Cardboard taste ---soo early on- any advise

wendyleigh27

Ok I have been reading the posts but of course didnt think it would happen to me -

14 treatments 20 more to go- Yikes ==Yes taste buds gone ...harder to eat, anything else then salt water/baking soda and magic mouthwash to make things taste better???? Boy oh boy is has only been a few days of this and HATE it....

I really need to lose weight and not big on the PEG but think I am going in that direction?? is it really that bad ?? can you take baths - swim???

No rash or mouthsores yet so guess I need to be thankful for some things...

Any advise - my sunny personality that I bring to the radiation waiting room is fading...

God bless everyone!!!

tnsilcncer

PEG tube
Well, first of all, try not to let your sunny disposition go. They know for sure that a positive attitude while going through this helps fight it as much as the treatment. Try to remember that this WILL PASS!!! You have to resign yourself to just go with the flow. This is just for now, and really, compared with your whole life, this is just for a short time I had 33 radiations, 2 chemos and I've been done with treatment since February 8th. I still have blisters on my throat (which is unusual) but they are getting better every day, the range of what I can eat is getting broader and I can taste more and more. I never realized how important eating was in my life. Not just for nourishment, but I associate food with every emotion: if we're gonna celebrate, let's go to dinner. If I had a rough day, I'm gonna get some cookies and watch a good movie. When you can't do that anymore, it's tough. I found that I just took what I could by mouth: water, broth, herbal teas and everything else I just smelled (my poor kids and co-workers, I'm pretty sure they thought I was crazy because I'd go around smelling everyone's food all the time) and dreamed of the day that I would be able to eat ham and scalloped potatoes again. There's lots of people on here who make it through without a PEG just fine, but they had me get one before I even started treatment, I didn't have a lot of weight to lose. It's a minor, outpatient procedure most of the time. I had to have mine done in an operating room and be put fully under, I have lupus and had a spleenectomy and exploratory surgery when I was 16 so they weren't sure about being able to get through the scar tissue. My amazing surgeon did it though! It's a little uncomfortable for the first week or so, your muscles spasm a little and of course there's an incision but other than that, nothing too bad. I wasn't able to get mine wet for 6 weeks after they put it in, but again, I think they were on the cautious side because of my history and didn't want infection. There's people on here that got theirs wet 3 days after they got it. I'm not allowed to submerge mine, but I've been taking normal showers since about 5 weeks after. I'll tell you, it was worth getting. I have only lost 25 pounds through treatment and was able to keep myself hydrated (I only went in for IV fluids once). So I'm a huge PEG tube advocate, but again it's kind of a personal choice. Just remember, you can't heal properly without proper nutrition and you can't fight the cancer without being hydrated and getting your vitamins. So if you're getting to the point where you can't eat, I would talk to my doc about it asap. Other than that.....hang in there. You can do this. Soon it will be over and you will be able to start to eat and taste again......and it's the best thing ever when you can!!!

I'll be praying for you!

Hugs!

Karen

MarineE5

Cardboard and Aluminum
Wendy,

Yes, the food taste like cardboard and the liquids taste like aluminum. This will last the whole time you are doing treatments and a few weeks afterwards. Your taste buds should start to wake up after about 4-6 weeks after your last treatment.

I had no choice on the PEG Tube and had to have it as I had part of my tongue removed. It was my source for everything. I no longer have the PEG and I am able to eat certain foods.

I used the Baking Soda and Salt solution almost every 20-30 minutes to take the edge off of any discomfort I had. Around week 5, I started using the pain Med's my Doctor ordered for me. They got me thru the last weeks of treatment and I weaned myself off of them. Still used the Baking soda and Salt solution often to help heal the sores.

I forget where I read it, but someone had lolipops that had pain med's in them and they helped the patient allot with the discomfort. I'll search for that post and try to find the name of the lolipops.

My Best to You and Everyone Here

Hondo

MarineE5 said:

Cardboard and Aluminum
Wendy,

Yes, the food taste like cardboard and the liquids taste like aluminum. This will last the whole time you are doing treatments and a few weeks afterwards. Your taste buds should start to wake up after about 4-6 weeks after your last treatment.

I had no choice on the PEG Tube and had to have it as I had part of my tongue removed. It was my source for everything. I no longer have the PEG and I am able to eat certain foods.

I used the Baking Soda and Salt solution almost every 20-30 minutes to take the edge off of any discomfort I had. Around week 5, I started using the pain Med's my Doctor ordered for me. They got me thru the last weeks of treatment and I weaned myself off of them. Still used the Baking soda and Salt solution often to help heal the sores.

I forget where I read it, but someone had lolipops that had pain med's in them and they helped the patient allot with the discomfort. I'll search for that post and try to find the name of the lolipops.

My Best to You and Everyone Here

Hi Wendy

I believe cardboard would taste good compared to what you are tasting right now, but don’t give up, it get better as soon as your treatment stop’s and your body starts to heal. I did not use a PEG so I am no help on that, I did it the hard way and suggest no one try it, use the PEG.

Take care and keep posting on how you are doing, glad to have you as part of the family, just wish you did not have this stuff to go through.

All the best
Hondo

MarineE5

Lollipops
Wendy,

The name of the lollipop is- < Actiq pops > . A Caregiver on another site mentioned these many times as she stated that they helped her husband allot. The generic name is ---(oral transmucosal fentanyl citrate)

My Best to You and Everyone Here

Daddisgrl

Getting through this is a
Getting through this is a learning experience. You can complain to the doctors & some just don't listen. A huge problem was the mucus; but we were never told what he could take until around the end of treatment; they suggested Mucinex; which helped a lot.

There is also artificial saliva they can give; I don't know why they don't. Maybe Marine knows the name; you mix it with water & it's like a gargle. My hub did not have that; they gave him Evoxac towards the end; then when insurance maxed out; they gave Salagen. I don't know why they make patients suffer with the dry mouth when there are medications they can prescribe.

The Actiq pops were a God send. I learned about it from Brett Hudson (Kate Hudson's uncle- Goldie Hawn's ex-brother in law) He has a really good blog about his journey; which I was following before my hub was diagnosed. I started asking for the Actiq pops when he had his main surgery- no one would give them. Of course liquid perc or tablets- then during radiation Fentinyl patches were added that made him sick after 4 hours max. I kept begging for the pops because of what Brett said; how that was the only thing that seemed to coat his mouth/throat to get rid of the pain- nothing else really touched it & with something like the patch- why wear it if you do not need to? So the rad oncologist finally prescribed them when there was 2 weeks left & I could scream that they make people suffer when there is a pain medication that will work better for this type of treatment.

We had to special order them from CVS; took a few days to get in- we had 3 boxes I think. My hub would put it in his mouth for a few minutes; then take it out. He said he really didn't need to eat the whole thing. 1 pop lasted him almost the whole day; he would have a 2nd at bedtime.

If your tongue is sticking to the roof of your mouth; put a dab of Vaseline where it sticks. One of the members at another forum asked the manufacturer & yes; it's safe to use. You just need a small dab. Then there are biotene products- I usually buy them from Walgreens because they are the only place that has buy 1 get 1 1/2 off. They have a mouth spray; dots you put in your mouth; toothpaste & mouthwash.

Are you using trays with fluoride? If so; we found that the fruit flavored does not burn or dry out the mouth like the mint does.

We found the magic mouthwash made his mouth worst; he used the baking soda a lot more. The Lidocaine was very drying & left a bad taste in his mouth.

Keep an eye on the mouth sores when they start. They let my hub get too far before treating it. He has Lupus; & ended up being admitted with morphine for 4 days which is another story because morphine makes people sick; the last thing you want is to vomit.

Make sure you stay hydrated. 6 to 8 bottles of water per day.
The feeding tube can be a good thing but it can be bad. My hub was not going to use it at all but had such a hard time eating that it was good he had the peg. I wonder if they gave him the actiq pops in the beginning if he wouldn't have used the peg.

He was able to sit in jacuzzi & shower. We didn't ask about swimming.

Have they given you ativan or something for nerves? If not; ask for something.

Good luck.

Daddisgrl

MarineE5 said:

Lollipops
Wendy,

The name of the lollipop is- < Actiq pops > . A Caregiver on another site mentioned these many times as she stated that they helped her husband allot. The generic name is ---(oral transmucosal fentanyl citrate)

My Best to You and Everyone Here

Thanks for messaging me.

Thanks for messaging me.

buzz99

Cardboard and such
The PEG is a life saver. Sure most of us need to lose weight but not at the expense of adequate nutrition. Buzz had a PEG inserted before treatment and he lost only 10 pounds. Good nutrition will help you recover faster and heal quicker from the radiation. He still has the PEG but it will be removed after the next PET if it is clear. We were not told to keep the area dry after the initial healing period and in fact, he was able to shower with in in place. Buzz is eating 100% by mouth now and doing well. You have that to look forward to. Take Care. Karen

jeepman

Daddisgrl said:

Getting through this is a
Getting through this is a learning experience. You can complain to the doctors & some just don't listen. A huge problem was the mucus; but we were never told what he could take until around the end of treatment; they suggested Mucinex; which helped a lot.

There is also artificial saliva they can give; I don't know why they don't. Maybe Marine knows the name; you mix it with water & it's like a gargle. My hub did not have that; they gave him Evoxac towards the end; then when insurance maxed out; they gave Salagen. I don't know why they make patients suffer with the dry mouth when there are medications they can prescribe.

The Actiq pops were a God send. I learned about it from Brett Hudson (Kate Hudson's uncle- Goldie Hawn's ex-brother in law) He has a really good blog about his journey; which I was following before my hub was diagnosed. I started asking for the Actiq pops when he had his main surgery- no one would give them. Of course liquid perc or tablets- then during radiation Fentinyl patches were added that made him sick after 4 hours max. I kept begging for the pops because of what Brett said; how that was the only thing that seemed to coat his mouth/throat to get rid of the pain- nothing else really touched it & with something like the patch- why wear it if you do not need to? So the rad oncologist finally prescribed them when there was 2 weeks left & I could scream that they make people suffer when there is a pain medication that will work better for this type of treatment.

We had to special order them from CVS; took a few days to get in- we had 3 boxes I think. My hub would put it in his mouth for a few minutes; then take it out. He said he really didn't need to eat the whole thing. 1 pop lasted him almost the whole day; he would have a 2nd at bedtime.

If your tongue is sticking to the roof of your mouth; put a dab of Vaseline where it sticks. One of the members at another forum asked the manufacturer & yes; it's safe to use. You just need a small dab. Then there are biotene products- I usually buy them from Walgreens because they are the only place that has buy 1 get 1 1/2 off. They have a mouth spray; dots you put in your mouth; toothpaste & mouthwash.

Are you using trays with fluoride? If so; we found that the fruit flavored does not burn or dry out the mouth like the mint does.

We found the magic mouthwash made his mouth worst; he used the baking soda a lot more. The Lidocaine was very drying & left a bad taste in his mouth.

Keep an eye on the mouth sores when they start. They let my hub get too far before treating it. He has Lupus; & ended up being admitted with morphine for 4 days which is another story because morphine makes people sick; the last thing you want is to vomit.

Make sure you stay hydrated. 6 to 8 bottles of water per day.
The feeding tube can be a good thing but it can be bad. My hub was not going to use it at all but had such a hard time eating that it was good he had the peg. I wonder if they gave him the actiq pops in the beginning if he wouldn't have used the peg.

He was able to sit in jacuzzi & shower. We didn't ask about swimming.

Have they given you ativan or something for nerves? If not; ask for something.

Good luck.

good post daddisgrl
I would also try to get Caphasol prescribed. When it comes to billing, it has to be billed as a medical accessory. Replaces the minerals and enzymes. Two part swish and spit...worked for a buddy really well. I will let you know how it goes for me once I get there and need it, bout 3 weeks to go probably.

Prayers and thoughts to you,

Mike

martyD

I recently went thru 7 weeks
I recently went thru 7 weeks of radiation and it was no walk around the park. I have squamous cell carcinoma of the head and neck. Treatable but not curable. The treatment itself was OK. ou will get your taste buds back I am happy to say. Mine have almost all come back. Not a good way to loose weight. I lost over 20# and have gained 4 back.
Hang in there.
Bless you

Skiffin16

martyD said:

I recently went thru 7 weeks
I recently went thru 7 weeks of radiation and it was no walk around the park. I have squamous cell carcinoma of the head and neck. Treatable but not curable. The treatment itself was OK. ou will get your taste buds back I am happy to say. Mine have almost all come back. Not a good way to loose weight. I lost over 20# and have gained 4 back.
Hang in there.
Bless you

DIET
Definitely not a diet I'd recommend....

Welcome to the forum, many great people here, tons of information and shared experiences as well.

Out of curiosity and if you don't mind sharing.

Why did they say your SCC was not curable? Many of us here have had SCC in one form or the other, and very many are now in a No Evidense of Disease ~ NED catagory...

Myself included, STG III SCC Tonsils and a lypmhnode, HPV+, Dx 2JAN2009, completed Rx Jun2009. All scans have been clean and clear to dat...(hoping to stay that way).

Best,
John