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#50914 09-08-2004 06:14 AM
Joined: Jul 2003
Posts: 1,163
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Hello Nicki,

The first steps on any journey are the most frightening. Don't let the mask on Tom bother you one bit. That mask is critical in the use of radiation treatment. My treatments were only 15 minutes long. The machine never broke, no delays at all. I had IMRT radiation and luckely had no side effects from the rad at all. I tossed my mask in the garbage today. It was sitting on a shelf in the basement. Why would I save that!!!!

One important thing for both of you to remember is to input enough nutrients to both maintain and heal. Talk to a nutrrisinist to find that out.
Another thing to remember is a general rule of thumb is one month of recovery for every one week of radiation. When the radiation ends alot of us became depressed. All of a sudden your all alone. There are no more treatments except follow up scans. Just beware this could happen to Tom. Most of us are on anti-depressants. Alot of it has to do with quality of life issues. Different for everyone but a reality to.

Remember to ask anything you want to, someone will answer. You are a valued member of this forum and I know I and many others are pulling for Tom to beat this bastard of a diaease. He is lucky to have you as his primary caregiver. Your love and caring shine through in your postings.

My wife told me something when I started all this a little over a year ago. I thought you might like it. Remember, "This To Shall pass"

Love Ya, Your Friend, Danny Boy


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#50915 09-08-2004 06:33 AM
Joined: Dec 2003
Posts: 116
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The mask is a state of mind. I was quite uneasy with it and found my self hyperventilating with it. I calmed my self down before going in and thought the most pleasant thoughts while it was on with my eyes closed. That seemed to make the time pass and go easier. I was in it for 25 minutes each time because of IMRT.


SCC R-Tonsil T2 NO MO Dec 2003. Completed IMRT Radiation only to tonsils(72Gy) and neck(55Gy)March 04. Detected at age 50.
#50916 09-08-2004 06:36 AM
Joined: Jul 2003
Posts: 1,163
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Dear Nicki,

On a follow up to my last posting I wanted to share with you my experience with this forum. Tom and I are almost 1 year apart in dx. I was lucky to find this website prior to my treatment and was stunned to know I wasn't alone.
Some of the older posters like Gary, Mark, Mandi,
Karenng, Rosie, JetageHobo (Bob), Dee & Packer, Helen, Judy, Dianh, Christine, and so many others were there to answer any question I had. They gave me advice on what to expect as well as love and support. It meant the world to me and still does. You can't find better information on Oral Cancer than you can on this site.

We are talking people from all over the world.
This forum has had a huge impact on not only it's over 1500 members but I know Brian receives
millions of hits here monthly.
I was vere tentative at first not knowing anyone, not knowing what to ask but as time went on I felt like part of a huge international family.
Soon I was the one that could offer advice and my experiences with different treatments. I was able to help someone else. Offer comfort and Prayer. That I hope will happen to you also.

I have a new life and at times it ain't so hot but I will always have a home here.

Who better to ask than someone who has traveled the path ahead of you? I've rambled on enough for a hayseed from Wisconsin, Everyone who knows me as you can tell I'm feeling better regardless
of my dx. I am Here!!!

Love Ya All, Danny Boy


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#50917 09-08-2004 06:44 AM
Joined: Dec 2003
Posts: 116
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You are so sweet, Danny Boy...here's a big cyber-hug! (((((((((((Dan))))))))))))

wink

Christine


Wife of Scott: SCC, Stage I retromolar 10/02--33 rad; recurrence 10/03--Docetaxol, 5FU, Cisplatin; 1/04 radical right neck, hard palate, right tonsil; recurrence 2/04--mets to skin and neck; Xeloda and palliative care 3/04-4/04; died 5/01/04.
#50918 09-08-2004 06:45 AM
Joined: May 2004
Posts: 218
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Nicky,

I will never forget that as long as I live.
The first time they strapped that mask on me and gave me radiation I cried out loud and actually made them stop. They had to give me a seditive to calm me down. I did get used to it after a while but its kinda like when you first lose your hair. The stark reality that you have cancer is upon you and there is nothing you can do about it.
Good luck, god bless, & FIGHT FIGHT FIGHT.
Robert


SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04.
41 Years Old At Diagnosis
#50919 09-08-2004 08:05 AM
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Nicki,

I am so sorry you had to see Tom in the mask. I didn't think much about it but I did not want my wife to see me that way. I saw a photograph and it made me look much more helpless than I really was (at that point at least laugh ). My only fear was when I was feeling queasy and worrying about about puking in the mask or choking on this horrible thick brown goo that develops in the throat towards the end of radiation. I never did and all that worrying was for nothing. I made the techs promise they would listen extra carefully for any gagging and rush in to help me. They were just great about it.

By the time you read this...33 left! I am on the finish line, cheering you both on.

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
#50920 09-08-2004 12:04 PM
Joined: Aug 2004
Posts: 217
Nicki Offline OP
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God love you all! I did much better today! It was a busy day, and driving 1 1/2 hours in driving rain was no fun - - I was glad it was only off-and-on rain for the drive home.
Tom had a hearing test to start the afternoon, then lab work, and then radiation. The doctor informed us that they found another tumor on the left side - - set me back, but, as he says, they'll get it as well. He and the chemo doctor are pow-wowing on whether to do the third round of chemo next week....
Very strangely, if I understood correctly, I felt the doctor was saying if the DON'T do the chemo concurrently with the radiation, Tom won't need the PEG. I'm standing firm, however, that he has one. I know that his weight, as much as any pain he'll endure, will keep me in a high state of anxiety. He was up to 144 today - that up 6 pounds since Saturday smile

HAS ANYONE USED ANY OF THE LINDI SKIN PRODUCTS?


Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
#50921 09-08-2004 12:13 PM
Joined: Aug 2004
Posts: 217
Nicki Offline OP
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OOPS. I hit the wrong key ...
Anyway, I have just gotten samples of LINDI SKIN products. On is called a "skin cooler." The literature says, "Esp. beneficial to ultra sensitive or compromised skin resulting from ratiation or chemotherapy treatments...For radiation sites, skin coolers are extremely beneficial in alleviating burns by soothing and hydrating the affected site. Cools on contact."
I will definately let you all know how they work in this household! smile

Danny - actually, Tom's diagnostic biopsy was performed exactly one year from your dx date....(and at I consider YOU one of the "older posters! smile smile )

Did you ever get the photo I sent to you? I'm so sorry I won't be able to meet everyone in Vegas. How many are expected?


Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
#50922 09-08-2004 12:22 PM
Joined: Aug 2004
Posts: 217
Nicki Offline OP
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Rosie, thanks for addressing the Xeloda issue. We have an information sheet on the side effects, which is why Tom decided NOT to take the last 3 doses. I finally caught up with the chemo nurse, and she agreed that he was right in discontinuing. We'll review everything next week before (IF) they do the third round.

I am really in awe of you and other surviving caregivers who continue to post on this site in order to help others. You are real-life heros.

Nicki


Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
#50923 09-08-2004 01:14 PM
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Posts: 207
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Nicki and Tom -- 2 down, 33 to go!!

YOu guys sound a lot like us -- we were 1:30 from our treatment center so we had to do a lot of driving initially. I can't remember if I've mentioned this before but check with your local chapters of the American Cancer Society. They provided FREE lodging for Pam and I during both rounds of my radiation treatment. All told, I used about 10 weeks worth of hotel rooms at no cost to me (except for renting the occasional fridge and meals, etc.) It might be easier as the radiation gets tougher not to drive so much. Especially on chemo weeks, all i wanted to do was go back to the hotel and be still. The driving would have killed me then...

As for my mask experience, the very first day they had me in there doing films, I felt very claustrophobic and even yelled "help!" at one point (which got muffled because of the bite block on my tongue). It got easier and easier over time, and the second time I had radiation it was pretty much no problem (except for fears that I was moving/sliding around in subtle ways and that the radiation was missing the intended targets).

As others said, you do what you've got to do... I think that's the most amazing part about the human psyche. I'm pretty much a fraidy-cat when it comes to pain but I've amazed even myself by what I've endured. On the day they did the very first biopsy I was scared SICK about the fact they were going to put me out for 10 minutes to do a little snipping. Now, it's like "Boy, would I dream to have such a little procedure done" compared to chemo, CT-guided needle biopsies, neck dissections, etc.

Keep up the good work!!! Be safe and be well...

Eric


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.
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