suzannegm
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Thanks for everyone’s input. Quite honestly I’m scared to pieces of both chemoembo and radioembo. Chemoembo REALLY scares me. I finally today received a response from my oncologist (at Emory in Atlanta) regarding getting some guidance from him on helping me make a decision. He told me that my scans were today reviewed by the tumor board and that chemoembo is recommended, but either way I go I need to do something soon.
I’m so afraid that either one of these procedures will upset the delicate balance I have going on, I have no pain or other major side effects except from regular chemotherapy.
I’m afraid I’ll start going downhill if I do this. But I guess I need to do something. Someone tell me what to do.Hi Marion – Quite honestly I don’t know how it all happened so fast, or why it went so smoothly. I think I will receive some sort of package from SSDI at some point, and maybe that will provide more information on the process. However, the person that I worked with at the social security office here locally in Georgia was amazing. Her son had cancer in the past so maybe she related to me on that level. I chose to do a phone interview instead of going for an in-person interview. One thing I did make sure to emphasize is the prognosis of this type of cancer. I know miracles happen every day, but reality is reality. But I just don’t know, at this point, what the magic combination is that made it go through so fast.
Wow Jean! What a lot of great information! I did in fact, yesterday, get in touch with my case manager at BCBS and she was able to guide me as to what to tell the doctor to say. Isn’t is silly that we, untrained professionals, have to tell the doctor how to navigate an appeal and what to say. My case manager also said the appeal needs to be generated by the doctor. I was able to get hold of my doctor’s nurse practitioner and she was able to get the ball rolling with the doctor. They will do the appeal for me. I had no idea who to talk to or how to get this going. You helped give me the back bone to go back to the doctor on this. Thank you for all your help! Happy New Year to you and your family!
Hi Violarob – my understanding for the reason my doc wants to do a PET/CT is because I am looking at doing chemoembolization or radioembolization and the PET will help him see how much of my very large tumor is still viable, so the embolization will be more accurate. There is a possibility some of my tumor has died due to the chemotherapy I’m on. Thanks for you support……Happy new Year!Hi Jean – thanks for your help. You guys try to stay safe and warm over there. Here in the south we’re having above average temps. Hope you had a Merry Christmas. I’ll wait to hear from you as soon as work gets back to normal where you are.
Wow! I love this website! Thanks for all the support and the advice. I’m blown away.
Jean, you’re going above and beyond. Thank you. I’ll look for your post later today or tomorrow.Hi Jean,
Thanks for the info. My doctor says he will help me only AFTER I make the appeal to the insurance company. What am I, a doctor? I don’t have the medical knowledge to make a proper case. This is so frustrating! Plus, I’m getting information from a family friend/radiologist that the liver normally shows up very bright on PET, so it’s really difficult to see anything. But I read on this web site of people getting good information from a PET. I’m very confused. I don’t want to give up but this is almost more than I can take.
Suzanne
BCBS denied the PET because they say it is “experimental and investigational for cholangiocarcinoma”.
I understand your frustration. BCBS has denied me a PET scan that the interventional radiologist thinks is necessary. Does anybody have a template of an appeal letter I can use. I have NO IDEA how to write one. I have no idea what I’m doing. HELP!
Jeff – again amazing words of wisdom. Thank you. I’m trying to keep a “fight” attitude. I just hope I’m being given the opportunity to get as aggressive as possible.
Colleen – how did your husband decide on chemoembolization? The radiologist is telling me there is no statistical data showing which is more effective, chemoembolization or radioembolization. Because I am not presenting with typical CC symptoms, my case is even more unusual. Plus there is no way to know if either will work.
I’m really struggling to make this decision. Why can’t this be easier?Thank you all for your posts. Don’t know what I would without this website. I’m doing as much research as I can before turkey day.
Hi Gary,
I have been give Neulasta and Neupegen for low wbc count caused by chemo. The Neulasta was WAY to strong for my system and sent my wbc count into the stratosphere, also caused me about 4 days worth of severe bone pain. The neupegen is much milder to my system but still boosts my wbc count enough. I am able to give the neupegen shots to myself. From what I understand this is a standard treatment for low wbc for chemo patients.
Don’t be surprised when your platelets drop and they recommend a Procrit infusion to boost your red blood cells. This is normal for chemo too, based on my experience so far.
Hang in there. We’re all in this together and we can get through it.
I have a Nintendo DS that I take with me to chemo, and do crosswords, hide-a-word, anagrams, etc, that . Also I take a book, my ipod, and the portable DVD. However, most of the time I end up watching TV, talking to my husband, or the people around me (the “chemo room” is open so there are several people getting chemo at the same time). Somehow, 4 or 5 hours goes by before I know it.
