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I'm so upset and feeling an overwhelming amount of emotions. I suppose he belongs in this group now too as they say he has a tumor on his esphogus which they are giving him 3 wks of IMRT and then he is off to see the MO again. This is is third bought with the lung cancer. He has had two surgeries over the last few years they removed part of the upper lode and then the lower just last year.
I don't know where to really look to find good info --so spoiled here on this site--again--THANK YOU BRIAN!!
I am hurting for Eddie, and all of his family....especially his dad, he's such a sweet person, loving grandfather and he's been a wonderful friend to me and has become kind of close to my mom through her journey.
They currently are only giving him vicodin for pain, they want to wait for the last two tx's before they medicate him further since Ed's sister Nancy is the primary CG and she can barely manage moving him around. I'm disappointed, it seems to me that there has to be more they can give him that won't dope him up so much that he won't be able to manage.
My understanding of his prognosis is that it is very poor. I'm heartbroken and honestly--mad as hell!
I went to a viewing last night where the woman was an alcoholic and died from drinking--can't recall the medical term. The priest was speaking and I could feel the anger rising, him saying we had to pay here on earth....(did you ever want to jump up and scream what you really felt inside??)
I can feel that lead box falling in around me, I'm scared and want to be strong--have to be, and want this man to beat his odds.
PLEASE keep him in your thoughts. His name is Ed, he should wear a white cowboy hat, he's one of the good guys.
Thanks for any advice, and for ALWAYS being here for me.
Love,
Donna


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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Hi Donna,

I'm so sorry to hear this, and am here for you if you want to talk or vent.

Deb


Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"

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Thanks Deb.
I'll be in touch.


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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Donna- I'm so sorry that you have had more bad news. I don't what to say other than I will be praying for Ed. It sounds as if this poor man has had his share of pain. I will also say a prayer for the rest of your family.
Sue


cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
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Donna

Im sorry to hear about Ed. Its very sad that the poor guy is having to go thru treatment three times. I will say a prayer for him.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Donna,
if his prognosis is not good then why not opt for hospice care? They can keep him at home, comfortable and pain free and treatment CAN continue. This can take a lot of the burden off of his sister, provide guidance, some nursing, bathing and respite care. It sounds like Nancy needs help badly - caregiving alone is very difficult (as I am sure that you know).

He should definitely be on something stronger than Vicodin. Waiting 2 weeks sounds barbaric to me. I was on Duragesic for months and got along quite well - I never needed to be assisted in any way.

Most people who die from drinking, die from cirrhosis (hardening) of the liver.

It's ok to be angry about this - it is a righteous anger. Maybe the priest didn't state it well but life is a terminal illness - none of us gets out alive and it also isn't fair. In fact, nothing about life is fair in spite of the myths we have been taught. Biblically, we have to survive by the "sweat on our brow", suffer pain and death so in some sense we do have to pay our entire life.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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Gary hit this one on the head. When my mom was dying of cancer, we had hospice stop a few days a week to take care of her needs. She was much more comfortable than she would have been with any of her 8 offspring attempting to do what hospice does so well. Ed is in my prayers along with our OC family.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Donna,

Sending hugs and prayers for your family and Ed's.


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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Hello Gary, Jim and Margaret.
Thanks for your prayers and advice.
Gary--
Thank you for sending advice that should have been so obvious to me. I hadn't thought of in home hospice care, and had forgotten that they can give tx's at home. I shared the info with Eddie and he is going to talk to Nancy; hopefully she will be able to see how much more comfortable her dad will be and the relief she will get.
Also, your response to my anger was very helpful--thanks. Even though I know all of this, was raised Roman Catholic, taught CCD for 7 years, went to catholic school my entire life....I'm still disappointed. Too many people whom I have loved have had to suffer so greatly. I'm sure that everyone on here can agree.
Thanks again for your guidance, it's always appreciated.
Donna


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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Donna,
I also have twelve years in the Catholic school institutional system - 4 of that in an all male Catholic college prep school. I am a non-denominational Christian now, for that very reason, and there are many ex-Catholics here at my church. This is not meant to 'dis" Catholicism - there are many out there who "get it", have a personal relationship with their Creator and live examined and fulfilled lives.

I too have heard some absolutely bogus eulogies from various Catholic priests (including my own mothers funeral) over the years but have also been remarkably surprised by some exceptionally good ones as well. Like everything else - it's all luck of the draw.

This may also be a trigger for deeper anger issues that you may need to deal with at some point in time. My wife had a total meltdown after I was done with treatment and she still has fears. Remember, also, that you are actively grieving your pre cancer life and anger is very much a component of the grieving process.

We are VERY slowly getting to to where we were post Dx and that was 5 years and a few weeks ago.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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Gary,
I think you are right about the trigger....when I sat and thought about it, I have been dealing with so much anger. My brother was dx with AIDS in 11/94. I can barely remember what our entire family was like prior to that date. I know that we enjoyed freedom from fear, that much I do recall.
I am afraid for Eddie and his family tomorrow, they meet with the MO and so much of what that appt brings, decision wise, lies so heavily on my heart. Today apparently was a very bad day for his father--all day. I can't imagine why--they still have only given him vicodin!
I don't know what to say to Eddie to make him feel better...seems so strange after all this last year has brought to my family. We had hope, from what I understand about oat cell it's fast and unforgiving.
I've given Ed all the info I could think of for him to present to the MO and his family in regards to hospice and pain mgmt. I'm not going along with them all tomorrow, the room is too small not to mention, I'm still just an outlaw (not blood). Part of me is relieved to not be going, the other half is wishing I could.

As with everything in life it just takes time to accept and adjust I guess.

Thanks.


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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