Tongue & Throat Cancer

Kent Cass said:

PEG
Hal- I'm with Landranger- if the Dr. advises, then get the PEG in beforeheand. I did, and got all my nutrition thru it for my two months of chemo (cisplatin and flourouracil) and rad. I did balk at the notion of the tube with my first Onco visit, but by my second visit was okay with it- and very, very, glad I had it installed. PEGS seem worse than they are- not that big of a deal. Got mine put-in back in January, and still have it- though I haven't used it since early-April. Nothing more than a minor nuisance to me, now, but there was a time it was a lifeline. It really was. If my next PS results are good, plan on getting it removed. If, however, I have cause to think I might need to use it, again, I will keep it. All the Drs. say I can get it removed- it is my decision that I still have it, based on my concerns of C's return, and only wanting one spot of scar tissue on my stomach wall, rather than two. Think of it as a safety net, Hal, to be certain you have everything in place in even a worst-case scenario, especially if your Dr. recommends that you get it done. We, on this forum, are proof you are gonna get thru this okay.

Believe.

Cathy- they really do call it "Magic Mouthwash." My Onco called it that, as did the Pharmacist at Walgreen's, and as did the Nurses at the hospital I was in for four days. Good stuff to help an ailing mouth.

kcass

Peg Tube
Thanks Kent, for your advice. I have a date with the gastrointerologist to meet before he puts in the tube. And It will be before or the first week of the chemo/rad. Hope I can get it in before.
Thanks again to Landranger, and Cathy. Cathy I know it's hard to get on here and tell us what's happening with Tim, and I think you and he are doing great. I do appreciate it thouhgh as I am yet to start and now know I should try to get a lot of water into me the days before I start. I wouldn't have know that before, and so again I am very grateful for the information.

Best to everyone, Hal61

Kent Cass said:

Glad to hear
Hal- it will be a good thing. Paper tape on the top and bottom of a halved and scissored 4x4, or even as small as a 2x2 gauze, with peroxide applied during each gauze change, and paper tape to hold the top of the tube.
Was told 1.5 formula is commonly used, but 4.0 is better if you can tolerate it (digestive regularity)- requires less feedings/day, and is actually cheaper.
Still have my tube (had since January 08), and another on this forum claims to have had their's for 9 years. All they are is a very necessary, and only minor, nuissance. Couple different types- my Surgeon says the balloon type might be the best, though that is not what he put in me.

If I was you- I would insist it gets installed before any treatment. They put me under when they put it in, and you don't need that to happen while your body is dealing with the early chemo and rad. My Onco told me I had to have mine before any treatment, but I was getting rads every day in the first week, while carrying two chemo pumps 24/7 (actually 24/4). Get the formula supply arranged ahead of time. I was told that Ensure and Boost can act as formula-replacements, but it is not suggested for very long.


Keep us informed, and if you have any questions- we are here to help.


Believe.

kcass

Tim?
Cathy- how is Tim doing? More than I are concerned. Please respond ASAP.

kcass

Cancer of the tongue
I went through that last year. The treatment is tough but I made it. I needed an G-tube. I still have 10 cases of Gevity you can have if you need it..........Gary

gsurge said:

Cancer of the tongue
I went through that last year. The treatment is tough but I made it. I needed an G-tube. I still have 10 cases of Gevity you can have if you need it..........Gary

Hi Gary
Welcome to CSN I am glad you are here

Hondo said:

Hi Gary
Welcome to CSN I am glad you are here

Treatment start scheduled
Hi Hondo and Everyone,

The "submit a comment" page has a problem, so I will reply to Hondo, thank you very much. I got fitted for my mask, and did my final scan using the mask. It was tight, and I'm glad I'll be sitting up a little for treatments. I'm scheduled to start the 18th and 20th of January, 2010 on chemo, then rads. I have an appointment for tomorrow with a gastro interologist to see about my peg tube. I'm going to really try and get it done before my treatments start, thanks to all the advice from the great people on this board. I'll try and post as I go, for anyone who can use the information. I'm getting three chemos--Cisplaten--and 35 rads. For what it's worth, my radiation oncologist (I think I've learned to spell it correctly since my last post) did have me go to my dentist, who sent me to a maxio facial specialist to pull a tooth and do xrays. He also gave me for an rx for a product to use nightly to beef up my enamel, which I will pick up tomorrow.

I absolutely appreciate the help on here. My doctors are fine, but my experience is they don't want to say any more than they have to--or probably are able to. People here are my best souorce of iformatioin on what to expect.

I don't know if I should mention this, but I'm using medical marijuana with my treatment. I have listened to the radio Dr., Dean Edell, for many years and he mentioned a study that showed marijuana use was related to a lower instance of throat and head cancers; this is beyond its more accepted use as an anti nausea tretment with chemo. So, I'm experimenting to see if it might do me some good in treatment, i.e., slowing the spread of already existing cancer. I'm not advising it for anybody, and I don't mean to start a debate of drug use, but for now it's part of my treatment and I'll let everybody know if, in my anecdotal opinion, it has any value.

Again, to everyone here, Kurt, Landranger, Cathi, Dazey, and all, thank you for the information. The dietician has the suppliers of the tube hardware and the food products coming to my house soon to tell me about what to do, but the differences in calories, products, etc., is just what I need to know to make the best decisions, and that and more info come from this board.

You are all very brave.

Hal61

catya88 said:

Here I am
Hi Everyone

Sorry, holidays and work kept me busy.

Tim is doing well. Last week was his first full week of radiation and he did well. He met with his radiologist last Thursday after treatment and he told Tim he was still in the honeymoon stage and that in the next couple of weeks he would hate him. The doctor had told him at the beginning, in 4 weeks, you'll hate me and when it's all over, you'll wonder why you ever did this?! Tim appreciated his honesty.

Ok, so we have started tube feedings in the morning only and that is going well, we have our routine down to a science. It also gave Tim some needed weight gain and I know that will be short lived. Even though he has lost his sense of taste, he is still eating whatever he can and doing well with that.

This week will be his third chemo session, 5 more to go. Tim's parents are here and when and if it gets bad, they'll be able to get him to his sessions. Tim is still working and maintaining a good attitude.

He is staying on top of his pain and has been able to manage that well. Uses the magic mouthwash and is drinking the papaya juice to help cut the mucus. He went to the dentist at the beginning and has everything to keep his teeth healthy and some stuff for the dry mouth.

That's it for now. I need to catch up on everyone's post and see what else I need to know and watch for.

Thanks everyone - Cathy

Good news
Good to get this update from you, Cathy, and Tim's getting used-to the tube feedings, and the pain management. Thank you.

I would suggest Tim requests a Leave of Absence from his work, if appropriate. He's living a serious business, Cathy, and priority-one is getting thru this as best he can. It will get worse, but it does not have to get any worse than he (and you) can handle- let the Drs. and Nurses know if it gets close to intolerable. I never grew to hate my Rad Dr., Cathy. The help I got via meds helped me greatly in being able to take everything in stride. That is an avenue to take- and one the body may thank Tim for, as it does not need any more stress than the side effects of chemo and rad. Tis not an easy road, by any measure, but it is one which can be navigated thru to a successful end. Believe this is true, and you will find it is: all of us are proof of this.

Please keep us informed. I had been wondering how y'all were doing, as I know others have, also.

Believe.

kcass

catya88 said:

Thanks and question
Thanks Kent

Tim has already looked into his disability at work and has the paperwork on standby. He is't working more than he can take and I assume it will may be another week or two before he'll have to take leave. His work place has been very helpful and understanding.

Is there any type of logenzer he can use to sooth his mouth sores and throat? He is using the magic mouthwash but I was just wondering.

That's all for now - Cathy

My husband is also a
My husband is also a head/neck cancer survivor coming on 2 yrs in April. He was Stage IV in the left tonsil, the lymph nodes, base of the tongue and jawbone to the 2nd molar. A piece of advise regarding the disability. My husband also had a disability policy thru his employer which we took advantage of. The one problem I did continually fight with was the insurance company and the disability company. Due to the lovely privacy concerns (which I do understand) neither one will like to speak with you. My husband got to the point where he could not speak. I would make sure before he gets to that point he has made arrangements with both the disability and the insurance company for you to be his voice during this time.

catya88 said:

Privacy
Gotta love the PRIVACY issues. Went through that when I was taking care of my father. We have visited the lawyers office and gotten a POA and a couple of other's they thought we might need. It is very frustrating, wait until you have to deal with Medicare!

Privacy
We also had taken necessary legal steps including the POA, a Living Will and the Will itself. The POA was not sufficient for either the disability or the insurance. We now have documents on file (that are only good for 1 year) that allows me to speak with both. The patient has enough to deal with; they do not need to fight and argue with insurance and disability companies.

My husband was unable to use the Boost, Ensure or the Resource 2.0 that was recommended by his onocologist - all were too rich and he would have severe heartburn and often would be ill. We tried ScandiShake which when mixed with 1 cup whole milk was 800 calories per feeding. That was the only nourishment he was able to take. About 2 wks after treatements started his taste quickly disappeared and then he was unable to eat/swallow without extreme pain.

I noticed there was mention in the earlier posts of making sure to keep the drs informed of pain. I can not agree with that more! All of our meds ended up having to be in liquid form that he could put in his PEG - including morphine after a severe bout with mouth infection that left his blood counts in critical stages and him in the hospital for 7 days.

He continues to have occassional issues with mouth sores but that is much better than in the beginning. He too went through the dental ok before treatments started and has been faithful about regular checkups. Just recently he developed a tissue (or lack of tissue) problem inside his mouth under the tongue area. We are trying to finalize plans for 30 hyperbaric treatments. His salvia is better but not at all where it was before and therefore has issues with alot of foods such as beef and breads.

Wish you both the best and remember to check here often as there are many who have walked this same path! K

catya88 said:

Thanks and question
Thanks Kent

Tim has already looked into his disability at work and has the paperwork on standby. He is't working more than he can take and I assume it will may be another week or two before he'll have to take leave. His work place has been very helpful and understanding.

Is there any type of logenzer he can use to sooth his mouth sores and throat? He is using the magic mouthwash but I was just wondering.

That's all for now - Cathy

mouth sores

Cathy,

I'm not sure if anyone mentioned the Baking Soda and Salt in room Temperature water solution to you. It was suggested to me by the NP when I was doing my radiation treatments. She suggested that I use 1 teaspoon of each in a quart of water and rinse/gargle often.

The solution didn't bother me, so I increased it to 1 tablespoon of each and rinse/ gargled as often as every 30 minutes if I felt I needed to. The solution semi-numbed my mouth and throat so I would be able to eat something soft during the treatments in order to keep the swallow motion. I did have the Peg Tube also, which was a Big Help getting the nutrition in.

My Best to Both of You and Everyone Here

Hal61 said:

Treatment start scheduled
Hi Hondo and Everyone,

The "submit a comment" page has a problem, so I will reply to Hondo, thank you very much. I got fitted for my mask, and did my final scan using the mask. It was tight, and I'm glad I'll be sitting up a little for treatments. I'm scheduled to start the 18th and 20th of January, 2010 on chemo, then rads. I have an appointment for tomorrow with a gastro interologist to see about my peg tube. I'm going to really try and get it done before my treatments start, thanks to all the advice from the great people on this board. I'll try and post as I go, for anyone who can use the information. I'm getting three chemos--Cisplaten--and 35 rads. For what it's worth, my radiation oncologist (I think I've learned to spell it correctly since my last post) did have me go to my dentist, who sent me to a maxio facial specialist to pull a tooth and do xrays. He also gave me for an rx for a product to use nightly to beef up my enamel, which I will pick up tomorrow.

I absolutely appreciate the help on here. My doctors are fine, but my experience is they don't want to say any more than they have to--or probably are able to. People here are my best souorce of iformatioin on what to expect.

I don't know if I should mention this, but I'm using medical marijuana with my treatment. I have listened to the radio Dr., Dean Edell, for many years and he mentioned a study that showed marijuana use was related to a lower instance of throat and head cancers; this is beyond its more accepted use as an anti nausea tretment with chemo. So, I'm experimenting to see if it might do me some good in treatment, i.e., slowing the spread of already existing cancer. I'm not advising it for anybody, and I don't mean to start a debate of drug use, but for now it's part of my treatment and I'll let everybody know if, in my anecdotal opinion, it has any value.

Again, to everyone here, Kurt, Landranger, Cathi, Dazey, and all, thank you for the information. The dietician has the suppliers of the tube hardware and the food products coming to my house soon to tell me about what to do, but the differences in calories, products, etc., is just what I need to know to make the best decisions, and that and more info come from this board.

You are all very brave.

Hal61

Hi Hal61

Welcome to CSN and please use me anytime you need as sometimes posting goes into cyberspace and we never see it again. I would like to know what the doc gave you to help with the teeth enamel as I have a lot of problems with that.

Also I have never heard of using Mary Jane for cancer treatment, I do believe in herbal treatment but this takes it to a new level, hope it works for you.

Take care and God bless and keep you