals, I’m sorry to say any information provided or put on the internet is strictly volunteered information. There is no way what so ever to keep things confidential on the internet, we all know that. The only caution is that we do not violate any trust of members or laws. The Idea of raising awareness for this type of cancer is a humane and nobale thing to do and the only way is by public awareness and support for research. How do you think the cure for polio came about? Public awareness has save countless number of children’s lives. I’m no way attacking this idea, just want to make sure we do it legally. If it is not legal to do, I’m sure it won’t be done. Lastly, there are over 200 different types of cancer. Cholangiocarcinoma is just one sitting on the bottom of the recognition list for research; and with out research no cure. I respect your opinion, as I hope you will mine. I sense we are on the same page ,just want it done right and legal.
God Bless All!
Jeff G.Dear Sherri, Sorry to hear things have gotten worse for your stepdad. My cancer came back after resection of my left lobe and gallbladder. It is back in my right lobe of liver,both lungs,rib bones, soft tissue near heart and eshopagus, soft tissue tumor tickling my spinal roots again and the lining of my stomach. Surgery is out of the question, radiation may help for awhile, and still some chemo trials I could try. Being straight up with you, once it has mets evwerywhere, trying different chemos could slow the progression or may not help at all. There are novel treatments in the works, but years from being applied to humans. Self advocation is your number one weapon right now. Being persistent and letting the doctors know your expectations. If no call backs ,you call them. We all respond differently to treatments, so no one can say it is time to give up. After saying that you and your stepdad will know when and if it is time to throw in the towel. Thed oncologist and surgeons are only willing to go so far. Some will push it as far as you want but it don’t mean the outcome is going to be any better or worse. It’s not fair I know. Get some more opinions from top surgeons and oncologist. Then decide from there haw far you want to go and what type of treatment your stepdad is willing to take on. Sometimes the location of tumors or the number of tumors can prevent any treatment other than trying to extend life and pallitive care to keep you comfortable. I’m sorry to be so blunt, but I’m really only describing my situation. I am taken a proactive approach and doing (EFT) Emotional freedom technique to see if increasing my body’s energy by dumping negative emotionas from the pass may help in more ways than one , i.e. pain. emotional, progression. I still believe in hope and always will. Some may say that is denial but there is a big difference. Keep knocking on doors and get the answers to your questions, but remaining realistic, as heart wrenching as it can be also is a player. Wish and pray for the best for your stepdad.
God Bless,
Jeff G.Hi Darla… Thanks for sharing. My sincere condolences for the loss of Jim. Please feel free to jump in when your ready. We welcome you to a very supportive site. Loosing a loved one to such a horrible disease and sometimes with little or no warning, is so emotionally challenging. Darla, remembering those special loving moments will help. And always remember whay Jim would say to you right noe, something very supportive I’m sure.
God Bless,
Jeff G.Hi Lainy… I admire your robust efforts and support you all the way. I don’t think there is a problem using the Introduction post in support of our efforts for the Oprah awareness project. However, I would run this by Stacie and our legal advisory gurus first. The only thing causing me to be hesitant is two Federal Laws, the National Privacy Act of 1974 and the Health Information Portabilityand Accountability Act of 1996. (HIPAA) I would say all the information posted on this site is concerning someones health and I would not want you to have to get in any trouble. If the information we use, can in any way shape or form can be connected to, or trace back to the patient, there could be a problem. I don’t have a problem with mine but others may, for some reason we are unaware of. Just withholding the last name may not be enough. This HIPAA Act is pretty strengent and dealing with it for many years, a consent of release form was always required. Even the consent form had to be very specific, who,where,why and have an expiration date as well. You know how awkward government programs and laws are. I would want you to play it safe and sure. I’ve been a memeber for so long ,I can’t remember if there is a legal user agreement rules and condition dislosure for this site and use of information with in. Don’t let this stop progess though ,you guys are doing a great job collecting this information. Who knows it might not apply in our case?
Bless Ya and Teddy!
Jeff G.Hi Jan….. Mayo Clinic ,Rochester, MN Is where my twisting and bumpy road bgan, 9 1/2 years ago. My Doctor was Dr. Norgorney. He is still there. I’m not sure. I’ll have to double check but Dr. Gore was doing his internship and assited with my surgery. It sounds so familiar. Wish you and your Husband the best! With alot of intervention and God’s Will, I’m still fighting the battle but would not have had it any other way.
Bless ya Both!
Jeff G.Barbara Ann,
Please accept my heart felt condolences. Awaiting for that invitation is usually all our loved ones are waiting for. He departed as you said, with grace and dignity, so beautifully done with all his family. May God’s peace be with your Father for ever more.
God Bless You All,
Jeff G.Sophie—-Answer to question one is: Yes
Answer to Question two is: Yes
Answer to Question Three is: Yes
1. I hit a road construction cone with my side view mirror about a year ago when taking this regimen. The cost of a replacement mirror $25.00 from a junk yard. I never go anywhere now unless it is immediately after a good nights sleep or nap, even if it’s a 15 minute power nap. Any distance someone else is always with me or driving if I feel the least bit drowsy.2. High protien drinks like Ensure really make me alert. And you should be drinking at least two if not three a day.
3. I have taken 1 week, 2 weeks, 1 month, and right now I’m taking 3 months off to get the feel of my body and where my energy needs to be focused.
Sophie , Your in control and call the shots. If you need a getaway just say doc I’m taking a break and need to delay chemo for a week or two. You need to take time to feel good and happy! In my opinion!
Bless Ya,
Jeff G.Charlene— I’m with you guys all the way! I pray and send my love and support. I still do believe in miracles, although I accept reality as well. They don’t always come to you. But I would give up mine anyways, for some child who wants nothing but to reach age five.
God Bless You Both,
Jeff G,Welcome Gale, Glad to hear of your successful operation and ordeal with CC. That Vena cava was about as close as you could get to having some serious complications. Wow! Unfortunately side effects of such a major operation are more than not unavoidable. It’s great to hear your back at work and I wish you a continued positive future. May I asked what part of the world did you have this delicate surgery. Other members are always looking for good surgeons. Did you do any post op chemo or radiation?
Again welcome to the site and please feel free to jump in at anytime. The greater the interaction, the broader our knowledge becomes.God Bless,
Jeff G.Irene…. My sincere condolences. May God give you the strenght during this time of sadness. Irene, Grief can be handled in so many different ways. I’ve often thought of it and it’s relationship with memories. Is there a difference? I’ll have fond memories for years, but I for some reason don’t feel it’s the same as initial grieving upon when someone passes. I would go for the surgery Irene, Your a great person who, has plenty to offer those less fortunate than us. There are plenty of people less fortunate ,believe it or not.
God bless You, and May Your Mom rest in peace.
Jeff G.God Bless,
Jeff G.Hi Carol, You have been doing your homework or should I say research. That is awsome about your daughter’s tuitions! Where there is a will ,there is a way. You have definitely proved that one. I think you have been totally resourceful Carol. It’s amazing how it all adds up, during rough times, to put it mildly. Thanks Carol , I’ll have to check in to the property tax break. I imagine some of it is State by State, like you said, but definitely worth looking in to.
Bless you and Charlie!
Jeff G.
P.S. I have to keep remembering to check recent posts. I keep forgetting all the time.Hi Amy, Marion said it all. Very happy for your Mom. But like Marion said for peace of mind, have the scans compared. If there has been no change on any of them, My opinion your Mom would be doing great. I can’t believe the doctor said it was rare for a cancer to jump from one side to the other. CC can and does jump any place it chooses, close by previous or distant. You would think some one played pin the tail on the donkey with my recurrence. Any hoot don’t be arlarmed, just compare scans. I can’t believe they don’t do that either knowing the history. The requesting physician can add that to the consult for future scans. I’m so happy for your Mom and you Amy. Stay in touch, we love success stories.
Bless Ya!
Jeff G.Hi Jen, You have got me stumped on the cataract lenses. As far as metal and MRI’s, I have titainium rods and screws in my back and have been getting MRI’s for years. It does cause a lot of metal artifact blurring of images surrounding that area. They are primarily concerned about loose metals, like srap metal that could cause internal injuries from moving around is what I have been told. Hope all went okay with MRCP?
God Bless,
Jeff G.
