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#148534 - 04/19/12 11:22 PM Re: Wondering if it's worth it [Re: Charm2017]
Jack Snodgrass Offline
Contributing Member (25+ posts)

Registered: 01/27/12
Posts: 25
Loc: United States
Is it worth it ?? For me the answer is no!
I went through 7 weeks of chemo/ rad that ended almost 5 weeks ago. I still feel like crap every day, have no saliva, am still nauseated half the damn time, eating through a tube in my stomach and have no energy. Then to top it off my fiancee who spent so much time helping and worrying over me suffered a breakdown and moved back to her home and is under the care of a professional. Every plan we made for the future is gone and I'm alone. This disease sucks pure and simple and sucks the life out of you. I'm supposed to have a post treatment PET scan in 8 weeks and it may as well be clear because this is the end of treatments for me regardless. I've already told my kids that my quality of life is worth more than the price i've paid and if I had it to do again I wouldn't. I'm absolutely sure many of you fine folks will not understand but the price for me wasn't worth it.
I'm done in.


Edited by Jack Snodgrass (04/19/12 11:38 PM)
_________________________
64 YO M Non Smoker ,light drinker Dx 11/11 SCC Stg IV BOT/L
Tx Carboplatin & Docetaxel weekly and Rad daily X 7 weeks
PEG in 2/12 out 6/12

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#148541 - 04/19/12 11:37 PM Re: Wondering if it's worth it [Re: Jack Snodgrass]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 487
Loc: NW Ohio
Jack,
Don't give up. We are all here for you. I still felt pretty crappy when I was 5 weeks out of treatment, but I am still here. I didn't have my PEG tube out until almost three months after my treatments ended, and I had the fun of trying to dress for work wearing the damn thing! It is so sad about your fiance, particulary after what the two of you have been through. This disease does suck, and it takes a toll on our caretakers, too. My husband ended up having heart problems about six months after my treatments, and I'm pretty sure that my cancer contributed to them. We are both hanging in there, though. Keep the faith!
_________________________
Female, nonsmoker, 69, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, looking at a very invasive
surgery which will involve lifestyle changes. Surgery on April 9. Still have a long journey ahead.

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#148547 - 04/20/12 02:28 AM Re: Wondering if it's worth it [Re: zengalib]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4976
Loc: Toronto canada
I agree totally you're suffering the after affects - things will improve - slowly. Give it time - smile
_________________________
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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#148549 - 04/20/12 03:18 AM Re: Wondering if it's worth it [Re: Cheryld]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Jack,

Side effects of pain medications will cause nausea and fatigue as well as depression and severe mood changes etc. There are other prescriptions common to our disease that will cause various side effects as well, I would look at the drugs you are taking. I'd also suggest getting your adrenals, TSH and testosterone levels checked out brotha.

You're in your 60's as well so you've been naturally losing about 2% testosterone production since you were 40. Coupled with the pain medications, and probably antidepressants, traumatic stress, poor diet and lack of activity I'm guessing your testosterone levels have "tanked". Why does this matter? Let me tell you!

Testosterone is utterly important to the male system for recovery, mood (low T causes depression), outlook (balanced T enhances feeling of well being) and energy levels. Quick fact, the body "feels" more pain when in a state of depression due to brain chemistry, so raising testosterone actually can help fight chronic pain (also why low dose tricyclic antidepressants are often prescribed for pain as well).

Get your hormone levels checked brotha and it can help you through, from a guy that can relate as I had a rough time through recovery due to pain medications and hormone levels.

Keep your chin up

Eric
_________________________
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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#148565 - 04/20/12 03:50 PM Re: Wondering if it's worth it [Re: EricS]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 874
Loc: Ohio
Hi, Jack
I agree - the disease and the treatment both suck. I am sorry that your finance is also having such a hard time.

Oddly enough, I think that one of the things that helped my husband the most was walking our old dog. That got him up and out of the house, with his hat to protect his neck from the sun, and let him do something normal, and make the dog happy. As Eric described above - there's all sorts of things messing with your chemistry right now. There are some things the doctors can help with, and there as some things you can help yourself with. Dogs, cats and small children are good to be around, if you can manage it, because they are non-judgemental (well, maybe that's not true of cats) and can make you smile. If you cannot have a pet yourself, many shelters have a volunteer program.

I want to wish you the best of luck with your recovery. It is terribly hard, but you still sound pretty fiesty to me. Keep fighting!
_________________________
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, 06/2014 physical exam clear; chest CT's clear of cancer. On thyroid pills. Saliva slowly returning. Life is good.

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#148572 - 04/20/12 05:38 PM Re: Wondering if it's worth it [Re: Maria]
bbagby Offline
Contributing Member (25+ posts)

Registered: 07/04/11
Posts: 25
Loc: North Carolina
Reading Jack's posting reminded me of.......me. Last summer I felt exactly the same way. Exactly. When people asked me if I'd do it again I said "absolutely not." I was totally miserable and hated my life. I said if I have to live like this I'd rather not. Well, fortunately for me, and despite my lousy attitude, I kept trying to cure myself. In September (treatment ended at the end of May) I finally started to feel better. Mainly because I was able to finally eat. The feeding tube wasn't going to work long term (that exited in the middle of September). Despite what you're told, I don't see anyone living well on Boost or IsoSource. I needed real food. I'm doing pretty well now and my sense of energy and well being is back where it was before diagnosis. But if it recurs, I think I'm done treating it. I've seen too many stories about endless treatments with life quality deteriorating a little more each time. Not for me. I'm enjoying life right now. I'm 63 and had a good run.
_________________________
Diagnosed in March 2011. Treatment ended May 28, 2011. Back of tongue cancer with one lymph node(stage 4). Feeding tube 5 - 2011, to 9 - 2011. Some saliva and taste. Eating most foods; meat, fish and dry foods not so well. Swallowing pretty normal otherwise. Doing well now. The future? Who knows.

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#148603 - 04/21/12 01:10 PM Re: Wondering if it's worth it [Re: bbagby]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4976
Loc: Toronto canada
Hi there - I think age has a lot to do with it - I've heard the same from my dad - he's blessed to be in decent health except his eyesight sucks. If he was diagnosed I think he would do the basic treatment and leave it. No one wants to submit themselves to major trauma in their 70s and 80s - I totally get that. I think were I to get to that age I would do the basics and leave it. Unless I were in super health. Not to say you shouldn't fight if you are older, as life is blessed and we all have friends and family we don't want to leave behind, but I'm saying I would definitely weigh the fallout from the treatment a lot more than I would at 40. However, dying from Oral Cancer is brutal and painful, also not something I would want to have to face in my 70-80's. It's a difficult decision... But it's also one not to be made just out of treatment, put it this way if a woman had to decide right away after giving birth if she was going to have another child, then our population would be a lot less..
smile hugs everyone... You are amazing.
_________________________
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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#148616 - 04/21/12 08:12 PM Re: Wondering if it's worth it [Re: Cheryld]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2604
Loc: TN
Jack - Please DO wait a while before you decide if it's worth it - My son had the same feeling and told me (while recovering from RadTx) that if he had known how bad Tx would affect him he would never have agreed to the Rad. And he was only 33! Meds should definitely be checked out. Some of them have really bad side effects. Before his diagnosis, Paul had recently divorced, his then girlfriend left town, he was out of a job, with no insurance and facing bankruptcy. That was 5+ years ago. Now he has a a great job, a wonderful girlfriend and they just bought a new house! He told me recently that compared to where he was 5 years ago, today his life is better than it ever was even before cancer! Believe it - when someone tells you that things DO get better! Because they really do! So stay with us, and keep moving.
_________________________
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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#148620 - 04/21/12 10:41 PM Re: Wondering if it's worth it [Re: Anne-Marie]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 487
Loc: NW Ohio
I also want to add that we saw the birth of our first grandchild, who will be celebrating his first birthday next week. Yes. Despite what we went through, it was worth it!
_________________________
Female, nonsmoker, 69, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, looking at a very invasive
surgery which will involve lifestyle changes. Surgery on April 9. Still have a long journey ahead.

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#148875 - 04/30/12 09:42 AM Re: Wondering if it's worth it [Re: morgan44]
iceman600 Offline
Member

Registered: 11/01/11
Posts: 6
Loc: New Jersey
if i could only turn back the time... in my situation, i should not undergo treatment. my life has never been the same since this tongue cancer hit me. (well actually the second time. yes second time!) well let me just expand those.

i got diagnose with tongue cancer early 2006. i got operated and undergo radiation. after that i thought ill be ok. i have a tube to my nose for about 2 moths and i recover and got back eating normally again. but after a year my cancer came back =(
i undergo operation again but this time partial of my jaw was taken out. and that is the beginning of my life in hell. =( up to this day as of today i hate what happend to me. i even think of killing myself a couple of times. now i dont leave the house anymore... i got tube sticking in my stomach to feed myself. i cant talk clearly because of the operation... i cant mingle with people... my social life is dead... =(
i just keep myself busy on the internet reading and watching movies. ive been like this for 5 years now and its not easy.
btw im only 32 years old. this cancer took my life in early years. i got sick on the peak of my age... =( now i cant work... i cant have a family... thats why im always thinking of killing myself to end my suffering.

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