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#100425 07-30-2009 05:08 AM
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Well I guess my somewhat "easy" ride is about to come to an abrupt stop! I woke up this morning very nausious from all the built up thick mucous and when I began brushing my teeth I started to gag and once that starts there is no stopping it! I began to dry heave BAD and coughed up some blood! I do not know if this is normal but I will speak with my RO today at treatment! I also have a small lump on the right side of my neck by my corrated that is tender to touch. My RO doesnt seem to think much of it saying it is just irritated and swollen from the radiation but I am honestly not buying that since it feels exactly like the lump on the left side that turned out to be a 1.7cm tumor! It is getting progressively harder to eat, I have basically been dealing with a sore throat and tongue since february but it is almost becoming impossible to swallow even water! Lol maybe I should have taken the PEG! Oh well, only 12 more treatments after today and I weighed in this morning at 192 lbs so I lost 8 lbs so far! I will keep you all informed!


30 yr old M non-smoker (stuborn ass italian)
SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09
Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread)
Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo
"On the long road to recovery 1 step at a time"
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Jim, what a difference a week makes. Last week you were sailing thru thi, Im sorry to hear of your struggles. Get your lump checked out by one of your other docs. Only losing 8 pounds is very good. Its never too late to get the PEG tube, it can be the most important accessory you will ever have.

Best of luck with your last few 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
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Jim,
My sis has only 11 treatments left after today and she will be getting the PEG tube on Friday. After getting a few transfusions of fluids, and the mouth/throat pain increasing, its the best thing for her. My understanding is that it is invaluable in the days and weeks after treatment as well. Camille was against getting the tube until eating and drinking became such a struggle. Its less stress on her with the tube. I hope you are able to get some relief soon. Stay hydrated!!


Sister, age 24, dx SCC 3/5/09, Stage IV T3N2M0, HPV-, 6x induction chemo (Cetuximab (Erbitux), Carboplastin, Taxol), 1/4 tongue removed and left modified radical neck dissection 5/14/09, started IMRT 7/7/09, 30tx, finished 8/14/09
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Jim,

Speaking as one that didn't have a PEG, please stay on top of your daily fluids and daily calories. Shoot for a MINIMUM of 48 ozs of water and 3000 calories of VHC (only 6 cans). Alternate water and food every 2 hours that you are awake. Do the math and determine how many 8 oz cans you need to swallow every 2 hours you are awake beginning with the minute you wake up and the last minute before you go to sleep. DO NOT think you can fall behind in either dept today and make it up tomorrow because tomorrow will be worse than today.

Re the nausea which was my worse enemy, around this time I was only drinking room temp liquids and I would stand over the sink and drink a can non stop and then hold my mouth shut with my fingers and close my eyes until the urge went away.

Don't be afraid/ashamed/pissed off whatever to consider either a PEG or the nasal tube. The nasal tube is far easier to get put in as there is no surgery but it is kinda of a nuisance and only meant for short term uses. Either are better than adding more stress to your body by depriving it of much needed fluids and fuel when it is under extreme attack.

Do not be afraid to continue to try different meds until you find some that work.

Remember, I'm almost 100 years older than you so if I can do it I'm sure you can to.


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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Spoke with my RO this morning saying that the blood was from my throat being so raw and me dry heaving so hard. He offered me the day off tomorrow but I think I will pass! I will get 2 off and do not want to be there 1 more day than I have too! He kinda yelled at me because I am only taking the percocet 1 maybe twice a day! I am currently as I am writing this slugging down a bowl of oatmeal and drinking a CIB VHC! Going to drink a ton of water the next 3 days no matter how bad it hurts! Oh and David I think I will lay off the golf and tennis the next 2 weeks...lol!


30 yr old M non-smoker (stuborn ass italian)
SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09
Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread)
Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo
"On the long road to recovery 1 step at a time"
Joined: Sep 2006
Posts: 8,311
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everyone listens to me eventually....lol

but just don't be surprised if your 2 week layoff turns into 2 months.


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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Jim,
Please get the PEG tube. I had my surgery 3/25/09 with 2/3 of tongue removed, radical right neck resection. Each day following the surgery it seemed to get more and more difficult to swallow. It got so that I was using a medicine dropper and putting fluid down my throat. I just could not get any food down at all. After 20 days, I felt like I was drifting away. My skin was starting to wrinkle and I knew I was getting dehydrated. I went to the surgeon's office and when he saw me he immediately put me on a IV right in his office to get some fluids into me and ordered a PEG tube be put in the next day. It was a lifesaver. I was using 6-8 cans a day plus water. I had all medications put in liquid form so I wouldn't have to swallow anything. I had the tube out 1 month ago. I was trying to please everyone by being tough and it almost killed me. It's called humbling ourselves. (NOT EASY). My thoughts and prayers are with you! Good luck.

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I didn't have a PEG tube either and lived on Ensure Plus for about 4 weeks. I don't think VHC existed back then. Unlike David, I would keep a can by my side and sip at it all day. I could not bolt down a can all at once. I did not have nausea, but I did gag on the mucous. A suction machine may help with the mucous and try the selzer that someone says works. I rinsed a lot with baking soda. I have also had a GI tube after surgery. They are not pretty, but if it is only for a few weeks, it would be my choice. Hope you are feeling better.

Take acre,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Speaking of laying off the golf and tennis, my husband just started playing golf again (last tx was 5/8). Anyway, he has lost about 80 lbs (even with the peg tube, removed on 6/26) so his golf swing has changed dramatically! (and not for the better.. )

He says that his stomach is not in the way anymore smile


Spouse
Husband age 55
SCC BOT and 3 nodes HPV 16+ Diagnosed 2/13/09 Stage 4 T2N3M0
Neck Dissection 2/13/09, 6 chemo cysplatin/taxol, 35 rad TX completed 5/8/09, PEG removed 6/26/09, PET Scan 8/3, 2/3 Clear!
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lol David you are my driving force! Everytime I tell you something you add a month or 2 onto it...lol! I am pretty sure unless I wake up in the hospital with a PEG tube installed I will not be getting it...not trying to be tough I just dont want the damn thing! I have ate 2 bowls of oatmeal with a scoop of protein powder, 3 cans of VHC and 5 bottles of water already today. I also took a nap! I feel sooo much better than I did this morning! I think the 4 straight days of playing tennis in the florida sun probably wore me out and caught up to me! Maybe I will wait till the sun goes down and play....lmao thats for you David! The only problem with a nap is my throat dries out so bad it takes an hour of light drinking to get it feeling tolerable again! 80 lbs with the PEG tube.....jeez! I gained 20 for this treatment so if I drop that 20 then it will ok, I can also afford to lose a couple more LBS! My ideal weight is right around 175, I am 192 now!


30 yr old M non-smoker (stuborn ass italian)
SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09
Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread)
Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo
"On the long road to recovery 1 step at a time"
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