jeffg
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Mary…….As I said in the reseach section Grrrrrrreat! on your Husband’s good news. I was trying to imitate Tony the Tiger commercial. I better not give up my day job thats for sure. My wife over heard me from the other room and asked if I was ok? Ha! Jeff G.
Hi Mary, Just wanted to say “GREAT” on your Husband’s yearly check-up. You both enjoy the Summer as well. We have plenty of plans with a trip to Branson ,MO. Going to take a dinner cruise on the Branson Show Boat Belle for starters. Did it 4 years ago but really enjoyed enough to do again. Then a Jeep Trans ride through the caverns of the ozark mountains. Take Care! Jeff G.
Hi Geoff, I don’t mean this post to be confrontational what-so- ever, but I look at any /all actions being taken to support finding a cure for cancer as advancement. FDA recently approving a new drug even if not CC specific gives me hope for the future as that new drug may work as stand-alone or in combination with another drug for someone with CC. History of oncology from how I see it, is that drugs previously used for one type of cancer has gradually been approved for other cancer types and has shown better results for some people even remission for others. I find the news that 50-60 of my U.S. Senators signed a letter going to the appropriations committe supporting a funding increase of 6.7% for the NIH and NCI a good thing. I found that the Advocacy tools on the ASCO site to be impressive. I myself did not know that tool was available. No Geoff I did not see anything specific right now news for Cholangiocarcinoma. However I guess I’m looking at a broader picture as well as whats happening now. I feel finding a cure or a new chemo combatant there has to be many tools working at the same time. U.S. Senate awareness, additional funding, FDA approvals. Getting a new Chemo drug available, to me means basic marketing has to take place. Researching, testing, promoting awareness to the public. It takes lobbying and advocacy of the people, and the pharmacuetical companies. It takes government cooperation, support and initiative. Also organizations such as Cholangiocarcinoma.ORG and many many others are contributing immensley to this process. This site and others have really allowed the education of battling cancer to get to so many who have been blind-sided with such a terrible disease. Geoff, I am so sorry for going on like this, as I would like to see tomorrow and the next day just like you. Looking at the big picture and seeing all the contributaries just keeps me in a some what positive state of mind. Yes, I wish they would plug in to my port-a cath tomorrow and fill me full of the magic solution. I will continue to have hope until my demise but I will also accept reality as it is today. Again I’m sorry for getting on my soap box and yes venting my frustrations. My intentions was not to offend anyone in any shape or form. God Bless!
Jeff G.Patrice …. I have heard both bad and good. My Dentist back and Maine told me he went there about 15 years ago and they cured his cancer. Don’t know what type he had the conversation didn’t go that far. Two Oncology nurses have told me there are better places to go. One Oncologist told me he had to nurse one of his patients back to health; that they didn’t monitor and do follow up like should have. I have watched their inspirational advertisments and it gets me when it says ” We may have treatments your not even aware of” Well, If they do then why aren’t they advertising it. I personally contacted them 3 years ago and the first two questions to me was what type of cancer do I have and who is my Insurance company. I guess I have a negative feeling personally but that does not mean they are no good. I guess one would have to try it to find out. I just don’t like deceptive and lurring advert tactics. They are also a private for profit organization. Nothing wrong with that either I guess, except there is a tendency to more expensive. They are opening new facilities in different states so someone must be getting treatment from them. I guess if your interested and they’ll accept your Insurance Company check them out. Like I said I personally have nothing against them. All Infor I got was hear say except for the call I made. I wish you and Dave the best. Being Open and looking at other options and getting second opinions is the way to cover your bases.
Jeff G.
Fatherson……. I’m sorry to hear about your Father’s condition. Just by reading your post tells me he has been having a very rough time. The explanations you were given sounds logical from what I have heard and seen. Being unresectable to begin with having double stents which do get clogged up over time. The ongoing fevers and juandice on a monthly basis does relate to bile blockage. Also it is known that even with stents and external drain it is possible not to get enough drainage to lower the bilirum due to disease progression of the liver itself. If there is cirrhosis involved it is possible there is not sufficient varices secreting in to the ducts themselves and thats why his counts are staying up. I know that all the CT Scans I have had done (many); they say little to no change or progression. But if you look at the size of tumors way back at the begining and compare to the present one you will certainly see the difference. The radiologist compares present to last scan and that’s why that terminology is flowing around. You ask have the they lied to you, painted a rosie picture I would hope not. Oncologist in my experiences are on a different plane emotionally; they have to be able to give hope as long as they possibally can to their patients but also be able to tell it like it is when they have done all they can do. The Bottom line is it sounds as though your Father’s liver is in really rough shape and your doctor may not be able to do anything else until things calm down(swelling and infection) and possibally even after that is questionable. What does your father say? What does he want to do? Does he feel strong enough to press on with more procedures? Second opinions are always a good Idea if you have any doubt. There are surgeons that will try something new or different than the others. Review the big picture and if your father wants get that 2nd , or 3rd opinon. I’m not sure if this post is of any help or compounded your unfortunate situation. This disease is terrible and tough choices have to be made. I certainly wish your father the best and pray to God that he gives you the strength to deal with this situation. Continue being the loving and caring person you are. Your Father can certainly be proud.
Jeff G.
Jliu168…… Sounds like a real good combination of monoclonal and chemo. Fantastic Tumor Marker decrease. I’ve been reading a little on the MAB and Chemo delivery regimen and have been seeing positive results. It seems to go straight for the epidermal cancerous cells. Will most likely be the route I take next if things start going south. Wish your Father the continued progress.
Jeff G.Hi Susie, I concur with the article Ron posted on sorafenib also known as Nexavar. This and some other treatments I’m currently reviewing on qualitycounts.com for liver cancer and treatment that can be used to reduce pain related to liver problems like thrombosis (sp). Just found this site and it is pretty current. It is a peer view review site for doctors.
Jeff G.Dear Joyce, I’m so sorry to hear of Mike’s passing. At age 51 it hits home for me. A few prayers coming your way for you and the children. He’ll be in your heart and memories forever. When ever I come on site and start to scroll down I pray to see no post in the Rememberance section. My hat off to Mike for the battle he fought. As will many others, I will continue to fight the battle hoping that the contributions and sacrifices of those past and present will get us closer to taming this relentless disease. God’s love to you and your family! I pray a bundle of miracles come your way to help ease the pain of your loss.
Jeff G.Hi AK, Sounds like your uncle had quite a surgery. Did they do more than just a liver resection? Hope he is holding his own. Prayers and thoughts are cominfg your way.
Jeff G. P.S. Prayers to his anxious and awaiting family also. This is so so hard especially when you have such young children involved.Hi Pam, Just wanted to echo what Joyce posted. Once diagnosed with this disease a major major life change takes place. Practically everything you once were has to be adjusted or changed. I personally not only feel but know I,m not able to do many many things I use to do. If I get a stubborn streak going and do something I should not, pain is now my reward. I have slowly become domesticated and accept for now that it isn’t that bad. In fact it makes me feel good to see my sweetie of 30 plus years come home from work and smile , seeing I have made her a favorite meal or the house is clean and smells fresh or I tell her a hot bubble bath is already for her. Heck ya I’m still useful! Doing the pots and pans still erks me. I have my moments of depression and can’t get motivated all. I tried anti-depressants years ago for about 3 weeks and said that was it and stopped them. The wear and tear of having chemo contributes without a doubt. My self esteem is crushed, although I’m still me I can’t do what me wants a lot of times. I think my biggest contributor is loneliness and ISOLATION. I feel like I’m a prisoner of war at times. So I combat that with keeping my mind extremely active with reading and researching and doing smaller projects. Instead of erecting 6 foot fencing, I started making little ole bird houses with extra details like doors ,windows , chimneys, and balconies. I would be lying if I said I wasn’t a little angry, but for the most part I have let it go and chocked it up to reality which we all know can be down right cruel and devastating at times. I just felt that I had to let go of my anger or it would eat me up and steal the energy I need for fighting this wicked disease. To stop my rambling; Yes some of us have been dealt a bad hand, but like in poker you keep on going til you get a winning hand. If that don’t happen then foldem and await until the next game and just maybe your luck will change and win a few hands. So, now you have heard my reasons why I am sometimes depress and weep. You can’t take a breath without hearing, seeing, and in my case touching cancer. You know today I said the heck with it and booked a vacation to a serene but also playfull place in Branson, MO 3 months from now. I will go whether laying in the back seat or driving. Positive frame of mind and hopefullnest can be a powerful tool for those who can muster it up. Pam I’m 51 and just not ready to give in even though in reality the odds are against me. Maybe that ACE in the hole may come in time. Prayers and support coming your way for your husband and you. It can be a rough ride at times.
Jeff G.Ines, Sorry to hear about your friend. Memorial Sloan-Kettering Cancer Center in New York has been suggested by many patients. It really is a personal choice you have to make base on your current situation. Distance can be a big factor if treatments are involved. Personally, I believe most all cancer treatment centers or hospitals provide professional care and normally follow the protocol of your larger centers. You can go to the National Cancer Institute web site and get the information your looking for. Best wishes!
P.S. Positive attitude is a biggy in my book. Let the anger go! and take a constructive full speed ahead approach. Become knowledgable and advocate all the way. That is my 2 cents worth. Feel free to browse this site and ask questions. There are many knowledgable individuals who are more than willing to share whatever infor they can from personal experiences first hand either those with the same cancer or there caregivers/Loved ones/ Hubbies /wives and sons aand duaghters.
Jeff G.Hi Ron, I had sorta the same problem about 4 months ago. I went for regular oncologist visit and when they did my vitals my pulse would very from 32 to 80 per minute. I was having some minor muscle spasms but no pain. They sent me straight to ER and I was showing irregular heart beats, ventricular something they called it. I went ahead and discontinued Xeloda and Oxy until I had a nuclear heart scan and my heart was giving a clean bill of health. I restarted chemo and have had irregular beats off and on since then. In fact when I have gone to the ER a couple times for other problems they get a little excited and after reading my chart they disconnect the heart monitoring machine as it was caused by the chemo. They did warn me that if I had any spasms or pain or aching what so ever to let them know. I have not had any problems since then but of course I insisited on half dosage in comparison to the normal dose given. The bottom line with my experience is chemo has caused slowed or skip a beat active or not it didn’t make a difference. It was never an issuse until I started on Xeloda. I am still taking Xeloda on cycle six now. I’m taking pill form 1000mg in am and 1000mg pm after meals with full 12oz glass of water. Beings it has lowered my CA19-9 Tumor twice in a row and is now well within normal range I opted to keep going until it reaches a plateau or stops going down. If they hadn’t given me a complete work up and said my heart was fine, I probally would have gone the other direction. Hope your doing okay now. Sorry you couldn’t complete the trial. But if I was in your shoes and thought there was a chance of an inherrent condition then why chance it hey? Best to ya Mate!
Jeff G.Pranjal, My sincere sympathy for the lost of your Mom. Like Joyce said You absolutelty did nothing wrong. This disease can go for years before being detected. If by chance it is discoverd early the chances of a cure are pretty much nil. The Doctors can do their best to try and control and treat it with hopes of slowing it down some and to provide pallative care for relief of pain and juandice. But then that is not a sure thing. It is considered a systemic cancer which means it is in your blood stream and could pop up any where even if surgical removal of primary tumor . I’m one of those people who discovered it early and been battling for many years. Although the primary tumor was resceted it still spread to my lungs and and returned to the opposite side of my liver. I sometimes wish it had been the opposite (not knowing) as it has been many years of of the big questions of when and how I will see the end of my days. However, I chose to give it my best and hope for a novel treatment that may be lurking around the corner. Again. you did your best as know one can tell how quickly or when it will be discoverd. The gruesume reality of this type cancer is that of many lossed love ones. I keep going out of love for my family, but as time progresses I have the knowledge of seeing what is coming next and try to deal with it a little bit differently than some others. I guess I’m like the the turtle looking at the finish line but see the rabbit getting their first and maybe finding a good treatment or cure before I arrive at the line. So, as you see many emotions and trial and errors are out there. Pranjil, just being there for your Mom and showing her your love and support was the best thing in the world. God Bless you and Your Family! Peace be with You!
Jeff G.Hi LaineyA, Please correct me if wrong … the GTX cocktail you describe, is that gemcitibine, taxol, and xeloda? Can you give a breakdown of how it is being administered? All IV or some IV and some oral? Really glad to hear your progress with tumor shrinkage. Keep it going!!!
Jeff G.
