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Joined: Feb 2012
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Joined: Feb 2012
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Hey guys. Talked at length with my mom last night. We are going to look into disability.
I'm just so very sad. I don't know how else to explain it other than I feel like i'm back at the first day this all happened.
Thank you guys for your honesty and letting me know what to expect. I'm the kind of person who needs to know what is coming well ahead of time. But it's so discouraging to know that the way I feel now isn't even the worst of it.
I just wish I could check out for the next few weeks until the pain stops and I can get back some normalcy.


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
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Dont get discouraged! Its better to be able to be prepared. We are right here with you every step of the way. Check out the Financial tab, there is some important info there. Plus check on the main OCF pages there are many links for all kinds of other resources available to you.

Nutrition and hydration are the key to getting thru this easier. Every single day take in at least 2500 calories and 48 oz of water. This must be your primary focus before anything else or you will feel horrible. If you cant make it with the water, at the hospital they can give you fluids. You will walk out of there feeling like a new man after getting hydrated.

Best wishes!


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: Nov 2009
Posts: 493
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Posts: 493
I'm glad that you are checking into disability. I know that I couldn't have worked while I was having my treatments. I was fortunate in that I had a ton of sick leave accumulated (I never got sick until I got cancer.) and also hadn't used much of my vacation time for that year. Good luck, John, and hang in there!


Female, nonsmoker, 70, 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, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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Hi, John -
if you think about it, your job right now is successfully completing treatment and then recovering. Disability, your friends and family, and of course your OCF buddies will help to support you along the way. Best wishes plowing thru the bureaucracy, and keep posting!


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.
Joined: Feb 2012
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I guess I could try to think of it this way.
Mornings are the worst. I wake up and I'm in excruciating pain because my tongue is swollen from the radiation and rests on my teeth which causes me to bite and rebite my tongue so I can't even move it. Eating is no longer something I enjoy doing. It has to be planned out. I have to numb my entire mouth and hurry up and eat as much as I can before I can feel my tongue again.
I know I'm going to lose weight because the foods I can eat even with my tongue numb are so few. A lot of foods make my tongue feel like its on fire or burning. I have been drinking those boost plus shakes which I can tolerate I just wish they had more calories in them.
But once I take ibuprofen and the Tylenol with codeine it's better. I still can't talk but my tongue doesn't feel like a balloon in my mouth.

I've heard everyone talking about how the end of radiation is the worst but could you guys share your side effects and reactions with me?


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
Joined: Oct 2011
Posts: 805
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Hi John,
Kevin had a lot of what you are going through and just progressively got worse. Same stuff just worse. You will probably have tons of phlegm to be dealing with soon too. It's very thick and gaggy, but there are many remedies to help with it. If you aren't pro-active several times a day with rinses though, it will be tough. Kevin gargled with salt water (after the magic mouthwash), then an hour later he would do a half peroxide/half water rinse. That's wierd because it bubbles like crazy. I have heard MANY other things people have done, but will let others comment on those. They also have suction machines you can use at home.
Once the phlegm gets better the dry mouth sets in. You will want to have a beverage handy at all times. Especially next to the bed at night.
Kevin also got quite severe radiation burns on the outside of his neck. It was very gross for a couple of weeks. If this happens get an antibiotic cream called Silvadene (sp). It worked wonders.
Do you have any disability through your work? I would look into the FML too. How is your boss being now? Hope she's not being a jerk still.
Keep eating and drinking. Try scrambled eggs. Kevin ate those every morning because they slid down easily. Pasta with lots of butter worked very well too and will give you some fat. He drank tons of Ensure and tons of water. Hydrate John...hydrate, hydrate, hydrate!!
I know you may not realize this, but it seems you are doing great. You are still eating/ drinking on your own and really with minimal pain meds. You may have to get out the big guns soon. Kevin took Lortab. It is a liquid and worked almost immediately for pain. He would take that and the magic mouthwash and chug down some nutrition several times a day. He tried stronger things like the Fentynal patch, but they made him really angry. Never used a feeding tube. Well, I won't say never...he tried it a few times with some of the formula, but HATED it and refused to use it!! He did put the Diflucan in the tube though because it tasted so nasty. He took this along with radiation to prevent thrush. He also did a stool softener liquid in the feeding tube for the same reason. (taste)
Hang tough John. You will turn a corner for the worse yes, but then you'll know in a month or so after treatment you'll turn a corner again. Everyone I know wishes they could have just been in a coma the last week of radiation and the next 3-4 weeks!! You're not alone in that.
When I read your last post I wanted to reassure you that everyone on here KNOWS EXACTLY how you are feeling and have been there. Honest. For me I was watching Kevin, but I felt it right along with him as I sat helplessly by.
Hang in there...you can do it and we are here for support!
Blessings,
Kathy

Last edited by KP5; 05-04-2012 06:39 AM.

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
Joined: Feb 2012
Posts: 117
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Posts: 117
Thanks Kathy. If it weren't for the fact my tongue gets so swelled that I bite on it causing these awful cut on my tongue I'd be ok. The mornings are simply the worst but I think I've figured that our too. I got up early. Woke my mouth up and slowly got it to work again and then took the magic mouth wash, drank a boost so I could take my pills then went back to sleep and woke up when everyone else did after the pain pills have time to work.

One question I haven't been able to find the answer to is how long after radiation treatments stopped did you start get better?


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
Joined: Jun 2007
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Likes: 6
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Most of us would begin to feel better about 2 or 3 weeks after radiation ends. I returned to work part time 8 weeks post rads. For many of us it was 2 steps forward and one step back for the first 6 weeks afterwards. The better your nutrition, the easier it will be for you to pull yourself out of the tunnel. Many of us would get the Carnation Very High Calorie as it has 560 calories per can. Thats probably almost twice what a Boost has.

If you want to order the Carnation VHC, it can be bought on Amazon. Go to the main forum pages. There is a green box that has OCF's Amazon link in it. Click on that link for any of your Amazon purchases. This gives OCF a 6% kickback. Any Amazon purchase over $25 the shipping is free. I think the Carnation VHC case is about $46.

You can also drink chocolate milk which is high in calories too. It will help to soothe your mouth. I also drank alot of Yoo-Hoo while undergoing treatments.


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: Feb 2012
Posts: 117
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: Feb 2012
Posts: 117
Well I know my normal diet never reached anywhere near 2000 calories. I'm quite thin.

And other food suggestions? Can u survive on the boost alone?




Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
Joined: Oct 2011
Posts: 805
KP5 Offline
"Above & Beyond" Member (500+ posts)
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Joined: Oct 2011
Posts: 805
John,
If you are thin now, you really need to take Christine's advice. Kevin lost 56 pounds and 35 or so were from the last week of tx and beyond. He still has trouble maintaining and he eats anything he wants. Really, go for the highest calorie you can find, especially now while you can still drink.
It takes about 4-6 weeks after tx to really feel you have turned that corner and are gonna make it!
Calories John, calories!!
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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