carol58
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Kris, Marion and Jean, thank you all for responding. Good thoughts about the humidity, Kris. The heat is very drying. I’ll check that out. I hope you’re doing well!
Marion, 1/2 of the generic will probably do the trick. I’ll have to look back, but I think we always get the Zolpidem (generic) because of the tier levels of our drug policy and it’s quite a bit less expensive. I’ll need to research that again. You’re a godsend with your good advice!
Jean, I just wasn’t looking at the right place on the Internet. Thanks for finding it for me. I had a suspicion that might be the case with Ambien.
Off to work and a call to the oncologist. Thanks again. Hope everyone has a blessed day!
Carol
Hi Vincent, I think telling a cc patient 6 months to live is what most of the doctors say. Don’t listen to them. Charlie was told 3 to 6 months in May 2007 and he’s alive and kicking now and looking forward to 2009! Did you say your Mom would try chemo if offered? Just throwing things out there to think about. I know some of the most used chemo drugs are Gemzar, Xeloda, oxaliplatin and I’m sure there are others. We’re very interested in Theraspheres also, but our BC insurance is denying it. We’re in our last attempt to get it approved. I hope that your mother’s insurance will approve it if she’s eligible for it. Some insurance companies do. It sounds really promising to at least give us a little more time. I think there are too many variables to figure out the shortest time and longest time to live with cc – so many factors involved in each individual case. I wish you all the best. Please keep us posted.
Carol
Hi Barbara, some people respond very well to Gemzar and Xeloda. I hope that you will be one of those that do. Usually the side effects for both of those drugs are not too awfully bad. It sounds like you are being very proactive with the change in doctors. Seeing the doctor every 3 weeks sounds good. We only see my husband Charlie’s oncologist once a month or sometimes every 6 weeks so every 3 weeks has got to be good. Everyone here understands the shock of this diagnosis. Keep researching and being proactive like you are now. Keep us updated on your progress. Hoping for a cure. Best wishes to you and your family!
Carol
Rachel, I’m so sorry about your Dad. Thank you so much for posting your journal entries. I’m sure they will be helpful to many people. None of you will be okay for a long time. It’s so hard to lose our loved ones, but I know you will make it. Continue to post as you’re able. Take care.
Carol
Dear Jeff, I hope the meds get your pain under control quickly. I pray the transition with your Hospice team goes smoothly. I know you’ll tell them what you think. Lots of love to you and Valerie!
Carol
Suzanne, it’s ok to be angry and keep on fighting. Charlie has had some of the same things happen during his illness. His liver resection was successful, but tumors were back in his liver just a few months later. He’s had a lot of chemo (I think about 30 weeks of different kinds over 18 months) and it’s never done anything but keep the tumors stable or one tumor grows a little and one tumor shrinks a little. He did have chemoembolization last year before his resection and he said it was worse than the major surgery and it didn’t change his tumors. Maybe you’ll have a better reaction. I hope so. I’m sorry you didn’t get better news. Would another doctor’s opinion give you any more information? Best wishes.
Carol
Charlene, I am so sorry about John and so thankful that he was not in pain. We can never prepare for this even when we think it will be somehow a relief. I’ve not lost my sweet Charlie yet, but I have lost other close loved ones. It is never easy. You will make it and we will be here for you and with you. Please take care and post when you can. Much love to you.
Carol
Great news Jeff. You’ll be back at Lowe’s before you know it. I’m curious about Tarceva. I’m glad no side effects yet. I wonder why it’s not being offered to Charlie? His UNC Hosp. oncologist told him no on Nexavar, that it doesn’t work for cc and the only thing would be experimental drugs or maybe a couple of early stage trials. Baptist oncologist said no on Nexavar because insurance won’t pay for it and hasn’t offered anything else. Wonder why not Tarceva? I’m so glad you came through your procedure well and your pain level is dropping. Love to you and family.
Carol
You’re welcome Jan. Anything I can do to help, I’ll be glad to. That’s great that your Dad’s appointment went well with his doctors. Keep us updated on how he does with the chemoembolization. I’m glad you’re consulting with Dr. Kennedy too. He’s very good. I have your number, you have mine. We’ll be in touch. Praying for good things for your Dad. Take care of yourself!
Carol
Hi Tess, I’m sorry you have to be here for this, but glad you found us. Can I ask how old your Dad is? This is our experience only. Charlie (age 53) had 14 weeks of gemcitabine last summer after being diagnosed in May 07. At first, it seemed to help. He started feeling better, eating better. But after about the 7th week, it went downhill and he just felt worse and worse. At the end, the tumors had not changed at all. He was on a rough regimen of it. 7 weeks every week, 1 week off, then 7 more. Since then, we’ve heard more of 1 week Gemzar, 2 weeks off or something like that. Another doctor told us that was a very rough schedule and should have been taken slower. Anyway, it wasn’t successful with Charlie, but many people on here have had good success with it. It’s so hard to tell. Everyone reacts so differently to the drugs. In hindsight, my thinking is (if i had known) as soon as Charlie started feeling bad, we should have stopped it or had longer intervals between infusions. Your Dad might perk up like Charlie did at the first and feel better, but if he starts feeling worse after a few weeks, you can always stop it or change it. I hope this isn’t too confusing. Hoping for the best for your Dad.
Carol
Thanks Lainy. I’m so glad Teddy is getting ready to have Cyberknife.
Hey Marion, no reason, but believe me, I’m going to ask. Same doctor that wouldn’t sign the form for a handicapped sticker for Charlie. He doesn’t want to sign anything or do anything extra. Nice guy, but I don’t understand it. Maybe it’s time for us to go back to Chapel Hill. It’s a 2 hour drive, but might be worth it. I guess Charlie’s tumors fall into the more than 6 cm category since he can’t have Cyberknife. Thanks for finding that out. It’s good information.
Does anyone know of (especially the NC people on here) of any oncologists at Forsyth Hosp. or Wake Forest Baptist Med. Center who give a damn?? Sorry, just slipped out, I’m still so frustrated. Charlie is still eating, doing what he can when he feels like it, definitely not ready to give up. But when your doctor seems to give up and insurance denies, what do you do? I mean it’s possible Charlie could live quite a bit longer with the spheres procedure. He’s in good health except for his darn liver, no mets, good attitude. But if we keep waiting….well we know what will happen. There I go venting again. Thanks.
Carol
Thanks Bill for the good information. We’re not giving up.
Hi Jan, your parents are so close to our house. We probably go right by their house or close to it on the way to church. I did get your contact info. and I’ll be in touch soon. Thanks.
Carol
Wow, your parents are close by. I can get to the Reynolda area in about 5 minutes. We’re between Shattalon Dr. and Bethabara Park Blvd. Lunch would be great. Charlie and I would be glad to meet you.
Charlie isn’t eligible for Medicare until 24 months from his diagnosis, which will be May 2009. He’s on disability after a 6 month waiting period for it. The Blue Cross of Illinois insurance he has now does not approve SIRspheres, but we’re in the appeals process. It’s not looking too good, but we still have hope, always hope. We did qualify for Medicaid for 3 months, but that was all and it was because we had so much medical that could make up their deductible. So as far as I know, Medicare/Medicaid won’t help us right now. His ex-employer is still paying for his BC until the end of this year. After that, we’re on our own. Will be paying $750 a month for his and my Cobra coverage. Right now, we’re only paying $325 for me. Have to do that for 6 months until Medicare is available. Unless anyone else has other ideas??
Carol
Sure, sort of a long story though. Charlie was with an oncologist at Forsyth Hosp. last year when I first researched the microbeads. Dr. Kennedy’s name kept coming up on many of the sites. At that time, we weren’t happy with our dr. at Forsyth so I contacted Dr. Kennedy directly. We would have gone with that procedure if our insurance approved it last year, but I had also contacted UNC Hosp. and a surgeon called us to do a resection so that’s what we did. Now, I just trust Dr. Kennedy completely and I wouldn’t want anybody else to do the SIRspheres except him. We feel like he’s the most qualified and knowledgeable doctor to perform it. It may not matter anyway because it’s looking like Blue Cross of Illinois is going to deny it even after appeals. Still working and hoping though. I don’t have the answer to being coupled with chemo. Charlie’s had a lot of different kinds of chemo. I think even the SIRspheres alone would help him. Your welcome. I hope you get the answers you need.
Carol
