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Tongue & Throat Cancer

catya88's picture
catya88
Posts: 50
Joined: Dec 2009

Hi Everyone

My boyfriend was just diagnosed with cancer of the tongue, stage IV tumor and cancer of the throat. Still in the early stages of everything.

He has seen the radiologist, had his CAT and PET scans. Will see the oncologist and will see the nutrionist all this week. Don't have a set date to start treament yet.

I have read the information the one doctor sent home on all the great things that will happen during radiation.

So, I'm trying to find any posts on throat/tongue cancer and read other information.

Any thoughts and suggestions for what lies down the road will be greatly appreciated.

Cathy

SASH's picture
SASH
Posts: 279
Joined: Apr 2006

There are tons of posts right here on both Tongue and Throat cancers. What treatments are done, how people react to them, side effects, eating, swallowing, etc. Just read, read, read.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Cathy,

What SASH said - I've been reading everything I can on the discussion boards here. I'm a Base of Tongue IV patient, will start chemo-radiation in February, I think.

Something to keep in mind (as lots of people will say) is that treatment varies with the individual, and two different people may react very differently to the same treatment protocol.

The people here are helpful and forthcoming - good luck - keep breathing.

I hope your boyfriend (and you) do well.

- Pam

catya88's picture
catya88
Posts: 50
Joined: Dec 2009

Thanks SASH and PAM

Pam when were you diagnosed? My boyfriend, Tim, was diagnosed December 7. I ask because they are going to start radiation next month, February seems so long to wait.

I have alot of reading but this group looks very supportive and informative.

Does Stage IV mean the throat cancer as well? or is that another story?

He wants to keep eating and it is getting more difficult. Mac & cheese is going down well so he's been alot of that and full yogurt as well. They gave him some samples of BOOST at the hospital yesterday.

I'm staying positive in my thoughts and actions.

Cathy

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

A number of others have gone thru tongue C treatment, which may vary from my Nasopharyngeal, but there is that which most all of us experience with head and neck:

1) feeding tube- a nuisance, but also a necessity which far outweights the negatives brought-on by having one. Work with the Dietician. The formula will do it's job. Have to keep a certain level of good calories being ingested every day. Better to get installed before treatment, than during.

2) realize there are prescrips to help Tim thru this, and all he should have to do is notify the Drs. when he needs more help. The diagnosis of C tends to throw prescrip portocols out the window- and you will get the meds needed to get thru this, if you ask for.

3) stage-4 means it has spread from the Primary to other organs and places in his body. I would assume he will also get chemo, but the tongue was not my C. My experience is the worst of times was when I got the chemo and rad at the same time- and especially the time soon after the chemo stopped.

4) 101 fever- get him to the ER/call your Onco. Anything below is considered part of the battle. 101 means the battle has gotten too much for him, and likely needs more med help.

5) NEVER lose hope, and don't for a minute let him think he can't win this battle. Negative thoughts are of no use, and serve no purpose. We on this forum are proof he can make it thru this, with your help. I'm 13-months/8-months post-treatment, and going strong.

kcass

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Cathy,

I'm not waiting 'til Feb for treatment, just for radiation (rads). My diagnosis (dx) was end of Oct. I started induction chemo (no radiation) Nov 19 - full day of IVs, then home, where a mobile nurse hooked me up to a 5-day pump for add'l chemo (totally mobile - the drug's in a fanny pack I wear for 5 days each round). 21 days later, I started again with round 2. Round 3 starts Dec. 30, if all goes well. Then a short break, THEN chemotherapy with radiation (chemo-rads). For me, stage IV means my cancer has hit two lymph nodes (in the neck)- one huge, (that's how they found the cancer)- this means it spread from the primary (base of my tongue) to the lymph nodes.

I, too, find some things too difficult to eat. When I just can't, I supplement with liquid nutrition (like Boost or Ensure, but for diabetics). I also do a yogurt smoothie with fruit and protein powder added. My chemo doctor (MO - medical oncologist) just told me to keep up my calorie and protein intake (and, of course, water). Most of the eating advice I got, though was from the booklets I got at the MO's and discussion boards like this.

I keep reading people saying "Eat and swallow as long as you can". I try to do this as much as possible. Some people can swallow throughout treatments (tx). Some cannot. I'd be interested to hear how your (his) treatment goes, since I'm going to be doing the same later. Someone on a post repeatedly says "10% of people sail through chemo-rads. 10% suffer horribly. The rest of us are somewhere in between." Here's hoping you guys are sailors.

Oh - when they tell you to monitor his temp - do it! I got an infection round 1, and would never have known I had a fever if I hadn't been checking my temp religiously. When your immune system in compromised (part of chemo), it can't react like it normally would to infection (feeling bad, hot, etc.). I felt just the same as I did the day before I got the fever.

As a newbie, I can only give you what I know - as they read your post, others with more wisdom/experience will chime in.

Round 1 chemo, I did get some medicine that helped with pain while I was eating - let his dr. know everything that's going on.

Again, breathe - be well

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

Cathy,

The first you did the smartest thing you will do in helping Tim out with his treatment and that is logging on here.

My name is Kurt and I was diagnosed sept. 11 2009 with SCC of the tongue stage IV with spreading to 3 lymph nodes on one side of my neck and one on the other side. I began treatment of 33 rads and 3 chemos (Cisplatin) on Nov'9th. I have 6 rads and one chemo left.

Tim's head is going through a lot right now. I don't know how much he will share with you. All you can do is be there for him. He may at times have anger and depression. I do know that the best thing for me where my pity parties. They would come on at times or I would bring them on myself. I chose the shower. I was alone and have privacy. They where very important for me because as I learned, as the treatment date got nearer and began I had to be focused on taking care of myself.

What you hear from these people on this website is what is going to get Tim through this in the best possible way. Try and get Tim to post on here himself and meet these people. These people outside of my family have been the most important people I have ever had in my life.

Now as far as Feb. seeming like a long ways off...well it is. Seems like forever but trust me your Dr's know what they are doing and if they don't these people will let you know. But Feb. is about right as far as starting. There are a lot of things you and Tim are going to go through up till then. There probably be Pet Scan. Need to have a feeding tube put in. Meeting with dr's. A mask has to be made. Computer simulations run. A lot has to be done.

Also they will run a HPV test to see if he is positive. You will learn about all these things in the coming weeks but do make sure you ask them about this test.

Finally, you and Tim keep on living. Treatment will change things in your life but right now just start to deal with the emotional side of hearing this news. I am very sorry Tim has been diagnosed but know that you have many friends here who will help you every step of this journey. God bless you and please tell Tim that he has many people who are now praying for him.

Kurt

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

I am through treatment and free of stage iv tongue cancer for almost three years. Kurt is right. This is a wonderful place to find out what is going to happen. My doctor asked me the day I was diagnosed, "Are you ready for the fight of your life?" I said, Yes." Little did I know the import of his words. This site has given me hindsight for what I went through.(My wife and brother said I mostly slept through my treatments.) Had I been on this site I mite have had foresight and more tools to deal with the onslaught that was ahead. No matter what...It is doable!! Keep hydrated, medicated, informed, and continue to use the forum as a tool to wellness. Good Luck!!!

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Cathy and Everyone,
My name is Hal and I got my Stage 4, base of tongue diagnosis in mid November. I've been shuffling through the process as you all are, or have. Like Kurt, I'll be getting 3 chemos and 7 weeks of rads. I live alone, and am curious as to whether I will or won't be able to drive myself to and from treatments, in city. Dr. said yes, nurse said yes; the social worker said probably not. I'm faxing the American Cancer Society a "referral" requests that is only a page long,and checked a box indicating I'd like someone to call me about transportaion needs. As I read I see that many of you had someone close, nearby, but there must be other's like myself. Any advice or opinion would be appreciated. I keep a picture (borrowed from the Internet) of a healthy lymph cell on my wall, and try to look at it and picture it moving into my nodes on and off during the day. Can't hurt. I wish all of us the very best.

Hal61

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

Hal61, so sorry you have to go through this. I am 2 months out of treatment. (33 rads, 3 chemos for SCC base of tongue) My treatments were 50 miles from my house so I had to drive everyday. The weeks I had chemo I didn't feel that I would be safe driving. (chemo brain?) Some people handle the chemo better than others so tough to say how it will go for you. I like the idea of the healthy lymph node on your wall. I used visualization as well. As I lay on the table under the mask getting my rads I would imagine the cancer cells getting hammered and dying repeating over in my head thoughts/comments about them dying. It was great satisfaction. I also had my beautiful wife and daughter at home. My daughter was a huge strength as I couldn't bear the thought of her seeing me sick and weak and it causing her to feel fearful and insecure. I was up everyday like normal and tried to keep as normal routine as possible. My wife was very tuned in with how I was feeling each day, put up with my nodding and head shaking the 2 weeks I couldn't talk and was generally just there to pick up the slack. There were times I just needed to handle it alone but I am so thankful I had their support. I wish you well and keep posting.

Mike

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Thanks for the kind thoughts and information Mike. I'm still working toward treatment. Today I go to the dentist to get a problem toooth pulled. I have to have a clean bill of health from my dentist to proceed. I'm glad you're through it. The chemo seems to have changed in the last few years, with three sessions. Do you mind if I ask what the chemical agent or agents used were? Kurt used only one for his three, if I'm reading his post correctly.

best, Hal61

catya88's picture
catya88
Posts: 50
Joined: Dec 2009

Thanks to all, again.

Pam - Tim is the same as you with the cancer. Stage IV base of tongue and two lymph nodes, plus the throat cancer. The doctor said it had not spread to his jaw, lungs or esophagus.

Thanks to all for the tips, need to go get a thermometer now ;-)

Tim goes in next Tuesday for the feeding tube and will start the chemo and radiation on December 28. Every day for seven weeks. He had a good day yesterday, he was talkative and played with the dog and ate alot of mac and cheese. Still doesn't want to talk about it, not even with his brothers, who I've been talking to and keeping them up-to-date. I think Tim's job will pull him through this. He's not one to sit around and do nothing.

I'm overwhelmed with everyones good thoughts, concerns and tips. The last support group I joined, for my TMJ, was anything but supportive. I look forward to keeping in touch and reading everyones stories and how they are coping. Sending happy thoughts to everyone.

Cathy

Dazey
Posts: 86
Joined: Sep 2009

I am out of radiation treatment almost 8 weeks. I did not have chemo, but 30 IMRT (six weeks. I also found this board early and asked a similar question. The answers were varied just as each person is varied. In my case I was able to drive myself to and from radiation treatment. I also worked full time during it. I would leave work a little early and drive the 45 minutes to the center. The only time I did not follow this schedule was when my sister came to visit for week six and would not let me drive (and I took off work to visit. The day she left, I went back to work.

Each person is different. Please remember that. This worked for me. Good luck on this journey - it certainly will keep you busy. Dazey

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Thanks Dazey, for your reply and your story. I hope I have your stamina and determination!
Hal

catya88's picture
catya88
Posts: 50
Joined: Dec 2009

Hi everyone

Happy Saturday! I live in Virginia and we are getting the BIG SNOW.

I noticed Tim breathes through his mouth and I know reading about the radiation that the throat and tongue will become swollen, anyone have any experiences and suggestions?

What about the mouth sores? He has a real hard time with that.

Ok, well, I'm going outside to dig a spot for my dachshund :-)

Cathy

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Magic Mouthwash. My Onco also had me on Nystatin to fight infection for awhile. If the sores extend out to the lips, then the Aquaphor lotion on those sores does okay. The sad thing is- those sores began late in week #1, and were with me thru all my treatment, to varying degrees. The good thing is- the mouth healed great once the treatment was done. It's just part of the battle a lot of us have experienced, and now Tim is, also. He'll get thru it. Just keep giving the body what it needs via the feeding tube.

As for the breathing- I had/have Nasopharyngeal, and did not have much trouble with that aspect of it. Had nosebleeds, which stopped by stuffing kleenex up my nostrils for awhile, most every day for over a month, but the breathing was the least of my problems.

Believe you can, and you will.

kcass

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

Sorry for the delay in responding Hal, my chemo used cisplaten for an 8 hour infusion on Monday of my chemo weeks. When I left the cancer center that afternoon, I would have a pump in a little pack around my waist that would inject a drug called 5FU into my port about every 25 seconds for the next 96 hours. I would go back to the cancer center each day and they would check the pump and make sure everything was working OK and then on Friday after the 96 hours were up they would take it off. By then I would be feeling really crappy. Took a couple days before I would feel somewhat better. I would get 2 weeks off and then do it again until I had completed the 3 cycles. The first cycle was doable, the second I had a toxic reaction to the 5FU and had to get the pump off 1 day early then I spent the next Monday through Wednesday getting hydration because I was a train wreck. Doc altered 3rd cycle a little bit and although still bad I got through it. Additionally I would have a radiation treatment every day except Saturday and Sunday until I had 33 of them. Like those above have commented, I suffered with bad mouth sores and the sides of my tongue really took a beating, lips dry and cracked. I made sure to keep sipping water/gatorade to keep my throat and swallowing muscles active as the Doctor had said to me, "Whatever you do, don't lose your swallow". I'm glad I listened. I lost 10-12 pounds at every chemo cycle despite having a PEG and using it. Might have got a little behind the ball before I jumped in with it. If Doc advises PEG prior to treatment, I'd listen if I were you. It sure was a life saver for me. Good luck and I'll try and answer anything else for you if I can as will others here. From my experience with this board, these people are all top shelf.

Mike

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Mike, thanks for your reply. It's commendable that you and others take your time, post treatment, to offer information and encouragement on this board. All I can say is thank you and thank all of you that revisit your experiences for my and others' sakes. I will do the same.

Cisplaten is the name I was looking for, same as Kurt's. I see my onocologyst next Monday and will ask him if my rx will be the same as yours. It's funny to be scrambling to get a start day for my treatment, given the awareness the board has brought, but I'm sure it's the same for most.

Very best to you and your wife and daughter Mike.

Hal

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

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

catya88's picture
catya88
Posts: 50
Joined: Dec 2009

Hi All

Tim asked his doctor to move up the start date on his radiation. Today was his first session, is that what you call it? Anyway, he didn't do well. He was dehydrated so he had muscle spasms and is/was in alot of pain. He also got his feeding tube as well. They are keeping him overnight to hydrate him.

When I first got there, he was in alot of pain but as the fluids got in and the pain meds he was doing much better, I could even understand what he was saying. Even Tim told the doctor he was talking much better.

So anyway, the other doctor is suppose to write a script for home health care to come and set up for the feeding tube, Tim is trying very hard to eat but he's just not getting enough.

That's my update, thanks for everyone's support and tips.

Cathy

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Cathy- we are all different, and we all "get in," at different times/stages during each's battle with C. Might be a very good thing that he's got an overnight, and "they're on it."

And glad he got the tube thing done. 4.0 is cheaper, and will need fewer/day than the 1.5, but not all can tolerate it (regularity). Get meds for both extemes of bathroom regularity, because they don't know which he will need, and he may need both before it is done (I did). Just the way it is. Have you talked to a Dietician? He'll need the # on how many calories he needs/day, and that's who will provide it. I needed four 4.0 bottles/day.

Our treatment is different. I didn't need anything for pain until the end of the 4th day- and that's when I needed in a major way, but didn't have. I find it good Tim's got that part started early. I would, however, suggest being cautious on the Morphine use. Scared me, but I did use for some 4 weeks. Vicodin is the better route, if it takes care of the needs. ALSO- if Tim's having anxiety-related issues (as I did- the easy way out was in play for short while), let the Drs. know. Two 1/2-tabs of Xanax/day did help me a lot. The diagnosis of C makes it available, Cathy. Trust me on this.

Now, Cathy, is the time for you to experience your finest hour. The days and weeks to come are historic/out of the ordinary in your life, and a time of which you will long remember. Tim needs you now more than you, and maybe he, can know. You now have the opportunity of becoming one of whom we C vets know to be Angels. Please be an Angel for Tim, Cathy. Will not be easy, for either of you, but there will come a time when you will remember...and tears of happiness will fill your eyes: such is of the realm of life where Angels dwell with their good works. That is where you are at, Cathy. Know who you are, now. And, as a C vet of 13-months, I pray that you are the Angel Tim now truly needs in his life. A great storm is upon you, but there you stand, holding hands and facing that storm as if it cannot shake you. Believe it will not, Cathy, and it cannot.

Believe. You, Angel, are now in all our hearts.

kcass

catya88's picture
catya88
Posts: 50
Joined: Dec 2009

Thanks Kent

I'm going to the hospital after I finish my morning routine. I have a list of questions to hit Tim with and I spoke to his one brother last night and we agreed his parents will come down for the duration to help me with everything.

Tim is stubborn and won't like it but.........he doesn't have a choice. I have a long road ahead of me but with people like you, Pam, Hal and sorry, don't remember everyone's name, I'll make it through. I'm a big believer in positive thinking and laughter. I already told Tim I wasn't going anywhere, I've been with him 8 great years and it's not over!

Much love to all - Cathy

CajunEagle's picture
CajunEagle
Posts: 361
Joined: Oct 2009

Cathy,
You mentioned above that the hospital gave y'all some Boost samples. That stuff is a life saver (it was for me...and no, I don't sell it). Tim is going to have to have anywhere from 2000 to 2400 calories per day just to keep weight on. Get the Peg Tube and use that Boost. I realize it's a little more expensive, but get the Boost Plus. Boost has 240 calories, whereas Boost Plus has 360 calories per 8 ounces. I also use Two-Cal and it's 475 calories per 8 ounce can. I stick with Vanilla, cause to be honest, Butter Pecan and Chocolate are pretty bad when they come back up. But even that goes away after the last month of treatment. Hang in there.

shylow
Posts: 4
Joined: Jan 2010

my daughter needed to have extra nutrients and she didn't have the money for boost so the social services at the hospital hooked her up with a nurse to come to the house and her insurance and the hospital helped her get "replete". she does not have a peg but she does have a tube that goes in her nose and down to the stomach. do you know of anyone who had mususitis (extra muscus in the throat) while taking radiation? the doctor said it will go away once the treatments are over. anyone?????????

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

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's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

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

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

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

kcass

gsurge's picture
gsurge
Posts: 4
Joined: Jan 2010

I have 10 cases of Gevity you can have if you need it.........Gary

Hondo's picture
Hondo
Posts: 5744
Joined: Apr 2009

There will be times when Tim will try and pull away from you, but please don’t let it get to you. In going through my first treatment all my Children moved out of the house and no one would come over and visit, I would ask my wife what was the problem with everyone. We all go through treatment differently and it affects everyone sometime good and other times bad. I did not realized just how short of a fuse I had while I was going through treatment. Even my wife I would get up-set with and I know I told her things that hurt, but she like a rock stood there because she knew it was not the true me. I am so blessed to have someone like her who when everyone else left care enough to stay.

Cathy you also need to understand the affect that Tim treatment will have on you emotionally. We are all here to help you and keep both of you in our prayers.

God bless

gsurge's picture
gsurge
Posts: 4
Joined: Jan 2010

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

Hondo's picture
Hondo
Posts: 5744
Joined: Apr 2009

Welcome to CSN I am glad you are here

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

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's picture
catya88
Posts: 50
Joined: Dec 2009

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

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

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's picture
catya88
Posts: 50
Joined: Dec 2009

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

kkw62
Posts: 12
Joined: Jan 2010

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's picture
catya88
Posts: 50
Joined: Dec 2009

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!

kkw62
Posts: 12
Joined: Jan 2010

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

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Unfortunately, not to my knowledge. Ice did bring relief to my mouth, along with the magic mouthwash. If there's any specific areas of pain, perhaps something like the Hurricane stuff- but that has to be approved by the Drs. Morph and ice, Cathy, is what got me thru it.

Glad to hear about the LOA preparations.

kcass

MarineE5
Posts: 751
Joined: Dec 2005

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

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

HI Cathy,

Pls see the Thread on 'Glutamine Powder' for assistance in healing of mouth and throat.

REgds
Scambuster

Hondo's picture
Hondo
Posts: 5744
Joined: Apr 2009

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

catya88's picture
catya88
Posts: 50
Joined: Dec 2009

Thanks everyone for the tips and suggestions.

Another question...........Tim has chemo on Tuesday. Afterwards and on Wednesday and Thursday he does very well talking and is able to eat more, is this normal?

Not much else going on for now - Cathy

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

It is likely that Tim's chemotherapy mixture includes benadryl or some other relaxation/anti-anxiety elixir along with decadron or some other steroid to alleviate nausea.

In my case, and I have heard the same from others, the decadron in particular turned me into a whirling dervish for the first 24-48 hours following treatment.

Perhaps Tim is benefitting from one or both of these drugs?

Just a guess.

Take care,

Joe

catya88's picture
catya88
Posts: 50
Joined: Dec 2009

Thanks Joe

He is getting a nausea med with his chemo and two hours of hydration afterwards. We think it's a good thing.

Cathy

dupals76
Posts: 1
Joined: Jan 2010

Hi, everyone.
I've read through everyone's comments here and cannot begin to tell you how lucky I feel that there are caring people out there to help us thorugh this. My husband was diagnosed stage 4 in his tonsil with one involved lymph node. He started Chemo and Radiation Jan.4th - cysplatin for 6 hours on Monday, and then the pump for the rest of the week with the 5FU? (appropriate acronym, I thought). Also, Rad every day.
He lost taste late last week, and has just about stopped eating. He opted to not get the feeding tube,but after reading these posts, I am going to talk to him abut gettng it while he still has the strength.He isn't working - he has a great boss who just finished surgery for Prostate Cancer last year.
I am worried about the mouth and throat sores, and his reaction to not being able to eat. He sleeps sittng up during the week because the port/pump gets in the way, and so is very tired.
Looking for suggestions on food/drink - he says water or soda tastes like chemicals, but can keep milk down fairly well.
And Thank You - Susan

debbiejeanne's picture
debbiejeanne
Posts: 2401
Joined: Jan 2010

Hi Susan. As it states here everyone is different but I would strongly recommend the feeding tube. Eventually your husband will not be able to swallow foods or anything solid so he will really need it. I had throat cancer and I am 3 months out from my last radiation treatment. Oh yeah, the radiation is what is changeing the tastes of foods. I am just now getting to a point where I can try some foods. Chocolate tastes awful to me. The fooding tasting bad will get worse. The feeding tube is a small inconvenience but nothing that can't be tolerated. In fact, it is probably the easiest part of the treatment.
I'm sorry you and your husband have to go thru this but I believe this site will help you with info and other needs. People are very good about sharing their info and answering any questions you may have. I wish your husband the best and the most important part of the treatment is FAITH IN GOD!
God Bless,
Debbie

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

(New Riders of the Purple Sage reference)

I guess it depends on who you believe. One study indicates that an active ingredient in cannabis has a positive effect on brain cancer, while another indicates that it has a negative impact on the odds of acquiring testicular cancer (which seems to refute once and for all the notion that men's brains are in their ... but I digress.)

My mother, suffering from ovarian cancer with metastasis to the brain from a previous bout with breast cancer, was prescribed a pill version of THC (the 'active' ingredient in marijuana as you probably know) in Texas of all places, way back in the early 90s, to alleviate nausea and pain.

I understand and appreciate its use in that regard. However, in the article I quote below, I note that they are referencing what appear to be the damaging effects of SMOKING marijuana as opposed to taking a pill that contains its active ingredient.

No one is likely to mistake me for a conservative any time soon, and, for my money, if alcohol and tobacco are legal then it is hard to understand why MJ is not. It seems, though, that ALL of them cause cancer.

Which is to say, Hal, be careful, choose wisely. A whole bunch of people have managed to survive head/neck cancer without marijuana, despite your radio doctor's advice.

Take care,

Joe

From WebMd Health News:

[June 23, 2009 -- Smoking pot causes cell damage that could make a person more likely to develop cancer, researchers report.

Scientists at the University of Leicester have discovered that marijuana (cannabis) smoke alters DNA, the genetic material located in cells of the human body. Some forms of DNA damage can lead to cancer.

Many studies have shown that tobacco smoke damages DNA in a way that boosts risk for lung and other cancers, but until now, it's been unclear whether cannabis smoke could do the same. Of particular concern is a cancer-causing chemical called acetaldehyde, which is found in both tobacco and marijuana smoke. Using new chemistry techniques, study researchers showed that the chemical, when present in marijuana smoke, caused DNA damage in a laboratory setting.

The discovery suggests that marijuana smoke may be as harmful, or perhaps even more toxic, than tobacco smoke. In fact, study researchers say that smoking three to four marijuana cigarettes a day causes as much airway damage as smoking 20 or more cigarettes a day.]

debbiejeanne's picture
debbiejeanne
Posts: 2401
Joined: Jan 2010

Cathy, I'm truly sorry to hear the hard to swallow news. I am currently recovering from throat cancer. I had 35 treatments of radiation. My last trmnt was Oct. 22. The radiation causes many side effects which I didn't know in advance. I didn't ask questions thru my treatment because I didn't know what to ask. My advice is ASK every question you have. Here are the side a swollen throat which makes it very hard to swallow. I have a feeding tube b/c I can't swallow food. My throat stays dry so I must always have a glass of water with me. I can't sleep well b/c the dry throat causes me to cough most of the night. The horrific burn on my neck from the radiation was awful but once we put Aqua4 on it, it was BETTER. It immediately took away the pain. I am also very tired.
I wish you guys the best and will pray for you. Please keep us posted.
Sincerely,
Debbie

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

Hi Debbie! You and I finished radiation around the same time. I had 35 treatments too. My last treatment was Oct. 28 of last year. I just got my feeding tube out appox. 3 weeks ago. I think maybe I should of kept it in for longer, as I still have a hard to swallowing most foods. I do drink at least 2 Ensure a day. I wake up at least once through the night with a really dry throat and coughing. Sometimes the coughing lasts for 15 mins., even if I drink water. I was lucky with my skin. I didn't have a hard time with it healing. I applied saline water to it twice a day and then a creme called Gaxal Base. I live in Canada, so I don't know if U.S. has the same:)

Take care,
Cindy

debbiejeanne's picture
debbiejeanne
Posts: 2401
Joined: Jan 2010

Cindy, thank you for replying. YOu're right, we finished one week apart. I'm glad you are done with your treatments. As I read all the posts here I cried so hard I had to stop. To everyone here, I'm so sorry you are going thru this and I will put each of you in my prayers.
Cindy, I'm sorry you are having a hard time swallowing. I still have my tube and wouldn't dream of getting it out as I have a very hard time swallowing. I've gotten choked several times and it scares me to death. I still can't talk right yet. I also cough at night. I'm up at least 5 times coughing and sometimes to the point where I choke. Has your doctor told you how long that will happen? I really have no idea. Have you heard that you cancer is gone? I have, praise God. I cried when the doctor told me b/c I was sooooooooooo happy. I pray that yours and everyones cancer will be gone after treatment. I'm just curious, were you a smoker? I smoked for 40 years. I quit tho with the C scare.
God Bless Everyone,
Debbie

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