November 21, 2008 at 8:56 am #24189iris-aMember
My Peter has had radiation from a very good radiologist last Wednesday. It was a one time radiation, since one of the tumors started to press on his spine and there was fair chance of a transverse myelitis. This has been prevented now. Peter is very tired now, but he can lay on his back again. We both wish you all te best,
Iris.November 21, 2008 at 2:45 am #24188
Lainy , No I have never had cyber knife. I was repling to your comment about he could be sick to his stomach. I’ve had 3-D external radiation a couple times. Saw Oncologist today he couldn’t believe I was not in pain and cutting back on dosage already. Plan is to press on with tarceva another month and sacn to see if it is working or not. Only side effects is splitting finger tips and red dry rash around face and mouth . Keep under control with moisturizing lotion about 10 time a day. Also tarceva is a second line therapy. I may be wrong, but some hospitals have a protocal that certain drugs are not given unless you are in a medical condition where 6 months of life is highly probally. With all my mets and complications it may be easier to push usage through the hospitals tumor board which you can ask to sit in on your case I believe. But Others have tried it as well, were they on trials I wonder? Maybe try something similiar to a request for compassionate use of certain other trial drugs. I know it has caused death and many severe reactions, that’s why I was so hesitant in the first place and in fact turned it down initially. I’m not sure what hospital violrob from texas is going through. Maybe he can suggest something. Hope the best for you all. If it is the insurance companies, the fight must go on. I hope this world financial is not playing a role in it.
JeffNovember 21, 2008 at 12:12 am #24187marylloydParticipant
Great news Jeff. You just keep on truckin’! You are a miracle. My Tom went in for a stent change and they inserted a microscopic camera to try and get some pictures on Monday. He wasn’t sedated enough for them to get many this time so they’re going to put him under anesthesia in Jan and try again. We have a new Dr doing his ERCPs and he seems very intrigued by Tom’s success so far. He says what he saw just looks like scar tissue. He said he’s never seen anyone have this success with radiation and chemo. We all just have to be grateful everyday for our miracles!! Happy Thanksgiving to all. MaryNovember 20, 2008 at 11:09 pm #24186marionsModerator
Lisa…we had also been denied several drugs by Blue Cross/Shield. Before you want to speak to the insurance company I would see if a case worker can be assigned to you. What we had found out that once someone on the insurance side was working closely with me our odds increased significantly, in receiving special permissions for some of our requests. In our experience, once the oncologist had spoken to a physician at the insurance company then the decisions made were entered in to the computer and the case worker did not have the authority to overrule those decisions. It is worth a try.November 20, 2008 at 8:30 pm #24185lisaParticipant
My insurance company (Blue Cross/Shield) won’t pay for Tarceva for cc.November 20, 2008 at 8:04 pm #24184carol58Participant
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.
CarolNovember 20, 2008 at 7:56 pm #24183
Oh boy, Jeff….did you have Cyber Knife…I can’t remember. I had thought there was very little side effects involved! The doc called this morning to tell us he is ordering Zofrin! We were hoping Teddy would be ok for Xmas but if he finishes
Dec 22nd…Mmmmm.November 20, 2008 at 7:49 pm #24182
Hi Lainy, no buts about it, it has to work. My prayers ,faith and Hope are with you guys all the way. Have plenty of tummy upset medicine on hand.
JeffNovember 20, 2008 at 3:44 pm #24181
OMG! Jeff! That is such wonderful news! Step by step you are knocking them out! Pretty soon you will be our bionic man!!! Keep fighting as you are such hope for everyone!! We just love you!
P.S. Got Teddy’s schedule for Cyber knife yesterday. Nov 25th implant the seducial gold rods. Dec 16 – 22 (5 doses) and then he will be done. They tell me he will be as weak as he got from radiation. Could be sick to his tummy too. Too bad its right before Xmas but if it works!!!November 20, 2008 at 3:37 pm #24180darlaParticipant
Good news. That is wonderful. Everything sounds very positive. Keep us updated when you can. Look forward to even more good news! I will keep you in my thoughts & prayers.
DarlaNovember 20, 2008 at 2:59 pm #24179
Veroplasty/kiphoplasty— was sucessfully completed on Tuesday. T-9 and t-10 vertebral had cancer hollowed out and bone cement hydrualicly pressured in to space. I stand straight and pain level appears to have dropped to almost nothing. I’m slowly backing of the pain meds to see where I’m at. Next approach I’ll be fighting for is to have soft tissue tumor removed from around the t-12 area. You never know. I have contacted a Dr. at mayo and confidentially says it can be done. Follow up with Oncologist today and see what his feelings are. Tarceva, I’m still on and no side effects other than dryness of hands and faceThat’s it for now.
JeffNovember 18, 2008 at 7:06 am #24178jeanMember
I know many people who have had that procedure with great success, it really has relieved their pain. So, I’m wishing the same success for you tomorrow. We will all be waiting anxiously to hear!
All my positive thoughts and prayers for healing going your way.
JeanNovember 15, 2008 at 4:23 pm #24177tiapattyMember
Jeff, with all your treatments and procedures, you’re our Six Million Dollar Man! Better, Stronger, Faster!
PattyNovember 15, 2008 at 2:05 am #24176
Jeff that is great! What happened with the crazy glue?? We will be praying for a fabulous outcome!!November 15, 2008 at 12:16 am #24175marionsModerator
Jeff…..my Aunt had the procedure with great results. Expecting for you to have the same outcome.
hugs coming your way
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