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#2726 06-12-2004 07:08 AM
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Eric,
I live in Houston and was treated at MDACC. My cousin, a well respected radiologist in town recommened that I go for treatment to Methodist Hospital, which is private, where I would get more personal treatment. I opted for MDACC. It does sometimes feel like a cattle call, but, as Brian said, they know what they are doing.

By the way, if you come to Houston, I will personally get a couple of Astros tickets and take you to the game. Even better if the Diamondbacks are in town ( unless that darn Randy Johnson is pitching!).

Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
#2727 06-12-2004 03:22 PM
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Eric,

Definitely go to MDACC. You can't afford to take half-measures when fighting this disease. I wish we hadn't been so concerned with time, money and distance when Heather was first diagnosed. Unfortunately, I didn't find OCF until after she had her surgery, so we didn't really know any better. She did have an excellent surgeon, but it turned out that just wasn't enough.

Rainbows & hugs, wink
Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
#2728 06-14-2004 10:06 AM
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Eric,

I guess I'm a little late in chimming in, but I'm also a M. D. Anderson "graduate." I decided to get my treatment there because my research consistently showed them to be top cancer center in the country. Given that they were here in Texas, I mainly wanted to take the best shot I could at defeating the disease. I didn't want to get my treatment in Austin and then find myself in the future saying I should have gone to M. D. Anderson. If you take your best shot, then no matter what happens you took your best shot.

They treat me very well. Yes, they are busy, but the best treatment available is worth the wait. You can't go wrong getting treated at MD.

-Brett


Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
#2729 06-25-2004 06:58 AM
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After much wrangling and many phone calls, we're all set to go to MD Anderson next week. We fly out from Phoenix on Monday and have appointments on Tuesday.

The tough part is that the radiation oncologist that came recommended to us is on sabatical and not taking any new patients. So we're going to someone unknown to my Phoenix oncologist.

I feel good about this decision as I want to get the best minds on my case. My beef with MD Anderson, though: they may be good at treating head and neck cancer but they are pretty lousy in public/customer relations. I don't how many phone calls we had to make just to get through to humans instead of voice mails. People were always "gone for the rest of the day" or "out of town this week." Or we got: "there is only one person who can answer that question and she's not available right now, but she'll call you back later..." Etc.

I guess that's the trade-off when you go to someplace large and well-known. It's just tough because my ENT for example bent over backwards for us. He'd push pathologists to get test results to him early so we didn't have to sweat. He'd call us from his cell phone after surgery. He'd race over to his office from the hospital on his mountain bike when we heard we were in town, etc. Call me spoiled...


Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
#2730 06-25-2004 07:02 AM
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Eric,

I am sorry you had such a runaround with MD Anderson. I am glad you finally got everything resolved and are headed to ZZ Top country! My experience was so different. I called one day, faxed biopsies, doctor notes, etc., later that day and spoke with a person twice the first day. They rapidly arranged for a telephone consult with my otolaryngologist in lieu of me going there in person since my timeframe was urgent. They concurred with my otolarngologist immediately and the entire process was within 24 hours. I was very impressed.

Good luck and I hope He guides you to exactly what you need to successfully kick the C in the a--!

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#2731 06-25-2004 12:06 PM
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Actually the worst part about my upcoming MD Anderson trip -- the Houston Astros aren't in town... haha... Too bad, since they play the Cubs...


Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
#2732 07-03-2004 07:55 PM
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Just got back from a trip to MD Anderson this week... wow, what a place...

I have a newfound respect for MD Anderson after seeing it in action. Yes, there is a cattle-call feel about it at times, but a lot of folks also bent over backwards for us when we told them we were there from out of town and only had a few days. I had to laugh when they call you six at a time to do bloodwork, and sit you down in chairs right next to each other in the same room. A bloodwork assembly line -- how novel!!

Basically, they confirmed everything my docs in Phoenix were saying, so that was comforting. We are going to stay in Phoenix for this round of treatments, only because I will be on the same IMRT machine, and the Phx folks are familiar with my initial treatment plan. At one point, they even considered using my old mask -- believe it or not I held on to it for some reason -- but it is too loose now since I lost a lot of weight from the first go around (and lost a nice chunk of my left neck from my recent radical neck dissection).

I went in for my simulation on Friday (kind of like reliving a nightmare in some ways) and will likely start treatments either late this week or early the week after. This time we get to add chemo to the mix -- joy, joy...

But I intend to deliver the knock out punch to the cancer this time around. Time to get back into fightin' mode...


Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
#2733 07-04-2004 03:09 AM
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Eric,

I'm glad you were able to get such a thorough review of your case at this stage, and I hope this truly is the knock-out punch. You have lots of prayers going with you every day.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#2734 07-04-2004 03:53 AM
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Eric, It's good news that your Phoenix Dr's were confirmed by MD Dr's. That should make you feel good. It's unfortunate that you have to have another go at it, but at least there is something to have a go with. If you are getting chemo and rad is the chemo ciplatin? That is the common chemo to go with rad and what I had. So far, the cancer was killed in me with that combo. Hope it goes well with you. You will be in my prayers over the next few months, at least.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
#2735 07-04-2004 07:20 AM
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Eric,

I'm glad things went to well at MD Anderson and that they were able to confirm what your AZ doctors had to say. Good to hear that you can do your treatments from home. Sorry about having to go through radiation again but at least you'll know what to expect and know that we're here for you. You sound so upbeat that you really lifted my spirits today. I'm ashamed to say I've been feeling a little down but your attitude has brought me back down to earth again. With that positive thinking, I'm sure you'll be able to kick this cancer in the butt this time for good! Good luck, keep us posted and I'll be saying my share of prayers for you.

Nancy


Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
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