scared and confused in Rochester :(!!!
Was dx Mar 29th with IVA SCC Tonsil primary with 1 Right lymph node involvement. T2N2M0. Had radical Tonsillectomy and Right neck resection. Had 38 lymph nodes removed with only one positive.. The margins were all negative but had focal extracapillary extension on the lymph node. Here's the dilemma.Being see an Wilmont Cancer center Rochester, NY Uof R. The tumor board agreed that since it was a HPV+ tumor and current trends in research show that HPV+ tumors respond well to tx and that my margins were negative with only one lymph node they only think I need radiation. However, since I'm a RN I know the importance of 2nd opinions. Went to Roswell Buffalo, NY and the doc there said he still sticks to the traditional approach chem (cisplatin and radiation). Not sure what to do; my surgeon insists that the growing trend in HPV+ tumors is less aggressive tx decreasing unnecessary chemo exposure; but not sure if this is too much of a gamble. Going to memorial Sloan Kettering on Friday. For 3rd opinion. Anyone on here have the same kind of HPV+ cancer with surgery and only radiation?? Scared and confused in Rochester!!!!
Charles
Comments
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Nope.
Hi, Charles;
Similar diagnosis, but with SCC at base-of-tongue. I am T2N2M0, with the N2 because of lymph node mets on both sides of the neck. Not sure why you are N2 if you only have lymph node involvement on one side of neck. HPV-16 positive (path report said I was "infested with it"). Based on a recommendation by Stanford, I am currently enjoying rads and cisplatin. I was NOT given the option of radiation only.
I am interested in what Sloan Kettering will advise you. My personal recommendation would be to go with the chemo as well. Frankly, it hasn't been more than I can handle (received my last infusion today). I would think that the peace of mind alone would make it worth it, knowing that you have done everything you can.
I will have 38 radiation treatments, over 7 and 1/2 weeks, with cisplatin infusion in week 1, week 4, and week 7. This allows for a two-week rest between each chemo treatment. Per Stanford, this is pretty much the gold standard of treatment.
Keep us informed. There is a lot of good information available here.
Deb0 -
Similar Diagnosis
Hi Charles,
Cancer unfortunately does discrimnate when it comes to age, and we all are too young for it.
I had a very similar diagnosis, right tonsil and one lymphnode. I'm 56 and in very good health (other than having had the cancer). My doctors approach was very aggressive. They're logic was that I'm young enough and healthy enough. They wanted to kill it with the intend of it not coming back.
I had no dissection as they left that as a last case scenarion because of the location of the lymphnode and carotid artery. They also felt that there was a good possibility that though either chemo and or radiation the tumor would reduce in size ot dissolve (which it did dissolve away completely).
My treatment was nine weeks (three week cycles) of Chemo (Cisplaten, Taxotere, and (5FU infusion pump). Then seven weeks concurrent Carboplaten and 35 daily rads.
The Chemo (at least to me) is nothing compared to the long term effects you get from the radiation. Which keeps on giving for a very long time if not for ever. But also if that's what it takes to kill the cancer, so be it..I'm alive.
The majority of after effects of the radiation I'm getting over. A large portion of my saliva has returned, a huge amount of my taste has also came back. I do still get dry at night, but nothing as before when I first finished the radiation.
Anyways, those are all decisions you need to make and investigate all of your options.
Good Luck, God Bless,
John0 -
Radiation is the worst of the twoSkiffin16 said:Similar Diagnosis
Hi Charles,
Cancer unfortunately does discrimnate when it comes to age, and we all are too young for it.
I had a very similar diagnosis, right tonsil and one lymphnode. I'm 56 and in very good health (other than having had the cancer). My doctors approach was very aggressive. They're logic was that I'm young enough and healthy enough. They wanted to kill it with the intend of it not coming back.
I had no dissection as they left that as a last case scenarion because of the location of the lymphnode and carotid artery. They also felt that there was a good possibility that though either chemo and or radiation the tumor would reduce in size ot dissolve (which it did dissolve away completely).
My treatment was nine weeks (three week cycles) of Chemo (Cisplaten, Taxotere, and (5FU infusion pump). Then seven weeks concurrent Carboplaten and 35 daily rads.
The Chemo (at least to me) is nothing compared to the long term effects you get from the radiation. Which keeps on giving for a very long time if not for ever. But also if that's what it takes to kill the cancer, so be it..I'm alive.
The majority of after effects of the radiation I'm getting over. A large portion of my saliva has returned, a huge amount of my taste has also came back. I do still get dry at night, but nothing as before when I first finished the radiation.
Anyways, those are all decisions you need to make and investigate all of your options.
Good Luck, God Bless,
John
In my opinion fight the beast once and be done with it. Your young and absent any other issues should tolerate the cisplatin with minimal side effects, the biggest being kidney damage as a remote possibility. They monitor that very close and will stop if it comes to that and I yet to hear of anyone having that problem. In my opnion the snergistic benefit outweigh the dangers. It's actually quite tolerable.
Your biggest concern should be radiation which is by far more damaging in the long run. It will probably cause jaw and tooth problems down the road, saliva issues, dry mouth, swallowing problems, facial wrinkles and an increased chance that the radiation will cause another cancer later in your life.
My point-- your concentration is aimed in the wrong direction.0 -
The 3 rd opinion.ratface said:Radiation is the worst of the two
In my opinion fight the beast once and be done with it. Your young and absent any other issues should tolerate the cisplatin with minimal side effects, the biggest being kidney damage as a remote possibility. They monitor that very close and will stop if it comes to that and I yet to hear of anyone having that problem. In my opnion the snergistic benefit outweigh the dangers. It's actually quite tolerable.
Your biggest concern should be radiation which is by far more damaging in the long run. It will probably cause jaw and tooth problems down the road, saliva issues, dry mouth, swallowing problems, facial wrinkles and an increased chance that the radiation will cause another cancer later in your life.
My point-- your concentration is aimed in the wrong direction.
I first wanted to say thank you to everyone for your timely responses and helpful advice. I understand the idea behind throwing everything at it; including the kitchen sink; it's just overwhelming when one Dr. is being conservative and says your young I don't want to expose you to unneeded side effects and the other says your young and strong; let's throw everything we can at this. I have my appointment at Memorial Sloan Kettering with a Medical Oncologist from the head and neck department on Friday; so I guess that will be the tie breaker. This is just absolutely bizarre; I feel like my whole life has been turned upside down and inside out. I envy the people who have spouses and kids that can help them get through this; I was suppose to get married last year and my fiance bailed. Did a lot of binge drinking on the weekends to get over the break-up; maybe that's what triggered the HPV+ to cause cancer? Who knows?? Now I think I'll never get married or have kids:(
Anyway, thanks for the advice; will let you know what they say on Friday!
Charles0 -
Stages of AcceptanceIrishgypsie said:The 3 rd opinion.
I first wanted to say thank you to everyone for your timely responses and helpful advice. I understand the idea behind throwing everything at it; including the kitchen sink; it's just overwhelming when one Dr. is being conservative and says your young I don't want to expose you to unneeded side effects and the other says your young and strong; let's throw everything we can at this. I have my appointment at Memorial Sloan Kettering with a Medical Oncologist from the head and neck department on Friday; so I guess that will be the tie breaker. This is just absolutely bizarre; I feel like my whole life has been turned upside down and inside out. I envy the people who have spouses and kids that can help them get through this; I was suppose to get married last year and my fiance bailed. Did a lot of binge drinking on the weekends to get over the break-up; maybe that's what triggered the HPV+ to cause cancer? Who knows?? Now I think I'll never get married or have kids:(
Anyway, thanks for the advice; will let you know what they say on Friday!
Charles
You are still early in the stages of acceptance. You'll get through this and realize that it is what it is....
Everyone goes through these feelings. Once you get under way and a treatment plan you start the fight. The fight for your life, all other things will be somewhat secondary (not counting faith, family and friends).
Stay positive and surround yourself with the positive. I didn't want to hear any negative stories or outcomes when I was going through it.
I understand, as do all of us, it's hard to deal with and accept, but you do. If yu have to go through this and have cancer, now is the best time ever. The technology, knowledge and experience is huge.
PS, you posted your photo, cool, glad to see you, LOL....
Best Luck, God Bless,
John0 -
In the same boatSkiffin16 said:Similar Diagnosis
Hi Charles,
Cancer unfortunately does discrimnate when it comes to age, and we all are too young for it.
I had a very similar diagnosis, right tonsil and one lymphnode. I'm 56 and in very good health (other than having had the cancer). My doctors approach was very aggressive. They're logic was that I'm young enough and healthy enough. They wanted to kill it with the intend of it not coming back.
I had no dissection as they left that as a last case scenarion because of the location of the lymphnode and carotid artery. They also felt that there was a good possibility that though either chemo and or radiation the tumor would reduce in size ot dissolve (which it did dissolve away completely).
My treatment was nine weeks (three week cycles) of Chemo (Cisplaten, Taxotere, and (5FU infusion pump). Then seven weeks concurrent Carboplaten and 35 daily rads.
The Chemo (at least to me) is nothing compared to the long term effects you get from the radiation. Which keeps on giving for a very long time if not for ever. But also if that's what it takes to kill the cancer, so be it..I'm alive.
The majority of after effects of the radiation I'm getting over. A large portion of my saliva has returned, a huge amount of my taste has also came back. I do still get dry at night, but nothing as before when I first finished the radiation.
Anyways, those are all decisions you need to make and investigate all of your options.
Good Luck, God Bless,
John
Charles, thanks for your post, I am also brand new to this forum. I have a question for John that you may be interested also. I was prepared for the treatment but it has been the recovery that has been the hardest for me to deal with so far.
Quickly, I had left tonsil cancer, stage 3, with left lymph node involvement, diagnosed 8-21-09. Recieved the same treatment as John, 3 rounds of chemo for 5 days, 4 days on a pump 24 hrs, and then 35 radiation sessions, last treatment was 12-30-09. Same drugs used. They did give me 2 shots daily of Ethyol prior to radiation, this was to help protect the salivary glands. Made it through the sessions with no major problems, other than the fatigue, nasueau, and basically zoned out experience. I had PEG tube inserted prior to treatment and was glad I did, used it almost exclusively for Jan and Feb. Had it removed in MArch '10.
John, I know we all are different and respond different, but my question is how long before things such as fatigue,, saliva, and eating real food return. I am still on about 70-80% liquid/soft food diet. Saliva is in small supply, there is some but hard to describe how much. Dry mouth most of the time. Use Biotene products with modest results. Dr's have said to give it 12-18 months, I am 4 months out and progress is amazingly slow. Any info on your experience would be a great benefit to me, and others I'm sure.
3 month PET was all negative, so there has been good news, it's just that my body still feels the same, hasn't got the good news yet I guess. I am a firefighter in Texas, was also wondering about my immune system and how being exposed to smoke was going to affect it. Thank you for your time and insight, this sight is really good, wish I had found it prior to treatment.
Kenny0 -
Just Medfdb06c said:In the same boat
Charles, thanks for your post, I am also brand new to this forum. I have a question for John that you may be interested also. I was prepared for the treatment but it has been the recovery that has been the hardest for me to deal with so far.
Quickly, I had left tonsil cancer, stage 3, with left lymph node involvement, diagnosed 8-21-09. Recieved the same treatment as John, 3 rounds of chemo for 5 days, 4 days on a pump 24 hrs, and then 35 radiation sessions, last treatment was 12-30-09. Same drugs used. They did give me 2 shots daily of Ethyol prior to radiation, this was to help protect the salivary glands. Made it through the sessions with no major problems, other than the fatigue, nasueau, and basically zoned out experience. I had PEG tube inserted prior to treatment and was glad I did, used it almost exclusively for Jan and Feb. Had it removed in MArch '10.
John, I know we all are different and respond different, but my question is how long before things such as fatigue,, saliva, and eating real food return. I am still on about 70-80% liquid/soft food diet. Saliva is in small supply, there is some but hard to describe how much. Dry mouth most of the time. Use Biotene products with modest results. Dr's have said to give it 12-18 months, I am 4 months out and progress is amazingly slow. Any info on your experience would be a great benefit to me, and others I'm sure.
3 month PET was all negative, so there has been good news, it's just that my body still feels the same, hasn't got the good news yet I guess. I am a firefighter in Texas, was also wondering about my immune system and how being exposed to smoke was going to affect it. Thank you for your time and insight, this sight is really good, wish I had found it prior to treatment.
Kenny
Hi Kenny,
I also had the Amifostine (Ethyol) about 15 minutes before each daily rad. I got threough 30 of those, couldn't handle the last few.
I am close to 11 months out (January 2009 - June 2009). This last month or so I have just started getting (or at least noticed that I have regained about 80 - 90% of my saliva. I can actually form clear liguid spit instead of the white foam, or worst, the thick sticky stuff that you can't even spit out, LOL.
It's not constant, but I can cause it on will. I don't need to sip water with each bite of food and can eat relatively normal again only taking water about 90% of the time like before.
That includes, crackers, chips, toast, etc....
Taste is about 80 - 90% back as well. It's not completely like it was before. I mean I can taste nearly everything and it tastes as before, just maybe not as intense. Some things lose flavor after a few bites, but not much actually. For me certain sweets have nearly no flavor, but that seems to be mainly Ice Cream for some reason.
My wife makes great soups, sauces, spegetti, etc. Those have seemed to take forever, not sure if those are back yet or not. She makes great chicken noodle soup, tends to taste like chicken fat broth now... The spegetti sauce has made improvements though.
Meats are a little less flavorable now, not completely, but not as good as before. Mostly beef and pork, but hamburger, sauasge, bacon, ham, hamburgers and cheeseburgers are still good to go, LOL. I think it's mostly like steaks and roasts, just tend to be less flavorable and drier.
I try things and if they still don't taste that good, I put them on the back burner for a few months.
As you'll figure out, this recovery seems to be in lengths of weeks and months, definitely not days....
Fatigue has improved a lot, but even though my blood has just came back into normal ranges this last month or so, I still tend to get tired easier than before. But I'm sure a lot of that has to do with not being as active as before, and also the summer heat and humidity is kicking in here in Florida.
Of course you being in Texas are well aware of heat and humidity, spent a few years there myself.
Anythin that I can offer information or my expereince, I would be glad to offer, as I'm sure anyone here will also.
Good Luck, God Bless,
John0 -
Captain CharlesIrishgypsie said:The 3 rd opinion.
I first wanted to say thank you to everyone for your timely responses and helpful advice. I understand the idea behind throwing everything at it; including the kitchen sink; it's just overwhelming when one Dr. is being conservative and says your young I don't want to expose you to unneeded side effects and the other says your young and strong; let's throw everything we can at this. I have my appointment at Memorial Sloan Kettering with a Medical Oncologist from the head and neck department on Friday; so I guess that will be the tie breaker. This is just absolutely bizarre; I feel like my whole life has been turned upside down and inside out. I envy the people who have spouses and kids that can help them get through this; I was suppose to get married last year and my fiance bailed. Did a lot of binge drinking on the weekends to get over the break-up; maybe that's what triggered the HPV+ to cause cancer? Who knows?? Now I think I'll never get married or have kids:(
Anyway, thanks for the advice; will let you know what they say on Friday!
Charles
I hope today's visit to Sloan Kettering will help you make your decision on treatment. I'm about seven weeks out from concurrent chemo (three infusions only-cisplatin) and 35 days of radiation treatments, and I feel better than some, and a little weaker than others.
I want to offer you my services with any help I can be on going through this alone, as that is what I did. I did have my ex deliver me and pick me up once from the hospital for a very short stay, but otherwise did my business myself. I was lucky my drive to treatments was about 35 minutes over city streets, and all of my appointments and infusions were in the same area. When I had questions or wanted company, I came on here. There are advantages to living alone to go through this, if you can make it to treatments and appointments o.k. I can, for example, faithfully recite most commericial dialogue in full from the Gieco gecko bits to Shatner's travel pitches. In short you will need to have to keep track of your own appointments, feed yourself regularly, stock up on dressing for your peg and other stuff when you go to the drugstore, and a few other little things, couple of big plastic bowls or buckets, paper towels, etc. If you need any thoughts on this subject please email me and I'll tell you what I've done. Also remember to rely on opionions and support from this board, we are all with you.
Hal0 -
RNHal61 said:Captain Charles
I hope today's visit to Sloan Kettering will help you make your decision on treatment. I'm about seven weeks out from concurrent chemo (three infusions only-cisplatin) and 35 days of radiation treatments, and I feel better than some, and a little weaker than others.
I want to offer you my services with any help I can be on going through this alone, as that is what I did. I did have my ex deliver me and pick me up once from the hospital for a very short stay, but otherwise did my business myself. I was lucky my drive to treatments was about 35 minutes over city streets, and all of my appointments and infusions were in the same area. When I had questions or wanted company, I came on here. There are advantages to living alone to go through this, if you can make it to treatments and appointments o.k. I can, for example, faithfully recite most commericial dialogue in full from the Gieco gecko bits to Shatner's travel pitches. In short you will need to have to keep track of your own appointments, feed yourself regularly, stock up on dressing for your peg and other stuff when you go to the drugstore, and a few other little things, couple of big plastic bowls or buckets, paper towels, etc. If you need any thoughts on this subject please email me and I'll tell you what I've done. Also remember to rely on opionions and support from this board, we are all with you.
Hal
Thanks Hal, being a registered nurse myself I'm not too worried about dressings, peg tubes, etc. Just worried about the mental health aspects of it and how it will effect the rest of my life. I realize that attitude is everything; but easier said than done. I pretty much feel I went from 38 too 58 in 6 weeks. Physically I feel 38 but mentally I feel like I'm much older now Oh' well I'm trying to keep a military aspect on it. I realize that I could have been killed over in Iraq/Afghanistan, etc; I realize soldiers die every day, get there legs, arms blown off, get burned from head to toe, etc. I will beat this; I'm a fighter. I appreciate all the nice people on this forum!
Charles0 -
KennySkiffin16 said:Just Me
Hi Kenny,
I also had the Amifostine (Ethyol) about 15 minutes before each daily rad. I got threough 30 of those, couldn't handle the last few.
I am close to 11 months out (January 2009 - June 2009). This last month or so I have just started getting (or at least noticed that I have regained about 80 - 90% of my saliva. I can actually form clear liguid spit instead of the white foam, or worst, the thick sticky stuff that you can't even spit out, LOL.
It's not constant, but I can cause it on will. I don't need to sip water with each bite of food and can eat relatively normal again only taking water about 90% of the time like before.
That includes, crackers, chips, toast, etc....
Taste is about 80 - 90% back as well. It's not completely like it was before. I mean I can taste nearly everything and it tastes as before, just maybe not as intense. Some things lose flavor after a few bites, but not much actually. For me certain sweets have nearly no flavor, but that seems to be mainly Ice Cream for some reason.
My wife makes great soups, sauces, spegetti, etc. Those have seemed to take forever, not sure if those are back yet or not. She makes great chicken noodle soup, tends to taste like chicken fat broth now... The spegetti sauce has made improvements though.
Meats are a little less flavorable now, not completely, but not as good as before. Mostly beef and pork, but hamburger, sauasge, bacon, ham, hamburgers and cheeseburgers are still good to go, LOL. I think it's mostly like steaks and roasts, just tend to be less flavorable and drier.
I try things and if they still don't taste that good, I put them on the back burner for a few months.
As you'll figure out, this recovery seems to be in lengths of weeks and months, definitely not days....
Fatigue has improved a lot, but even though my blood has just came back into normal ranges this last month or so, I still tend to get tired easier than before. But I'm sure a lot of that has to do with not being as active as before, and also the summer heat and humidity is kicking in here in Florida.
Of course you being in Texas are well aware of heat and humidity, spent a few years there myself.
Anythin that I can offer information or my expereince, I would be glad to offer, as I'm sure anyone here will also.
Good Luck, God Bless,
John
I'm same as you and John.....Left tonsil, stage 4...36 days of rads and 8 rounds of Cisplatin and 2 rounds of 5fu. Started treatment 2-09 and completed 6-6-09. Still very dry mouth and must take sips with all food. Taste buds are at about normal...even sweets. Fatigue comes and goes. Actually, today I felt like crap.....but tomorrow I'll be fine (I guess). It's one heck of a roller coaster. Neuropathy is still a problem in my feet and hands due to chemo. Ringing in my ears is also a problem. But I seem to have a good attitude.0 -
3rd opinionSkiffin16 said:Just Me
Hi Kenny,
I also had the Amifostine (Ethyol) about 15 minutes before each daily rad. I got threough 30 of those, couldn't handle the last few.
I am close to 11 months out (January 2009 - June 2009). This last month or so I have just started getting (or at least noticed that I have regained about 80 - 90% of my saliva. I can actually form clear liguid spit instead of the white foam, or worst, the thick sticky stuff that you can't even spit out, LOL.
It's not constant, but I can cause it on will. I don't need to sip water with each bite of food and can eat relatively normal again only taking water about 90% of the time like before.
That includes, crackers, chips, toast, etc....
Taste is about 80 - 90% back as well. It's not completely like it was before. I mean I can taste nearly everything and it tastes as before, just maybe not as intense. Some things lose flavor after a few bites, but not much actually. For me certain sweets have nearly no flavor, but that seems to be mainly Ice Cream for some reason.
My wife makes great soups, sauces, spegetti, etc. Those have seemed to take forever, not sure if those are back yet or not. She makes great chicken noodle soup, tends to taste like chicken fat broth now... The spegetti sauce has made improvements though.
Meats are a little less flavorable now, not completely, but not as good as before. Mostly beef and pork, but hamburger, sauasge, bacon, ham, hamburgers and cheeseburgers are still good to go, LOL. I think it's mostly like steaks and roasts, just tend to be less flavorable and drier.
I try things and if they still don't taste that good, I put them on the back burner for a few months.
As you'll figure out, this recovery seems to be in lengths of weeks and months, definitely not days....
Fatigue has improved a lot, but even though my blood has just came back into normal ranges this last month or so, I still tend to get tired easier than before. But I'm sure a lot of that has to do with not being as active as before, and also the summer heat and humidity is kicking in here in Florida.
Of course you being in Texas are well aware of heat and humidity, spent a few years there myself.
Anythin that I can offer information or my expereince, I would be glad to offer, as I'm sure anyone here will also.
Good Luck, God Bless,
John
Sloan Kettering- good idea, from my view on what you describe. I'm NPC, and treated in early-09 by a team connected (supposedly) to the U of Iowa- was told Chemo and Rads are the standard for H&N, though that might be an over-generalization. My Chemo delivery was Cisplatin and FU5, also, but with a little different delivery than any others on this forum. And, I was given nothing before any of my 20-place rad sessions, which does make the Amifostine noteworthy to me. For me, the Chemo was what made me the sickest, and played the larger role in the mouth side-effects, as the post-Chemo time was by far the worst; however, I do agree that the rads are what likely do the most damage, long term, to the mouth and H&N nerves.
The above advice in this thread does seem exceptional to me. You are at a critical point, with serious questions about your treatment. So- would suggest you take the advice about asking for an explanation as to why, for instance, Sloan Kettering deems the road for you is as they determine.
Of note: the Chemo is specifically to treat the whole body, which means it is used to not only poison the C where it is known/suspected to dwell, but also any places it may have migrated to. The rads are to zap it in specific areas, only. This said, I reckon it follows that the possibility of it having already spread to other areas should be a large part of the Chemo question for you.
Keep us informed, Charles, and
Believe
kcass0 -
Why ?
HI Charles,
I appreciate you dilemma. I would think the 1st opinions you had have relevance in that they must weight up the negative impact Chemo has on us Vs the benefits. If they view the benefits as minimal as in how effective the Chemo would actually be, then that may be the reason. You would need to ask them more about why. Personally, I find their view refreshing. Chemo is toxic, if you don't need it, don't do it.
My case, 2/3 Doctors said Rads only. One doctor said I need the Chemo. Guess which one ?? Yep, the Chemo Doctor. Made me wonder and still makes me wonder. I rushed in - in a panic, surgery 3 days after diagnosed. Chemo as soon as I was well enough. The more I read about Chemo, the less I like it. You may wish to read up a bit more on effectiveness and actual changes in outcomes (Absolute numbers NOT relative numbers) from using Chemo vs not. I now post here my belief that getting your body working properly as soon as you can makes the chances of all going well a much stronger probability as your body is the first line of defense. (If you are interested, check my expressions page...click on my name to the left <<)
I did end up getting Erbitux only. Supposedly a newer 'Target' Chemo. Had the face rash after a couple of weeks and then it went away.
7 months out now and doing much better after a rough run through the treatment for SCC Left Tonsil S1.
There will always be some doubt and confusion Charles, just when you do choose, do it with gusto and conviction.
Keeping healthy should be part of your plan.
Wishing you a good recovery.
Scambuster0 -
Well I am 39 years old andKent Cass said:3rd opinion
Sloan Kettering- good idea, from my view on what you describe. I'm NPC, and treated in early-09 by a team connected (supposedly) to the U of Iowa- was told Chemo and Rads are the standard for H&N, though that might be an over-generalization. My Chemo delivery was Cisplatin and FU5, also, but with a little different delivery than any others on this forum. And, I was given nothing before any of my 20-place rad sessions, which does make the Amifostine noteworthy to me. For me, the Chemo was what made me the sickest, and played the larger role in the mouth side-effects, as the post-Chemo time was by far the worst; however, I do agree that the rads are what likely do the most damage, long term, to the mouth and H&N nerves.
The above advice in this thread does seem exceptional to me. You are at a critical point, with serious questions about your treatment. So- would suggest you take the advice about asking for an explanation as to why, for instance, Sloan Kettering deems the road for you is as they determine.
Of note: the Chemo is specifically to treat the whole body, which means it is used to not only poison the C where it is known/suspected to dwell, but also any places it may have migrated to. The rads are to zap it in specific areas, only. This said, I reckon it follows that the possibility of it having already spread to other areas should be a large part of the Chemo question for you.
Keep us informed, Charles, and
Believe
kcass
Well I am 39 years old and was diagnosed with SCC unknown primary. I too live in Rochester and have been going to Wilmot. I had left neck dissection and tonsillectomy two weeks ago.
I would love to get in touch with you and talk. This is my first post. I'm new and not sure if there's a way to send you a private message or not. My name is Joel and I look forward to talking to you.0 -
welcome joelJoel4 said:Well I am 39 years old and
Well I am 39 years old and was diagnosed with SCC unknown primary. I too live in Rochester and have been going to Wilmot. I had left neck dissection and tonsillectomy two weeks ago.
I would love to get in touch with you and talk. This is my first post. I'm new and not sure if there's a way to send you a private message or not. My name is Joel and I look forward to talking to you.
sorry that you are in the boat with the rest of us, but we are in it together and there is a lot of great info and support here.
you can private email someone by adding them to your friend list by clicking on the little person icon by their name by their post. on the upper left hand side on the top you can click on CSN email. click on write a new message and hit the my friends arrow and hit the persons name that you want to write to. Or you can type it in there. Type your message and hit send.
any questions, just ask.0 -
Hey, CharlesIrishgypsie said:RN
Thanks Hal, being a registered nurse myself I'm not too worried about dressings, peg tubes, etc. Just worried about the mental health aspects of it and how it will effect the rest of my life. I realize that attitude is everything; but easier said than done. I pretty much feel I went from 38 too 58 in 6 weeks. Physically I feel 38 but mentally I feel like I'm much older now Oh' well I'm trying to keep a military aspect on it. I realize that I could have been killed over in Iraq/Afghanistan, etc; I realize soldiers die every day, get there legs, arms blown off, get burned from head to toe, etc. I will beat this; I'm a fighter. I appreciate all the nice people on this forum!
Charles
I had pretty much the same diagnosis as you. Like you, my cancer was HPV-derived.
FWIW -- and this is solely my experience, as of 2008 -- one doc on my treatment team at Johns Hopkins said Cisplatin was an option for me. If I chose to take it, it would improve my chances by 20 percent. I chose to take it.
Thanks to Emend (the anti-nausea med) it wasn't terribly difficult. It did cause significant hearing loss in my left ear -- though the audiologist admitted that my exposure to a lot of very loud gunfire and one too many Who concerts probably had something to do with it -- and I still have Cisplatin numbness in my fingertips.
But almost two years later, I'm alive and cancer-free. Is that thanks to Cisplatin, or were the rads responsible for my good prognosis? I don't know, but I'm glad I had Cisplatin.
--Jim in Delaware0 -
How to PMsweetblood22 said:welcome joel
sorry that you are in the boat with the rest of us, but we are in it together and there is a lot of great info and support here.
you can private email someone by adding them to your friend list by clicking on the little person icon by their name by their post. on the upper left hand side on the top you can click on CSN email. click on write a new message and hit the my friends arrow and hit the persons name that you want to write to. Or you can type it in there. Type your message and hit send.
any questions, just ask.
Hi Joel,
Sending a Private Message (PM) is as follows:
1 Click on the name of the person you want to PM (Under their Photo to the left <<)
2 Select them as a 'friend' (you have to then confirm or ADD the person)
3 Go back to the 'CSN Home' page (top left of this screen)
4 Click on # New Mails (under Blue header CONNECT)
5 Click new message (Recipients will be in the small drop down menu)
Type away........
Hope that gets you there.
Scam0 -
Then again, Charles.....delnative said:Hey, Charles
I had pretty much the same diagnosis as you. Like you, my cancer was HPV-derived.
FWIW -- and this is solely my experience, as of 2008 -- one doc on my treatment team at Johns Hopkins said Cisplatin was an option for me. If I chose to take it, it would improve my chances by 20 percent. I chose to take it.
Thanks to Emend (the anti-nausea med) it wasn't terribly difficult. It did cause significant hearing loss in my left ear -- though the audiologist admitted that my exposure to a lot of very loud gunfire and one too many Who concerts probably had something to do with it -- and I still have Cisplatin numbness in my fingertips.
But almost two years later, I'm alive and cancer-free. Is that thanks to Cisplatin, or were the rads responsible for my good prognosis? I don't know, but I'm glad I had Cisplatin.
--Jim in Delaware
I had 8 rounds of Cisplatin, and it turned me into a Bosox fan.
Just something else to weigh in on. 0 -
ThanksScambuster said:How to PM
Hi Joel,
Sending a Private Message (PM) is as follows:
1 Click on the name of the person you want to PM (Under their Photo to the left <<)
2 Select them as a 'friend' (you have to then confirm or ADD the person)
3 Go back to the 'CSN Home' page (top left of this screen)
4 Click on # New Mails (under Blue header CONNECT)
5 Click new message (Recipients will be in the small drop down menu)
Type away........
Hope that gets you there.
Scam</p>
OK guys I got this PM thing down now. Thanks for your help!0 -
Kudos for people that have alot of money and resources!!Joel4 said:Thanks
OK guys I got this PM thing down now. Thanks for your help!
Well, Went to Memorial-Sloan Kettering (NYC) on Friday for 3rd opinion. It is a great huge hospital. I recommend it highly if your local hospitals in the area do not provide top Radiology Oncologist; since the surgery and medicine part is less critical in my book. What i mean by this is Cisplatin can be given and monitored anywhere; yes it is important to have a good surgeon; but I think that having the latest radiology technology is the essential part of out treatment! Basically, the Medical oncologist said there was no reason for me to put my self under the stress of trying to relocate to the city for 7 weeks since I'm not going to be doing any clinical trials and I have a good radiology Oncologist in Rochester!
I'm amazed just thinking that people move themselves to another city for 8 weeks. I guess I could do it if I was married, had a girlfriend that could help; but the isolation alone plus having to deal with the stress of driving too and from treatments 5 days a week in a stressful city would be too much; especially being in pain, nauseated, and depress ( I would want to be home in my own bed)!! This diagnosis is depressing enough; I wouldn't be able to handle being isolated from my friends who I rely on for support!
Having said that, Yes Memorial Sloan said I should take the cisplatin too be safe. He agreed that my surgeon may be correct that I could be cancer free right now after surgery and that all I need is radiation to be safe. He also agreed that in the future hopefully trial studies will prove that less doses of radiation and cisplatin will be needed for HPV+ tumors; but right now it's too early! DAMMIT WHY COULDN"T I HAVE GOTTEN THIS 10 YEARS FROM NOW WHEN THERE IS MORE RESEARCH ON THE SUBJECT!!!!
The thing that upsets me at 2nd and 3rd opinions is that they don't present your case at a tumor board like your the treating hospital does. Wilmont (UofR) had a tumor board that met twice on my case and agreed both times that I only needed radiation. FYI for newbies: Tumor board= Surgeon, Radiology, and Medical oncologist;a team approach all deciding in a meeting what is best. Memorial Sloan was only 1 medical oncologist opinion who gives chemo; so of course he is going to say I think you should have chemo! At both opinions Roswell and Memorial Sloan I asked if the doctors could call my Rochester doctor and ask why they felt so strongly that I only needed radiation. They both said well he can call us if he wants too; I'll fax my opinion. What a bunch of crap!! It's all about money and I feel they don't care since I won't be being treated at that hospital!
Getting these 2nd and 3rd opinions was so frustrating!! I just feel like my body and my life is a big dam/sinking ship with HOLES and I'm frantically tying to find ways to plug the holes!
I guess I will be just another experiment/statistic in the oral cancer journals!!0 -
Basically...Irishgypsie said:Kudos for people that have alot of money and resources!!
Well, Went to Memorial-Sloan Kettering (NYC) on Friday for 3rd opinion. It is a great huge hospital. I recommend it highly if your local hospitals in the area do not provide top Radiology Oncologist; since the surgery and medicine part is less critical in my book. What i mean by this is Cisplatin can be given and monitored anywhere; yes it is important to have a good surgeon; but I think that having the latest radiology technology is the essential part of out treatment! Basically, the Medical oncologist said there was no reason for me to put my self under the stress of trying to relocate to the city for 7 weeks since I'm not going to be doing any clinical trials and I have a good radiology Oncologist in Rochester!
I'm amazed just thinking that people move themselves to another city for 8 weeks. I guess I could do it if I was married, had a girlfriend that could help; but the isolation alone plus having to deal with the stress of driving too and from treatments 5 days a week in a stressful city would be too much; especially being in pain, nauseated, and depress ( I would want to be home in my own bed)!! This diagnosis is depressing enough; I wouldn't be able to handle being isolated from my friends who I rely on for support!
Having said that, Yes Memorial Sloan said I should take the cisplatin too be safe. He agreed that my surgeon may be correct that I could be cancer free right now after surgery and that all I need is radiation to be safe. He also agreed that in the future hopefully trial studies will prove that less doses of radiation and cisplatin will be needed for HPV+ tumors; but right now it's too early! DAMMIT WHY COULDN"T I HAVE GOTTEN THIS 10 YEARS FROM NOW WHEN THERE IS MORE RESEARCH ON THE SUBJECT!!!!
The thing that upsets me at 2nd and 3rd opinions is that they don't present your case at a tumor board like your the treating hospital does. Wilmont (UofR) had a tumor board that met twice on my case and agreed both times that I only needed radiation. FYI for newbies: Tumor board= Surgeon, Radiology, and Medical oncologist;a team approach all deciding in a meeting what is best. Memorial Sloan was only 1 medical oncologist opinion who gives chemo; so of course he is going to say I think you should have chemo! At both opinions Roswell and Memorial Sloan I asked if the doctors could call my Rochester doctor and ask why they felt so strongly that I only needed radiation. They both said well he can call us if he wants too; I'll fax my opinion. What a bunch of crap!! It's all about money and I feel they don't care since I won't be being treated at that hospital!
Getting these 2nd and 3rd opinions was so frustrating!! I just feel like my body and my life is a big dam/sinking ship with HOLES and I'm frantically tying to find ways to plug the holes!
I guess I will be just another experiment/statistic in the oral cancer journals!!
We are ALL just experiments/statistics in the oral cancer journals. I believe you would be wise to go for the cisplatin as well as the radiation. The decision is yours. Sometimes we forget that it is all just a numbers game, and the doctors don't have the answers. The choice is ours, rather than theirs. Do you feel lucky?
Deb0
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