pfox2100
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pfox2100Member
Okay thanks for the input. My brother is in either chandler or Gilbert I can’t remember is it best to call or schedule online!
pfox2100MemberThanks I will look into that. Info start chemo next Friday? Is mayo (I’d be going to Arizona) something people can tend to get into that quickly? Can I start my chemo and go for a second opinion after that?
pfox2100MemberYes it is possible though I feel like I am going to get the same feedback if I go to mayo which would be the only place I would get a second opinion due to location and feasibility. So I am not quite sure how I feel about getting a second opinion at this point..thoughts?
pfox2100MemberHi all. Well glad to say yesterday is over and today is a new day. Had my first pet and onc appt. informed once again being diagnosed with ICC. She also informed me that I was definitely mis diagnosed in 2010 with the hemangioma and I have been living with this cancer for over 3 years. The most shocking and yet exciting news is though my mass is over 15 cm all the cancer to this point is confined to my liver. A prognosis was not given. Is this normal for oncs not to give this in less the patient asks? I asked her about stage and she said she would stage it as a 3. I start chemo next week with 2 weeks on 1 off and will be having a port put in which I had never heard of before. She said the chemo treatment will shoot for 6 months. They continue to tell me it is very unlikely that I will ever have surgery or a transplant but hopeful the chemo will do its job and that I will respond well. So my fight and journey will continue.
pfox2100MemberHi danna welcome I just joined last week and was diagnosed a few days before that. This site has been wonderful. I just wanted to reach out to ya. I am 34 single mom of 2 kids 8 and 6, so I know exactly how you feel. Though I will start getting more info on my diagnosis Tom when I meet with my onc. Much support and care towards your way!
pfox2100MemberHi I completely understand how y’all feeling. When I was 30 I after multiple images and scans I was diagnosed with a small liver hemagioma . Until now I have even been getting scans every 6 months which has showed steady growth until the last 6 months where it doubled its size and was just last week diagnosed. My ca19 9 slightly elevated as they said nothing to lose sleep over before I got diagnosed. Liver function tests and bloodwork all within normal limits and generally I feel fine. This has been beyond frustrating and angering as if they got this right the first time I most likely could have been operated on. I am learned to accept this diagnosis not own it but accept it and because of this site I have new found hope strength and desire to fight. Trying to let go of fear and anger and take each day each moment one at a time. Much strength to you and your mom and again much care to everyone here. So grateful I have “found” you all!
pfox2100MemberMatt just hearing your story and being similar gives me hope. Thank you and everyone for sharing. I’m signing off for tonight. Much strength faith and care to you all. Ill be in touch with you guys very soon.
pfox2100MemberNo bc I don’t think I’m there yet. I have my first pet scan Friday and first appt with vacarro after the scan.
pfox2100MemberMatt I just saw your post. Thank you for sharing. And again I am very glad I have found this site and able to talk to people who are going thru the same thing!
pfox2100MemberI apologize for all they typing errors and such not too familiar with my phone
pfox2100MemberWow what a story. So I have been referred to dr vaccaro. 3 years ago I was diagnosed with a 5cm with a liver hemangioma with 6 month scans. Went to er in may for pain and 2 months later I have been diagnosed and they say my liver mass is 16cm. I am not seeing anyone having masses this large and feel beyond hopeless. Does this mean that the bile duct cancer has metastasized into my liver and I’ve lived with this mass for over 3 years and they are just now telling me its cc. I am not ready to leave my children I lost my mom who wa not blood to cancer but she raised me since birth. I am young and I will fight this as much as I need to. I am otherwise healthy bloodwork normal liver tests normal only symptom is slight tolerable pain. First biopsy showed mass was benign and was ordered the second biopsy and that is when I was diagnosed. I have so many mixed emotions and I am so mad that this appears to be a mis diagnosis 3 years ago when it probably could have been removed. Sometimes I feel like screaming!!!!
What do you think of Vaccaro? I was first seen my dr Orloff.pfox2100MemberI would love more details. I am what they say not operable. Who was your docs?
pfox2100MemberCongrats that’s wonderful news
pfox2100MemberThank you so much for your support. I am so confused about this diagnosis as I feel fine in general. The mass on my liver 3 years ago was 5cm over the past 3 years it grew steadily but they were not concerned. I went into er and found out that this thing is enormous. I find myself being very angry! How could they let this happen? I am now not operable and I am terrified I will go in on Friday and be told that no treatment is available. Some days hopeful the last couple of days I feel hopeless. At this point I don’t know what’s going on and awaiting my first pet scan Friday. I look at my two kids and just break down and cry. I still can’t believe this is happening. But thanks to this site I don’t feel so alone. I appreciate and send out all my faith care and compassion and admire you all!
pfox2100MemberI am overjoyed with all these readings, care and support. This is exactly what I have been needing. Thank you
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