jeffg
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Hi Michele… I have heard very little about this procedure and will have to do a little reseach on it. It sounds logical to fight locally and to cut off the blood suppy to the tumors. The only question I would have is how much is it going to effect the remaining good tissuse of the liver. I’m sure that has been taking in to consideration as far as dosage is required. I really wish you and your husband the very best on this procedure. Please do let us all no how it goes, some of us may want to follow suit. You know Cathy I have been seeing a lot more activity toward new types of treatments and combination of treatments within that last 4-6 months. A lot of awareness seems to be flowing to some places and people who seem to be kicking it up a notch! as Emeril would say. I know many of as are grasping on to the hope that things will really change for the good in the near future. Like Peter said, as long as we keep on trying there is hope if not for a cure but something that will put the binders on further progression woud be great. I have that same positive thoughts.
Also thanks to you for all the posts of encouragement. It’s also great to here good news from others as well. Mary, I have no doubt in my heart your hubby’s check up will go well. You know I got caught munching a chocolate brownie yesterday. After a little scolding, my wife said if you decide to have one we will split it in half and share. Ha! I think thats her way of keeping tabs on my little splurges. But I agreed to the sharing bit.
God bless you all!
Jeff G.To Cholangiocarcinoma Members:
Saw my Oncologist today and all looks good. This is the second cycle in a row to show considerable improvement. All blood levels including CA-19 and CEA are within normal range. This past cycle decreased my levels another 20%. So the strategy is to continue on with another cycle. Going to increase oxy 100mg only, drop day two of steroids as it only caused me to have hiccups for three days, and delay CT for another month. It’s strongly felt the pain in my hip and rib is from to much gardening and erecting fences. He recommends I slow down for a while and let things mend. I told him my wife told me to do the same thing and he chuckled. Well any hoot, I ‘m feeling pretty good today and hope and pray things stay as is and in a positive direction. I will continue to eat my spinach, red grapefruit, bananas, blueberries and homemade loaded pizzas with plenty of mushrooms. I will continue to take Centrum Silver Muti-vitamins, Milk Thistle, and and fish oil with omega 3 capsules. Also keep chasing the grandchildren around the house. Also I will continue to take my nightly clonzepam to get a good nights sleep and continue listening to healing CDs when taking my daily nap. I will never let my guard down though, as this cc can be quite unpredictable as we all know. Best Wishes to all!
Jeff G.Hi Pederat, Sounds kinda similar to my CC. I’ll start checking the live chat when I come on in the future. I haven’t been able to catch anyone yet. Like you saud the doctors have been wrong before and will be again. I’ve been battlling this thorn in the side for 8 Years , 2 months, and 4 days and still around. Like Jules said it’s positive attitude. Think of living not dying. Stay ahead of the game when you can and advocate what you know will help or when you know something is not helping. The Oncology world is so over whelmed you almost have to be a nurse (no punt intended) to keep up with the doc’s oders and changes. Tell Dave to take that big ole bull by the horns and give it a go! Sorry for the bad news but now is the time to get going and do what you need to keep on living. Sorry If I sound so bold and forthcoming, but I haven’t seen anyone beat this CC who just layed around and only did the half step. Yes there will be a roller coaster ride ahead. Some do great others not so great, but you’ll never know if you don’t give it a whirl. Attitude, diet, exercise, and a good nights sleep each and every night is a must. Chat with you sometime in the near future. Bless you Both.
Jeff G.Jean …. Sorry to hear about your Husband. I too have been having # 10 pain this week. I have been doing alot of yard work (bending and twisting) and think I made my liver and rib tumors a little angry. It hurt so bad I couldn’t hardy move. Doctor increased my morphine and added loritab in between for any break throug pain. After three days of zombie land, I ‘m able to move around and do things again including sleeping without sitting up. However as stubborn as I am, I was out planting rubarb in the garden today; I did take it a little easier though. Last month I went to thr ER with the type of pains your describing and I was told I had popped a litttle tiny vien of which the blood leaking and the body absorbing it caused all the pain. Did you get and explanation of what caused your Husband’s pain ? I guess if there is inflamation we are prone to popping these little varacies. Hope he is feeling better now.
God Bless
Jeff G.Hi Ron ,
Just wanted to wish you the best with the Xeloda treatments. I start cycle 5 this coming Wednesday. My first cycle was a little to much and had to cut back on dosage. No problem since then, just some numbness and tingling in the fingers and can’t touch nothing cold or drink cold drinks for a few days. Are You having any additional chemo with it? I’m having Oxalaplatium(SP) by way of IV day one and then start 10 days of Xeloda pill form. After third cycle my tumor marker dropped 40%. Next CT will be in three or four weeks from now. Although I had a complete bone scan five weeks ago and discovered mets to my 10th rib on the right side I think this treatment has been doing some good. Time will tell. Got all the time in the world right?
Keep on Rolling!
Jeff G.Jules, I understand about the gnawing pains. I had a complete bone scan about 5 weeks ago due to the fact I thought something was going on in my stomach and ribs. Sure enough mets to right side ribs. Am pressing on with same chemo treatment. But the constant gnawing pain was getting to be to much, so increased pain meds and like you said that increases constipation. Putting modesty aside usually everything get backed up start in the lower bowel/ rectum and of course continues to work it’s way upward until your all blocked up. So being a home care provider for a quad/cerebral palsy person, I remembered what I use to do for him. He had to take daily muscle relaxers because of his condition I had to monitor his bowel movement daily. If after day four no movement I would give him a liquid glycerin suppository and within 10 minutes walla! instant relief. Well pain meds do the same thing as muscle relaxers by slowing or I say put your bowel more so the rectum muscles to sleep. To put and end to a long story; I was at day four and I had been eating like a pig for days. Was having adominal pressure and pain. Took a little trip to Wally Mart and got some “Fleet” Liquid Glycerin Suppositories. Come in a little green box of 4 each. They are designed for rectal application. Once inserted squeeze little plastic bulb. Pre-measured liquid go up and Walla! within 6 minutes magic was happening. How do I spell relief “Fleet”. No cramping ,pain, nor continuos running all clear in one go. I slept quite well that night unbloated and still took pain meds. Iv’e witnessed an individual with impacted bowel and it was not very pleasant. Pain, fever over 106 degrees from infection cause by backed up bile. Anyhow, I would highly recommend Fleet or similar brand . Not expensive less than $ 5.00 for box of 4. Disclaimer… I am not a doctor you should consult with your doctor before using or at least read the instruction on the box. Bottom line is constipation and backed up bowel can be relieved within minutes. Sorry for rambling again.
Bless You All!
Jeff G.Hi Liz, I am so sorry to hear about your Mom. It sounds like she has really been fighting this terrible disease. Liz no one can really tell you how much longer she has to live. You said she has had many stents and the last one failed. If there is no medical intervention to drain the bile being produced she will probally continue to be juandice and end up with infection and go down hill from there. In a lot of cases the infection or disease just plainly gets to the point that other organs just start to fail due to her immune system can only fight for so long. AS you probally know already, there is no known cure for this disease and it can be very aggressive with some people and then others are able to fight for months and years. It would not be appropriate for me to say what or how long as it is so individual. Ultimately it is your Mom’s decision. Has she fought all that she can or all that she wants to? It is so emotionally and physically draining fighting this cancer. The only straight answer I can give you ,is if no further medical intervention is being taken or can’t be taken, It is in the hands of God. I would focus on love and being there for her. What you read on the web sites pretty much tells you like it is. Caring and loving support is what she needs most. Your Dad may not want to accept the reality of what is happening but I’m sure he understands and knows. He’s gonna ride the roller coaster to the end and he to needs support and love during this very trying time as well. A lot of people just don’t discuss much as it is thier way of hiding emotions or protecting other family members. It’s just a natural coping mechanism. It’s has nothing to do with getting straight answers. Love and cherish each and every day is the best medicine at this point. I pray that your Mom and the whole family finds peace. God Bless You All.
Jeff G.This site appears to show all the information about Agent Orange and Defoiliants used in Vietnam.
Jeff G.
P.S. I was in the service during Vietnam era but was not in Vietnam/Exposure. The above site has many links, maps, and reports. I believe the latest report can be obtained from the National Scientific Research Administration, as this problem changed Offices of administration and oversight many times as the situation grew in magnitude.emr14, I had same situation 8 years and 2 months ago. Half of my liver and galbaladder removed. Approximately 18 months later mets to both lungs were found and was told the same thing. I took the less ageressive approach and just went on with life and monitored with CT Scans until it mets back to my liver as well. When I decided to get actively researching different options, I was then told tumors were to big in the liver and to many in the lungs. I wish this web site had been around way back, I would have been doing things differently. Now I have to really manipulate my options as to much of anything could cause as negative outcome in my opinion. I agree with Mary about radio-frequency ablation and some types of radiation. I would be headed in that direction first if it was myself. One thing that my first Oncoligist told me; grant you that was years ago, was if chemo is going to work ,it will work later, as well as now, but right now (then) there had been no signs of cures and My decision on quality vs longevity was the choice at hand. He was the only Oncologist who told me that there was no way of telling how long I would have, maybe 1, 3, 7, who knows maybe 10 years. Not like 3 other oncologist who were writing me off at 6 months to a year , one said maybe 2 years. Please do advocate and get more opinions before deciding on what your Mom wants to do. I do want to ask you did they remove your Mom’s gallbladder at the time of resection? If not you might want to consider laprascopic surgery and have that little sac that holds bile and hides cancer very well removed. You don’t need it and it is a little trouble maker, as a very well known surgeon said to me . Please take time to look at this sites nutritional section as diet plays a vital role in long term survival. Please keep in touch with this site and ask what ever you may, as there are many members on this site who will be more than willing to share thier opinions and first hand experiences. Yes this is a relentless and non-bias disease! Well, I’ll be getting the nickname rambler if I don’t stop going on. One last thing is exercise and positive atttitude is a biggy! Irregardless of what you may here come out of some mouths as well as those few that look at you as a statistic instead of a loving and caring human being. I wish your Mom the best and a very positive future. As it can be!
Jeff G.This is the section where I have put and read good news. I also read the family blogs section that has good, not so good, and a lot of input of how some people are and have dealt with this disease. Jeff G.
CjFrancis, Agent Orange, also Agent Purple, pink, and green was used during Vietnam. Many claims have been filed and accepted by the Veteran’s Administration for several types of cancers. The best advice I can give you is call VA toll free at 1-888-878-6881. Also, go to wikipedia and search Agent Orange as it has infor on what types of cancers have been associated, may suggest associated with, still under investiagational research. You can also call any local (DAV) Disabled American Veterans offices will let you know and assist and advocate your claim with VA free of charge. Hope this is of some help.
Jeff G.Cherryle, I take 20 MG Capsule of OMEPRAZOLE 30 minutes prior to breakfast each morning to lower stomach acid. It protects you from inflamation , ulcers, mouth sores by keeping your digestive acids low and calm, especially during time when taking chemo treatments. It’s manufactured by Altra Zeneca. Basically an ant-acid. It’s contents is sodium magnesium. It has also for me kept the nausea under control. I have hardly ever used my anti nausea medicine for the last 2 years. I take when having chemo treatments and any other time if I think my stomach acids are getting to high. Mostly due to something I ate or ate to much of. It can get it at most pharmacies or a generic brand of it.
Jeff G. P.S. It has also been used for Zollinger-Ellison disorder which is tumors of the stomach, pancreas,and duodeum caused by stomach acid, an H-2 enzyme blocker.Hi CathyF, I am sorry to hear about your Dad’s condition. This disease is quite brutal to put it mildly. What type of radiation therapy did he go through and for what if you don’t mind me asking? Has his scans shown Mets to other locations? I know when I had Radiation treatments I had sorta a residual/delayed symtoms of lazy/tired feeling and of course depression. It is so so hard to keep positive but I break it down in to like one week or sometimes one day at a time and focus on activity to get by most of the time. Of course I’m quite younger than your Dad and still functioning at par. I guess what I’m trying to say, is if he is still determined then by golly he needs to use that power of his wisdom and battle on. Exercise , protein, and staying mentally active will take you a long way to feeling better and living with this disease. God Bless you ,your Dad and family.
Jeff G.Hi Peter, Sorry to hear of your current situation. A blast of support is coming your way. Have your ever heard of URSODEOXYCHOLIC ? I haven’t looked that far in to it ,but in short Iv’e read it has been used for Billary chirosis and also to treat ascites, juandice etc. It is also been used to dissolve kidney stones. I don’t know Peter, just shooting in the dark on this infor. Hopefully you will feel better after gaining some weight and increasing your protien. Best to You!
Jeff G.
