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Viewing 15 posts - 301 through 315 (of 316 total)
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  • in reply to: Possible Upcoming Surgery #16922
    carol58
    Participant

    Thanks so much Kris, Jeff, Patrice and all the caring people here. You’re all like angels to me. Great advice Jeff and I won’t forget it for Charlie. Going Fri. to UNC for TACE procedure as precursor to left lobectomy in a month or so. Thanks for the blessings of your friendship, positive thoughts and prayers and I wish and pray the same for you all!

    Carol

    in reply to: possible resection/liver surgeons? dealing with ascites? #15441
    carol58
    Participant

    Hi, my husband age 52 also repeatedly turned down for liver resection since being diagnosed in May of this year. They are still so young. Sounds like these two have some things in common. Our 2 children are 16 and 19 and I can tell by your writing, you’re probably older?? I’m glad your Dad was responsive to the chemo. Charlie was also, but towards the end of 2nd cycle, it was very hard on him too. He was on Gemzar alone and the tumors are stable, no shrinkage, no growth. Desperately researching other options, I’m sure you all have been too. Univ. Pittsburgh also turned my husband down. We’ve never been given a cm measurement, but the whole left lobe of Charlie’s liver is full of tumors. E-mailed UNC about Cyberknife, got a call from Dr. Morris that his tumors were too big for that, but referred me on to Dr. Hanna Sanoff for consultation. She also said no possible resection. We were looking in to SIR spheres at Wake Oncology when we got a call from UNC that his case had been presented to the tumor board and a surgeon was interested. Laparoscopy performed by Dr. Ben Calvo to see as much as he could before proceeding. After many trips to Chapel Hill, we met with Dr. Mauro for chemoembolization consult and this should be performed within a week or 2. He is going to specifically target a small amount of tumor that is bulging out into the good lobe and try to shrink that. In 4 to 6 weeks, if all goes well, will perform complete left lobectomy which is major surgery. There’s a tiny bit of tumor in the right lobe also. Possibly this can be more well managed after left lobe of tumors removed or maybe small enough for Cyberknife?? I don’t know why Charlie’s case caught Dr. Calvo’s eye. We just thank God for it. What does it take? Someone willing to take a risk, someone more skilled…I just don’t know. All this came about because of a simple e-mail about Cyberknife at UNC and went from there. Are there not that many skilled surgeons out there willing to try things? We have told every doctor we’ve met with from the beginning that even a few more years is better than the standard 6 months, so please try something. It drives me crazy. I think about all the people suffering from this and wonder if a surgeon somewhere would just take a chance…go a little further before saying No. We’re so grateful that UNC is willing to try this. Sometimes I feel like they turn us down too quickly thinking the tumors are too big or there’s cancer in both lobes or it’s going to recur anyway and you’ll only get a couple more years. Well, we’ll gladly take those couple of years.

    I guess that’s why I don’t post more often because I vent my frustrations (and it felt good) as I know you and your family are also frustrated.

    More opinions are always good. I’m not sure where you live, but our experience at UNC so far has been great. I also know that each person is a totally different case with size of tumors, where they are, etc., etc. so must be looked at individually. It seems that each case of cc is so different!

    My best wishes for your Dad, you and your family.

    Carol

    in reply to: Gemcitabine and Tarceva, side effects? #16906
    carol58
    Participant

    Husband, Charlie, age 52 dx with cc end of May 07. Charlie felt much better the first cycle of gemcitabine because he said he was “practically dead” by the time he got on it. He was in such pain, weight loss, extreme fatigue. But the 2nd cycle was much worse and the oncologists did talk about a cumulative effect. The chemo did stop growth of the tumors, but towards the end of his cycle, he was getting really messed up with his blood counts, extreme fatigue, etc. The possibility for surgery has come up for Charlie now, but even if it hadn’t we weren’t going to continue with the gemcitabine. It was wrecking his quality of life. He wanted to try SIR spheres with Dr. Andrew Kennedy in Cary, NC, but then the surgery came up at UNC so we’re progressing toward that right now. Towards the end of chemo, Charlie was so sore all over and like you said felt like crap 4 out of 7 days at least. He didn’t have cramping or diarrhea. CANCER SUCKS!!! Whew, got that out of my system. I pray you get some relief soon.

    Love and prayers to you,
    Carol

    in reply to: Possible Upcoming Surgery #16920
    carol58
    Participant

    Thank you Kate. I know you’re still missing your Mum. I hope you are getting out into the “land of the living” and working your way back. You Mum sounded like the greatest Mom ever. Losing mine 30 years ago…there’s still an empty space that can never be filled, but life has progressed along with or without me.

    Thinking of you,
    Carol

    in reply to: possible ressection of HUGE liver tumor hope or ??? #16098
    carol58
    Participant

    Hey Robyn, I’m not sure how similar our situations are, but I’ll share this with you in case it helps. Hope so. My husband, Charlie, age 52 diagnosed with cc end of May this year. Finished 14 weeks of Gemzar this month. Went for 2nd opinion at UNC. Case presented to tumor board and a surgeon felt like he could do surgery. One lobe is just full of tumors and the other we think is clear. MRI, laparoscopy and now surgeon wants to do embolization (cut off blood supply to bad lobe so it will shrink and “die” and allow good lobe to enlarge). 4 to 6 weeks after that, surgeon will remove the bad lobe. Surgery possibly in Dec.?? We have been right there on the same roller coaster and know how you feel. We were getting ready to do SIR spheres with Dr. Kennedy (if our insurance would pay) until this came up. Surgery does seem to be the best option for Charlie right now. We haven’t gotten that far yet, but it’s looking promising. I hope and pray the same for you and your husband. It almost seems like it takes that one aggressive surgeon who thinks he can do something to help – otherwise, it’s just 6 months to a year. That’s what we were told anyway. Chemo made Charlie feel much better at first and the tumors didn’t grow anymore, but towards the end of chemo, it was really taking a toll on him (fatigue, low white blood counts, etc.). Don’t think it would have been worth it to continue for his quality of life. So thankful this surgeon doesn’t want to just “write him off”. We personally feel that some doctors just give up when they hear you have cc. Please update us on your situation. Pray things are going well for you and your husband.

    Carol

    in reply to: mom diagnosed… #16893
    carol58
    Participant

    Dear Lovemom, my husband Charlie, age 52 dx with cc end of May this year. We went to Dr. Kennedy at Wake after 14 weeks of gemcitibine chemotherapy, which was only maintaining the tumors, not growing, but not shrinking and also starting to wreak havoc with his blood counts. This was our experience. Dr. Kennedy is so sincere and compassionate. It is 180 degrees from our oncology experience in our hometown. He took all the time we needed, explained everything in detail. One problem with the SIR spheres that he does is insurance sometimes won’t pay so they were working on that for us. They do all the work. He will write letters or talk to the insurance company or whatever is needed. If you send your records, scans, etc., he’ll get back with you quickly. If you e-mail, he responds quickly. We were waiting to see if it was a go with our insurance and then lo and behold, a surgeon at the tumor board meeting at UNC called and felt he could do something surgically. We had gone there for consult/2nd opinion a few weeks earlier. He did laparoscopy and MRI to get as much info. as possible and he thinks he can remove the bad lobe that’s full of tumors and leave the good lobe. Embolization and then remove bad lobe. Sorry, getting side tracked…it takes over your life when you’re fighting for a loved one.

    I would highly recommend Dr. Kennedy to anyone because of his sincere desire to help people. He’s very interested and knowledgeable about cc and a wonderful practioner. If the possibility of surgery hadn’t come up, we would be doing the spheres with him right now if our insurance would pay. When I e-mailed him to update him on UNC, he was very positive and glad that surgery might be an option.

    I hope this helps in some small way. I’m so sorry about your Mom and hope that things will get better. You take care too!

    Carol

    in reply to: Cyberknife #16556
    carol58
    Participant

    Hi Mary, went to UNC for 2nd opinion. (Husband, Charlie, 52, CC diag. 6/07). They told us that Charlie’s tumors are too large for Cyberknife. Usually is used on very small tumors. (His entire left lobe is tumor and a few in his right lobe). I don’t know if this helps at all, but it may give some idea on size of tumors for this procedure. Good luck and God Bless!

    Carol

    in reply to: Chemo only option? #16252
    carol58
    Participant

    Hi Bill, I saw your wife’s Care Page. What an amazing lady and what great support you are! I read that she had Theraspheres. We’ve contacted Dr. Kennedy in Cary, NC about this procedure for my husband Charlie. They did tell us right away that our insurance may not cover it because it’s considered experimental. Did you run into any problems with this at Mayo? From what I can gather, it worked well for Kathleen? We feel like the 2nd opinion at UNC will be good also. Best wishes to you and Kathleen.

    Carol

    in reply to: Chemo only option? #16251
    carol58
    Participant

    Hi Patrice, I hope the month off of chemo has been good for Dave. Please update us when you can. We care. Charlie’s hanging in there. This 2nd round of Gemzar is not going so great. He is so weak, has absolutely no energy. Put him on Prednisone and is feeling better. His red blood counts continue to decrease with the chemo. Going for 2nd opinion at UNC next week, maybe get a fresh perspective, can’t hurt. We’re blessed to have good health care in NC. Anyway, I’ve rambled long enough. Just had you and Dave in my thoughts and pray you are both doing well!

    Carol

    in reply to: Need Help #16342
    carol58
    Participant

    Thanks so much to all who have shared experiences and responded to my questions. It is definitely looking like liver transplant is not an option. We’ll be discussing other avenues the end of Aug. with oncologist. I’ve been doing some research on Theraspheres and Dr. Andrew Kennedy in Cary, NC (2 hours from where we live). Some of that sounds promising. For now, Charlie has good and bad days and is still maintaining pretty well on once a week Gemzar chemo….continuing to pray for God’s healing hand and for all those touched by CC.

    Carol

    in reply to: Need Help #16341
    carol58
    Participant

    Betty, I did go through the family blogs as you suggested. They are full of good info. like you said. My heart goes out to you and your family on the loss of such a fine man as Sam. Charlie and I aren’t giving up. Thank you.

    Carol

    in reply to: Need Help #16331
    carol58
    Participant

    Hi Betty, I’m sorry for being so insensitive in my previous post and asking very personal things. Please just ignore. I get so caught up in researching….

    All my best,
    Carol

    in reply to: Need Help #16333
    carol58
    Participant

    Dear Jeff, thank you for your response and all the information. We appreciate it so much. Have you had any experience with or encouraging news about CyberKnife now that it’s being used for procedures other than just brain tumors? I’m so glad the radiation has worked for you so far and pray you’ll continue to do well.

    Carol

    in reply to: Need Help #16336
    carol58
    Participant

    Dear Betty, I am so sorry about your husband Sam. I know you miss him terribly. My heart tells me a liver transplant won’t happen. Through your and Sam’s experiences with CC, do you feel any procedure is better than another or did you experience any procedure that you just felt was too hard on Sam? They said Charlie has 6 months (from 6/07) and he’s on Gemzar now. We have 2 children, ages 16 and 19. Just like all folks battling diseases, we would give anything for him to have a few more years….I know you have already lived this. Thank you so much.

    Carol

    in reply to: Gemzar #16305
    carol58
    Participant

    Hi Cherryle, my husband Charlie, age 52 diagnosed with CC 5/07. On Gemzar for 7 weeks once a week, 1 week off, now in 2nd week of 2nd 7 week round. Scan done after the 1st 7 week round showed no change, no growth in tumor, but no reduction either. I’m glad to share his experience as best I can. He was so sick before Gemzar that anything would be an improvement. Started feeling bad in 3/07, lost 15 lbs., extremely fatigued, no energy. He started feeling better within a week of starting Gemzar. Please know that every person reacts so differently to each and every medicine and there are so many other factors involved that I can’t even begin to understand. 1st 7 weeks, he usually ran a fever on the 2nd and 3rd days after the chemo. This new round he’s on now, he seems to keep a low grade fever and headache a greater amount of time. His appetite is good and he’s gained all his weight back. He’s still tired and has to nap some. I think I read that fever (as long as it doesn’t get too high), headache and fatigue are common side effects of Gemzar. He’s had no stomach pain and his blood work has continued to be in a good range. I don’t know if any of this will help, but I hope and pray that your mother gets some relief soon and you find something out from the CT scan. It seems nothing ever moves fast enough with our loved ones. Keep fighting.

    Carol

Viewing 15 posts - 301 through 315 (of 316 total)