December 14, 2007 at 8:59 pm #18287
Jeff, you are definitely holding your own with your good health. Sounds like you feel good about holding off on radiation and continuing with the Taxotere. What a day after Christmas gift. Thank you. I’m happy for us too. Thanks about the photo. I’m really cuter in person – Just Kidding – I couldn’t resist. Charlie’s definitely the cute one. We are especially blessed this Christmas. I pray the same for you. Send some snow – no ice – our way please. We never get snow anymore around here. Hunker down and enjoy it. Take care. Merry Christmas to you and your family and a BIG thank you for the blessing of your friendship!!
CarolDecember 14, 2007 at 2:14 pm #18286jeffgMember
Carol …. I’m glad to hear charlie is doing so much better and that they are going to do radiation as a precaution. Advocating and second opinions makes a world of difference; a life changing difference I might add. After talking in length with my Oncologist yesterday and reviewing scans, we decided to hold off from radiation and continue with this Taxotere chemo. He said to much to many times would basically do me in so want to save that for when I really need it. Dec 26th I have my next chemo, a belated christmas gift Ha! In other words they can’t zap each hot spot I discover or I would turn green. Ha! He feels I’m holding my own and with my health being to my benefit, I could make some history if all stays status quo. Well, big ole snow storm headed this way today need to go stock up on a few items so I don’t have to tramp out in the mess. Again I can’t say enough how happy I am for you and Charlie. By the way that is a lovely photo of you two. Merry christmas to you guys and the family!
P.s. Big storm? Ha! Nothing compared to what Peter gets up there in Vermont.December 14, 2007 at 1:40 pm #18285
Rotten tomatoes and cabbage coming your way Kris. There’s no more complaining about insurance. At least we have it.
I really do want to stick my tongue out (and a few other choice things) at Charlie’s first oncologist back in June who said 6 months, palliative treatment, blah, blah, blah. Dr. Blackstock wasn’t happy with that story either. He said he should have let us at least meet with a surgeon. If we had stayed with him, there’s a chance Charlie would already be gone. Well, now I know better. Now I know how to get it there and scrap with the best of them. Didn’t know you had to do that to get good medical care. Don’t think I would have made it without all you guys on this site.
CarolDecember 14, 2007 at 7:23 am #18284devoncatParticipant
Heres the good news….with the cost of treatment, I bet you will make the limit on deductibles by the end of the month. See everything has a silver lining….(I say as I sneak out the room to avoid any rotten tomatoes being thrown this direction.)
Seriously, I am very happy Charlie is doing so well. Dont you just want to stick your tongue out at those doctors that give so little hope?
KrisDecember 14, 2007 at 3:57 am #18283
Charlie and I had an informative meeting with Dr. Blackstock today at Baptist Hospital in Winston-Salem. His feeling is that Charlie should have radiation in case there’s any microscopic cancer or tumor left that could be zapped. He’s going to talk to Charlie’s surgeon at UNC to clarify there’s no reason not to and if not Charlie should start radiation the first week of 2008. Happy New Year! Doggone insurance deductible and out of pocket starting over again. How can I complain?? We’re past the original 6 months prognosis they gave us and Charlie’s doing better all the time. Dr. Blackstock said he felt like he could do the radiation without hurting Charlie and wants him to take a small amount of oral Xeloda along with the radiation. So that’s our plan and we’re happy with it.
Thanks so much to all the good people here that always respond to my questions. Best wishes and love to all.
CarolDecember 14, 2007 at 3:45 am #18282
Hey Jeff, thanks for sharing this with me. Be as blunt as you want. That’s what we need. I pray you continue to do well with your chemotherapy.
Thanks Kris for letting me know your experience. You make some great points. I hope you’re doing well.
Thank you also Chris for telling me about your Mom. Best wishes to you too and I hope your Mom is doing alright.
Hi Mary, that is FANTASTIC that your husband is getting the R word – Remission. You give us hope!
CarolDecember 11, 2007 at 4:34 pm #18281marylloydParticipant
Thanks Karen. We haven’t heard the results from the 2nd MRI but everyone seemed confident that it would be fine. I don’t think this type of treatment would be possible in any tumor but a klatskin because of its location but it sure does make you wonder if it is a possible treatment for everyone. You obviously can live with half a liver so why not try? There are so few real success stories and established treatments that it seems they are all grasping at straws sometimes!I am curious what your Dr thinks if you could let me know. Take care and best wishes to you. MaryDecember 11, 2007 at 3:59 pm #18280karenParticipant
What wonderful, wonderful news! I was so excited when I read your post that I copied it and printed it out. Want to show it to our doctors on the next visit. Thank you so much for sharing!
KarenDecember 10, 2007 at 11:59 pm #18279marylloydParticipant
My husband was diagnosed with a klatskin tumor in June ’06. They attempted a resection but decided it was too risky.They tied off the portal vein to his left lobe because they were going to remove it and most of the bile duct and left it tied off after aborting the resection. The interesting thing is that his left lobe completely dissolved ( he did have to have an abcess drained) and his klatskin tumor “died” after 5 weeks of IMRT radiation along with Xeloda, followed by brachytherapy. That was a year ago, he has not had any treatment since other than from me- Dr. Mary. He just went in for his three month check-up and his Dr. actually said the “R” word- REMISSION! I have consistently told my husband that they would probably never say that word to him because they would never believe it but they did today. They actually did a second MRI today to get a few more pics because they wanted to be doubly sure that they weren’t missing anything. They seemed confident that things were fine though- they just have a hard time believing he’s doing so well. Of course so do I and my big question is now, ecspecially after reading your post Chris about the recurrence of your mother’s klatskin tumor, whether surgery may actually cause these tumors to reoccur simply by them going in and stirring things up? Did tying off the portal vein cut the the blood supply off to the tumor and then the radiation nuked it? I asked Jeff this before but I am becoming convinced that my husband’s surgeon unknowingly discovered a cure and no one else will benefit from it. It’s pretty radical but I have never read about anyone having their tumors completely go away with just radiation and chemo and no resection. Anyway I do believe in radiation and wish they used it more consistently. I think the important thing is to do whatever it takes as far as diet and supplements during and after to help improve the health of your liver. It will receive damage from the radiation and it’s very important to help it in the healing process as much as possible. Sorry for the ramble but I just sit here reading about every body having such a difficult time with recurrences etc. and I just can’t help thinking some treatments are really being overlooked. Best wishes to all. MaryDecember 10, 2007 at 5:48 pm #18278chrisParticipant
My mom had a klatskin tumor and had a resection. This was in Feb. 2007. She had negative margins and decided to undergo radiation and chemo afterwards. Unfortunately for her and us the cancer came back in November. She has a local recurrence as well as liver tumors. Just our experience. Best of wishes to you and your husband.
ChrisDecember 10, 2007 at 8:18 am #18277devoncatParticipant
I didnt have anything after resection, and boy do I wish I did now. If I have another resection I will have radiation. It took me over 4 months after resection to feel fine, 8 to feel normal and 10 months before I could run. The healing process for me was so slow, I doubt that radiation would have made it any slower!!
It is a very personal decision. I, however, am one of those creatures that worry to the extreme which must be apparent from my posts!!! I fought for post-op treatment and was denied. Now I wonder, and I can tell you that the mental stress of wondering is terrible and I think (for me) must be worse than the physical pain and exhaustion brought on by radiation.
You and your husband will make the right decision together. I guess it comes down to how much you trust **everything** was removed versus the side effects.
KrisDecember 10, 2007 at 3:11 am #18276jeffgMember
Carol, When I had my resection of my left lobe and gallbladder in 99, I was told I had clean margins and nothing else was needed. As you know my cancer returned and has been growing slowly and has mets to both lungs and my bones. Within the last year and 1/2 I had radiation twice; once to my liver and again too the soft tissue adjacent my spine that was putting pressure on spinal roots. Since radiation to those areas I have had no growth in those areas and shrinkage was apparent. Only side effects for me were slight nausea and tiredness for a couple weeks. If I had been given the choice of radiation back then I probally would have took it knowing what I know now. Clean margins don’t mean nothing to me as CC is a systemic disease and can mets to other parts of the body. When mine returned it went after my right lobe of the liver and then to both lungs and then to my ribs and then to soft tissue near the spine. If you have a good radiologist/ Oncologist who knows his stuff radiation can stop cc in it’s tracks. For how long before another cc seed finds another home to settle in to who knows. I intend to keep doing radiation until I look like the Incredible Hulk if they let me. Now I only had 3-D conformal to areas that bothered me pain wise and only after being confirmed by CT or MRI. So Carol your still left with the choice or I should say your husband radiation sooner or later. I can only state that it has done me good so far. Plus remember CT Scans every three months exposes you to very low dose of radiation as well. In fact I just read an article about Heatlh officials thinking doctors my be doing to many CT Scans and creating a risk. Sorry, I can’t be of any more help than this ,but I would rather kill off any cc buggers wandering around if done conservatively. I’m glad to hear Charlie is recovering well. It takes a while. Bluntness seems to be my profession lately, sorry.
God Bless You Guys!
Jeff G.December 10, 2007 at 1:20 am #18275
Sue, thanks for the information. That makes total sense what your doctor said. I think most doctors out there just don’t have enough experience with cc to know what to recommend.
10 MONTHS – THAT IS GREAT NEWS!! I love your picture on faces of cc. Now I can put a face with your writing. We’ll have one on soon. You’re right. It does take time, but I can see improvement in Charlie not day to day, but week to week. It’s only been 5 weeks and he’s doing so much better. You and your family take care too.
CarolDecember 10, 2007 at 1:15 am #18274
Rita, thank you for your prayers and for thinking of us. I’m so sorry your Dad’s having such a tough time. I KNOW he’s glad to have you with him. You’re a wonderful daughter! Prayers coming your way too.
CarolDecember 9, 2007 at 2:17 pm #18273scragotsMember
My doc did NOT order any chemo or radiation after my resection. I had clean margins, and she said “there simply isn’t anything left to treat with radiation or chemo”. I am now at 10 months after resection and doing great. I am certainly not telling you to do chemo or not, just passing on what my doc said. It took me about 4 months to really start feeling “good”. All things take time! He’ll get there!
Take care of each other,
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