3 years 9 months ago - 3 years 9 months ago#49808by CatherineH
Hello Henri... I would love to give you a big hug right now. I know it was devastating to get that news Friday. It sounds like you are now armed and ready to do what is necessary to fight back. If there is any consolation in all this, it is that you are being treated at MD Anderson. People come into our lives for a reason, and JoAnn was there at the right time for you. What a gift that was to let you know there is hope just when you needed to hear it.
I hope you will stay with us here since you have been "adopted" into our family. Please let us know how you're doing and feel free to let us be a sounding board as you go through your treatments. Venting is encouraged when you have no one else you can talk to, or don't want to worry your loved ones. We care about your well-being and will be your biggest cheerleaders!
Best wishes... Catherine
Forum Moderator Team
TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Last edit: 3 years 9 months ago by CatherineH.
The following user(s) said Thank You: Henriz, dani
Well, it has been confirmed. I do have advanced vaginal cancer. Stage IV. The doctor at MDAnderson was puzzled that it had never shown up on annual exams and pap smears during the past 10 years. Interesting. But it is what it is, and there is nothing to do about that. I was certainly also misdiagnosed here in Granbury.
Anyway, I think I have a great team of doctors at M.D.Anderson. They have recommended three Chemo treatments of three different drugs (Paclitaxel, Carboplatin and Bevacizumab [Avastin]) three weeks apart and then back for another CT Scan to see the results of the treatments. I had my first 7 hour Chemo treatment yesterday. It was a long day, but not painful and no bad reactions to the chemo drugs. They first gave me a combination of drugs first for anti-nausea which most people say put them to sleep. Not me. They kept me awake for the entire time. (Ha Ha) We drove home from Houston after the treatments.
This morning, I feel fine. Perfectly normal in fact. I did take my anti-nausea pill which I take every 8 hours for three days. I guess it is doing its job.
After the diagnosis I was devastated. Crying, praying, crying, praying. Debating whether to have the treatments or just forget everything. My husband was talking with a lady at MDA. He came and got me and said you need to talk to JoAnn. I didn't want to talk to anyone, but I finally did. She had almost the same cancer and same diagnosis 6 years ago!! She answered so many questions that I had, and many I didn't know I had. After talking to her, I felt so much better about my decision to go forward and fight to Live.
I just wanted to give all you great supporters an update. So far, so good. Thanks for being here. Just knowing I had someone to talk to during this ordeal has helped me a lot already.
Henri, I just want to wish you good luck with your tests this week. I'm sure that you will feel much better once you have a clear diagnosis and treatment plan. For me, the time that I spent in 'suspended animation' just waiting for tests and test results was the hardest part. Once I knew what I was dealing with and my treatment path, it was much easier. Hopefully, it will be the same for you
Take care and keep us posted,
Dx 5/28/15 with 4.2cm x 2.2cm Ta HG Papillary TCC; 2nd TURBT 7/09/15, NED; 6 BCG completed 9/30/15; 3 sets of BCG maintenance completed 1/26/17. Six cystoscopes - all NED. Moving to scopes every 6 months, and no more BCG maintenance.
Thank you all for your posts, thoughts and prayers. I appreciate them so much. It is so delightful to open my emails and see that I have a post from someone. Like a close friend. (smile). I have only told a few close friends about my situation as I really don't have a definitive answer as to what my problem really is. I am hopeful that I will find out more the end of this week when I have my tests on Thursday and Friday...mostly Friday. I do have the mammo tests on Thursday, but I feel they will not be significant. Although they said the CT scan showed some nodules on the breasts, my former mammo and sonos that I pick up back to 2011 showed that they have been there. So I am hopefully, they are all jus "still" there with no problem areas.
So, Friday is my appointment with the gynecological department and I am hopeful that I will find out something then and be able to set a treatment program in progress.
I do have a notebook that I am writing notes in every day. I took the notebook to my doctor's appointments last week, but found I didn't really have time to write any notes while I was in with the doctors. I did have my questions written down though, so that helped. I filled in my notebook as soon as I had time.
I am trying to keep an upbeat attitude and go forward. You all are a big help.