Should I do radiation?

louhou13

longtermsurvivor said:

given this situation

I am ready to vote:  personally I' would elect to treat.  You had mantle radiation, which generally is done in the shape of a "T", above the diaphragm but below "for the most part" where you would be radiated this time.  In other words, there wouldn't be much field overlap, and you would be more like a first time treatment than a second time treatment.  Your HPV confers a significant survival advantage as well.  If you are really freaking out, ask them about reduced dose treatment for hpv positives.  Not approved yet, but there is literature evidence to support it.

 

Pat

Hi Pat, I will ask about

Hi Pat, I will ask about reduced doses. My prior mantle radiation was 38gy and included the neck with a larynx block. Thanks!

louhou13

robswife87 said:

Do it

You have the same diagnosis as my husband.

7 weekly chemos and 35 rads. Was it easy Hell no, but would he do it again? He said, until doctors tell him he is terminal he would do what it takes to saty here with me and the kids.

It will be the toughest thing you have done to date, but my hubby is up, working, living life and enjoying everyday. 

He is only 4.5 months out and still has dry mouth and taste is really lacking, he eats to sustain right now knowing most of it all will come back with time.

He was miserable but he slept a lot and does say it really did go by quickly. He is NED now and lviing like cancer never disrupted out lives.

Please think hard about radiation. It has been a lifesaver for everyone here.

Sandy

Hi Sandy, very glad to hear

Hi Sandy, very glad to hear your husband is doing better. I don't know if our situation is the same as I have had prior radiation to my neck. I fear I will get worst case side effects. Thanks for taking the time to help me.

longtermsurvivor

louhou13 said:

Hi Pat, I will ask about

Hi Pat, I will ask about reduced doses. My prior mantle radiation was 38gy and included the neck with a larynx block. Thanks!

yes, see

typical throat cancer is about 70gy, so you have a significant safety margin.  With IMRT you may be surprised at how well you do.  My total dose is a whopping 138gy for comparison.

TracyLynn72

Yes.

If you had asked me during, I would have had to think about it.  But, yes.  Absolutely, definitely, 100% yes.  I did not handle rads well.  I had miserable side effects.  But knowing how well I am doing now and how I did EVERYTHING I could to get rid of that nasty cancer...I would do it all again...side effects and all. 

hwt

TracyLynn72 said:

Yes.

If you had asked me during, I would have had to think about it.  But, yes.  Absolutely, definitely, 100% yes.  I did not handle rads well.  I had miserable side effects.  But knowing how well I am doing now and how I did EVERYTHING I could to get rid of that nasty cancer...I would do it all again...side effects and all. 

Lou

Sorry you find yourself here with this question. Jan. 2012, I had cancer in my jaw. A 19 hour surgery replacing jaw with fibula. Rads and chemo completed 05/2012. NED until 08/2013. Recurrance in carotid cavity, surgery not an option. In STL they were very pessimistic leading me to believe the 2nd tx would likely lead to a trach and feeding tube. That was so wrong! I cried and said I was tired and did not want to go that route, so I can relate to how you feel. I sought a 2nd opinion from Mayo Clinic and had SBRT tx there. Tx itself only took 5 days. No real side effects to speak of, a very mild sore throat for a week or two. Won't know how successful until December. Here in St Louis they took away my hope. Mayo gave it back, not only to me but to my family. I believe SBRT is only an option for isolated tumors but if you have options available, I say take them for your family. At the very least, get a second or third opinion. 

God bless,

Candi

nick770

Man, that is a tough call. I

Man, that is a tough call. I personally don't think I would do it again, it was hell on earth for me and over a year later side effects still haunt me. I did heal up but my salvia got ruinied. you mention you had your glands removed. so you already know what it's like, to me the salvia is the deal breaker that has limited my diet quite significanty. about a year after my rads (36) I got chemo to help battle mets to my lungs and the worst thing happend i got radiation recall. (you may have to google that) basicly my throat went into some weird shock and it filled with sores and the pain was just like it was when i had gotten radiation. i was unable to eat or drink anything for 5 days i had to go the the hospital eveyday for IV fluids. and then I got another feeding tube installed. 

Here is an angle you might want to consider. What about seeking some clinical trials? (you will have to look for them, your Onco cannot find you any unless they are involved in them, it;s becasue the FDA doesn't consider the clinical trial drugs as "drugs" becasue they havent been approved and if your onco tels you about a trial they are not invovled with then they could be sued for malpractice. Anyway i have seen some  tumors melt away via chemo only. 

Everyone is different, but there are a marid or options.

louhou13

nick770 said:

Man, that is a tough call. I

Man, that is a tough call. I personally don't think I would do it again, it was hell on earth for me and over a year later side effects still haunt me. I did heal up but my salvia got ruinied. you mention you had your glands removed. so you already know what it's like, to me the salvia is the deal breaker that has limited my diet quite significanty. about a year after my rads (36) I got chemo to help battle mets to my lungs and the worst thing happend i got radiation recall. (you may have to google that) basicly my throat went into some weird shock and it filled with sores and the pain was just like it was when i had gotten radiation. i was unable to eat or drink anything for 5 days i had to go the the hospital eveyday for IV fluids. and then I got another feeding tube installed. 

Here is an angle you might want to consider. What about seeking some clinical trials? (you will have to look for them, your Onco cannot find you any unless they are involved in them, it;s becasue the FDA doesn't consider the clinical trial drugs as "drugs" becasue they havent been approved and if your onco tels you about a trial they are not invovled with then they could be sued for malpractice. Anyway i have seen some  tumors melt away via chemo only. 

Everyone is different, but there are a marid or options.

Hello and thank you for

Hello and thank you for sharing your story. Sounds like you are living my fears and I pray for your continued recovery. I love your suggestion for clinical trials and will research if any are available for me. Never heard of radiation recall but it sounds horrible. I really appreciate your opinion, thank you and wish you many peaceful days. 

louhou13

hwt said:

Lou

Sorry you find yourself here with this question. Jan. 2012, I had cancer in my jaw. A 19 hour surgery replacing jaw with fibula. Rads and chemo completed 05/2012. NED until 08/2013. Recurrance in carotid cavity, surgery not an option. In STL they were very pessimistic leading me to believe the 2nd tx would likely lead to a trach and feeding tube. That was so wrong! I cried and said I was tired and did not want to go that route, so I can relate to how you feel. I sought a 2nd opinion from Mayo Clinic and had SBRT tx there. Tx itself only took 5 days. No real side effects to speak of, a very mild sore throat for a week or two. Won't know how successful until December. Here in St Louis they took away my hope. Mayo gave it back, not only to me but to my family. I believe SBRT is only an option for isolated tumors but if you have options available, I say take them for your family. At the very least, get a second or third opinion. 

God bless,

Candi

Hi Candi, thank you for

Hi Candi, thank you for helping me. You are the second person to suggest SBRT and I will look into it although I don't think I'm a candidate as the there are a couple of nodes affected. I pray you get good news in December and am grateful you replied. Thanks!

louhou13

TracyLynn72 said:

Yes.

If you had asked me during, I would have had to think about it.  But, yes.  Absolutely, definitely, 100% yes.  I did not handle rads well.  I had miserable side effects.  But knowing how well I am doing now and how I did EVERYTHING I could to get rid of that nasty cancer...I would do it all again...side effects and all. 

Thanks Tracy. So glad to hear

Thanks Tracy. So glad to hear you are doing well. Still on the fence but appreciate your opinion.

louhou13

longtermsurvivor said:

yes, see

typical throat cancer is about 70gy, so you have a significant safety margin.  With IMRT you may be surprised at how well you do.  My total dose is a whopping 138gy for comparison.

Still struggling with

Still struggling with decision.  I greatly value your opinion and thank you.

hwt

louhou13 said:

Hello and thank you for

Hello and thank you for sharing your story. Sounds like you are living my fears and I pray for your continued recovery. I love your suggestion for clinical trials and will research if any are available for me. Never heard of radiation recall but it sounds horrible. I really appreciate your opinion, thank you and wish you many peaceful days. 

Lou

My cousin had a different cancer, melanoma mets to lungs and liver. Did a clinical trial that was in itself live threatening. Hell for 3 weeks but clean 8 years now! Never give up hope!

louhou13

hwt said:

Lou

My cousin had a different cancer, melanoma mets to lungs and liver. Did a clinical trial that was in itself live threatening. Hell for 3 weeks but clean 8 years now! Never give up hope!

Hello H, thanks for the

Hello H, thanks for the suggestion. I've the process in the search of clinical trials. So glad your cousin is healthy and thank you for replying.

louhou13

Additional information

THANK YOU all for your comments. They are insightful and very much appreciated!!  I forgot to mention that the doctors told me that radiation was not an option due to my prior radiation. I asked them to reconsider because I didn't want the surgery but they told me no radiation...too much risk. I was NED for 12 months then recurrence. Now they want to give me full dose. Leaning towards living large for the next 10-12 months. Thank you!

donfoo

get more input

Hello,

Sorry to hear all the struggles you have now. Since you have been here for a year, you've seen many, many people come and go and read stories with wide ranging outcomes. Most join, gain knowledge, comfort, support, and endure the chosen therapies. After some time on the road of recovery they find less need, time, and desire to visit here. I suspect they would all say they are trilled to have been successfully treated and regained much if not all the joy of life they had before cancer.

All options My suggestion would be to certainly get second/third opinions and seek out trials as has been suggested. Once you have all your options on the table, then is the time to evaluate and make a decision; now is not the best time.

Family As you have a family with young kids, my inclination is to go forward with the most aggressive treatments and hope for the best. I very much want to see my kids grow, get married, have kids, etc. That said, choosing treatment is very personal, so only you know all you have been through, what you suffer daily, etc.

Other side of coin Nearly all the input you receive here is from those who are able to read and respond. Most all who made the decision to deny further therapies and treatments are no longer here to represent their viewpoint, so what you read here is obviously highly biased. Their opinions on the decisions to deny further therapies are not represented so it is difficult to know what thoughts they had about their decisions.

There are a few blessed soldiers who continue to fight the fight, like Hondo, who continues marching forward after deciding to stop therapies. 

Scared "sh..less". We all internalize and deal with our cancer in different ways. There are various options to cage this up and deny it from affecting your judgment. Seek out a spiritual advisor or a counselor or therapist. Maybe even a psychiatrist can offer some medication to help with the anxiety. It just seems you would not want these feelings to cloud your judgment.

Quality of life If it was me making the most important decision in my life, I'd demand a complete, thorough, and 360 examination of all perspectives. I would request hospice consultation to understand that whole side of the coin. There is no obligation to give up and die just because you engage them but I am certain they can offer very valuable perspectives as that is their mission in life.

All that said, based on what you stated, I'd seek the most aggressive therapies to murder that **** disease forever! Life is too precious not to fight like hell.

Best to you, don

Hummingbird3

Don't think I could add much

Don't think I could add much more to all the encouraging words...it seems unanimous!  "This too shall pass" kinda day...I'm 5 weeks post rad.  Absolutely if I was told tomorrow I needed to run that race again, I would hesitate at the gate.   But I truly know I would run with it again.  For me ppersonally it would come down to "Hope".   At the end of the day we can only hope.  

Reflect on the good stuff that came from your days of treatment...know you did it before and you can do it again.  Don't compare this walk with the previous one.  And pool from all you learned.  

This certainly is a deep personal decision and there is never a need to explain yourself.  Know whatever you decide your supported.

praying you find confirmation and peace that passes understanding,

Christie

Roar

12/10/13 last treatment

I am almost a year out of treatment- so far so good- from time to time I ask myself the same question " if it comes back what will I do" - the side effects suck - had about 40 rads and 3 chemo- the bottom line is I want to live and see My grandchildren. I look at it as a war- most days I win the battle some days I don't do so well, but i keep battling. When I was diagnosed I was extremely confident I would pull through - I thought because I was in good shape it would not be hard on me- I was wrong- but I think if I had to go through it again I would be better prepared and would probably do it. It's a quality of life question that only you can answer. I am sorry the beast is back and will say a prayer for you. 

louhou13

louhou13 said:

Additional information

THANK YOU all for your comments. They are insightful and very much appreciated!!  I forgot to mention that the doctors told me that radiation was not an option due to my prior radiation. I asked them to reconsider because I didn't want the surgery but they told me no radiation...too much risk. I was NED for 12 months then recurrence. Now they want to give me full dose. Leaning towards living large for the next 10-12 months. Thank you!

Clarification

The additional information I provided was conversations I had with my doctors prior to initial surgery last year, prior to any treatment. The surgery sounded bad so I asked for the radiation ( before I did any research ). It is pretty clear that most everyone is glad they did it and I am so happy to hear that. I've heard from a couple of people who have been radiated more than once, my potential situation, who have been very candid about questioning their decision and all the information is incredibly insightful and helpful. I really am terrified of the side effects and of taking on anymore side effects. I will not make a decision for another week or two while I am still gathering information. Thank you all VERY MUCH for your help. I know you know how valuable your comments have been.

louhou13

Hummingbird3 said:

Don't think I could add much

Don't think I could add much more to all the encouraging words...it seems unanimous!  "This too shall pass" kinda day...I'm 5 weeks post rad.  Absolutely if I was told tomorrow I needed to run that race again, I would hesitate at the gate.   But I truly know I would run with it again.  For me ppersonally it would come down to "Hope".   At the end of the day we can only hope.  

Reflect on the good stuff that came from your days of treatment...know you did it before and you can do it again.  Don't compare this walk with the previous one.  And pool from all you learned.  

This certainly is a deep personal decision and there is never a need to explain yourself.  Know whatever you decide your supported.

praying you find confirmation and peace that passes understanding,

Christie

Hi Christie and thank you for

Hi Christie and thank you for your thoughts. You are right on the money regarding hope. My dilemma is the price paid for hope. I am thrilled you are 5 weeks out, wish you peaceful days and hope to hear about your continued recovery. THANK YOU!!

louhou13

Roar said:

12/10/13 last treatment

I am almost a year out of treatment- so far so good- from time to time I ask myself the same question " if it comes back what will I do" - the side effects suck - had about 40 rads and 3 chemo- the bottom line is I want to live and see My grandchildren. I look at it as a war- most days I win the battle some days I don't do so well, but i keep battling. When I was diagnosed I was extremely confident I would pull through - I thought because I was in good shape it would not be hard on me- I was wrong- but I think if I had to go through it again I would be better prepared and would probably do it. It's a quality of life question that only you can answer. I am sorry the beast is back and will say a prayer for you. 

Hi Roar, thanks for the reply

Hi Roar, thanks for the reply and prayers. Congratulations on being 1 year out! Grandchildren are at least 10 years away for me but that is a variable in the decision making process. Once again, thanks and congratulations!

louhou13

donfoo said:

get more input

Hello,

Sorry to hear all the struggles you have now. Since you have been here for a year, you've seen many, many people come and go and read stories with wide ranging outcomes. Most join, gain knowledge, comfort, support, and endure the chosen therapies. After some time on the road of recovery they find less need, time, and desire to visit here. I suspect they would all say they are trilled to have been successfully treated and regained much if not all the joy of life they had before cancer.

All options My suggestion would be to certainly get second/third opinions and seek out trials as has been suggested. Once you have all your options on the table, then is the time to evaluate and make a decision; now is not the best time.

Family As you have a family with young kids, my inclination is to go forward with the most aggressive treatments and hope for the best. I very much want to see my kids grow, get married, have kids, etc. That said, choosing treatment is very personal, so only you know all you have been through, what you suffer daily, etc.

Other side of coin Nearly all the input you receive here is from those who are able to read and respond. Most all who made the decision to deny further therapies and treatments are no longer here to represent their viewpoint, so what you read here is obviously highly biased. Their opinions on the decisions to deny further therapies are not represented so it is difficult to know what thoughts they had about their decisions.

There are a few blessed soldiers who continue to fight the fight, like Hondo, who continues marching forward after deciding to stop therapies. 

Scared "sh..less". We all internalize and deal with our cancer in different ways. There are various options to cage this up and deny it from affecting your judgment. Seek out a spiritual advisor or a counselor or therapist. Maybe even a psychiatrist can offer some medication to help with the anxiety. It just seems you would not want these feelings to cloud your judgment.

Quality of life If it was me making the most important decision in my life, I'd demand a complete, thorough, and 360 examination of all perspectives. I would request hospice consultation to understand that whole side of the coin. There is no obligation to give up and die just because you engage them but I am certain they can offer very valuable perspectives as that is their mission in life.

All that said, based on what you stated, I'd seek the most aggressive therapies to murder that **** disease forever! Life is too precious not to fight like hell.

Best to you, don

Hi Don, thank you for your

Hi Don, thank you for your very through and insightful reply. All your suggestions are good and I will look into them all. Never thought of the hospice  consultation. I've got a lot of homework ahead of me along with a very tough decision. I feel blessed to have the benefit of crossing paths with the great people involved with this board. Thanks!