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Joined: Aug 2012
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Well I wasn't upset with the Doctor he has been amazing with my mom for all these years I think my issue was that I couldn't understand what my brother was passing down to me.

Today dad wrote the email explaining everything and I have more peace. The doctor feels that this tumor doesn't appear to be too fast acting which buys us time. They spoke of a chemo treatment that isn't covered by there insurance and dad said is very expensive. The Dr. did give her morphine in case pain starts up which it hasn't. They will be here Sept 3 so we can talk more a decision doesn't need to be made until the go back to the dr. on the 21st.

ChristineB I know you all aren't Doctors but you have been there dealing on the home front, suffering, searching and reaching out for each other giving each other the support that is needed. I came to the board looking for answers knowing full well I can't get them here but just wanted guidance on where to look. This board and the links that are associated with it has helped.

Thank you all for letting me reach out and take hold of the comfort you give each other and if there is anything I can do to help you please let me know. I would love to share with others more about this type of oral cancer it seems not too many are aware of it.

Gerri



My mom Lymphoma survivor 25 years.
Oral cancer since 11/2008
Chemo/Radiation
Surgery for reoccurence tumor 3/2012
8/2012 new tumor behind 3/2012 tumor
Quality of life is requested.
Passed away in her sleep just as she wished. 9/30/2012
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Gerri, if your mothers insurance wont cover her necessary treatments call the hospital's business office. Many hospitals have charity programs they dont openly tell people about. They may have your parents fill out a form and then make a determination. Some facilities base it strictly on income no matter what a persons expenses are while others take into consideration a person's other obligations. Cant hurt to ask. Ive seen patients given a break with their medical costs just by speaking up and asking for help.

We are here to help you with info and moral support. Thats the greatest thing about the OCF forum, we all understand what you are going thru. Glad you got more info and have a better understanding of your moms doctor visit.

Hang in there!


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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[quote=Gerri222]Hi I have been reading this message board since my mom came down with Oral cancer for a few years now.
You have educated me and for that I'm very grateful.

Mom is 83 now and has been our miracle surviving Lymphoma stage4 25 years ago.
Now she has Oral cancer since 11/2008. She has had chem/Radiation
and then a tumor showed up in March 2012 where they took it out. Well another tumor has appeared and they can no longer do any treatments she has had her limit. And they have opted out of having the Jaw removed and are going to let her go now.

My question: What is she going to be going through until the end? How long will it be? I don't want her in any pain and I don't feel my family is totally aware of what to expect and I needed some straight answers so I can help them prepare.
I love my mom she has dementia from all the treatments but I don't want to see her suffer what can I do? [/quote]

I can now answer my own question. Mom didn't suffer the doctors were wonderful about the medication and my dad tried so hard to care for her. I was up there last week in hopes for a hug and I got it and she knew who I was. A memory I will forever cherish. We noticed that things were going fast and they day I flew home Dad took her to the hospital then to Hospice. They treated her so wonderfully. My cousin was there and sang my mom's favorite hyms, and each of us kids called her and dad put the phone to her ear and we were able to say we love you but its time for you to go now. Today My dad was holding her hand and said "You are so beautiful you are my sweetheart forever, go see Jesus" and she passed away.

Thank you all for being such a wonderful group and keep passing the information you gain to others. The world just doesn't seem to see all of this but we do and we can do our best to pass the information on.
Thank you again for letting me share.
Gerri


My mom Lymphoma survivor 25 years.
Oral cancer since 11/2008
Chemo/Radiation
Surgery for reoccurence tumor 3/2012
8/2012 new tumor behind 3/2012 tumor
Quality of life is requested.
Passed away in her sleep just as she wished. 9/30/2012
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Posts: 2,671
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Gerri - I am so touched by your latest post about your Mom. She sounds like a truly beautiful soul and I'm so glad she had you and your Dad and the rest of your family with her as she passed into her next life. It must be so heartwarming to know how well she was treated by the doctors and Hospice. I hope that you and your family will be comforted in the days ahead by the closeness you all share and that the happy moments you were able to have with your Mom will help ease the sadness of her passing.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Hi Gerri,
Your post brought tears to my eyes. My 87 year old Mom lives with us and I just pray that at the end she will be able to pass peacefully. She does not have cancer at this point but has had lung and breast cancer 25 years ago.
Anyway, thank you so much for sharing and I'm glad she knew you at your last visit. What a gift!!
Blessings to you and your family,
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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God bless...


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Gerri, thank you for coming back with your sad news. I know how hard this has been for you. Its never easy seeing a loved one hurting, it makes us feel so helpless. Im so glad you had a good visit with your mother and she was alert. That memory will stay with you forever. Try to allow the memories of happier, healthier times help to ease your sorrows. May your mother now rest in peace. My deepest condolences to you and your family.


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
Joined: Sep 2006
Posts: 1,357
Likes: 5
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I am so very sorry for your loss Gerri. My condolences to all of your family and her friends. I hope that, in time, your happy memories of all your good times together will ease your pain.

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Gerri,

Thank you for sharing such beautiful news. I am so sorry for your loss but you were truly blessed in many ways as is evident in your memories and stories. I pray for comfort and peace for you and your entire family. May His grace be sufficient now and forever.

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
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Posts: 756
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Gerri,

I�m so sorry about the loss of your beloved mother. I�m glad she died peacefully in her sleep and that your family was able to say good-bye to her. May your mother now rest in peace and may you take comfort in knowing what a wonderful daughter you have been. My deepest condolences to you and your family.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
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