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Joined: Feb 2012
Posts: 151
terrib Offline OP
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Joined: Feb 2012
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20 Rads done, 13 to go and 3 more chemo. Eating by mouth has ended. Had a nice meal at Red Lobster on Tuesday with friends and now nothing taste good and feels terribly going down. Wednesday the weekly weigh-in showed a loss of 10 pounds in one week. Came home Wed for a quick run home and on our scales from Wed. night till Sat morning showed another 6 pounds. Only had 5 cans yesterday and nothing after 5 pm so I am pushing today for 7 cans as recommended by dietitian. Jeff is also letting me juice and blend so just did carrot, kiwa, spinach and banana and protein powder. It goes thru the tube fine. This week has been bad for coughing and spitting up whatever. It has hit at night for 2-3 hours nonstop before it subsides, kept us up till 1 or 2. Last night on the was home it started and was worse than before. I was afraid I'd have to stop at ER but finally it slowed down. Is there anything to do to make food taste better. He tried a blackberry and send it taste like burned hair. His mouth tastes like a bucket of rusty nails. On the bright side it is good to be home for the week-end!!! Our dog was so happy to see us. He has been alone alot. Our 13 year old son went to WI Dells for 4 days with his sister which was really good since this is his spring break. Our son from FL flew in yesterday for almost 3 weeks to watch his brother which is such a relief!!! The weather is wonderful for northern MN!! It is suppose to be 76 today, hopefully the sun comes out soon. 70 tomorrow. Our average high for now should be 44 with still lots of snow on the ground. I think we'll get the insurance back on the Mustang convertible for our trip back Monday. The gas mileage would be so much better and we love riding with the top down. I say we will have a convertible till we are in our 80's. It was our mid-life crisis car. Have a great week-end everyone. I appreciate this forum, no Caring Bridge or Facebook postings, (husband's choice) so this has been my outlet.


Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.
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Terri, you are past the half way point now. This is where the going gets tough but the tough gotta get going!!!! Every single day push yourself to consume 7 cans of formula and a minimum of 48 oz of water, no matter what! How many calories are in one can? Your body needs at least 2500 calories per day. If you have been getting that much and still are losing that kind of weight then it is not enough. Try the Carnation very high calorie ordering it thru the green box for OCF's Amazon link. If you order today you will have it by the end of the week. You MUST turn this around today! I am not trying to scare you but when the weight starts falling off you must take immediate action and stop it as it is a sign of your body fighting too hard and you not giving it the fuel it needs to do the fighting. I know, Ive been thru this and speak from experience. I spent many a night laying in a hospital bed for exactly this reason. I know how difficult it is but honestly things will improve and you wont feel so bad if you get enough calories and water every single day.

PLEASE, push yourself! I do not want to see you in the situation I put myself into. I honestly felt so horrible that I thought I was dying. I couldnt believe it was only malnutrition and dehydration making my body ache from head to toe. Things unfortunately will get more difficult as the days go by so please get a handle on your intake now so you can begin to feel a little better. If necessary, a nasal feeding tube can be placed if you cant take in enough by mouth. This requires no surgery and can be done very easily.

For coughing try musinex or robutissen. I still need cold meds for my sinus damage. I take childrens liquid benedryl.

I wish I could be there to help you in person. I know how rough this is but in a few more weeks it will be over and you will be recovering. Best wishes with every single day!!!


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: 151
terrib Offline OP
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Posts: 151
Oops, I need to change my signature and clarify. My husband of 33 years is going thru treatment. I feel privileged to be his caretaker even though it is an overwhelming job at times. He is 57 years old.


Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Im sorry I got confused.


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: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Your husbands sense of taste will come and go with something tasting good one day and awful the next. Most of us have lost our sense of taste for a few weeks. For me, everything tasted burnt, almost like what I would imagine the ashes of a charcoal fire would be like. Even water tasted bad. Make sure your husband knows this is all only a temporary thing. He is 2/3 finished so he is almost done. Unfortunately it does get progressively harder. You can print out posts to show him if he doesnt want to come onto the forum. Several members have 'accidently' left them laying around where the patient could find them.

Hang in there and dont forget to take time for you too.


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: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
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Try Purchasing a waterpik.. Luke warm water-with a tiny bit of mouthwash non alcoholic- will help with the goo and make him feel fresher... There's a tongue scraper in the kit - use it on the lowest setting and it just shoots Water around and cleans up the mess.

Good luck

Last edited by Cheryld; 03-17-2012 10:12 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
Joined: Jul 2011
Posts: 131
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Joined: Jul 2011
Posts: 131
Dear friend,

I am also a survivor of laryngeal cancer of the vocal cords. Fortunately so far we have been able to save mine and today my voice is stronger than it has been in over a year or more. Expect the taste issues to continue. Mine started to clear up in about a month post treatment. Not much to be done about it unfortunately. I did discover that different types of tastes were affected differently. I had a good sense of taste for sweet, not so much salt, none at all for bitter and sour. I did find that I could taste hot chicken soup pretty well throughout everything for some reason so that is what I ate most of the time. (cant stand to even look at it now tho.. lol)

It is absolutely critical that you remain well hydrated. This can be tough, but for me this was the primary culprit for feeling so bad. I slept a lot first of all which limited the time I could intake, and then stack the taste issues, and swallowing issues on top of that and it was pretty hard to keep up. In retrospect, I could have used someone to keep track of that for me and make sure I stayed hydrated.

The coughing was pretty bad as well. Make sure your ent knows about and make sure you are taking your anti-inflammatory meds. This was critical for me and a few times I needed boosts for that as the swelling/coughing combo would be pretty devastating. Also ask about bronchial dilators.


Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]



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