CSN Login
Members Online: 11

An Update

Dale_G's picture
Dale_G
Posts: 18
Joined: Dec 2010

After joining and posting a few questions several months ago, I strangely stopped visiting the site - avoidance? I don't know. I've been in good spirits with some ups and downs. This condition and the effects of treatment are frustrating though.

My third and last chemo was January 25, and the final radiation treatment was Feb. 7. So far I've had one followup with the Med/Onc, and one with the ENT. Things are looking good, but not progressing nearly fast enough for me. It will be at least another month before I go back for a PET scan.

The few weeks before and after the last radiation treatment were challenging. I lost my voice completely for a while, it's back but a bit hoarse. I'm feeling a (very) tiny bit better daily. The dry mouth and horrible taste are the big problems now. If they would go away, I'd feel 95% back to normal. I have a constant ringing in my ears as well, but really don't notice it most of the time. I'm weak and shaky, I attribute that to intentional weight loss. The Med/Onc suggested that if I wanted to reduce my intake of formula (Iso-Source 1.5) it would be a good time. I've lost about 20 pounds since I got the ok to lose weight. I lost less than 10 pounds during treatment. They wanted me to maintain my weight through treatment. I had lost 65 pounds before all this started from improved eating habits and exercise, and when the cancer was discovered, I was in the best shape I had been in almost 10 years. I now stand at 85# lost from my all-time high of around 320!!

I'm still using the feeding tube. Have not eaten solid food since Christmas day, but I try to eat something almost every day. Most everything tastes so nasty, I can barely get it down without gagging. I can drink milk and did eat a cookie and a spoonful of ice cream yesterday. I could get them down, but there was no enjoyment, and I used to love ice cream.

I have been getting out and doing things socially. In fact later today I'm putting on the dress blues and going to a recruit class graduation and party afterward. Last weekend I participated in a fundraiser for St. Baldrick's where my head was shaved to raise funds for childhood cancer. You can see the before and after pictures here:

StBaldricks.org participant Dale Gardner

Will be going back to work in 2-3 weeks on light-duty, mainly because my sick leave is going to run out.

So for those who have waded through the long post, how long did it take for the dry-mouth to go away, and how long did it take for food to start tasting normal again, and how long before your sense of taste was back to where it was. I really miss eating and want to get back to a healthy diet ASAP. This canned crapola I'm putting in me every day can't be providing the best nutrition! I see it as a maintenance diet to keep me going for a while.

Cheers,
Dale

Fire34
Posts: 353
Joined: Feb 2010

Dale
You are barely a month out it took me about three before I got off the canned stuff and got my peg removed. How was that IsoSource 1.5 treating you, I couldn't handle even that stuff. I switched to ensure plus.
My rad onc keeps asking me about taste, it is hard to tell. Everything tastes different than before treatment, but I imagine that I have my taste back after 15 months post.
My dry mouth subsided at about 11 to 12 months out, it is still terrible at night though. Hope you are using some type of fluoride paste especially at night.
Try some soft stuff my wife started me out on scramble eggs and that type of stuff, the stuff like fish she chopped it up real good, and of course the all mighty glass of water LOL
Remember postive attitude helps a lot, the recovery takes time
Wishes & Prayers
Dave

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

Hi Dale, I remember your picture and your profession. Everything you say you have experienced sounds about right. You are going through the paces. I've heard tell that the only worse kind of cancer treatment is 'anal cancer'. Well at least we got the higher end.

Don't rush things as within a year you should be back to almost normal or your new normal. You have to realize that this is a chronic condition that isn't going to go away. You will adjust to eating new foods and a different way of life. Those nasty cans of supplement were great for just drinking during the day to achieve calories regardless of taste. Don't sell them short. You are feeling like crap because you have been intentionally poisonned to the brink of death. Your red and white blood cells are in turmoil. Also your oxegen levels are down. Again, it will all come back slowly.

Ballpark for taste, 6 months to a year. You should start to feel phisically better within 2-3 months. The frog in the voice around 6-12 months. Keep active as you are currently doing and stay engaged. Welcome to the other side.

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

Ditto to what Dave and ratface said. First couple weeks after the last rad I stayed exclusive to an Ensure and multivitamin diet, and the first food I really liked was pancakes w/lotsa butter and maple syrup. For me, I was closer to the 6-months, rather than the year. Could be the less you challenge the mouth early-on is better, as it may give the mouth more time to heal without antagonists. I returned to work a month after my last rad, but it was slow going for awhile. Good to hear you're doing okay, and of your good works with C in the community.

kcass

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Dale G My hat's off to you to volunteer to help other cancer victims (KIDS) and do the whole St. Baldridge thing when you weren't even back to your old (new) self yet. You are quite an inspiration. I am due to start rads next week and can't even imagine doing something like that so soon after treatment. I'll be happy to get off the couch. KUDOS to you.
Ingrid

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Hey Dale,

Congratulations on getting through treatment. I got almost all my taste back within the last 2 weeks and I'm 10 weeks since my last rad. Saliva is still low but definitely coming back; slowly. The biotene gel works really good at night as does a cold air humidifier right beside me. As you've probably heard though; everyone is different. I do know this; getting the taste back and looking forward to and enjoying eating again has changed and improved EVERYTHING significantly. I hope that happens for you soon. Hang in there,

Bob

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

I can understand your desire to get back to a semblance of normal. Buzz finished his radiation/chemo on January 10. He still is not eating a normal diet. He needs two cans of tube feeding formula per day. For the rest of his intake, he mostly drinks shakes and other liquids. Most food is not enjoyed just yet. So, you will get there but it will take time. Glad to hear you are getting out there and joining in social situations. No one needs to know you have a tube hidden under your clothes! Karen

staceya's picture
staceya
Posts: 704
Joined: Jan 2010

As noted,everyone is different. I was initially so discouraged..but it does get better.

TASTE Roughly 6 months, some things better than others.
TEXTURE Slippery, slidey things are easiest, jello, ham, tofu (sort of a strange
combo...but you get the idea) Lots of dressing, gravies, etc.
I still cannot eat chicken or beef for the most part after 12 months.
SALIVA This one seems the most variable by individual. Mine improved at 6 months.

MASSAGE THERAPY Improved my chewing, neck spasms and facial drooping IMMENSELY!
cannot say enough good. needs to medical massage. some insurances cover when
ordered by a doctor..
Now I am back to watching my weight, never thought it would happen!
Good luck to you
Stacey

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Dale, it sounds like you are doing well for just a little over a month out, and coming along normally. I was very ill at one month out. Pretty much at my worst. My sense of taste still isn't back to normal, and I'm out almost two years out, but it is way better than it was and after getting a cold and losing my taste and smell, I realized my taste level IS pretty acceptable now. My dry mouth is still pretty severe, because I had my left salivary glans removed with my tumor. But, at one month out, I wasn't dry, I had copius amounts of mucus.

You will have to try and keep tasting and trying healthier foods every day. I am finally able to add back in whole fruit smoothies and fruit juices to my daily diet. Veggies started earlier, with things like mashed sweet potatoes, reg potatoes, canned low salt green beans, soft cooked squash, avocado, zucchini, lentil soup and well cooked broccoli. It was extremely slow going for me, in the begining there was a lot of waste and I really had to be persistent. My mouth was so bad I went 5 months with out liquids and 9 months without food.

You will not likely have things go back to exactly the way they were before treatment. You will settle into a new normal for you. It's hard to be patient, believe me, I wasn't. It took me quite a long time to heal, but things are finally okay now.

Wishing you a good recovery.

Blessings,

Sweet

Army_Guy's picture
Army_Guy
Posts: 53
Joined: Oct 2010

I finished treatment for an s-3, M-0, T-4 squamos cell in my throat on August 12th 2010 and had my PEG removed September 28th. Went through one heck of a protocol (as did we all): Radiation twice daily for six weeks and chemo once per week. On September 10th I became fed up with ISO Source AND using a PEG. Ate scrambled eggs for breakfaast the next morning and never went back to the tube.I still supplement my nutrition with a few bottles of Ensure Plus every week. Dry mouth persists almost 7 months post treatment. I chew gum and still drink lots of water; use Biotene Mouth Wash throughout the day and Biotene spray during the night. Most tastes (except sweets and the coveted chocolate)are back, but not 100%. I have lost 83 lbs since last May and I'm now 5 lbs lighter than I was when I retired from the Army in 1988. The best part is that I'm still cancer-free. Looking at another PET scan in May or June.

Stay strong and don't be afraid to reach out.

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Dale, I believe that mine are both pretty much 90 - 95% back to prior. That being said (everyone is different), but I'm nearly 22+ months post treatment.

It did start coming back slowly, way slow actually a few months after treatment. But at a year it was probably in the 70% range with me.

Best,
John

rozaroo
Posts: 667
Joined: Apr 2010

I started tasting thing's past the five month mark! It was a slow process that I tried to rush into. I made shakes first with fruit & instant breakfast in the packet's! I was on the tube for overh 8 month's but did not use it very much for the last two. Canned fruit works the best at first. I remember trying thing's & the first bite was fine but the next bite no flavour. Now I am almost a year post treatment & can eat Prime Rib & had a half of a burger
yesterday. Pasta with alfredo sauce is fantastic, but red tomato sauce is not so great anymore. I eat alot of fish Salmon, grilled tiger shrimp etc. Love Kraft dinner lol! Cheesecake etc. Lot's of egg's etc. It will come back in it's own time. Keep drinking & swallowing etc. Try smoothies & shakes first! Just don't rush it!

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

Dale, I went to your website you posted and was overcome with emotion. You are an inspiration. And I thought of the children that have to go through what we go through and it just shouldn't be that way. D#&%m big Pharma needs to get a cure NOW.
As for the rest, I can't add much except to say it takes time and trial and error. I've read all the posts and it seems each is different. But, Sweetblood has a thread that gives many recipes for smoothies and healthy eating that surely will help you. She can help a lot with lots of info.
You inspired me this morning just when I needed it the most. Thank you. Rose

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

Dale, I went to your website you posted and was overcome with emotion. You are an inspiration. And I thought of the children that have to go through what we go through and it just shouldn't be that way. D#&%m big Pharma needs to get a cure NOW.
As for the rest, I can't add much except to say it takes time and trial and error. I've read all the posts and it seems each is different. But, Sweetblood has a thread that gives many recipes for smoothies and healthy eating that surely will help you. She can help a lot with lots of info.
You inspired me this morning just when I needed it the most. Thank you. Rose

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

Dale, I went to your website you posted and was overcome with emotion. You are an inspiration. And I thought of the children that have to go through what we go through and it just shouldn't be that way. D#&%m big Pharma needs to get a cure NOW.
As for the rest, I can't add much except to say it takes time and trial and error. I've read all the posts and it seems each is different. But, Sweetblood has a thread that gives many recipes for smoothies and healthy eating that surely will help you. She can help a lot with lots of info.
You inspired me this morning just when I needed it the most. Thank you. Rose

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

Dale, I went to your website you posted and was overcome with emotion. You are an inspiration. And I thought of the children that have to go through what we go through and it just shouldn't be that way. D#&%m big Pharma needs to get a cure NOW.
As for the rest, I can't add much except to say it takes time and trial and error. I've read all the posts and it seems each is different. But, Sweetblood has a thread that gives many recipes for smoothies and healthy eating that surely will help you. She can help a lot with lots of info.
You inspired me this morning just when I needed it the most. Thank you. Rose

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

Dale, I went to your website you posted and was overcome with emotion. You are an inspiration. And I thought of the children that have to go through what we go through and it just shouldn't be that way. D#&%m big Pharma needs to get a cure NOW.
As for the rest, I can't add much except to say it takes time and trial and error. I've read all the posts and it seems each is different. But, Sweetblood has a thread that gives many recipes for smoothies and healthy eating that surely will help you. She can help a lot with lots of info.
You inspired me this morning just when I needed it the most. Thank you. Rose

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

Dale, I went to your website you posted and was overcome with emotion. You are an inspiration. And I thought of the children that have to go through what we go through and it just shouldn't be that way. D#&%m big Pharma needs to get a cure NOW.
As for the rest, I can't add much except to say it takes time and trial and error. I've read all the posts and it seems each is different. But, Sweetblood has a thread that gives many recipes for smoothies and healthy eating that surely will help you. She can help a lot with lots of info.
You inspired me this morning just when I needed it the most. Thank you. Rose

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

Dale, I went to your website you posted and was overcome with emotion. You are an inspiration. And I thought of the children that have to go through what we go through and it just shouldn't be that way. D#&%m big Pharma needs to get a cure NOW.
As for the rest, I can't add much except to say it takes time and trial and error. I've read all the posts and it seems each is different. But, Sweetblood has a thread that gives many recipes for smoothies and healthy eating that surely will help you. She can help a lot with lots of info.
You inspired me this morning just when I needed it the most. Thank you. Rose

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

Dale, I went to your website you posted and was overcome with emotion. You are an inspiration. And I thought of the children that have to go through what we go through and it just shouldn't be that way. D#&%m big Pharma needs to get a cure NOW.
As for the rest, I can't add much except to say it takes time and trial and error. I've read all the posts and it seems each is different. But, Sweetblood has a thread that gives many recipes for smoothies and healthy eating that surely will help you. She can help a lot with lots of info.
You inspired me this morning just when I needed it the most. Thank you. Rose

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

Dale, I went to your website you posted and was overcome with emotion. You are an inspiration. And I thought of the children that have to go through what we go through and it just shouldn't be that way. D#&%m big Pharma needs to get a cure NOW.
As for the rest, I can't add much except to say it takes time and trial and error. I've read all the posts and it seems each is different. But, Sweetblood has a thread that gives many recipes for smoothies and healthy eating that surely will help you. She can help a lot with lots of info.
You inspired me this morning just when I needed it the most. Thank you. Rose

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

Dale, I went to your website you posted and was overcome with emotion. You are an inspiration. And I thought of the children that have to go through what we go through and it just shouldn't be that way. D#&%m big Pharma needs to get a cure NOW.
As for the rest, I can't add much except to say it takes time and trial and error. I've read all the posts and it seems each is different. But, Sweetblood has a thread that gives many recipes for smoothies and healthy eating that surely will help you. She can help a lot with lots of info.
You inspired me this morning just when I needed it the most. Thank you. Rose

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

As you know from reading the other responses, everyone's time is different. I'm 18 months post treatment and my rad onc was surprised when I saw him last month, he said your tongue is moist. Sounds like a strange remark but it's because this was the first time he had seen any signs of moisture in my mouth in over a year. I still carry water with me at all times and sip on it constantly, can't chew gum and don't like hard candy so I just stick with the water.

I think it was about a month post treatment before I really "ate" anything. The first thing was scrambled eggs then mashed potatoes with a lot of gravy. If you like oatmeal that also goes down quite easily and the instant comes in so many different flavors. It will mostly be trial and error for a while. If I thought of something that sounded appetizing then I would try it, if it tasted like crap then I would wait and try it again in a couple of weeks.

I swear by Ensure Plus, to me the taste wasn't too bad and it's quite nutritional with 350 calories per bottle. It can get a bit pricey if you drink a lot of it but it's worth it.

Mostly though you just have to learn patience...ha ha ha!!! I am the least patient person in the world but I survived, I kept telling myself...next week will be better. Eventually things did improve and now I don't have too many complaints. I'm still bothered by some side effects but things could be worse, they could be a lot worse!!

Stay strong and keep fighting,
Glenna

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

My recovery seems alot like youurs. massive weight loss, (70 Lbs for me) loss of voice, weakness etc. I am post treatment as of Oct. 4th 2010 and just had my PEG removed. I eat a combination of high protien mass building shakes and soft foods. I seem to live out of the "Chef Boyardee" product line alot.

I too can relate to avoiding this site at times. It seems as my condition moves forward, sometimes this site reminds me of the "dark days" and other times it really pumps me up. I think this is normal as people want to get back to the lives they had before cancer.

Hang in there and stay strong.

Best!!

Mike

tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

Hello Dale, I am about 7 months out of tx. Had my J tube and peg tube removed about 3 weeks ago. I had difficulties with the tubes and nutrition, could not eat due to stricture in my esophagus. I dropped just over 100#. I had to seek an alternative stimulant to help me eat.
I was against it. Was recommended by my psychologist and it really helped me.
I was on a feeding pump 24/7 for a while and did not tolerate the feedings very well.
There are difficult times ahead but it does get better. I cooked and ate for pleasure. Eating is more of a job than a pleasant experience these days. saliva has barely returned at this point, I am hopeful. Nothing tastes as it did.All basic spices burn the tissue in my mouth, I really miss the flavor of Tabasco! Meats and breads pretty much just stick to the back of my throat. I eat a lot of eggs, pancakes and waffles. Lucky charms are my munchie of choice! I don't know why but i can eat them with little trouble.
We adjust.We have to. Now we get to live! It can be really hard to be happy with all of this, but just think of what could have been had we not been diagnosed in time. I was stage 4a tonsillar. Good luck and keep your head up!

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

May I ask what the alternative stimulant was and if your stricture is improved and if yes, how? I too am better than I was but still have eating issues and drink more than half my calories.

Thanks.

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

Not sure you'll want to try this, and please don't hold me liable, but I was on pretty-much a pancake and ice cream diet for a couple months, and along comes the company golf tournament. Club house had little choices, so I opted for a hot dog and overloaded it with mustard and diced onions, for a reason that escapes me. And to my shock- it was great! Very little bites, with the mustard providing the lubricant, but that was the event that got me around the corner w/eating. And that was around month-five, post-treatment. Couple weeks later I discovered Roadhouse Chili, and it's a regular, now. Yes, there is a degree of discomfort with it, but the taste actually registers, and to the positive.

Realize, though, that my only throat problem was the swelling from the rads during treatment- mouth is what took the big hit.

kcass

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network