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#159797 01-06-2013 06:29 PM
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SUEZ Offline OP
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Well Ron has hung in there for the holidays. Now I think it's getting damn close that the cancer is going to win. I knew that damn oncoligist didn't know a thing about Oral Cancer stating that his lungs will take him before the tumor growing in his jaw/mouth. He doesn't know a thing about Oral Cancer. He is breathing just fine...but the damn tumor IS growing fast in his neck/jaw. He told me today he probably won't be able to eat pretty soon, his pain is unbearable, his whole face area is in pain and I can see he isn't ready to quit but now it's probably too late. Maybe radiation...he has a hole under his chin that keeps getting bigger and bigger, I hate to say it I wish his lungs would have taken him because it's not pretty with what the tumor is doing to his face...THIS is what ORAL CANCER does! THIS is why it's so horrendous of a cancer...I'm sorry but I am angry but I must continue to work and live as my world crumbles down around me...I will hit bottom when the time comes I will need medication but I will continue to live but I hate knowing what is going to happen in my life in this new year...2013...13 is an unlucky number...and the 16th of this month will be our 15th year together thru all the cancer he has gone thru since 2007...God Help him and me. frown


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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So very sorry to hear. I hear and feel your pain.
Have you been in contact with the Hospice people to not only help you and Ron through this , but also to help with the pain issues.
Are the Drs able to give any more radiation to assist with the pain and try and slow down the tumour growth? I'm clutching at straws here, you have probably been through all this.
I honestly don't know how we as caregivers get through this. It is horrendous. Use all the medications you need to help you. It is about just getting through.
Thinking of both you and Ron,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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Sue, I have been thinking of you and wondering how Ron was doing. Im so sorry to read what you are going thru with him. Such a darn shame!!! Anxiety meds arent anything to be ashamed of, many caregivers use that tool to help get thru the rough times. Alot of those meds take weeks to kick in so you may want to ask about them now. Im sure it would help you with coping. Wishing an easy time with everything for both you and Ron.


((((HUGS)))) my friend!!!


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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Oh Sue - I'm so sorry for the rough road you and Ron been on. . . Please do take care of yourself - take whatever meds you need. I feel your anger and frustration and I am angry too! I hate what cancer does to everyone it touches! I hope that you have someone close by to help or to just give you a hug. Hoping for some easier days ahead.


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, Sue
I am so sorry to hear your news. Do you have any support via hospice or family to help both of you? It must be terrible to see the disease every time you look at him. You have been through so much with him, and are such a good and giving person: he is very lucky to have you.
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Love you lady


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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SUEZ Offline OP
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I have to call doc today and don't know if Ron wants to even attempt radiation again. With him being on medicaid/medicare and the meds he needs it can't be just called in to the pharmacy so when he's out it's always seems it's during the weekends, and no docs in I really need to get the docs to figure something out with keeping his pain down, he is still sleeping now which is good but now I worry that something will happen here and I won't know what to do...I have to ask about hospice and with me working we decided that he may just go to the nursing home which I know sucks but I am not home all day for him nor does my job allow me to be unfortunately...


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
Joined: Jan 2009
Posts: 476
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Hi Sue. I also have been thinking about you and Ron and wondering how you both were. I'm really sad and sorry for all you are going through and have been through. You need to contact Hospice. They will help you whether you decide to keep Ron at home or place him somewhere. I know you feel guilty with the thought of having to have him placed somewhere but you would also feel terrible if something catastrophic happened and he was home by himself. Please take care of yourself also. There are no right or wrong answers and you have to do what you need to do.


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
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Hey - I too was thinking about you just yesterday and wondering how you were doing. I'm sorry you're going through this. Do talk to the dr, I'm not sure if rads would help or hinder at this point - as you would then add a different type of pain, and symptoms to the mix. And no your ENT likely doesn't know much about lung cancer. But hopefully they can do something for him in regards to pain, and the hole you describe.
Hugs and strength to you - and no he should not be alone while you are working maybe the hospice can send in help?


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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I am so very sorry to hear about this turn. It is a terrible thing to watch a loved one suffer from this terrible illness. I remember when my moms tumor was growing inside her mouth, right before our very eyes, it is a scary time and not easy for anyone to experience. I wish there was something I could do to help you! I know you want to be there with him as he goes through all this, and as hard as it may be to have to work and put him in someone else's care, at least you will have peace of mind that he is in good hands and not alone. Like Wanda said, there are no right or wrong answers here. You do what you need to do and don't think twice about it. We are all here to help you through those moments when you need to vent, cry, ask for advice, or even take a 5 minute mental vacation.

Thinking of you and Ron as you make your way through this next phase. Stay strong, but don't be afraid to be weak when you need to...

Much love and peace,

Amy


Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
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Posts: 280
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Honey I'm so sorry to see what you're going through. I'm glad y'all enjoyed the holidays.
In regards to hospice/nursing care... my 0.02 is to go with nursing home if its an option... the amount of support that he will need is more than anyone should have to take on alone and i found that hospice stopped for a daily visit but didn't spend any real amount of time at the house for him...
Love to you both woman... you know where I am.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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so sorry to hear what u are going through, my husband had such severe face pain with his, i thought it was caused by the nerves starting to heal, but turns out it was the cancer still growing in there, we had thought we got it all, but my husband did not want to try radiation again and put it in gods hands...we worked with a pain management dr for awhile until we got hospice involved then they took over making sure he had the least amount of pain as necessary, and taking care of getting the meds we needed in a timely manner, don't know what i would have done without them. my world crumbled as well as he passed 6 months ago a couple months before our 30 year anniversary, i was with him since 18 and have never lived with out him. i haven't crumbled but i cry a lot at night and in the morning for missing him, i am just trying to keep myself as busy as possible. friends and family have helped a lot and having my faith. i hope u have a good support system when the time comes and that when u need to cry just go with it. take care of yourself because he would want u to go on.


CG to Joel 1st tumor flr of mouth 1998, 38 rad trmts 2nd tumor back of mouth/throat, rad neck, part remvl of jaw, soft palate rmvl, no chemo or rad, has a peg tube since dec 2011.Frmr smkr 25yrs ago, drinker, worked in HVAC indus 35yrs. 3rd dx on 6/20/12, hospice6/29/12, died July 17, 2012
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I've been thinking about you and Ron also and hoping that "no news was good news". Hopefully you can get Hospice in quickly, they can administer the pain medication Ron needs as well as give you some much needed assistance. You are both in my thoughts and prayers.


Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
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