carol58

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

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