scared and confused in Rochester :(!!!

Skiffin16

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!!

Combination Theory
I agree with DLewis...

If you look on here, and read the posts of the SURVIVORS on here, how many just had one type of treatment, not many that I can think of from memory.

Like also mentioned, it's ultimately your choice and your decisions. But for me, I want the very best course of treatment, the one that will hit the cancer the hardest and that won't kill me in the process.

I also had a team that was lead by my ENT (Harvard Medical School, and John Hopkins Internship). He performed the surgey for tonsillectomy, and biopsy. He selected my chemo doctor, radiation doctor and surgeon for the port. They made the decisions for which approach based on the most recent studies providing the greatest long term success.

Their decisions for me was nine weeks of Chemo (three week cycles) of Cisplaten, Taxotere and 5FU, then seven weeks of Carboplaten and daily radiation. Yes, I could have chosen just the Chemo, but that wasn't advised for the greatest success.

There are no guarantees here, cancer is cancer. I wanted to get started and at least try to prevent it from getting a stronger hold. I wanted it stopped, killed and wiped out for good. To me the strongest dose or whatever I could handle was what I wanted. I didn't want to take a chance that it was only localized in one area. If it were anywhere else in my body, I wanted that hit hard also.

Yes there is a chance of (or guarantee concerning radiation) that I would have some life long residual damage. But (also in my opinion) you have to be alive first for that to happen. If the cancer wins, you don't need to worry about what ifs down the road.

Again, these are just my thoughts and opinions, not to upset anyone or suggest the same approach is for you.

John

stevenl

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!!

Chemo
Hey Charles,

I think I wrote you already, but I had stage 4 right tonsil. I am 52 and way too young for this disease. In my opinion, you need to use every weapon at your disposal to rid your body of this. I had a right neck dissection and tonsillectomy. Had the mass removed, the size of it doubled in 2-3 weeks. It was 7.2 cm x 4.9 cm x 4.2 cm. It did not bother me one bit. There were no side effects, other than the size of it.

I am now 4 weeks out of treatment and doing real well. Saw rad man Wednesday and he was very pleased with my progress. I feel like I am 25 years older but my strength is coming back. Right now I am building a play area and wooden swing set for my grand kids. It is not all bad, but I am the exception, not the rule. Most have a few more problems than I did. Everyone is different in their reaction to the treatments. But again I would use everything in the book and beat this craps behind.

Best,
Steve

Kent Cass

stevenl said:

Chemo
Hey Charles,

I think I wrote you already, but I had stage 4 right tonsil. I am 52 and way too young for this disease. In my opinion, you need to use every weapon at your disposal to rid your body of this. I had a right neck dissection and tonsillectomy. Had the mass removed, the size of it doubled in 2-3 weeks. It was 7.2 cm x 4.9 cm x 4.2 cm. It did not bother me one bit. There were no side effects, other than the size of it.

I am now 4 weeks out of treatment and doing real well. Saw rad man Wednesday and he was very pleased with my progress. I feel like I am 25 years older but my strength is coming back. Right now I am building a play area and wooden swing set for my grand kids. It is not all bad, but I am the exception, not the rule. Most have a few more problems than I did. Everyone is different in their reaction to the treatments. But again I would use everything in the book and beat this craps behind.

Best,
Steve

Med team
Charles: my ENT is the one who diagnosed me NPC-Positive, and told me I'd be going thru both Chemo and Rad. Yes, he mighta already consulted with the Onco and Rad Drs., but the ENT is the one who said it was both C&R for me. SO- what does your ENT say about it? Seems that's an opinion that can be of great value to it. And yes, I agree that it is likely an Onco is biased for chemo, and a Rad Dr. for radiation. I didn't realize you were only going to see an Onco at Kettering. I'm 13-months, post-treatment, and my ENT is the one I consider to be in charge of my case, though I still do have 3-month visits with the Onco and Rad. Again- what does your ENT advise?

kcass

Irishgypsie

Kent Cass said:

Med team
Charles: my ENT is the one who diagnosed me NPC-Positive, and told me I'd be going thru both Chemo and Rad. Yes, he mighta already consulted with the Onco and Rad Drs., but the ENT is the one who said it was both C&R for me. SO- what does your ENT say about it? Seems that's an opinion that can be of great value to it. And yes, I agree that it is likely an Onco is biased for chemo, and a Rad Dr. for radiation. I didn't realize you were only going to see an Onco at Kettering. I'm 13-months, post-treatment, and my ENT is the one I consider to be in charge of my case, though I still do have 3-month visits with the Onco and Rad. Again- what does your ENT advise?

kcass

Went with the whole kitchen sink!!!!!!!!
Hey you guys, sorry I didn't post sooner I did my first treatment yesterday and it was an all day affair as you all know. I went to my medical oncologist on Monday for the 1st time at U of R (Wilmont Cancer Center) He also recommended Chemo with rads he showed me this web-site that clinicians use all over the country to make decisions. you just go through the logarithm and it helps make a choice. I decided I couldn't risk it plus there weren't too many people on here who didn't just have radiation. www.nccn.org sign up is free. The deal breaker for me was the extra-capillary extension: though it was focal not gross. If you look at the logarithm that applies to me if you extracapillary extention the standard is chemo and rads!!!!!!!!!

Overall it was 3.5/5 for chemo and radiation vs radiation only. I wish I could have been more convinced but I would have been worried all along if I didn't give it everything I could. I hope I made the right decision? Also, I am going to wait till I see how things go for the peg; Memorial Sloan is using this approach on all there younger patients.

Chemo will be once every 3 weeks with lots of IV fluids the week of: my body mass index= 206 dose of cisplatin. Radiation will 57 gray to back of throat 65 gray to right neck. Anyway I'm getting tired it's 03:15. Good night. God bless! I hope we all survive this ****; because nobody deserves this crap!

Charles

Skiffin16

Irishgypsie said:

Went with the whole kitchen sink!!!!!!!!
Hey you guys, sorry I didn't post sooner I did my first treatment yesterday and it was an all day affair as you all know. I went to my medical oncologist on Monday for the 1st time at U of R (Wilmont Cancer Center) He also recommended Chemo with rads he showed me this web-site that clinicians use all over the country to make decisions. you just go through the logarithm and it helps make a choice. I decided I couldn't risk it plus there weren't too many people on here who didn't just have radiation. www.nccn.org sign up is free. The deal breaker for me was the extra-capillary extension: though it was focal not gross. If you look at the logarithm that applies to me if you extracapillary extention the standard is chemo and rads!!!!!!!!!

Overall it was 3.5/5 for chemo and radiation vs radiation only. I wish I could have been more convinced but I would have been worried all along if I didn't give it everything I could. I hope I made the right decision? Also, I am going to wait till I see how things go for the peg; Memorial Sloan is using this approach on all there younger patients.

Chemo will be once every 3 weeks with lots of IV fluids the week of: my body mass index= 206 dose of cisplatin. Radiation will 57 gray to back of throat 65 gray to right neck. Anyway I'm getting tired it's 03:15. Good night. God bless! I hope we all survive this ****; because nobody deserves this crap!

Charles

Good Decisions
Charles, while I'm by no means a medical expert, I feel that you made the best decision with the tools available.

You are also close to the same regime as I had and several others. I also didn't have the PEG, but would have if recommended. Like you I was in a weight range that they dodn't feel I was in jeopardy of losing too much, and that option was always there if needed.

It's rough, but very doable. I was in great health going in, and I feel that is why I had it a lot easier than some I read of. With you being younger and in good health already, that will be a plus for you I'm sure.

Of course everyone is diffeent and reacts differently.... Just keep a good and positive attitude, surround yourself with positive people as well.

I'm not sure of your schedule (work related) but do what you can when you feel like it and rest when needed. I found it much easier to just take it a day at a time, and not get involved with how much longer I have, it's hard. It's kind of like the movie Ground Hogs Day if you have seen that movie. Especially during the radiation where you go everyday, same time, same routine...it doesn't take long to get old fast....

Anyways, best of luck, and God Bless,
John

Greg53

Skiffin16 said:

Good Decisions
Charles, while I'm by no means a medical expert, I feel that you made the best decision with the tools available.

You are also close to the same regime as I had and several others. I also didn't have the PEG, but would have if recommended. Like you I was in a weight range that they dodn't feel I was in jeopardy of losing too much, and that option was always there if needed.

It's rough, but very doable. I was in great health going in, and I feel that is why I had it a lot easier than some I read of. With you being younger and in good health already, that will be a plus for you I'm sure.

Of course everyone is diffeent and reacts differently.... Just keep a good and positive attitude, surround yourself with positive people as well.

I'm not sure of your schedule (work related) but do what you can when you feel like it and rest when needed. I found it much easier to just take it a day at a time, and not get involved with how much longer I have, it's hard. It's kind of like the movie Ground Hogs Day if you have seen that movie. Especially during the radiation where you go everyday, same time, same routine...it doesn't take long to get old fast....

Anyways, best of luck, and God Bless,
John

PEG
Charles,
My treatment sounds fairly similar to yours. 7 weeks of rad with 3 chemo every 3 weeks during the same 7 week period. As for the PEG, my Doc's said the same thing. And that was to wait til I needed it. I definitely needed it by week 4 of treatments as I ended up losing 45#. I weighed 195# at start, went down to 150# and now back to 165#. I'm 4 weeks out from treatments. At least for me it wasn't a big deal to have it put in halfway thru treatments. Good luck!
Greg

debbiejeanne

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

stupid question?
Hi, Del. I'm sorry if this question is stupid but can you tell me what HPV is and how it is determined that it was the cause of the cancer?
Thanks and God Bless,
Deb

Scambuster

Greg53 said:

PEG
Charles,
My treatment sounds fairly similar to yours. 7 weeks of rad with 3 chemo every 3 weeks during the same 7 week period. As for the PEG, my Doc's said the same thing. And that was to wait til I needed it. I definitely needed it by week 4 of treatments as I ended up losing 45#. I weighed 195# at start, went down to 150# and now back to 165#. I'm 4 weeks out from treatments. At least for me it wasn't a big deal to have it put in halfway thru treatments. Good luck!
Greg

Same as Greg..
Charles,

I had mine in like Greg, about week 3-4 after I suggested it to my main Onco man (Chemo Ali). It was suggested by a friend whose Bro went through, as that was the only connection I had with someone who had been through this. My Doctor had never mentioned it, but when I did, he picked up the phone and booked me in. I almost saw the 'Ca Ching !" (Dollar signs) hmmm.

Anyway I am glad I did or I wouldn't have made it through. It did manage to get a free dose of Pneumonia immediately after the surgery (or during) and put it down to being freezing in the operating room plus more susceptible to bugs. As such your immune system would be stronger before you start treatment rather than half way through. Just another small risk and no big deal.

I might initially seem a big intrusion, but it's not such a big deal so don't fret on that side.

The other benefit of the PEG is that I needed it well after treatment, and you can still eat and use it if you are not getting enough down the normal way. I could also put some 'Vital Greens' in through the tube (Superfood) with my shakes, which helped on the nutrition side. All the best either way.

Scam

Irishgypsie

CajunEagle said:

Then again, Charles.....
I had 8 rounds of Cisplatin, and it turned me into a Bosox fan. Just something else to weigh in on.

I never did thank you for the Red Sox joke! It was a much needed laugh!! Thanks!

Go Yanks!!!