carol58
Forum Replies Created
-
Posts
-
Oh Mary Anne, you always have our support and love. I admire you and Joe so much. I’m so glad Sunday was a better day for all of you. Charlie’s 18 months since diagnosis. It really is never long enough. What you said is perfect about the quality of life. I’m so thankful your relationships have been strengthened as we feel ours have also. It teaches you how to live fully in the present moment, doesn’t it? May God encircle you and Joe and all your family and give you peace and comfort.
Carol
Glad you found this. Dr. Kennedy is one of the doctors I was going to recommend to you. The other is Dr. Hanna Sanoff at UNC Hospital, Chapel Hill. If you have any recent scans that you can send or have sent to Dr. Kennedy, I think he can usually get a good idea from those, also liver function tests and a few other tests. He can tell you what he needs. He’s a smart man and a kind doctor. Please don’t worry if you don’t hear from him right away. I know he is out of the office for most of November. He usually answers emails very quickly. You can call them also. His nurse if great too. Mary England is her name. Hope this helps.
Carol
Yes, 2nd and sometimes 3rd and 4th opinions are good. We started at Forsyth, but weren’t happy with our doctor. That doesn’t mean your Dad’s doctor isn’t good though. Everybody has different experiences. I just know in hindsight, if I knew then what I know now, I would have never put up with the doctor at Forsyth. We’ve gotten opinions from several doctors.Charlie had chemoembolization at UNC Hospital last year. It was pretty rough. I can’t imagine having 3 of those done on a person your Dad’s age. Just take it a day at a time and see how the first one goes. You never know. Everyone reacts so differently to the treatments. If you’re interested in any doctors for other opinions, I could give you some names. Take care.
Carol
Hey, your Dad’s in Winston-Salem? Who is his doctor? If you don’t mind me asking. You’re welcome to email me on the board here or just hit email under my name and send it that way. Best wishes to you and your Dad.
Carol
Gale, I also meant to mention about insurance for RFA. We’re still fighting a $15,000 bill for it. The doctor said he got it approved, but when the bill came in, our insurance said they wouldn’t pay it. So be careful. It’s so draining having to fight the hospital and the insur. company. I hope you won’t have any problems.
Carol
Thank you Stacie for letting us know. Bless you Peter always. Peace and love to you.
Charlie and Carol
Hi Gale, Charlie had RFA in April this year. It went really well with just an overnight stay and he bounced back pretty quickly too. It was completely successful and they burned 1 tumor, but at the same time found other tumors they had not been aware of and that were too big for RFA. I hope everything goes great for you. Let us know. Burn that tumor!
Carol
NO strange pity looks for us, right Jeff? Have you had the “quantity versus quality” speech yet when you think they’re giving up? Just when the doctors want to give up, you and Charlie (and many others on this board) jump up and surprise them. Let us all be encircled in Christ’s love.
Carol
No hair loss for Charlie either after a lot of Gemzar, Xeloda and oxaliplatin. Everyone always says how great he looks and he does. He says sometimes he thinks people expect him to roll in in a wheelchair.
Carol
Karen and Darla, I know what you mean. The word palliative – not what we want to hear. We want a cure! Also, the talk of quantity of life versus quality of life sometimes feels like a death sentence. But we keep fighting.
Carol
All of you women are amazing – Darla, Sue, Lainy, Pauline, Joyce, Rachel and many others. I really admire you all. Keep talking and keep holding on to each other and to all of us.
Carol
Karen, great news about the dead tumors. I’m so sorry about the new tumor. Charlie also has numerous tumors in his liver. We were told his tumors are too big for Cyberknife and also wrapped around the bile ducts. I’m glad Rob was able to have Cyberknife. Charlie’s doctors are also presenting his case to the tumor board. We’re always waiting to hear about something, aren’t we? We’re anxiously waiting insurance approval for SIRspheres treatment. The cancer does seem relentless sometimes, doesn’t it? Take care of yourself and keep us posted on the tumor conference.
Carol
Lainy, I hope this week will be better for Teddy. That would be a sight, wouldn’t it if we went after the insurance companies!? Keep lighting those candles Teddy. Lainy, praying for Cigna to do what they need to do for him. Let us know how the PET scan goes on Mon.
Carol
Thank you for your post Wayne. Right now, we’re in the process of waiting for our insurance to approve this procedure. We met with Dr. Kennedy in Cary last summer, but got a call from UNC Hospital for resection. Charlie had that done, but unfortunately he still has tumors in his liver. After much chemo and many other procedures, we met with Dr. Kennedy again last week and all is on go for the SIRspheres except BC approval. We’re hoping to have it done the first of Dec. Charlie said he won’t have it done without approval first because of the cost. In the meantime, he’s having another IV oxaliplatin infusion next week along with Xeloda pills hoping to keep the tumors stable until insurance approval. I really appreciate all the information you’ve provided. Praying for a miracle with the insurance co. We really like Dr. Kennedy a lot! Sounds like you had a good experience with him also. I’m sorry Valerie’s cancer had spread.
Best wishes,
Carol
