Scared
Comments
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Yes quality of life is important ........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.
That is what you are fighting for, life and it will have quality. You can get through this, just keep saying I can do one more day, everyday. If your day was bad just come here and put in writing, it will help you get through this. I never had chemo or radiation but so many of the others did and they will give you sugestions that will help.
I have been spending the last several days going to my Dr to get my Rx for oxygen they think it will help my lungs. The problem is i'm a neck breather and they are having a time trying to get oxygen hooked up to me. Now I won't be on it full time, someday I will be just not yet. I need it to recover If I did too much or I want to take my Grandkids to see the Giant Sequoia trees. It means a lot to me to be the one that takes them. I just can't breath at that elevation and not even walking. Most Oxygen hooks up to your nose and when you inhale it gives you the O2. It is not on constant and the tank will last four hours. For me....thats one hour because it has to be constant. But I will get it figured out and I will be the person who takes them to see a tree that is 32 feet across at the base and the first big branch is 90 feet up. The General Sherman, it might take me a few days to recoup, but I will be the one who takes them. That is my quality of life too.
Keep fighting and have a better tomorrow.
Bill Oct 2013
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Bill, i'm sorry they arewmc said:Yes quality of life is important ........
That is what you are fighting for, life and it will have quality. You can get through this, just keep saying I can do one more day, everyday. If your day was bad just come here and put in writing, it will help you get through this. I never had chemo or radiation but so many of the others did and they will give you sugestions that will help.
I have been spending the last several days going to my Dr to get my Rx for oxygen they think it will help my lungs. The problem is i'm a neck breather and they are having a time trying to get oxygen hooked up to me. Now I won't be on it full time, someday I will be just not yet. I need it to recover If I did too much or I want to take my Grandkids to see the Giant Sequoia trees. It means a lot to me to be the one that takes them. I just can't breath at that elevation and not even walking. Most Oxygen hooks up to your nose and when you inhale it gives you the O2. It is not on constant and the tank will last four hours. For me....thats one hour because it has to be constant. But I will get it figured out and I will be the person who takes them to see a tree that is 32 feet across at the base and the first big branch is 90 feet up. The General Sherman, it might take me a few days to recoup, but I will be the one who takes them. That is my quality of life too.
Keep fighting and have a better tomorrow.
Bill Oct 2013
Bill, i'm sorry they are having so much trouble getting you set up but I'd expect that since we are so different. I love your attitude and its great that you don't plan to let your poor health keep you from reaching your goal. i've never heard of those trees. please posts pics so I can see them. where are they located? do you use fb? if so, please friend me (debbie delaney deaton) so if you post your pics I can see them. you have me very excited now, i can't wait for you to make that trip, enjoy your grandchildren and share your trip with us.
God bless you, Bill,
dj
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ErbituxCivilMatt said: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
My plan of three bags of cisplantin I don't like. After one bag my hearing dimished greatly. Can you tell me about your chemo. Is it the one that causes the body rash? I would appreciate as many details. Thank you in advance. Laura
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Chemodonfoo said:I drove but
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.
I had first bag of three of Cisplantin. Not liking the loss of hearing I might ask about weekly. Any insights?
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Pegphrannie51 said:I didn't drive myself....
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
Thank you about the peg. They keep bringing it up and if I can wait I would rather. Sadly after just the first bag of cisplantin I ready have change in hearing. Thank you for all your kind posts.
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Hang In ThereGypsy1959 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.
Hi Gypsy:
I finished treatment seven months ago and i'm almost completly back to normal. Still can't taste food and have a dry mouth at times but on the whole life is really good. Unlike you I don't sing well, but still love to sing. I thought I would never sing or whistle again and low and behold i'm back to doing both.
As for the hearing loss I had two rounds of Cisplatin and had major hearing loss and constant ringing in my ears. I thought I would just have to live with it but that too has improved dramatically. I do have about a 30% hearing loss but the docs still think it will continue to get better. Its not horrible, really.
My advice is keep hydrated and well nourished during this process. It will make a huge difference in your mental and physical health. The PEG made both those things possible for me, but some people arrarently make it without them. I know you can survive without one but wonder if a person can really thrive without it.
How are you doing so far?
Hang in there.
S
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Hello Gypsy
Hi Gypsy,
So Sorry to hear of your diagnosis. I too had BOT SCC HPV. I finished my 7 week treatment on the 8th August, roughly 14 weeks ago. I did 7 weeks radiation and 6 weeks ( every monday ) of chemo.
I didnt fare well during the latter stages of treatment, but everybody is different. I was tired very often. Throat was terrible. I did have a peg put in before treatment, my lifesaver and just had it removed 2 days ago. Feel a little lost without it lol. Some can manage without a tube. I almost wasnt going to get it, thank god I did, I could not swallow any food. I have lost 31 kgs now , which is over 63 lbs. I got many dizzy spells recently , took a really bad fall in the middle of the night, hitting head first on vanity corner then floor. Ended up in emergency to seal a 4 cm gash to back of head. Was told dizzy spells can be a side effect. They seem to be easing quite a lot now.
I didnt go home on my last day of treatment instead I was taken to emergency and waited for a bed, was put in hospital for a week recieving 2 lots of blood transfusions due to chemo. Chemo has also made my hearing worse. I have had a hearing test and go back in 3 months to compare from last test.
I had the sore throat , a feeling like a chicken bone was stuck in my throat and cried buckets. But I have to say ... Although everybody kept saying " It will get better" , I always could not see it till now, the last week or 2.
I am now doing everything again that I did before cancer. I feel realllllly happy. My sore throat hasnt disappeared but the chicken bone stuck feeling has gone, just a sore throat that is quite manageable and I think this is mainly because it will get dry, keep having water. This helps a lot. I do have to be careful still with foods and always have water on hand to help food go down.
There will be a light at the end of the tunnel , just takes a while to see it but when you do , hell you will be one happy person and free of all that "C".
I get in my car , put my favourite music on loud when driving and I feel like Im floating on air, because Im that happy . Life will get much better for you :-)
All the best xxx
Robyn
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Gypsy, Erbitux is what i amGypsy1959 said:Erbitux
My plan of three bags of cisplantin I don't like. After one bag my hearing dimished greatly. Can you tell me about your chemo. Is it the one that causes the body rash? I would appreciate as many details. Thank you in advance. Laura
Gypsy, Erbitux is what i am takeing i just finished 11th. treatment and i have a slite rash on my scalp a little on my forhead, thats about it. it dont make me sick or anything, i have notice when i get the Erbitux that nite i dont sleep very good. i am praying for you.
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KTeacherKTeacher said: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.
TY
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PegSailor123 said:Hang In There
Hi Gypsy:
I finished treatment seven months ago and i'm almost completly back to normal. Still can't taste food and have a dry mouth at times but on the whole life is really good. Unlike you I don't sing well, but still love to sing. I thought I would never sing or whistle again and low and behold i'm back to doing both.
As for the hearing loss I had two rounds of Cisplatin and had major hearing loss and constant ringing in my ears. I thought I would just have to live with it but that too has improved dramatically. I do have about a 30% hearing loss but the docs still think it will continue to get better. Its not horrible, really.
My advice is keep hydrated and well nourished during this process. It will make a huge difference in your mental and physical health. The PEG made both those things possible for me, but some people arrarently make it without them. I know you can survive without one but wonder if a person can really thrive without it.
How are you doing so far?
Hang in there.
S
Friday I saw a differenct Onocologist who said I would be a "High Risk" getting the stomach feeding tube and understands why I am trying so hard NOT to get it. I am different from everyone because of my permanent colostomy. In fact I am already having horrible issues with that. I appreciate your input.
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ThanksRobyn64 said:Hello Gypsy
Hi Gypsy,
So Sorry to hear of your diagnosis. I too had BOT SCC HPV. I finished my 7 week treatment on the 8th August, roughly 14 weeks ago. I did 7 weeks radiation and 6 weeks ( every monday ) of chemo.
I didnt fare well during the latter stages of treatment, but everybody is different. I was tired very often. Throat was terrible. I did have a peg put in before treatment, my lifesaver and just had it removed 2 days ago. Feel a little lost without it lol. Some can manage without a tube. I almost wasnt going to get it, thank god I did, I could not swallow any food. I have lost 31 kgs now , which is over 63 lbs. I got many dizzy spells recently , took a really bad fall in the middle of the night, hitting head first on vanity corner then floor. Ended up in emergency to seal a 4 cm gash to back of head. Was told dizzy spells can be a side effect. They seem to be easing quite a lot now.
I didnt go home on my last day of treatment instead I was taken to emergency and waited for a bed, was put in hospital for a week recieving 2 lots of blood transfusions due to chemo. Chemo has also made my hearing worse. I have had a hearing test and go back in 3 months to compare from last test.
I had the sore throat , a feeling like a chicken bone was stuck in my throat and cried buckets. But I have to say ... Although everybody kept saying " It will get better" , I always could not see it till now, the last week or 2.
I am now doing everything again that I did before cancer. I feel realllllly happy. My sore throat hasnt disappeared but the chicken bone stuck feeling has gone, just a sore throat that is quite manageable and I think this is mainly because it will get dry, keep having water. This helps a lot. I do have to be careful still with foods and always have water on hand to help food go down.
There will be a light at the end of the tunnel , just takes a while to see it but when you do , hell you will be one happy person and free of all that "C".
I get in my car , put my favourite music on loud when driving and I feel like Im floating on air, because Im that happy . Life will get much better for you :-)
All the best xxx
Robyn
I have the weight to spare and always kept it on thinking just in case I have to got through this again lol.
The chemo is on hold til all doctors discuss my hearing. It is important that it not diminish further for me. I said I will do one more bag then not finish the 3rd one if hearing is worst and they might lower the dose.
If I have to get the peg at the end then so be it. Most everyone understands the risks and complications of me getting the peg.
I am fighting this and trying to do the best that I personally can. Radiation so far is not that bad but it is still the beginning 7/35.
I stopped radation early with my first cancer, had to sign papers, told I would get cancer again blah blah blah. Negative energy completely.
I had a 30% chance of making it 3 years. That was in 1998. I know I can do my best and let it go to God to control the rest.
Thank you for your positive input. I appreciate it.
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Thanksphrannie51 said:Stretch those jaws....
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
May I say right off the bat "YOU ROCK". Your input has been fantastic and much appreciated.
The anti nausea medication I have been on I was taken off of Friday (almost admitted to hospital but resisted lol) because of how it is effecting my system (don't want to get graphic lol but no output), it was Zofran.
The new onocologist I saw Friday was a dream. Med switched to liquids (yes please) and it will now be prmethazine with ativan as a back up if need be.
I was told to get ready to decide about pain meds. I may consider liquid oxy even with the hill billy herion stigma.
I go in for hydration 3x a week just for kicks and drink water. I now eat to live. Tastes yucky but I know I have to do it.
I have the magic mouthwash ready when needed (my dentist fought my insurance company for me). I was told to swallow then for 5 min eat eat drink eat. I will when I cross that bridge.
The chemo seems to have edged off. I was myself yesterday. Happy Happy Joy Joy Joy! I know it will be introduced to me again around Dec 9th.
My tongue hurts and is very gray/white. So I rinse with baking soda/salt. I still do the floruide trays although it does burn the tongue a bit.
Can you tell I am a bit of a control freak!
I no longer fear radiation. I will tell you why although you may think this gal is bat crap crazy.
While in the tube last week listening to Fireflight the words "Fear is just a crutch...All you have to do is ...Trust" filled my ears. The warmth of love and peace caused tears to flow from me.
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Oxygenwmc said:Yes quality of life is important ........
That is what you are fighting for, life and it will have quality. You can get through this, just keep saying I can do one more day, everyday. If your day was bad just come here and put in writing, it will help you get through this. I never had chemo or radiation but so many of the others did and they will give you sugestions that will help.
I have been spending the last several days going to my Dr to get my Rx for oxygen they think it will help my lungs. The problem is i'm a neck breather and they are having a time trying to get oxygen hooked up to me. Now I won't be on it full time, someday I will be just not yet. I need it to recover If I did too much or I want to take my Grandkids to see the Giant Sequoia trees. It means a lot to me to be the one that takes them. I just can't breath at that elevation and not even walking. Most Oxygen hooks up to your nose and when you inhale it gives you the O2. It is not on constant and the tank will last four hours. For me....thats one hour because it has to be constant. But I will get it figured out and I will be the person who takes them to see a tree that is 32 feet across at the base and the first big branch is 90 feet up. The General Sherman, it might take me a few days to recoup, but I will be the one who takes them. That is my quality of life too.
Keep fighting and have a better tomorrow.
Bill Oct 2013
I hope you win the fight Bill. I love the Sequoia forest. I miss California sometimes. The elevation is of course a factor with your breathing. I wish I could go with you lol, seriously.
I came to terms with the radiation and posted how. Chemo (ugh) will be figured out.
I will do my best Bill. My best.
Then come summer I will be the tiny dancer in the sand. Ok not so tiny ha!
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Chemo...Gypsy1959 said:Thanks
I have the weight to spare and always kept it on thinking just in case I have to got through this again lol.
The chemo is on hold til all doctors discuss my hearing. It is important that it not diminish further for me. I said I will do one more bag then not finish the 3rd one if hearing is worst and they might lower the dose.
If I have to get the peg at the end then so be it. Most everyone understands the risks and complications of me getting the peg.
I am fighting this and trying to do the best that I personally can. Radiation so far is not that bad but it is still the beginning 7/35.
I stopped radation early with my first cancer, had to sign papers, told I would get cancer again blah blah blah. Negative energy completely.
I had a 30% chance of making it 3 years. That was in 1998. I know I can do my best and let it go to God to control the rest.
Thank you for your positive input. I appreciate it.
...ask your doctor about changing the chemo instead of halting it after two rounds. My first two rounds were with cisplatin and the hearing changes were so dramatic that I told them I would not do the final round with cisplatin, so we agreed on carboplatin instead. I had no more discernable loss of hearing with the carboplatin instead of the cisplatin and the doctor said it would be just as effective at that point in time after two cisplatins...
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OHHJC F said:Chemo...
...ask your doctor about changing the chemo instead of halting it after two rounds. My first two rounds were with cisplatin and the hearing changes were so dramatic that I told them I would not do the final round with cisplatin, so we agreed on carboplatin instead. I had no more discernable loss of hearing with the carboplatin instead of the cisplatin and the doctor said it would be just as effective at that point in time after two cisplatins...
Thank you I will!
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HiGypsy1959 said:Thanks
I have the weight to spare and always kept it on thinking just in case I have to got through this again lol.
The chemo is on hold til all doctors discuss my hearing. It is important that it not diminish further for me. I said I will do one more bag then not finish the 3rd one if hearing is worst and they might lower the dose.
If I have to get the peg at the end then so be it. Most everyone understands the risks and complications of me getting the peg.
I am fighting this and trying to do the best that I personally can. Radiation so far is not that bad but it is still the beginning 7/35.
I stopped radation early with my first cancer, had to sign papers, told I would get cancer again blah blah blah. Negative energy completely.
I had a 30% chance of making it 3 years. That was in 1998. I know I can do my best and let it go to God to control the rest.
Thank you for your positive input. I appreciate it.
Hi Gypsy,
I too thought I would be fine , trying not to use the peg. Drs recommeded the peg go in before treatment. Although it was there , was trying my best to not use it at all. You have said you are at 7/35 ? Radiation for me anyway was all fine , coped really well and still ate really well till about mid to end of 4th week. It does take a bit longer than 7 treatments before it starts kicking in, roughly 4 weeks. I do hope that you will be able to eat. But 7th treatment is way too early to tell unfortunately. I was still eating really well into my 3rd week. I was warned by drs it would start to get hard by about 4th week and they were correct. I found it very difficult, couldnt eat at all , taste of food changed totally ,the peg saved my life.
I hope you are ok with your teatment and that you manage through all 35 fine.
Robyn
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Wow reallyRobyn64 said:Hi
Hi Gypsy,
I too thought I would be fine , trying not to use the peg. Drs recommeded the peg go in before treatment. Although it was there , was trying my best to not use it at all. You have said you are at 7/35 ? Radiation for me anyway was all fine , coped really well and still ate really well till about mid to end of 4th week. It does take a bit longer than 7 treatments before it starts kicking in, roughly 4 weeks. I do hope that you will be able to eat. But 7th treatment is way too early to tell unfortunately. I was still eating really well into my 3rd week. I was warned by drs it would start to get hard by about 4th week and they were correct. I found it very difficult, couldnt eat at all , taste of food changed totally ,the peg saved my life.
I hope you are ok with your teatment and that you manage through all 35 fine.
Robyn
Wow really
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Delete this BlogRobyn64 said:Hi
Hi Gypsy,
I too thought I would be fine , trying not to use the peg. Drs recommeded the peg go in before treatment. Although it was there , was trying my best to not use it at all. You have said you are at 7/35 ? Radiation for me anyway was all fine , coped really well and still ate really well till about mid to end of 4th week. It does take a bit longer than 7 treatments before it starts kicking in, roughly 4 weeks. I do hope that you will be able to eat. But 7th treatment is way too early to tell unfortunately. I was still eating really well into my 3rd week. I was warned by drs it would start to get hard by about 4th week and they were correct. I found it very difficult, couldnt eat at all , taste of food changed totally ,the peg saved my life.
I hope you are ok with your teatment and that you manage through all 35 fine.
Robyn
This blog needs to be deleted. I will not tolerate negativity. This is my life.
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Here is a sunset at SequoiaGypsy1959 said:Oxygen
I hope you win the fight Bill. I love the Sequoia forest. I miss California sometimes. The elevation is of course a factor with your breathing. I wish I could go with you lol, seriously.
I came to terms with the radiation and posted how. Chemo (ugh) will be figured out.
I will do my best Bill. My best.
Then come summer I will be the tiny dancer in the sand. Ok not so tiny ha!
I won the oxygen battle. Here is a link to a photo of a sunset at Sequoia. The colors were strange that day as the valley was fogged in. I have in expressions if you click my name and go to my prifile http://csn.cancer.org/node/289775
The mountains in the background are the coast range 105 miles away. Hope you enjoy.
Bill
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