jeffg
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Cherrlye, May your Mom rest in peace. A prayer for you and your family coming your way.
God Bless,
Jeff G.May Jerry and David rest in peace. God’s strength for both families during these sad moments.
Jeff G.Dear Robyn, I am so sorry to hear about your Husband. The ammonia levels you really should ask you Oncologist and explain the trip and see what is best. Robyn, your post comes across as if you are trying to find ways to go on this trip regardless of your husband’s condition. If your Husband is coughing up blood and his ammonia levels are out of control it really doesn’t sound like travelling would be beneficial to him. Does he really want to go? Is this something he really wants to do? I’m sorry if I’m coming across in a wow factor, I believe in living everyday as happily as possible but does your husband really have the strength to begin with.
God Bless’
Jeff G.
P.S. High ammonia levels will cause confusion, sleepiness, and bleeding from the stomach or intestines. Will cause heart and or kidney failure. There is medcations to help reduce the amount of ammonia because the liver will no longer turn in to urea. He should probally see the doctor and get something prescribe as pallative care.Amilcar… Yes it certainly could be as I just went through that. I’ve had back pain and rod implants for about 15 years and have had back pain most of the time. A montha ago I felt a different pain and I calmed it initially with medication and soaking in hot tub. It progressed within 2 months and I had to get an MRI done and they found tumor activity t-12 and s1 it was putting pressure on my spinal roots. I ended up on high dose morphine until it was knocked out with 3-D radiation. I still take pain meds but that is because of the nerve damage caused by the compression of the tumor before irradiated. An MRI is the best route to take in my opinion. It could be mets to the bone somewhere or like you said progression of of any current tumors. Everyone was so routinely focused on my primariy locations they missed the little gremlin that snuck up on my spine. Wish you guys the best and hope your Dad gets to the bottom of the problem real soon.
God Bless,
Jeff G.Hi Suzanne… My name is Jeff. About 25 years younger than your Dad and have been battling cholangiocarcinoma for 8.5 years. It’s hard to give advice not knowing your Dad and his complete medical condition. I can say only from experience that when a severe heart condition exsist it really complicates everything. My Dad had all 4 main arteries 85-95% blocked and they could not do surgery. Due to the arteries being so brittle that even trying a multiple by-pass would have ended his life. 4 months later in a nursing home he passed away. I say this because chemo can be extremely cruel to your viens and arteries and could surely cause fluxcuations in blood pressure high or low. Also, would certainly be of higher risk of internal bleeding just from rupture. Suzanne, as far as time line of life expectancy it is so individual. Your overall health and how far advanced the cancer is plays a big role and also a positive attitude as well as one could expect comes in to play. If your Dads symptoms have been relieved by replacing his stents and they can’t see anything elsewhere and he has been living somewhat quality then hang to it. Radiation Ihave had external no beads on two occassions. Beads can be pretty tough post two weeks from what I have heard. Suzanne, Have you consulted with a heart surgeon about the effects of chemo or radiation? I’m sorry about your Dad’s situation and if it was my Dad I would love him and support him with what ever he wanted to try but But if I had full say I would not put him through the living hell of chemo. I’m sorry for being so blunt but I have been doing chemo for three years now and it’s a roller coaster of discomfort and bad pain you would not believe. God Bless your Dad and you and the family, But unless I missed something completely your Dad has a better chance of surviving longer by just keeping the blockage clear and not trying any chemo or radiation beads, especially if he had a heart attack just replacing the stent. You might ask about a different kind of stent, I think it is called a coil type that helps with keeping blockage clear. Others members on this site have more knowledge about which type of stent is preferred. Again , I’m so so sorry to hear of your Dad’s condition and can only pray and wish for the best outcome. Everyone on this site understands the shock and anger and the whole cycle of emotions you are going through.
Jeff G.Hi Carol…. I was not given the opportunity of using cyber knife as there seems to be a criteria on the size of the tumor. Now this is what I have been told, that it is used primarily for brain and neck tumors or tumors 2cmx2cm or smaller. I was told that it would take forever to radiate anything larger and would expose me to more radiation than allowable. Thats why they went 3-d conformal IMRT. They are able to widen and narrow the beam and encompass the entire tumor without affecting good tissuse. You have got me wondering now. I’ll have to do some more calling and research on this matter as it may be an additional option for me in some tumor areas. Thanks for mentioning it. It may be a local thing going on here.
God Bless,
Jeff G.Carol…I have done research on this issuse of liver transplant and it’s pretty clear cut. Like Betty posted, basically liver transplants for cholangiocarcinoma is not an option due to the high relapse rate. The only exception that I know is if a particular hospital is conducting a research protocol. Even if a clinical trial is established the requirements are pretty reserved for those who are diagnosed in the early stages of the disease and that doesn’t happen that often either. Mayo in Rochester, MN turned me away years ago. Personally, I know that radiation treatment has come a long way. I had 3-D conformal radiation to my liver Dec.06 . It was done on my right lobe as my left was resected in the past. I have had no growth, in others words it has been stable from then to now. During this time I had mets to my ribs and spine bone. It was determine those tumors were an easy target and I had radiation again and so far so good. I wish I could pass along more uplifting suggestions. Please remmber this is just my personal experience with trying for a transplant and my use of radiation. I wish you and Charlie the best on whatever path of treatment you decide upon.
God Bless,
Jeff G.Hi Kate….. Thanks for the hugs. Sounds like your time in Greece went well. I’m still at the grind stone of cc. Plan on vacation or as they say in England Holiday in a couple weeks. Actually have my wife’s brother and sister in law coming over from Jolly Ole England for a couple weeks. Their first time flying over the ocean they are really excited. I told them we could do some tornado chasing but they passed on that Ha! Hope things are going as well as can be for you and your family.
God Bless
Jeff G.Dear Mack Family, My sincere condolence to you all. I am so sorry for your loss.
God Bless you all !
Jeff G.Thanks Everyone! Already feeling 99.9% better. The last time I had pain in my tumor areas and had such a drastic drop in my blood counts is when I had carboplatain a couple years ago. Back then CT follow up showed tumor reduction, so like a couple of you mentioned the shooting pain I think is a good sign for me. Also I didn’t mention yesterday but I have never had a cough and this week still no cough but clearing of some congested fluid from my lungs showed red specks. Until I get a Scan I’m going to accept those red specs as tumor waste. Like Roy Rogers and Dale Evans( Until we meet again, Happy trails to you) Ha! I’ll be having another nurse assessment and blood work Monday. Will post update then.
God Bless You All !
Jeff G.Hi Amilcar… I have had mets to both lobes of the lungs since early 2002. The progression has been very slow. One reason is the chemo I have been taking for my primary cc of the liver. Other explanations I can not give as I don’t know. Oncologists I have been involved with basically say there is no known chemo or treatments to cure lung mets, just to slow progression. If it is progressing slowly you could go as long as 12 years before having any significant complications. I’ve also been told that until tumors reach a size of 4-6 cm I would not probally recognize any symptoms. As far as stopping treatment, if it is not working after 2-3 treatments I stop my regimen and discuss other options. That’s why I’m on Taxotere first cycle as Xeloda and oxyalplatinum stopped showing any signs of combating the cc plus I had further mets pop up to my bones. We took care of bone mets with 3-D conformal radiation. Combination treatments I have had done for the last 3 years, but as with other regimens they work for so long and become non effective. Treating cc is not easy, Especially when everyone’s body and make up is so different there is no standard line of effective treatment I’m aware of. Amilcar, I,m sorry that you are angry of your Dad’s passive approach. Not to discard your feelings and emotions I’m sure your Dad has a lot bottled up as well. I’m sure as a physician he knows the score and like many individuals with cc make their choice of how to deal with a disease without a known cure. Quality vs Quanity I can attest there is a big difference as I started quality change to quanity and now I guess I’m just doing treatments to see if I might strike it lucky for others who have been and are going down this lonely road. God willing a common cure will be found for us all In Gods time. Amilcar, exchange your anger of your Dad’s passiveness with love and support as the frustration and anger is really having a disease trying to take away a person we love so dearly and we simply don’t have much control of the outcome, except for hope and pray for the best of circumstances.
God Bless,
Jeff G.G ….Good luck with the chrono schedule of gemcitibine and carboplatium. Second day of Taxotere and I’ve gone from pale,tired,minor stomach cramps too red and warmth from neck to head, little numbness in fingers, and those darn hiccups from the pre med steriod. Will let all know next week after check up how this stuff is doing. Take care!
Jeff G.Amy…….Wonderful news, just awsome to hear your Mom got a clear checkup. Wish
you both continuing success and may your future remain as bright as this good news.
Jeff G.
P.S. Amy do you recall what type of radiation and locations and type of chemo drugs they used for your Mom? Did she have a complete whipple procedure? I am really happy for you guys. Just keep up with the checkups as a precautionary measure. I’m sure your Mom’s doctor already expressed that.Hi Jules, I’m so so so sorry your Dad his having such a rough time. It sounds like he has considerable anxiety with all that is going on. His bravery helps keep his dignity intact I would suppose. You know Jules, my wife and I just had a talk the other evening about our togetherness and reaching out to each other. By the time we were done talking it came done to each of us were afraid of what to say worrying that it may be to up setting. Really what we were doing is just trying to protect each other from further worry and emotional burden. Well anyhoot we made a pact not to hold back anymore. We will share the good and bad followed with a little cuddle of support. Jules it’s so difficult I know and I don’t know what to say except as long as your Dad knows you are so proud of him and how such a brave man he is, and you love him dearly. Other than that, just being there for him as much as you can is the best anyone can expect.
Bet wishes to you Both!!!!!!
Jeff G.Hi Jules, How ya doing mate? How coincidental I was Just reading the Ipswich evening Star online and clicked over to this site and you were the first new post from the uk. Are you anywhere close to Ipswich? I have family there and Felixstowe, Immingham, Grimsby, and London. All on my wife’s side. We stay in touch very much with a live web cam set through a free hot mail account. You can see and talk live as long as you want. Pretty neat I think. My relatives from Felixsrowe are coming to visit us next month. I sure hope I can keep up pace or they’ll have to do all the shopping and hopping with my wife and I’ just play chef a little Ha! Thanks for the the encouragement mate.
Take Care!
Jeff G.
