Need info on suggested treatment - Base of tongue - 1 lymph node - Stage III
I am 3 months out from my treaments, but I have some questions. I went to the MSTI Clinic in Boise Idaho (great people, great experience) but I keep reading where many people seem to have had two things I did not have (if I am correct). So my question is what do you all think??
I was diagnosed with Stage III base of tongue primary tumor with 1 lymph node involved (my left side).
The treatments were: loading dose of Erbitux ...then I began radiatino (37 treatments of radiation) ...each week on Thursday I would have another round of Erbitux (I had a total of 6 Erbitux treatments).
My reaction to the Erbitux was quite severe. I had "acne" from the top of my head all the way down my face and back. Very painful. At one point I had to stop the Erbitux for a week.
The discussion of surgery to remove the lypmh node was never really talked about, just that if the lymph node shrinks, that is good enough. The talk of tongue surgery was spoken about but was not really an option unless radiation did not shrink the tumor.
I see so many people who had surgery to remove lymph node(s) and I see people who had chemotherapy with three neamed drugs I never had.
I was told the Erbitux is a form of chemo ...but I wonder if I understood it correctly. Does Erbitux track down and kill the cancer cells throughout the body or does Erbitux just sensitize the cancer cells for the radiation to better kill them. My concern was if I have cancer cells say in my legs, or lungs and I was only getting radiation in the neck area...how do we kill the cancer cells roaming around my body? One doctor told me Erbitux does kill cancer cells...but I could not find that in my research ...it seemed to say Erbitux just "sensitized" the cancer cells and kept them from splitting / spreading.
And so all will know, my cancer was HPV related. I began to feel bad in August 2011 and was diagnosed October 2011 and began treatments November 2011.
I go for my first PET / CT scan of my neck and entire body May 7th 2012 (just around the corner). Keep me in your prayers on that as well if I may ask.
Thank you all....I love this site and I appreaciate all comments!
Tim / McCall, Idaho
Comments
-
Pat pretty much summed up
Pat pretty much summed up Erbitux. I actually had same treatment as you, loading dose and weekly thereafter during the rads. Unlike Pat and yourself I did not have the severe reaction but I did have acne like a teenager for a couple of weeks. Antibotics and some topical hydrocortisone took care of it but it was not fun having the mask on during rads with the irration. My med onc nurses refer to Erbitux as a "biological" not a "chemo" drug. It is selective in that it only targets certain cells instead of being somewhat indiscriminate. Only time will tell if it is as effective as the platinum drugs, but there is a head to head trial going on. In my case I chose Erbitux because I was concerned about the long term consequences of Cisplatin, by long term I mean many years out, although at my age maybe that was too optimistic. I can just about guarantee that your scan next week will be perfect.
John0 -
Thank you for your responseditto1 said:Hey Tim
Do not have answers for your question, but Im sure someone on the site will. Just thought I would let you know I can handle the prayer part. Consider it done, I will be looking for the answers as well because knowledge is power. Good Luck
Ditto1.
Thank you for those prayers. I keep a list by my bedside of people and things to pray for ..and it grows more each week with my new friends on this board.
Those prayers mean the world to me.0 -
you diid fine Tim
thisbis one of a number of approved treatments for the disease and stage that u had. Erbitux is not technically chemotherapy, that is correct. It is an epithelial growth factor inhibitor. It works well to shrink SCC and as such is increasingly used as an adjunct to traditional rads. I also had a huge reaction to erbitux. I took 14 out of a planned 18 weeks. It had to be stopped finally, as my face was sloughing off. Do your follow up like recommended, and enjoy feeling better.
Pat
PS. one of the big problems with scc is that no chemotherapy has yet bee found that will cure it. Fortunately, for most of us anyway, throat cancer tends to spread locally, not by distant metastases. If it escapes to elsewhere in the body, it takes a huge chunk of luck to get a cure.0 -
Thanksjtl said:Pat pretty much summed up
Pat pretty much summed up Erbitux. I actually had same treatment as you, loading dose and weekly thereafter during the rads. Unlike Pat and yourself I did not have the severe reaction but I did have acne like a teenager for a couple of weeks. Antibotics and some topical hydrocortisone took care of it but it was not fun having the mask on during rads with the irration. My med onc nurses refer to Erbitux as a "biological" not a "chemo" drug. It is selective in that it only targets certain cells instead of being somewhat indiscriminate. Only time will tell if it is as effective as the platinum drugs, but there is a head to head trial going on. In my case I chose Erbitux because I was concerned about the long term consequences of Cisplatin, by long term I mean many years out, although at my age maybe that was too optimistic. I can just about guarantee that your scan next week will be perfect.
John
Thanks guys.
I thought the same thing....I still wonder why not traditional chemo? Not that I wanted to go through any more than I did ...but just in case there were a free racial running around somewhere ...you know what I mean?
If the cancer makde it to my lymph node...I kind of felt we should have done the traidtional chemo and not just the Erbitux bc of that very reason.
Well, I get my post treatment scan on May 7th ....jtl ...I like your optimism
Anybody else have a comment ...please continue to post. They say my cancer has a 30 - 50% chance of coming back in less than 2 years. Just seems high to me.
I'm eatintg better and taking vitamin e as suggested by my onc ..he said 1,000 mg a day would be a good place to start with the vitamin e.
Thanks my friends.
Tim / McCall, Idaho0 -
Percentages...Tim6003 said:Thanks
Thanks guys.
I thought the same thing....I still wonder why not traditional chemo? Not that I wanted to go through any more than I did ...but just in case there were a free racial running around somewhere ...you know what I mean?
If the cancer makde it to my lymph node...I kind of felt we should have done the traidtional chemo and not just the Erbitux bc of that very reason.
Well, I get my post treatment scan on May 7th ....jtl ...I like your optimism
Anybody else have a comment ...please continue to post. They say my cancer has a 30 - 50% chance of coming back in less than 2 years. Just seems high to me.
I'm eatintg better and taking vitamin e as suggested by my onc ..he said 1,000 mg a day would be a good place to start with the vitamin e.
Thanks my friends.
Tim / McCall, Idaho
I'm not really a percentages guy....
Reason being, there are just way to many variables and factors that can influence the results in favor of an agenda.
Everyone is different going in, age, genetics, overall health, diet and bad habit history, etc....
A percentage just lumps everyone into one big bucket. Most of the studies were several years ago, and HPV wasn't as big a factor in the equation at that time either.
I am one of those that was STGIII Tonsils with a lymphnode, and also HPV+.
I too had the three big chemo drugs Cisplatin, Taxotere and 5FU...also adding in weekly Carboplatin during concurrent radiation.
I haven't really heard reference to supplementing Vitamin E before.
Best,
John0 -
I really doubt if the chanceTim6003 said:Thanks
Thanks guys.
I thought the same thing....I still wonder why not traditional chemo? Not that I wanted to go through any more than I did ...but just in case there were a free racial running around somewhere ...you know what I mean?
If the cancer makde it to my lymph node...I kind of felt we should have done the traidtional chemo and not just the Erbitux bc of that very reason.
Well, I get my post treatment scan on May 7th ....jtl ...I like your optimism
Anybody else have a comment ...please continue to post. They say my cancer has a 30 - 50% chance of coming back in less than 2 years. Just seems high to me.
I'm eatintg better and taking vitamin e as suggested by my onc ..he said 1,000 mg a day would be a good place to start with the vitamin e.
Thanks my friends.
Tim / McCall, Idaho
I really doubt if the chance is 30-50% in 2 years. I did not have my scc on the tonsil(s) but regardless the disease is the same. My ENT doc who has seen a lot of this thinks this is an easy cancer to beat, but the cure is one of the worst. He thinks if someone did not have a "mass" or large tumor it is even curable. You will be fine, just enjoy life and don't worry too much. Don't fret about the type of chemo, Erbitux is cutting edge without the potential long term damage to major organs. If the new head to head trial is successful it may well be the new "gold standard", whatever that really means. In any event even rads alone may have taken care of the problem since it was local. I had melanoma 40 years ago and only had surgery, no chemo. Unless the cancer has metastasized maybe the chemo is not needed although big pharma may convince people otherwise.
John0 -
Surgery
My husband had stage 4 base of tongue with two lymph nodes involved. He did not have surgery as the base of tongue helps keep the food and drink from going down the airway and directs it to the esophogus. I am not a doctor but this is what our ENT told us. If the tumor passes midline of the tongue they do not like to do surgery as it increase the aspiration chances. We were told the same thing about the lyph nodes. Luckily the lymph nodes were the first to shrink. Jim finished treatment August of last year. First PET was not clear but Rad Doc said not to worry. 6 months PET showed no cancer in tongue or lymph nodes, they won't give all clear because of a very small spot on the lung but we are happy the tumor is clear. Next PET is in 3 weeks
Praying you get an all clear the first PET out from treatment.
Blessings
Debbie0 -
Spread
Just to add to what others have said, with just 1 node involved chances of spread elsewhere are apparently next to nothing. H&N generally spreads locally first and I was told that it would have to be fairly widespread in your nodes before going anywhere else.
This is probably why they did not think traditional chemo necessary at this stage. Although I don't know why surgery for the node wasn't considered?
All the very best for the scan.
Leo0 -
Thanks to all
Thank you all for responding ....It is so great to hear people with experience. To all a special thanks...and to the ones who offered prayers...thank you too for that. We are a praying family and take those prayers to heart.
My wife has been unreal in her determination to take care of me along with our five chidren...I trul don't konw how she has done it .....
May 7th is my first follow-up PET ....I will be sure and post resutls if you all wish...thank you again.
Tim & Jennifer / Idaho0 -
Good LuckTim6003 said:Thanks to all
Thank you all for responding ....It is so great to hear people with experience. To all a special thanks...and to the ones who offered prayers...thank you too for that. We are a praying family and take those prayers to heart.
My wife has been unreal in her determination to take care of me along with our five chidren...I trul don't konw how she has done it .....
May 7th is my first follow-up PET ....I will be sure and post resutls if you all wish...thank you again.
Tim & Jennifer / Idaho
With the PET scan Tim, hoping its good news coming your way
All the best
Leo0 -
Will be tucking you in my pocket on the 7th.....Tim6003 said:Thanks to all
Thank you all for responding ....It is so great to hear people with experience. To all a special thanks...and to the ones who offered prayers...thank you too for that. We are a praying family and take those prayers to heart.
My wife has been unreal in her determination to take care of me along with our five chidren...I trul don't konw how she has done it .....
May 7th is my first follow-up PET ....I will be sure and post resutls if you all wish...thank you again.
Tim & Jennifer / Idaho
a pocket filled with prayers and positive thoughts on your PET.........
p
PS....I consider Idahoians as my neighbors, since I'm in Montana and just across the border.....so howdy, neighbor0 -
Hi Neighborphrannie51 said:Will be tucking you in my pocket on the 7th.....
a pocket filled with prayers and positive thoughts on your PET.........
p
PS....I consider Idahoians as my neighbors, since I'm in Montana and just across the border.....so howdy, neighbor
Thank you Phrannie ......
I appreciate those prayers. And hello to you to neighbor ...we live north of Boise 109 miles ...McCall ....
Tim0 -
Hey all,
Looking at Jim & I's post by Debbie above ...I can see why I was not really offered surgery ...but after really taking a good look at everything while recovering from my treatments....here is what I was wondering / thinking ....
I had stage III base of tongue - HPV 16 positive ..no surgery ...Radiation and Erbitux treatments only. (I still think I should have had traditional chemo looking back) ...
..I think I should ask the Doctor when I see him (on the 7th for a full body PET scan and a CT scan of the neck) why should I not have surgery to remove the one lymph node. The lymph node has now shrunk to almost nothing (I can still feel it but it is very small compared to what it was which was 3 cm in size). The docs say this is most likely scar tissue..
...anyway ....why shouldn't I ask to have the lymph node removed????
I also am encouraged by the post above which states that my cancer and stage was highly likely to NOT have spread any further (of course the PET / CT scan will show us anything) ....
. So bottom line is I think traditional chemo and surgery to remove the lymph node should have been done and as of now at least still have the surgery to remove the lymph node ...
but to be honest ...you all know better than anyone I am probably reacting that way bc I just want the cancer out ..and I do not want it to come bace.
The ENT in Boise did tell me the chance of recurrence was 30-50% ..but he also keeps saying my 5 year survival rate is 50% yet I keep reading a stage III local mts with one lymph node that is HPV positive my 5 year survival rate increases to 60% (one of the MSTI clinic docs even said 67% ..but I can't find that stat anywhere).
Okay all ..thanks for your feedback.. The 7th is fast approaching and boy I tell you we have so many of our church friends over the years we have met (I moved every two years for 10 years while employed with Hilton Hotels, so we have lots of church's we attended)who have put us on their church prayer lists ......so I'm looking for a good news. But no matter what ..I have to say I am a blessed man with the family I have.
Thanks again all ...most of you have no idea how helpful you have been to me ..0 -
Hi Debbiejim and i said:Surgery
My husband had stage 4 base of tongue with two lymph nodes involved. He did not have surgery as the base of tongue helps keep the food and drink from going down the airway and directs it to the esophogus. I am not a doctor but this is what our ENT told us. If the tumor passes midline of the tongue they do not like to do surgery as it increase the aspiration chances. We were told the same thing about the lyph nodes. Luckily the lymph nodes were the first to shrink. Jim finished treatment August of last year. First PET was not clear but Rad Doc said not to worry. 6 months PET showed no cancer in tongue or lymph nodes, they won't give all clear because of a very small spot on the lung but we are happy the tumor is clear. Next PET is in 3 weeks
Praying you get an all clear the first PET out from treatment.
Blessings
Debbie
Keep me posted on that spot on your husbands lung .....I have added him to my prayer list as well. I am assuming his name is Jim.
I also want to tell you how encouraged I was with your husbands PET scan since he was Stage IV and i was Stage III. May I ask if your husbands cancer was HPV related ???
Thank you Debbie. Tell your husband I said hello.
Tim0 -
PercentagesTim6003 said:Hey all,
Looking at Jim & I's post by Debbie above ...I can see why I was not really offered surgery ...but after really taking a good look at everything while recovering from my treatments....here is what I was wondering / thinking ....
I had stage III base of tongue - HPV 16 positive ..no surgery ...Radiation and Erbitux treatments only. (I still think I should have had traditional chemo looking back) ...
..I think I should ask the Doctor when I see him (on the 7th for a full body PET scan and a CT scan of the neck) why should I not have surgery to remove the one lymph node. The lymph node has now shrunk to almost nothing (I can still feel it but it is very small compared to what it was which was 3 cm in size). The docs say this is most likely scar tissue..
...anyway ....why shouldn't I ask to have the lymph node removed????
I also am encouraged by the post above which states that my cancer and stage was highly likely to NOT have spread any further (of course the PET / CT scan will show us anything) ....
. So bottom line is I think traditional chemo and surgery to remove the lymph node should have been done and as of now at least still have the surgery to remove the lymph node ...
but to be honest ...you all know better than anyone I am probably reacting that way bc I just want the cancer out ..and I do not want it to come bace.
The ENT in Boise did tell me the chance of recurrence was 30-50% ..but he also keeps saying my 5 year survival rate is 50% yet I keep reading a stage III local mts with one lymph node that is HPV positive my 5 year survival rate increases to 60% (one of the MSTI clinic docs even said 67% ..but I can't find that stat anywhere).
Okay all ..thanks for your feedback.. The 7th is fast approaching and boy I tell you we have so many of our church friends over the years we have met (I moved every two years for 10 years while employed with Hilton Hotels, so we have lots of church's we attended)who have put us on their church prayer lists ......so I'm looking for a good news. But no matter what ..I have to say I am a blessed man with the family I have.
Thanks again all ...most of you have no idea how helpful you have been to me ..
Like skiffin said on another thread - I'm not a percentages guy either. Those figures are just figures but we are all different and all individuals. People beat tiny odds, it's all subjective and doesn't take into account age, strength (both mental and physical), motivation etc.
If you were to look at a percentage for a particular cancer and stage it lumps you in with all the 90 year old people who get it when they are very frail. I would forget about those kinds of numbers Tim, those are for scientific studies not people; just believe and you will beat it.
Tell your ENT to keep his 50% and flush it down the toilet because that's what's going to happen.
All the very best for the scan
Leo0 -
I also had an infected lymphTim6003 said:Hey all,
Looking at Jim & I's post by Debbie above ...I can see why I was not really offered surgery ...but after really taking a good look at everything while recovering from my treatments....here is what I was wondering / thinking ....
I had stage III base of tongue - HPV 16 positive ..no surgery ...Radiation and Erbitux treatments only. (I still think I should have had traditional chemo looking back) ...
..I think I should ask the Doctor when I see him (on the 7th for a full body PET scan and a CT scan of the neck) why should I not have surgery to remove the one lymph node. The lymph node has now shrunk to almost nothing (I can still feel it but it is very small compared to what it was which was 3 cm in size). The docs say this is most likely scar tissue..
...anyway ....why shouldn't I ask to have the lymph node removed????
I also am encouraged by the post above which states that my cancer and stage was highly likely to NOT have spread any further (of course the PET / CT scan will show us anything) ....
. So bottom line is I think traditional chemo and surgery to remove the lymph node should have been done and as of now at least still have the surgery to remove the lymph node ...
but to be honest ...you all know better than anyone I am probably reacting that way bc I just want the cancer out ..and I do not want it to come bace.
The ENT in Boise did tell me the chance of recurrence was 30-50% ..but he also keeps saying my 5 year survival rate is 50% yet I keep reading a stage III local mts with one lymph node that is HPV positive my 5 year survival rate increases to 60% (one of the MSTI clinic docs even said 67% ..but I can't find that stat anywhere).
Okay all ..thanks for your feedback.. The 7th is fast approaching and boy I tell you we have so many of our church friends over the years we have met (I moved every two years for 10 years while employed with Hilton Hotels, so we have lots of church's we attended)who have put us on their church prayer lists ......so I'm looking for a good news. But no matter what ..I have to say I am a blessed man with the family I have.
Thanks again all ...most of you have no idea how helpful you have been to me ..
I also had an infected lymph node, in fact that is how I discovered that I had cancer. There were no other symptoms and the primary was just a small spot on the back of my throat. My lymph node (2.5 cm) was removed in order to do a biopsy since my ENT felt that a needle biopsy would be too inconclusive. Since he only removed the suspect node I don't know for sure if that was only one that had cancer but he did not see anything else that looked suspicious. At this point I would wonder if removing the remains of your affected lymph node would be necessary. Assuming your treatment was successful, and you have no reason to believe it was not, the cancer should be gone so why have invasive surgery.0 -
Because you asked me directlyLeoS2323 said:Percentages
Like skiffin said on another thread - I'm not a percentages guy either. Those figures are just figures but we are all different and all individuals. People beat tiny odds, it's all subjective and doesn't take into account age, strength (both mental and physical), motivation etc.
If you were to look at a percentage for a particular cancer and stage it lumps you in with all the 90 year old people who get it when they are very frail. I would forget about those kinds of numbers Tim, those are for scientific studies not people; just believe and you will beat it.
Tell your ENT to keep his 50% and flush it down the toilet because that's what's going to happen.
All the very best for the scan
Leo
Hi Tim, this may be a little confusing to readers because you asked me about this post in the, "Bride to be Diet" Post, which currently appears right below this one. You asked me a poignant question regarding your treatment plan and surgery. I originally chose not to comment in this thread because I strongly disagree with a wait and see attitude by doctors regarding neck dissections. This is a support forum and you were getting some great support. But you persisted and asked me directly, so here it goes, It's strictly my personal opinion, and I'm just an average guy in a basement in Chicago. For comparison's sake our diagnosis and staging were somewhat similar with the exception that your primary tumor was much bigger and you were HPV positive. I was treated at a small local hospital with an exceptional onco radiation doctor and chemo doctor. My ENT left much to be desired and I eventually moved myself to the University of Chicago seeking a neck dissection against the advice of my original ENT. My decision was based on my own personal research, which pretty much boiled down to the fact, that the wait and see attitude, is a 1 out of 4 roll of the dice, for recurrence, from something missed in a lymph node. It gets complicated, but there is something known as "skip" metastasis, where the cancer can actually skip over lymph glands and wind up further down the road. My personal conclusion was that head and neck cancer, with lymph node involvement has a 22% chance of being missed in the lymph node after chemo and radiation. I simply could not take that chance, my personal risk tolerance would not allow it. I self referred myself to the University of Chicago and got a neck dissection where they removed seven lymph nodes. The neck dissection itself has it's own set of risks attached which must be weighed. The end result of this is that all the nodes came back clear and the pathology was negative. Was there one cancer cell in there, perhaps? Did the radiation and chemo do their job, probably. Did I need the neck dissection, probably not. Tim, it really is your call, and generally the doctors get it right.
The erbitux decision is an interesting one. I challenged my chemo doctor on her prescription of cisplatin. I thought so highly of erbitux as the new gold standard that I requested she use it. She flat out denied me, saying she had gone back and discussed it with her colleagues and cisplatin was still the gold standard and I backed down. Personally, I think it will emerge as the new gold standard, (at least for HPV derived cases) and your doctors are ahead of the curve. Best of luck in your decision making.0 -
Dissectionjtl said:I also had an infected lymph
I also had an infected lymph node, in fact that is how I discovered that I had cancer. There were no other symptoms and the primary was just a small spot on the back of my throat. My lymph node (2.5 cm) was removed in order to do a biopsy since my ENT felt that a needle biopsy would be too inconclusive. Since he only removed the suspect node I don't know for sure if that was only one that had cancer but he did not see anything else that looked suspicious. At this point I would wonder if removing the remains of your affected lymph node would be necessary. Assuming your treatment was successful, and you have no reason to believe it was not, the cancer should be gone so why have invasive surgery.
I have just had one less than 2 weeks ago - selective, 35 nodes all clean. It's no walk in the park, but I had a tonsil out and a tongue biopsy at the same time and those are significantly more painful.
In my case the aim of the dissection was to try to avoid treatment. My MEC first turned up in a node in my neck. It was removed in the mistaken belief it was a cyst, so instead of giving me radiotherapy to where it was he took all the rest out and as it was all clean I don't need treatment.
So that was a good decision for me. Dissection seems a good plan to me in general though - it takes away the highway to the rest of our body for an HNC, cleans away anything thats in there and we can live without one side.
My feeling is surgery, even quite major surgery if possible is better than treatment. Not everyone is fit for major surgery though - mine took 6 hours which is a lot of strain on the body and heart, but I'm only 34 and in reasonable shape.
I think anyone who is deemed fit for surgery though should be given the option of dissection ahead of rads to the nodes. I think it's safer personally, but again everyone's circumstances are different. For example in Tim's case he has already had the treatment.
Out of interest ratface why wouldn't your other ENT give you a dissection?
All the best
Leo0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.8K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 397 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 792 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 61 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 539 Sarcoma
- 730 Skin Cancer
- 653 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards