Scared
I beat Stage 3 Rectal Cancer and now after a "punch out" of a tumor on the base of my tongue I have Stage 4a HPV tongue cancer.
Comments
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Welcome to the H&N
Welcome and sorry you need to be here. I do understand what you are going through. I was having my lungs checked [scoped] and when I woke he said "I'm afread you have cancer" and he was on VACATION next week. What the heck. Well I went the next day and saw My GP. He told me, it's ok, things are going on right now in the background to care for me and not to worry. He was correct, they were already getting me set up with help. So please try not to stress to much until you do see him. There are several that have had BOT SCC and are doing fine. It is a rough road to go down but you will get through it. This group is here 24/7 for support.
Bill
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Gypsy
I also had a tumor at the base of my tongue. They removed the tumor along with my epiglottis, uvula, and a few lymph nodes on the left side of my neck. I also did 30 radiation treatments. In two days it will be 5 years since I was diagnosed and no signs of it returning. It wasn’t an easy ordeal but if I can do it anybody can. As you know it is a scary situation and as long as you’re with the fine folks in this room you will never be alone. The doctors will lay out your options and we can tell you what to expect and help you get through it. (A cyber hand and hug when needed) I never found out it was stage four until after I was all done which in reality wouldn't not have meant anything because I just did what I had to to get rid of it.
You can do this.............Kick some butt
Life is good
Jeff
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Welcome
Welcome to one of the best support groups on the net, sorry for the reason you are here. First, check the Superthread, many helpful ideas for dealing with issues pre, during and post treatment. You will need to see your dentist and get any troubled teeth taken care of before treatment begins. We will be here to help you through.
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scared is normal
Gypsy,
Welcome aboard the good ship USS H&N.
I was stage IVa, scc, base of tongue, 1 lymph node, hpv+ (surgery, rads & Erbitux) and had to wait a month for my confirmation, not fun.
At 2y6m post, it has been a REAL head trip, but things are good and chances are they will be good for you too.
Good luck,
Matt
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Welcome Gypsy....
to the club nobody wants to join.....you did find the most supportive forum on the internet, tho.....so far so good
.Some people get a trach during the surgery part of oral cancer....I imagine it depends on where surgery is done, and how much swelling is there. It's to help breathing (as they say, nothing else matters if you can't breath). Most traches are removed when swelling is gone. I believe that is the "tube" you are referring to.
I've been on this board for going on 3 years.....there have been a number muscians who have come and gone. Seems their voices may change a little, but talent hangs in there....it just takes time to heal.
p
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The hole like you see in the smoking commercials........
It's not that bad to have the hole, it is a trach and if you need one it will be a temporary one to help you breath. I like breathing. Mine is permanent as I had a laryngectomy and removed my voice box. Yes it took a little time to get used to it but I can breath great and I still can talk and do just about anything I ever did. My voice justs sounde like I have a cold and a little hoarse. Now I can't sing, but I never could.[Family asked me not to] I had a neck dissection and remover 86 glands but didn't get disfigured, well I did lose my "adams apple" but that it. In my photo I have a scarf like that covers the hole. Oh, and what they say on TV about it and not bending over, It's all true. Now I have been cancer free when I came out of surgery, they got it all and just had my one year NED.
Next to the part you don't think you can do this. Wrong, you can, and you will get support from here and your kids can text and call. Remember this is open 24/7 and someone will get back to you to help support and answer any questions we can...........This is the Survivors group you joined.
Bill
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Thank You for the kindnesswmc said:The hole like you see in the smoking commercials........
It's not that bad to have the hole, it is a trach and if you need one it will be a temporary one to help you breath. I like breathing. Mine is permanent as I had a laryngectomy and removed my voice box. Yes it took a little time to get used to it but I can breath great and I still can talk and do just about anything I ever did. My voice justs sounde like I have a cold and a little hoarse. Now I can't sing, but I never could.[Family asked me not to] I had a neck dissection and remover 86 glands but didn't get disfigured, well I did lose my "adams apple" but that it. In my photo I have a scarf like that covers the hole. Oh, and what they say on TV about it and not bending over, It's all true. Now I have been cancer free when I came out of surgery, they got it all and just had my one year NED.
Next to the part you don't think you can do this. Wrong, you can, and you will get support from here and your kids can text and call. Remember this is open 24/7 and someone will get back to you to help support and answer any questions we can...........This is the Survivors group you joined.
Bill
My next step is pet scan to see if spread.
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Thank you Billwmc said:Welcome to the H&N
Welcome and sorry you need to be here. I do understand what you are going through. I was having my lungs checked [scoped] and when I woke he said "I'm afread you have cancer" and he was on VACATION next week. What the heck. Well I went the next day and saw My GP. He told me, it's ok, things are going on right now in the background to care for me and not to worry. He was correct, they were already getting me set up with help. So please try not to stress to much until you do see him. There are several that have had BOT SCC and are doing fine. It is a rough road to go down but you will get through it. This group is here 24/7 for support.
Bill
Bill I hope you dance. Thanks.
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DuggieDuggie88 said:Gypsy
I also had a tumor at the base of my tongue. They removed the tumor along with my epiglottis, uvula, and a few lymph nodes on the left side of my neck. I also did 30 radiation treatments. In two days it will be 5 years since I was diagnosed and no signs of it returning. It wasn’t an easy ordeal but if I can do it anybody can. As you know it is a scary situation and as long as you’re with the fine folks in this room you will never be alone. The doctors will lay out your options and we can tell you what to expect and help you get through it. (A cyber hand and hug when needed) I never found out it was stage four until after I was all done which in reality wouldn't not have meant anything because I just did what I had to to get rid of it.
You can do this.............Kick some butt
Life is good
Jeff
Would you mind telling me your permanent condition.
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gypsy, I just want to say you
gypsy, I just want to say you beat cancer before and you CAN do it again. you know it will be quite a bumpy road but you will get through it. we will all be here to cheer you on and here to listen when you want us too. I don't blame you for being scared. I remember when my cancer came back, i was scared to death, not just kinda scared. there are many of us here who have beat it 2 or 3 times! we are survivors! praying for tx to go well for you and to go quickly so you can be on the road to recovery and healing very soon.
God bless you,
dj
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Head Tripping
My results positive for HPV16. PET showed localized. Treatment is radiation 5 days a week for 7 weeks. Chemo will be every 3 weeks. I can lose my hearing from the chemo. My mask will be made tomorrow 11/11/2014 and port installed on Friday 11/14/2014 and if I don't chicken out treatment of both radiation and chemo start on Monday 11/17/2014. I have refused the peg. I know everyone reacts differently to chemo and radiation. So no one knows what side effects I will have and what will be temp and what will be permanent. I guess that bugs me along with flying on a plane wondering if a "tweeker" worked on the plane I was on. I am head tripping. Going through this alone is a drag. I want to be able to drive to my own treatments as they are far away. So if anyone drove themselves to treatment/went without a peg/kept the hearing please please let me know. The first cancer having a colostomy was a blow to my feminitiy and then my husband wiped out all the remaining of my self esteem. So my face, my singing are all I have left. I have no idea why I just wrote that. I am just an honest gal. For those who took the time out to write me I truly thank you.
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I drove butGypsy1959 said:Head Tripping
My results positive for HPV16. PET showed localized. Treatment is radiation 5 days a week for 7 weeks. Chemo will be every 3 weeks. I can lose my hearing from the chemo. My mask will be made tomorrow 11/11/2014 and port installed on Friday 11/14/2014 and if I don't chicken out treatment of both radiation and chemo start on Monday 11/17/2014. I have refused the peg. I know everyone reacts differently to chemo and radiation. So no one knows what side effects I will have and what will be temp and what will be permanent. I guess that bugs me along with flying on a plane wondering if a "tweeker" worked on the plane I was on. I am head tripping. Going through this alone is a drag. I want to be able to drive to my own treatments as they are far away. So if anyone drove themselves to treatment/went without a peg/kept the hearing please please let me know. The first cancer having a colostomy was a blow to my feminitiy and then my husband wiped out all the remaining of my self esteem. So my face, my singing are all I have left. I have no idea why I just wrote that. I am just an honest gal. For those who took the time out to write me I truly thank you.
My radiation was 35 sessions and I had small weekly doses of carboplatin chemo. My MO said based on the induction chemo I had earlier that I would not even feel the carbo which turned out to be true. I drove most days but once a week got a lift for company more than not being able to drive. Hang in there. Once you get past the first few sessions it becomes pretty easy. If you get anxiety from the mask, you can get something like Ativan to calm your nerves in which case you might need some help driving.
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I didn't drive myself....Gypsy1959 said:Head Tripping
My results positive for HPV16. PET showed localized. Treatment is radiation 5 days a week for 7 weeks. Chemo will be every 3 weeks. I can lose my hearing from the chemo. My mask will be made tomorrow 11/11/2014 and port installed on Friday 11/14/2014 and if I don't chicken out treatment of both radiation and chemo start on Monday 11/17/2014. I have refused the peg. I know everyone reacts differently to chemo and radiation. So no one knows what side effects I will have and what will be temp and what will be permanent. I guess that bugs me along with flying on a plane wondering if a "tweeker" worked on the plane I was on. I am head tripping. Going through this alone is a drag. I want to be able to drive to my own treatments as they are far away. So if anyone drove themselves to treatment/went without a peg/kept the hearing please please let me know. The first cancer having a colostomy was a blow to my feminitiy and then my husband wiped out all the remaining of my self esteem. So my face, my singing are all I have left. I have no idea why I just wrote that. I am just an honest gal. For those who took the time out to write me I truly thank you.
but that was because I was getting Amifostine daily at the Oncology office....to get that meant I also had to take an Ativan (Lorazapam) every day....I was too sleepy to drive myself to the rad office. Chemo days will be harder....I had the three big chemo's rather than the weekly. They'd unhook the chemo, send me to rads....then I'd come back to finish chemo.....it was a long long day. Maybe go to the cancer information part of your hospital and ask about rides. I did that, just in case hubby couldn't get me there....there were a bunch of cancer survivors who give rides to people who are going through treatment. You aren't as alone as you may think!!
I did not lose my any of my hearing, my voice did not change. As for the PEG, a number of folks here made it through without getting one...many got one in the middle of rads....and one got one the last day of rads. As long as you know if you need one, you should get one....they remove them when you can eat again....
The port is a blessing.....:). I can tell you're a survivor, so I know you won't chicken out.
p
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AFTER IT'S ALL OVER YOU'LL BE OK!!!!Gypsy1959 said:Head Tripping
My results positive for HPV16. PET showed localized. Treatment is radiation 5 days a week for 7 weeks. Chemo will be every 3 weeks. I can lose my hearing from the chemo. My mask will be made tomorrow 11/11/2014 and port installed on Friday 11/14/2014 and if I don't chicken out treatment of both radiation and chemo start on Monday 11/17/2014. I have refused the peg. I know everyone reacts differently to chemo and radiation. So no one knows what side effects I will have and what will be temp and what will be permanent. I guess that bugs me along with flying on a plane wondering if a "tweeker" worked on the plane I was on. I am head tripping. Going through this alone is a drag. I want to be able to drive to my own treatments as they are far away. So if anyone drove themselves to treatment/went without a peg/kept the hearing please please let me know. The first cancer having a colostomy was a blow to my feminitiy and then my husband wiped out all the remaining of my self esteem. So my face, my singing are all I have left. I have no idea why I just wrote that. I am just an honest gal. For those who took the time out to write me I truly thank you.
As to you not getting a PEG, I didn't get one. I had radiation for 6 weeks, and I got through the treatments without needing one. I lost weight, but had a few spare pounds hanging around, so it worked out.
As far as any head games you’re playing with yourself, the mind can play terrible tricks on you, but it works both ways. Use your mind to convince yourself that you will get through this rough patch, and you will come out the end tougher than you ever thought you’d be. When the pain or anxiety becomes too great, use your mind to transport yourself to a better place.
I'm doubly sorry that you're going through this alone. I had a lot of support, and it made a big difference. I did drive myself for the first four weeks of radiation, but then the pain became too much for me to tolerate without narcotic medication, so because of the narcotics, my doctor told me no driving. You should check with your cancer center or a local cancer support group, church group, etc. as you may be able to find a volunteer to assist you. Although I’ve always prided myself on self-reliance, this was a time I needed help, and trying to go it alone would have been a mistake for me. In fact, if nothing else, cancer taught me that seeking help is not a bad thing. Reach out to anyone or any organization you can. You'd be surprised how many people will be than happy to help.
I only had a few chemo sessions, no hearing problems, but terrible sores on my scalp. Now a bit over two years post treatment, some annoyances remain with respect to my mouth, (dryness, sensitivity, and some changes in taste) but other than that I'm as normal as I ever was, and do everything I did before cancer and treatment. I wish you all the best.
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What Earth AngelsBart T said:AFTER IT'S ALL OVER YOU'LL BE OK!!!!
As to you not getting a PEG, I didn't get one. I had radiation for 6 weeks, and I got through the treatments without needing one. I lost weight, but had a few spare pounds hanging around, so it worked out.
As far as any head games you’re playing with yourself, the mind can play terrible tricks on you, but it works both ways. Use your mind to convince yourself that you will get through this rough patch, and you will come out the end tougher than you ever thought you’d be. When the pain or anxiety becomes too great, use your mind to transport yourself to a better place.
I'm doubly sorry that you're going through this alone. I had a lot of support, and it made a big difference. I did drive myself for the first four weeks of radiation, but then the pain became too much for me to tolerate without narcotic medication, so because of the narcotics, my doctor told me no driving. You should check with your cancer center or a local cancer support group, church group, etc. as you may be able to find a volunteer to assist you. Although I’ve always prided myself on self-reliance, this was a time I needed help, and trying to go it alone would have been a mistake for me. In fact, if nothing else, cancer taught me that seeking help is not a bad thing. Reach out to anyone or any organization you can. You'd be surprised how many people will be than happy to help.
I only had a few chemo sessions, no hearing problems, but terrible sores on my scalp. Now a bit over two years post treatment, some annoyances remain with respect to my mouth, (dryness, sensitivity, and some changes in taste) but other than that I'm as normal as I ever was, and do everything I did before cancer and treatment. I wish you all the best.
All of you are such Earth Angels. After reading I feel such a peace. I am ready to rock and roll on Monday. Thank you sincerely for making me feel special and helping me conquer the fear. xoxox
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I also had base toungeGypsy1959 said:What Earth Angels
All of you are such Earth Angels. After reading I feel such a peace. I am ready to rock and roll on Monday. Thank you sincerely for making me feel special and helping me conquer the fear. xoxox
I also had base tounge cancer.I thought it was just a cyst or something until my ent looked and sent me for a pet scan.They removed part of tounge and replaced with tounge flap using muscle from my thigh.During the operation they also removed my teeth and put in a trach tube and also a peg tube.Both trac and peg tubes helped during radition and he took out trac after but waited on the peg until after the first pet scan.The peg really helped as I didn't really feel like eating and was able to keep my weight up.I go in Dec and he wants to see how strong my jaw and gums are as to he wants to send to a denist that customizes dentures to help me even more to eat and speak.Some of my words don't come out like I'd like because with tounge being tied down now it doesn't hir the roof of mouth on some words and with the dentures they will as the palte will be thicker then most dentures.But all and all feeling great gaining weight again back to work.My only regret is not going sooner and thinking it will go away.
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Gypsy, how did Monday go?Gypsy1959 said:What Earth Angels
All of you are such Earth Angels. After reading I feel such a peace. I am ready to rock and roll on Monday. Thank you sincerely for making me feel special and helping me conquer the fear. xoxox
Gypsy, how did Monday go? Are you feeling a little better now that the plan has been put into action? I sure hope so. Please know that we are ALL HERE FOR YOU and are always on the sidelines cheering you on. we will also be here when you ring the bell and we will all do the happy dance to celebrate. now that it has all started, you know it will go by quickly. come here any time you need to, ask anything you want to, vent if you need to, doesn't matter, we will be here for you. good luck as you start this journey, we are with you in spirit and we will be there at the finish line too!!!
God bless you,
dj
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Chemodebbiejeanne said:Gypsy, how did Monday go?
Gypsy, how did Monday go? Are you feeling a little better now that the plan has been put into action? I sure hope so. Please know that we are ALL HERE FOR YOU and are always on the sidelines cheering you on. we will also be here when you ring the bell and we will all do the happy dance to celebrate. now that it has all started, you know it will go by quickly. come here any time you need to, ask anything you want to, vent if you need to, doesn't matter, we will be here for you. good luck as you start this journey, we are with you in spirit and we will be there at the finish line too!!!
God bless you,
dj
I was hit hard immediately even with anti nausea meds. The one that melts under tongue gives me the hiccups and headaches with nausea still. I have ringing in my ears and they feel muffled. Radiation already is hurting where my jaw connects. This is only after one bag of chemo and three radiations. I feel this is way too soon to feel any effects and wonder if it is worth it at this point. My quality of life is something to think about.
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Stretch those jaws....Gypsy1959 said:Chemo
I was hit hard immediately even with anti nausea meds. The one that melts under tongue gives me the hiccups and headaches with nausea still. I have ringing in my ears and they feel muffled. Radiation already is hurting where my jaw connects. This is only after one bag of chemo and three radiations. I feel this is way too soon to feel any effects and wonder if it is worth it at this point. My quality of life is something to think about.
open your mouth wide many times per day....yawn exercise
. Move your jaw back and forth many times per day....that will help keep those muscles limber. You may as well do neck exercises many times per day, too. Turning your head from side to side, and up and down. As for the nausea....if they aren't giving you Emend, ask for it. It's the big gun of anti-nausea meds. You take it for 3 days after chemo. It seems to me that once Drs. see that you're "in the know' about your treatment, they get cooperative in letting you have a say in what you need. I didn't know about Magic Mouthwash till I got here, and nobody was offering it....so I asked and received.
Here is the link to my anti-nausea regime....I didn't feel great for a few days, but I wasn't hit hard. This really worked for me:
http://csn.cancer.org/user/166266/expressions
p
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