Fear!! Erbitux. Alcohol consumption, fu 5 , Tomotherapy, kids back home
Comments
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My Story
Hi John, I was STGIII SCC Tonsil Cancer, and a lymphnode...HPV+.
Tonsils came out, port installed, nine weeks of chemo in three week cycles, Cisplatin, Taxotere and 5FU. Then similar to you, seven weeks concurrent weekly Carboplatin and 35 daily rads...that was over 2 1/2 years ago now, finished up Jun2009.
You're right, it's not easy, but doable....and of course,everyone is different.
I worked from home January 2009 (diagnosed January 2nd), through August 2009. Of course I'm an IT guy, so I could connect to all of my work computers and never missed a beat.
Working during the hours and days I felt good, making up time for the days or hours I felt like crap.
Ifeel I had minimal problems,I never got sick (nauseaous a few times, but never sick). I did get high fevers once, but that was after about 32 doses of Amifostine. Those were injections just before each rads session to help eliminate or minimize the thick ropey phlegm so many get...and it is supposed to help with saliva retention.
I never had the thick phlegm, and about 95% of both taste and saliva have returned... I did loose all taste and saliva for several months, but very slowly both returned.
Other than some anxiety and a thyroid that's going south, that's about the extent of my long term side effects.
Best,
John0 -
Hi John
My story similar to Skiffin, rt tonsil cancer, lump in right side of neck. Had the tonsil removed end of June, saw the oncologist for the first time in July, started a series of 3 chemo infusions over a 9 week period in Augusy, cisplation, toxetore, and 5FU, neither my onco or the radiation onco can feel the lump anymore. Will be starting radiation on Nov 1 , 39 sessions, with a chemo infusion once a week for the duration of rads. During chemo I experienced minimal problems, counting myself lucky. Welcome to the group, a lot of helpful information and a great bunch of folks. The company I work for has allowed me to work from home during chemo infusions, with the start of radiation, I plan or at least hope to feel well enought to do the same. I've chosen to have my rad treatments @ 7:30 pm, come home and sleep thru the evening,then work for the 4 hours my company asked me to do, will wait and see if this works for me or not.
Best wishes and good luck thru all your treatments.
Linda0 -
Thanks Skiffinosmotar said:Hi John
My story similar to Skiffin, rt tonsil cancer, lump in right side of neck. Had the tonsil removed end of June, saw the oncologist for the first time in July, started a series of 3 chemo infusions over a 9 week period in Augusy, cisplation, toxetore, and 5FU, neither my onco or the radiation onco can feel the lump anymore. Will be starting radiation on Nov 1 , 39 sessions, with a chemo infusion once a week for the duration of rads. During chemo I experienced minimal problems, counting myself lucky. Welcome to the group, a lot of helpful information and a great bunch of folks. The company I work for has allowed me to work from home during chemo infusions, with the start of radiation, I plan or at least hope to feel well enought to do the same. I've chosen to have my rad treatments @ 7:30 pm, come home and sleep thru the evening,then work for the 4 hours my company asked me to do, will wait and see if this works for me or not.
Best wishes and good luck thru all your treatments.
Linda
Thanks Skiffin andLinda.
Skiffin, you give me some hope that this will not be all that I fear.
Linda, best of luck. Perhaps we will be as lucky as Skiffin with the rad.
Is U of C unique in the radiation twice daily including admission to the hospital from Sunday night until Friday every other week for ten weeks? 5 Fu by infusion is given 24/7 during my stay's. Linda is 5Fu part of your therapy and have they spoken to you about it's shortage? They tell me that it is there first line of therapy concurent with the rad, but due to it's shortage they might have to switch to another chemo at this stage.
Good to hear from you both and best of luck!
John0 -
Welcome
Welcome John. This is a great site to get information. Don't worry, get informed! This is doable but a tough fight. Check the Superthread that Sweet keeps up, it is wonderful for getting information, she has done a great job with the thread. Glad to know that your wife is an excellent caregiver, let her know that you appreciate her. Make sure that you have some other people that can help so she doesn't get overwhelmed.0 -
Hi John
You are correct in saying that it is not easy but you can and you will make it through just like many of us here. I did work full time through all my treatments but I had NPC cancer it is a little different then what you have but the treatment is almost the same. There is nothing better then a good wife and good caregiver all in one so you are a very lucky man.
PS: Also welcome to the family here on CSN there are a lot of us who have been where you are now just starting and we stay here for one reason, to help people like you.
Take care
Hondo0 -
Stay positiveHondo said:Hi John
You are correct in saying that it is not easy but you can and you will make it through just like many of us here. I did work full time through all my treatments but I had NPC cancer it is a little different then what you have but the treatment is almost the same. There is nothing better then a good wife and good caregiver all in one so you are a very lucky man.
PS: Also welcome to the family here on CSN there are a lot of us who have been where you are now just starting and we stay here for one reason, to help people like you.
Take care
Hondo
Hi John for some it is very hard, for some it is easier. My mom's treatment did not involve chemo just radiation. She went through it fine without any major problems. She was able to take care of my 2 year old for few hours a day during and after treatment(she wanted to do it). Stay positive, positive attitude plays major part during your fight.0 -
5FUJohnyjackpot said:Thanks Skiffin
Thanks Skiffin andLinda.
Skiffin, you give me some hope that this will not be all that I fear.
Linda, best of luck. Perhaps we will be as lucky as Skiffin with the rad.
Is U of C unique in the radiation twice daily including admission to the hospital from Sunday night until Friday every other week for ten weeks? 5 Fu by infusion is given 24/7 during my stay's. Linda is 5Fu part of your therapy and have they spoken to you about it's shortage? They tell me that it is there first line of therapy concurent with the rad, but due to it's shortage they might have to switch to another chemo at this stage.
Good to hear from you both and best of luck!
John
The 5FU was administered via a pump that I wore for four days each of those three week sessions.
After I had the Cisplatin and Taxotere and at the end of that day. They would hook up a pump in a fanny pack and I'd wear it home (Monday). Late Thursday night it would empty and I'd shut and clamp it off.
That Friday I'd go in and they'd remove it, flushing the port.
The following Monday I'd go in for a Neulasta Injection....helps with blood cell reproduction.
During these three sessions the lump I had also completely dissolved and disappeared, it never showed on a scan since then.
I didn't have a PEG, don't see where you mentioned one. Some swear by them, some didn't have one.
For me, at around week four of the rads, I just swtiched over to numbing solutions for the throat. Drank water, Ensure Plus and a few sliced peaches in light syrup..they would slide down easily and I wanted to keep the muscles working.
I'd follow that up with a ground up percocet to minimize any after pain....that was my feeding regime' several times a day until around three to four weeks post rads. Then I switched bach to soft creamy foods.
Best,
John0 -
You are in a good placejoannaw81 said:Stay positive
Hi John for some it is very hard, for some it is easier. My mom's treatment did not involve chemo just radiation. She went through it fine without any major problems. She was able to take care of my 2 year old for few hours a day during and after treatment(she wanted to do it). Stay positive, positive attitude plays major part during your fight.
You are being treated in one of the top hospitals for H&N in this area. I am a patient there also and go back for scans next month. I had my dissection done there and they are top notch. You have a loving caregiver. The value of this can not be overstated as this is a big deal emotionally, you have someone at your side to cry and hold you, and help with the note taking and wound healing. Your employer is on board and understanding, takes a lot of stress off there. Really, today is Friday and you should be buying a lotto ticket!
Northwestern has a similar protocol for administering 5fu with hospital stays. I have a friend who went through that program and it sounds identical to your regime. I only had the dissection at U of Chicago and radiation and cisplatin else ware. I have been watching the news about the shortage of chemo drugs and apparently it's real. In side by side studies the 5fu has shown to be somewhat more effective than traditional chemo alone but not enough for you to lose any sleep over. If erbitux is an option don't hesitate to go for it.
You are young, strong, and have the best support possible. Other than having cancer you are in good health. Sounds idiotic but fitness s measured by three components, strength or the ability to push, pull, carry, or lift a heavy load, Flexibility which is the ability to bend and twist and stretch. and endurance which is the most important indicator of heart and lung efficiency. Seems to me if you can bike thirty miles you got all that covered. Within 2 years of your last treatment you will be back to this level but not before. This is not a cake walk so I'm asking you today to slow down and get yourself better incrementally. It's highly doable at a slow pace. Feel free to PM me with any University of Chicago questions.0 -
5FUJohnyjackpot said:Thanks Skiffin
Thanks Skiffin andLinda.
Skiffin, you give me some hope that this will not be all that I fear.
Linda, best of luck. Perhaps we will be as lucky as Skiffin with the rad.
Is U of C unique in the radiation twice daily including admission to the hospital from Sunday night until Friday every other week for ten weeks? 5 Fu by infusion is given 24/7 during my stay's. Linda is 5Fu part of your therapy and have they spoken to you about it's shortage? They tell me that it is there first line of therapy concurent with the rad, but due to it's shortage they might have to switch to another chemo at this stage.
Good to hear from you both and best of luck!
John
G'morning John,
No mention was ever made of a 5FU shortage, I finished (yeah)with the pump, same as Skiffin, m-f, last week. It was never an issue of the drug with me, it was the wearing of the fanny pack, I never seem to get proper sleep.
L0 -
Chemo Shortageratface said:You are in a good place
You are being treated in one of the top hospitals for H&N in this area. I am a patient there also and go back for scans next month. I had my dissection done there and they are top notch. You have a loving caregiver. The value of this can not be overstated as this is a big deal emotionally, you have someone at your side to cry and hold you, and help with the note taking and wound healing. Your employer is on board and understanding, takes a lot of stress off there. Really, today is Friday and you should be buying a lotto ticket!
Northwestern has a similar protocol for administering 5fu with hospital stays. I have a friend who went through that program and it sounds identical to your regime. I only had the dissection at U of Chicago and radiation and cisplatin else ware. I have been watching the news about the shortage of chemo drugs and apparently it's real. In side by side studies the 5fu has shown to be somewhat more effective than traditional chemo alone but not enough for you to lose any sleep over. If erbitux is an option don't hesitate to go for it.
You are young, strong, and have the best support possible. Other than having cancer you are in good health. Sounds idiotic but fitness s measured by three components, strength or the ability to push, pull, carry, or lift a heavy load, Flexibility which is the ability to bend and twist and stretch. and endurance which is the most important indicator of heart and lung efficiency. Seems to me if you can bike thirty miles you got all that covered. Within 2 years of your last treatment you will be back to this level but not before. This is not a cake walk so I'm asking you today to slow down and get yourself better incrementally. It's highly doable at a slow pace. Feel free to PM me with any University of Chicago questions.
I saw an article (news story) also....
What a typical bunch of crap too....they should lock some people up I swear.
There is apparently many companys (South Florida has at least one), that is apparently buying up surplus chemo drugs causing some for the shortgae, then selling them at a huge profit.
Sounds like price gouging big time to me...
They listed one drug that normally sells for $12, the profiteering company is selling it for $955....0 -
John, chemo shortage...Skiffin16 said:Chemo Shortage
I saw an article (news story) also....
What a typical bunch of crap too....they should lock some people up I swear.
There is apparently many companys (South Florida has at least one), that is apparently buying up surplus chemo drugs causing some for the shortgae, then selling them at a huge profit.
Sounds like price gouging big time to me...
They listed one drug that normally sells for $12, the profiteering company is selling it for $955....
I've been reading several articles about the chemo shortages here in NH where I live but didn't happen to read about some companies buying them to sell at a larger profit. Unfortunately nothing surprises me today when it comes to making a quick buck. These companies should be closed down immediately and any and all profits from this company should be put into cancer research and chemo drug manufacturing.
I know my oncologist said he wanted to put me on carboplatin and taxol but had to check first to see if he would be able to get the taxol as it was one of the drugs that were hard to get. Fortunately he said he would be able to get it for me.
Sorry, this subject just got me off on another one of my rants
0 -
CarboplatinGlenna M said:John, chemo shortage...
I've been reading several articles about the chemo shortages here in NH where I live but didn't happen to read about some companies buying them to sell at a larger profit. Unfortunately nothing surprises me today when it comes to making a quick buck. These companies should be closed down immediately and any and all profits from this company should be put into cancer research and chemo drug manufacturing.
I know my oncologist said he wanted to put me on carboplatin and taxol but had to check first to see if he would be able to get the taxol as it was one of the drugs that were hard to get. Fortunately he said he would be able to get it for me.
Sorry, this subject just got me off on another one of my rants
I had Carboplatin weekly during the concurrent phase om y treatment...it actually wasn't bad at all..relatively speaking of course...LOL.
Actually, the attached link mentions 5FU as being one of those chemo drugs like mentioned in the above posts;
Chemo Price Gouging
One company tried to sell 5FU at 20X the average price.....it mentions a recent report showing and average markup on the chemo drugs being 650 percent.
Thoughts with you Glenna.
John0 -
working through radiation
I did work all the way through radiation. I was very tired. Some of that had to do with the fact that my thyroid got toasted and failed during treatment. It took a few months, even post treatment to get my levels up enough to help me out. I was cold. Wore a coat in work, and booties over my shoes for a while. That's kind of funny now.
I made every effort to slow the rest of life down enough to accomodate the treatments. I didn't do much in the rest of my life except for routine maintenance things. As I was single at the time, that pretty much meant my life consisted of treatment, work and basic survival. It really wasn't that bad. Taking care of oneself is something most of us don't do enough of anyway.0 -
CarboplatinSkiffin16 said:Carboplatin
I had Carboplatin weekly during the concurrent phase om y treatment...it actually wasn't bad at all..relatively speaking of course...LOL.
Actually, the attached link mentions 5FU as being one of those chemo drugs like mentioned in the above posts;
Chemo Price Gouging
One company tried to sell 5FU at 20X the average price.....it mentions a recent report showing and average markup on the chemo drugs being 650 percent.
Thoughts with you Glenna.
John
I get my first infusion of carboplatin on Nov 2nd, apparently it will be every weeek/once a week for the entire time I have raduation.0 -
Another Story
I have read most of the posts on this site and there is a wealth of infomation regarding treatments and side effects. My story is as follows: I was diagnosed with HNC after finding a swollen lymph node in under my right jaw. It was not very obvious but I found it one day while rubbing my neck. I went to a ENT who did a CT and determined that the node should be removed. It was about 2.5cm which is pretty large. After determining it was SCC he ordered a PET and the found the primary tumor which was located at the base of the tongue but more on the side of the throat. It was relatively small but deadly.
I elected to have raditation via Tomo Thereapy which is supposed to be much easier on areas that you don't want radiated. I also chose to take 8 sessions of Erbitux instead of Cisplatin. I am now 5 weeks into the theraphy. I do not have a feeding tube, I can swallow, but my taste buds are fried, I do have a mild sore throat, especially in the AM but a little pain killer takes care of that but I only take one dose per day. I am living on Ensure and a small amount of solid food. My weight and blood work is holding up well.
So far and I realize I am no where near finished I am pretty happy with the treatment. I really encourage people to inquire about Erbitux, the only side effect I had was a rash that lasted a couple of weeks. The cost is outragious (my first session was $10,000) but it is covered my most private insurance and Medicare with a good supplemental policy.
I don't know if this information helps anyone but it is at least more ammunition in this war.
Regards, and best wishes.
John0 -
Tomo Thereapyjtl said:Another Story
I have read most of the posts on this site and there is a wealth of infomation regarding treatments and side effects. My story is as follows: I was diagnosed with HNC after finding a swollen lymph node in under my right jaw. It was not very obvious but I found it one day while rubbing my neck. I went to a ENT who did a CT and determined that the node should be removed. It was about 2.5cm which is pretty large. After determining it was SCC he ordered a PET and the found the primary tumor which was located at the base of the tongue but more on the side of the throat. It was relatively small but deadly.
I elected to have raditation via Tomo Thereapy which is supposed to be much easier on areas that you don't want radiated. I also chose to take 8 sessions of Erbitux instead of Cisplatin. I am now 5 weeks into the theraphy. I do not have a feeding tube, I can swallow, but my taste buds are fried, I do have a mild sore throat, especially in the AM but a little pain killer takes care of that but I only take one dose per day. I am living on Ensure and a small amount of solid food. My weight and blood work is holding up well.
So far and I realize I am no where near finished I am pretty happy with the treatment. I really encourage people to inquire about Erbitux, the only side effect I had was a rash that lasted a couple of weeks. The cost is outragious (my first session was $10,000) but it is covered my most private insurance and Medicare with a good supplemental policy.
I don't know if this information helps anyone but it is at least more ammunition in this war.
Regards, and best wishes.
John
Hi John I heard about Tomo Thereapy and from what I understand it does not affect or burn you up like the normal radiation does. I had radiation twice to my head and face and I tell you some days are not worth living because of all the side effects of the beam. I hope people in the future get and have a better way of taking radiation that does not destroy so much of them and leave some dignity in their life. I am very glad for you that you are doing so well with your treatment.
Take care my friend
Hondo0 -
Ground Hog DaySkiffin16 said:Radiation Days = Ground Hog's Day
The time that I went through radiation was like the movie, Ground Hog's Day..
It was the same routine, day, after day, after day, after day, etc......
JG
Hummm, might we call that Ground Hog Radiation as you are glowing with humor
:+))
Hondo0 -
Chemo ShortageGlenna M said:John, chemo shortage...
I've been reading several articles about the chemo shortages here in NH where I live but didn't happen to read about some companies buying them to sell at a larger profit. Unfortunately nothing surprises me today when it comes to making a quick buck. These companies should be closed down immediately and any and all profits from this company should be put into cancer research and chemo drug manufacturing.
I know my oncologist said he wanted to put me on carboplatin and taxol but had to check first to see if he would be able to get the taxol as it was one of the drugs that were hard to get. Fortunately he said he would be able to get it for me.
Sorry, this subject just got me off on another one of my rants
It is always the people who need it the most that pay the price of other people greed, someday all things will be made right and they will not have a place to hid and their money will not be any good.
Hondo0
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