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this is going to be long but will try to shorten the best I can, my husband is an only child, his father is like a father to me, but has been a functioning alcoholic for 40 yrs....my husbands mom left his dad due to it after 19 yrs of marriage when my husband was 13....my FIL never got over it and the drinking got worse.....he was never a "mean" alcoholic but it def controlled his life..a few yrs ago he got caught drinking at work and they told him to go to rehab or he was fired...he went for 45 days to a facility and of course, he was the only "normal" one there....he claims it did more harm than good, and he did not have a problem....so he lives alone and is retired and 58...and drinks all day to be "normal"...we are very close to him as we are all he has...we have 4 kids whom he adores....last summer there was warning signs with his mouth swelling and he would tell him to go see a dr, but he said he was fine and prob a "allergic reaction"..I would say YOU COULD HAVE CANCER OR something! and he would joke "i prob do!" I cannot tell you how many times we tried to get him to drs, but you cannot help someone who will not help themselves.....so anyhow last yr around XMAS he was obviously depressed and not coming around as much...we would try and get him to come over for dinner, etc...but he always had an excuse..(looking back we now know he did not feel good)...finally after about a week of not seeing him my husband went to his house to visit him and his mouth was clearly flared and like a fat lip and he could hardly talk his mouth was so swollen....my husband demanded he go to ER now!!! but of course he said it was prob nothing and something he "ATE".....we begged all weekend and finally on MONDAY morning I took him to ER, he was clearly drunk and in IMMENSE pain, they opened his mouth and was SHOCKEd by how swollen his tongue was and the white pusy scales running down the side...also the smell was horrible..they gave him meds to relax and right away ER dr suspected cancer.....in the few weeks before XMAS he lost TONS of weight we could tell too...and this confirmed he was not eating but just drinking...he went from 150 to 135 that first day, which he is already way too thin....they admitted him into the hospital and he spent 4 days there.....he got biopsys and lots of IVS and pain meds, they of course knew he was a alchoholic and would go thru withdraw so they kept a close eye on him....he then went home to wait on the results...I went w him to see ENT for those initial results and the ENT told him not good stage 4 squamous cell carcinoma....that the tumor on his tongue was growing for many yrs and it was into his lymph nodes as well......he told us about the big surgery a few hrs away for neck dissection etc....but he said he did not think he would ever live thru the procedure since he was already to sick and weak, however we shopudl still go talk to them....so they made the appt for 2 weeks away...we then saw radiation dr and encologist a week later....and in that time FIL lost TONS of weight because he obviously could not eat due to the pain in his mouth...the encologist (who is the best in the area but very cocky and "not nice" recommended a feeding tube before treatments could start and we agreed and told them to speed it up because he was blowing away...so the PEG tube was to be inserted at outpatient and I took him to that and he almost died getting the tube in because he went into shock, he was so dehyrated and weak, they admitted him again for 2 weeks that time to try and let him recover....at this time he weighed 114 and it was horrible because he had TONS of mucus from the tumor in his mouth and was clearly still drinking even tho dr told him if he continued it would kill him quickly...he started to look much better in the hospital and clearly was not drinking...at this point 6 weeks had passed since his diagnosis and still we did not know what the plan was because he was so bad, when he was being released from the hosp, he understood NO WAY he could care for himself at home and start treatments so he willingly went to a skilled nursing home, about a month later he almost died as a new tumor swelled and cut off his air supply, ENT performed bedside TRACH, so back to hospital in ICU for 4 days....and no treatment for time being to let him rest, then he was back to nursing home... the dr was very vague but told him basically it was inoperable and too far gone and to not bother going to see about the surgery becaue he would never make it thru a 12 hr operation, FIL agreed....dr said instead aggressively treat for "quality of life" to shrink the tumors, so he started chemo in the hospital and did well w that....few weeks later they started adding radiation..he received 39 rads and finished that today.....and basically that is all we know...he left the nursing home 1 week ago because his insurancw would not pay anymore....tho he was happy to come home as well.....nurses come everyday and we stop everyday, but w 4 small kids and one baby it is hard.......the tumor in his mouth it seems has never shrunk, his lymph nodes appear better but dr does not tell us anything!!! just that he is looking better and I am afraid giving FIL false hope...I do not think FIL understands pallative care, I am just really frustrated and sad...he looks HORRIBLE and now his bottom part of face is swollen and bright red (they say from the rads?) and I just do not know what to say to him or my husband....we stop everyday to check on him but I HATE seeing him like this....esp since he still asks for a little beer...I stress to him how that would kill him quicker.....I jus tthink these rads are doing more harm then good and I know as long as dr says come back, FIL will keep doing it...when in the end is it helping?? another thing is we JUST found out that a PET scan in MARCH showed mestatis to the lung....no one told us this or my FIL nor the nursing home!!...he has a dr appt thurs and my husband and I are going, but hoping the dr talks and gives us some answers, because even tho FIL cannot talk and uses a board he will not ask questions and just does what he is told........it is just so unique because he is alcholic, lives alone, going thru this....deep down tho he really is a great person and I feel so bad for him, and the mucous is HORRIBLE!!! he says that is the worse part....what causes all the mucous? the treatment? the tumors?..I am just at a loss and would love any input


FIL DX JAN 29, 2011
stage 4 Squamous cell carcinoma
inoperable due to his overall health.
started treatment: March 2011.
feeding tube and TRACH
finished 39 radiations and weekly chemos JUNE..
June- 3 weeks in hospital for pneumonia
July-pet scan showed slightly better
OCT- hospice care, cancer all thru body


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Wow I am so sorry for all he is going thru and you all, but yes, it maybe too late from all I have read. Where in OH are you? What hospital did he go to? My bf is an alcoholic also and smokes AND is going on his 2nd bout with Oral Cancer under his chin hoping not in the bone and his surgery is this Thursday. Wow men, how can they stand the pain, I have a high tolerance but if there is something like that going on with my body, I wouldn't ignore it, but alcoholism is a disease as they say in itself. I feel so bad for you and your family. Can't really believe he went thru radiation treatments too if not reading incorrectly, that alone wears them out. Keep us informed. Please


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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thanks.... we are in Lima area (NW OHIO)....he finished the 39 radiations (5 days a week, chemo every FRI)...today....his followup w the dr is thurs...I am kinda hoping no more rad's I do not think he can handle it...but this same dr gave my aunt radiation clear up until the day she died (it was in her lungs and brain than)...so when do u say enough is enough?? yes the pain I cannot imagine...he just hacks on the mucous all day long and the sores are just horrible...and u are so right that alcoholism is a disease it all itself....it is such a sad situation, he really wants to fight I just do not know if he can handle more treatments, I am afraid the rad's would kill him quicker than the cancer....


FIL DX JAN 29, 2011
stage 4 Squamous cell carcinoma
inoperable due to his overall health.
started treatment: March 2011.
feeding tube and TRACH
finished 39 radiations and weekly chemos JUNE..
June- 3 weeks in hospital for pneumonia
July-pet scan showed slightly better
OCT- hospice care, cancer all thru body


Joined: Sep 2006
Posts: 8,311
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The thick mucous is normal and usually lasts a few weeks and then gives way to "dry mouth". Everyone can react differently to the concurrent chemo/rad but most of us had the thick crap. He needs to consume appx 3000 cals each and every day and get plenty of protein in the process. We all looked pretty bad post this Tx. I lost 30% of my total body weight and I was a fitness nut( still am) pre Tx so I had zero to loose.

Repeating what he did that most likely contributed to his cancer, i.e. the heavy drinking will most likely be his death sentance but if it has spread to his lungs and is not attended to his survival chances are already diminished.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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thanks for the reply, there is almost no way for him to get alcohol, as we have not given him any money so he cannot get the urge and go get it or have someone get it for him, all his neighbors are on board and will not give him any...he can hardly walk, he has no car....so really no one will give him alcohol, he claims he does not want any, yet he asks for one, just because....we tell him he can never drink again, and he says he understands it would kill him, yet I do not think he gets it.........he has a feeding tube that is dispensed 24 hrs a day, w his formula 3000 calories...he cannot eat so how can he get more protein? his dr is taking him off most all the vitamins cause he says he does not need them, but I thought those were the best things to keep?!


FIL DX JAN 29, 2011
stage 4 Squamous cell carcinoma
inoperable due to his overall health.
started treatment: March 2011.
feeding tube and TRACH
finished 39 radiations and weekly chemos JUNE..
June- 3 weeks in hospital for pneumonia
July-pet scan showed slightly better
OCT- hospice care, cancer all thru body


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Welcome to OCF. Im so sorry to read of this sad situation. For more protein, pick up some high protein powder at a drug store or grocery store. Even Walmart sells it. The formula he is on is complete nutrition, kinda like baby formula. Im assuming it is used with a pump.

Recovery can take a while. Have patience and in a few weeks he will begin to feel a little better. Oral cancer is a rough one to get thru, its very different than other cancers. Oral cancer has its own set of side effects. I read about your aunt going thru radiation for cancer in her lungs and brain. Im sorry for your loss.

Best wishes for continued improvements for your FIL.


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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Wow... Im not sure what to say. Im horrified at the situation. And mostly Im sorry... this is a terrible thing for you, your family and him to go through. He may not understand palliative care but I am sure he knows on a base level that the treatment will likely not save him (though Im the type of person who believes in the never say never policy... because someone with stage one cancer can die from it and someone with stage four can survive)... Perhaps he is in denial or just content though likely in pain. Because of his health history (lung mets)/alcohol abuse Im almost afraid to suggest a second opinion but my head and heart tell me to tell you to fight...If you do seek a second opinion and they tell you the same thing then I would be inclined to say stop the rads if he's still doing them. It will just make things more painful in the long run... Chemo might help shrink the tumors. But rads is brutal on the healthiest of people.
About the mucous... very common with rads I drooled like a dog... a big dog actually... in fact I could have given marmaduke a run for his money. The radiation irritates the lining of the mouth. He must be in pain... I just can't imagine. Protein powder mixed in with his feeds will help him with any healing that needs to be done. Does he have magic mouthwash? There are good creams available for his skin. Are they certain that what is in his lungs is in fact cancer... (sorry these are all things that are running through my head!)
I guess what this all comes down to is a decision has to be made. Fight it... if possible with everything you have. Or accept that he is terminal (very hard to do with loved ones) and let him enjoy his last days... and franky if that means letting him have his beer then I would. What I do believe is that in order to make a decision like that you need to be informed. It sounds like a lot of information has not been shared. I would ask the dr. what the purpose of the rads is. Is it truly beneficial. Are they working towards trying to heal him or do the palliative thing, and if it is palliative then what about quality of life? Rads can ruin that quickly.
I really just wish I could give you a hug, because I am just saddened by all this and it sounds like you are an amazing and caring daughter in law( I know how it feels to have some one in your life who is terminal - my mom died of lung cancer at 59 - I am an only child.. I know she knew deep down what her prognosis was but we never actually discussed it. However we were always aware and informed about what was going on, why things were being done etc..)I'm so sorry. But you do definitely need to be given all the information. I personally believe that in order to give consent to treatment you need to informed... if there are pieces of the puzzle missing then that's just irresponsible medicine. So talk to your doctor straight up. And mostly remember that doctors normal people like you and me... they are educated and informed but not gods.

take care...


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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cheryl thanks so much for your words..u really made me feel better, a lot has changed in the past day....FIL finished his 39 RADS yesterday!! he earned a certificate of RAD GRAD, dr told him to get lots of rest these next few weeks than PET SCAN in 4 weeks and go from there....so we were w him all day yesterday and left at 10 pm...he was very tired but ok...we told him to get rest, than this morning all hell broke lose..he texted us to come asap...and we were at in house in 3 minutes...he was very weak and lethargic , said he was dying and he cried......we rushed him to er..I dropped my husband and FIL off as I had my youngest 2 kids w me.....ran them to MIL's and rushed right back to ER>..figuring my husband was going to say he passed.....immediate XRAY showed he has pneumonia...in the meantime he was shaking freezing cold but fevering...and mucous all over....at one point he started to almost choke to death it seemed...they rushed RESPITORY in and was working on the trach and getting what they could out....poor guy was just begging for help and my husband and I sat there crying, and feeling horrible for him...he whispered he felt like he was suffocating...........after about 30 minutes, he was much better and resting, but still muttering whispers...all we could do was tell him how much we love him and we are there for him......they admitted him to the cancer floor and I just left about an hr ago to get home to my 4 kids......my husband is sleeping next to his dad tonight hoping for the best.....his cancer dr came in and said how he could not believe how quickly the infection set in, and at this point we have to pray the antibiotics help bring him relief...so now he is battling pneumonia on top of this...I feel so bad for him and wish I could be there w my husband and him but I will be back up in the AM....and praying for the best.....will keep you all informed...prayers would be wonderful....hugs and God bless to all


FIL DX JAN 29, 2011
stage 4 Squamous cell carcinoma
inoperable due to his overall health.
started treatment: March 2011.
feeding tube and TRACH
finished 39 radiations and weekly chemos JUNE..
June- 3 weeks in hospital for pneumonia
July-pet scan showed slightly better
OCT- hospice care, cancer all thru body


Joined: Dec 2010
Posts: 5,260
Likes: 3
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Sorry he's got pneumonia, he might have been sick for a bit but between the cancer, and everything, it's hard to figure out what's going on. I'm thinking that perhaps because they are considering a PET then they're still trying to cure - him. If this is the case. In wonder if the pneumonia, might have been what they saw in his lungs (the congestion - maybe?) they haven't biopsies his lung have they? I imagine not because he's been so sick. I'm sorr again that you are going through this. If he's in the hospital he should be well taken care of... I will definitely say a prayer for him...and your family. Hugs to you... Tell him there are people here pulling for him... To try and get better.. Take care!

Last edited by Cheryld; 06-28-2011 08:45 PM.

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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thanks so much...he also has COPD, and I too am wondering if the spot in his lung was the pneumonia? I do know tonight they are waiting on more results and did a culture but i do not believe biospy? not real sure...hoping for more answers tomorrow...

yes the power of prayer!!


FIL DX JAN 29, 2011
stage 4 Squamous cell carcinoma
inoperable due to his overall health.
started treatment: March 2011.
feeding tube and TRACH
finished 39 radiations and weekly chemos JUNE..
June- 3 weeks in hospital for pneumonia
July-pet scan showed slightly better
OCT- hospice care, cancer all thru body


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