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n74tg #183231 07-09-2014 08:14 AM
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Ive been wondering how you were making out. Glad to hear you are doing so well.

A pressure cooker is a great tool to cook meats and veggies in. They not only cook very quickly but the juices are sealed in making it much easier for OC survivors to eat. Your animal crackers might taste better next week or next month, never know how that will go. until you hit your 2 year post rads mark, dont rule out any foods you dont like anymore. Your sense of taste will still improve quite alot for the next year and a half.

Watch out for rice too. That tends to stick for almost all OC patients. Ive tried it several times (guess I never learn) and almost choked to death on it.

Best wishes with your continued recovery.


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
n74tg #183381 07-15-2014 04:28 AM
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Actually I can eat peanuts, I have them every morning on my cereal. I suppose with the milk and banana and raisins and all the other stuff in the bowl that the peanuts don't have a negative effect on swallowing.

I can eat potato chips (I love potato chips and really missed them). I've bought a bag or two of peppered potato chips. First time it was a little tough on the mouth, I'm still sensitive to hot spicy. I kinda have to fight my way through the sensitivity because the stronger taste registers nicely and makes the pain worth it.

I suppose the savory taste is slowest to return. I really like this Ranchero Special dish at the local mexican restaurant that is chicken, shrimp, rice, veggies and cheese sauce on top. It's the cheese sauce that tasted the best, but is noticeably absent or reduced in quality even now seven months post treatment. That and a good cheeseburger still doesn't taste really good yet. Now, steak is beginning to again register as good, so I can't complain.

It's all coming back, it's just turtle slow in doing so.


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

n74tg #183480 07-18-2014 08:41 AM
Joined: Nov 2013
Posts: 104
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I'm a couple weeks behind you and my progress is very close. Still missing saliva. Mornings are the worst. Steak and burgers are now ok, but not loving them like I used too. Dark Meat chicken is my go to.


Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
n74tg #184238 08-13-2014 08:58 PM
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Seven Months - Recovery continues though not at anything resembling a constant rate. Some weeks are better than others.

Weight has stabilized at about 194 (38 lbs lighter than pre-cancer). To maintain that weight I eat two small meals and run about two miles a day. I'm slow but getting a little better.

Food taste is about the same as at 6 months. I can taste everything, but nothing tastes as good as it did prior to treatment. A good cheeseburger is what I desired most upon completion of treatment; I'm still waiting for that good tasting cheeseburger. French fries have saved the day, I can taste them pretty good. Sadly, ice cream has almost no taste for me, even good ice cream. But the cold and the texture are still enjoyable. Most nuts of any kind don't have much flavor. I still add peanuts to my bowl of cereal every day for the crunch, but they don't add much if any to the taste. I tried mashed potatoes for the first time since treatment the other night and they were a big disappointment. Sweet potatoes on the other hand taste fairly decent. Potato chips of all flavors taste pretty good, but tortilla chips have little flavor.

The gunky dried sinus and mucous is beginning to get better. Previously, I used the sinus irrigator 3 to 5 times a day to evacuate the crud out of my sinuses and throat. I'm down to maybe once a day now. If I drink a LOT of water every day I can pretty much keep the sinuses and throat clear without the irrigator.

All in all, things are doing pretty well. The ENT did a good oral screening at last checkup a couple of weeks ago. He was happy with all he saw.

I'm planning on doing the Houston OCF walk in October, hope to see some of you there.

Keeping my fingers crossed,

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

n74tg #184320 08-19-2014 02:09 PM
Joined: Mar 2014
Posts: 79
"OCF across the pond"
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Hi Tony , thanks for the up date I always take particular interest in your post and am eternally grateful for the tip re chewing gum. Our diagnosis are very similar and treatment times so I always look how your doing. I'm 8 months finishing treatment , my taste doesn't seem quite as good as yours yet, but experiencing similar things . Sweet things not good anymore still have massive cravings and keep testing them but feel disappointed afterwards and wonder why I keep insisting on trying! Savoury , getting there veg and salad taste the best almost as good as they use to , and milk based things , rice pud egg custard okay now. Fresh salmon taste good .Struggle with the taste of meat the texture ropy manageable in a stew or sauce. Actually had a mild chilli con carne tonight , tried 2 months ago and cried but did well tonight, not a grate test but the point being I managed with the mild spices. Still relying on water to get most meals/ snacks down but the pilocarpine is a god send for me and has improved my saliva flow and quality of life a great deal. Reading what you have for breakfast you could be sat at my table sharing mine , Cheerios or fruit and fibre with nuts and a banana! Most other fruit pretty grim tasting. My weight has been stable for 4 months now not gained any of the 2 stone 4 pound lost but a healthy 9'2 for my 5'6.5 height. No mucous at all thankfully .... That's pure misery ! Back to work full time , moved house 5 weeks ago and moving on with life. Bad days still there but no where near as often as before, not dwelling on the what ifs , enjoying life each day . Wishing everyone here love , positive thoughts and hugs for anyone who may need one.
Di x


Di 47 none smoker / drinker

T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
n74tg #184338 08-20-2014 07:01 PM
Joined: Oct 2013
Posts: 559
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Hello Di - good to hear from you. Also good to hear your post treatment symptoms are pretty close to mine. I guess misery loves company, though it looks like neither of us are anywhere near miserable.

Keep on fighting, I'll look to see if you have a post treatment thread.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

n74tg #184402 08-23-2014 02:54 AM
Joined: Mar 2014
Posts: 79
"OCF across the pond"
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Posts: 79
Morning Tony , ashamed to say I haven't posted a treatment thread I'm really not confident at posting but trying to be, I always feel that I cannot articulate as good as other people so shy away from it and not always sure where to post things, not that computer savvy!
Going to have my hair trimmed again today that's the second cut post treatment grown back really thick with a curl not sure where that's decided to come from! But it's the little normal things once very much taken for granted that make you feel good.
Hope your having a good week , keep up the fight too. Really does help to know that there are other people experiencing similar doesn't it , this site a god send.
Love Di


Di 47 none smoker / drinker

T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
n74tg #184411 08-23-2014 07:33 AM
Joined: Dec 2003
Posts: 2,606
Likes: 2
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Di, my extremely straight hair only came out in the radiated area and it all came back curly, too. I was shocked until I got used to it. The strange thing is it sometimes grows straight and sometimes curly.

Don't worry about "articulating". You're doing great! Post away, Di.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
n74tg #185394 09-22-2014 07:09 PM
Joined: Oct 2013
Posts: 559
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Eight months - Not a lot of change in 8th month post radiation.

Taste for food remains the disappointment. Many foods taste pretty bland, but I can eat most anything. Sadly, ice cream is still bland to bad, even good ice cream. I keep trying it, hoping it will come back as I really love ice cream.

Beer tastes pretty good, but can't drink too much of that as I want my weight to stay down.

Dry and gunky sinuses seem to be improving some. Now, at most I use the sinus irrigator once a day.

Something maybe a little new, I seem to feel like I have a bad taste in my mouth a lot of the time, so brush my teeth easily 4 to 5 times per day.

All in all, it's really about the same it was 30 days ago.

take care,


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

n74tg #185395 09-22-2014 08:28 PM
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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You may be battling candida/yeast from the beer.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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