jeffg

Hi Becky, I really believe it was equal results across the board. Maybe the carbiplatinum with 5 -fu push rocked the boat more than thre other combos. I say that as it actually reduced tumor size in liver and lungs, but evently became non effective and the tumor that shrunk returned to the original sizes. I believe doing and changing regimens as soon as they appear to be ineffective instead of going full courses of 9-12 weeks whatever applies. If the cancer gets smart and catches on at the 3rd or 4th treatment then move on to something else and surprize it with some other regimen to figure ouy. I believe this is what has kept me stable for so long. Today I tried Taxotere by it’s self. Just waiting now for the anti meds to wear down and see how hasrsh the side effects are going to be. My oncology nurse feels this drug will most likely cause me to loose my hair and possiblly my finger nails. She said it was some pretty potent stuff as rough as carboplatinum if not more so. Well a few days from now I’ll find out.
God Bless,
Jeff G.

Bob’s Wife, My deepest symphathy. May Bob Rest In Peace. I pray for God to give you the strength during this time of loss.
Jeff G.

Welcome SandraB, Joni,Joe,Abigail…….. I.m glad you all found this site as it has been a blessing for me. Just being able to discuss and share different treatments taken, especially the way everyone deals with the side effects of this horrible disesae. Managing your side effects plays a big role on how you deal with this cc; mentally and physically. You really need to make sure you have all medicatios for side effects in place. Something for nausea, something to help have bowel movements, immodium to slow the bowels, medication for pain, relax in a bubble bath, and exercise even if it’s just walking a little each day, a sleep aid to ensure your body gets plenty of rest. Basically all I mentioned is to ensure your body stays as less stressful as possible and keeps you in a better frame of mind. Positive thinking and listening to relaxation music. I honestly believe this cc strives on stress and the chemicals we produce from being stressed out. 8 years and 4 months for me now. It has been quite a roller coaster but just being around to enjoy my loved ones has been worth it! I can honestly say it has not been easy and all we can do is our best. The nature of this beast is that it sneaks up on you before you know it. I strongly believe there is hope of a cure just around the corner. Irregardless of what stage your at, I’ve seen some miracles and many new options/treatments that have been extending lives with pretty good quality of life. At the moment I will start my 5th chemo regimen on Monday. The last couple of months there have been a couple surprizes of mets to one of my ribs and another to the spine bone but appears 3-D conformal radiation took care of those back door tumors, for now anyway. Is my fight getting harder? I would say cc keeps me alert and suspicious and is certainly consistent. I have been lucky so far not having juandice and requiring stents yet. Although many members have stents and are doing really good. God Bless them and anyone dealing with this relentless disease. Hope is always in the air!!!!!!

Hi G, So how did your micro bubbles study go? I have never heard of that. I start new chemo Regimen on 30 July. Taxotere (Docetaxel) straight up IV. A member of the taxol family. Is not normally used for CC but some recent studies showed small percentage of complete and partial responses. I’m going to see if I can get in to that small percentage of complete response. If not I will take what I can get. I was a little hesitant at first. I keep weighing the option of quality vs quanity but I’ve come this far might as well keep on trucking. Radiation appears to have done some good but it was going on for some time and damaged some nerves in the subcutaneous of my right flank toward the belly button area. Hopefully I can work it out. Also the nuero surgeon said nurotin (sp) is good for pain also stimulating nerves. Will discuss with Doc next week. catch you on the flip side G.
God Bless,
Jeff G.

Hi Patrice, Hope Dave is still feeling well ? Such a small world. My Dad had all four of his main arteries 85-95% blocked a couple of years ago. I had to get my niece to press the med alert button for ambulance in Maine while I was talking with my Dad from Kansas. He was so out of breath and I could hear his slurred speech. Was able to prevent major stroke but his arteries were so brittle the heart surgeon had nothing to work with. He stayed in the Nursing home in Maine with my Mom who has parkinsons and failing memory. She stays at a nursing home in Portland. Well, I surely hope the doc’s figured something out for Dave. Wish you guys the best. I start new chemo July 30, called taxotere (Docetaxol). It is not normally used for CC but recent studies have shown small percentages of complete and partial responses, so I shall give it a whirl.
God Bless,
Jeff G.

Hi Laura, Sorry to hear about your Dad. Cholangiocarcinoma to put it mildly is a very terrible type of cancer and is considered not curable but is treatable with surgery, radiation, chemotherapy and other methods to include herbal treatments. Unfortunately there is no case that is the same with the same results. A lot of factors come in to play i.e. location of cancer, is it resectable, how advance when it was found, how you respond to different treatments, is it in more than one location. The list goes on. Not knowing any specifics I can’t really give much advice right now except I believe and have hope that a cure will be found soon. There is a lot of research going on. Laura, cholangiocarcinoma can be of a low grade or high grade type. Those people with high grade usually don’t do very well and succumb to this horrible disease in a relatively short time. What is a short time? Is again an individual thing taking in all the factors involved. People from time of diagnosis have lived a few weeks , months, even years, it is so individualized. I will say and have learned not to take the standard statement that some doctors say 6 -12 months. A positive attitude and a willingness to fight and be open to trying new treatments is one way to look at it. Some people are so advanced with the disease and choose no treatments and just recieve pallative care. Myself, I’ve had surgeries, radiation, and several types of chemotherapy. I have fought this monster for over 8 years and still pushing. It comes down to an individual choice of quality versus quanity of life. Some can deal with side effects better than others. I believe in getting second opinions when it comes to surgery as if resection /removal of the cancer can be provided considerable more time is the outcome. The thing is cholangiocarcinoma is considered a systemic cancer and can float around and pop up almost anywhere at any time. Laura, Fell free to look through this site as there are many people who have and are trying different treatments and there has been some successes. Fell free to ask what ever question you may have.
Love, Support, and just being there is what your Dad needs now.
God Bless you and your Dad and hope you have positive times ahead as it can be a roller coaster at times.
Jeff G.

Hi Amy, I too had a hernia approximately 2 months post surgery. I actually felt the pop when it happened. I was stbborn and wore a 4 inche wide belt for about one year and just covered it with my t-shirt. It then starting working downward and I had surgery. About 4 inch incision and a mesch put in. It was a same day surgery with no complications and was sent home with a medtronic pain pump which Insurance company refused to pay for but hospital absorbed the cost as it wasn’t something I needed and they didn’t get pre-approval. Hope your Mom is feeling better now. God Bless You Both.
Jeff G.