Treatment options

shirley123

I have metastisized HPV positive 16 throat cancer in my lungs now.  I have been given two treatment options.  

1. Fifteen treatments of radiation first and then follow-up with chemo or immunotherapy as denoted by testing.
2.  Chemo or immunotherapy as denoted by testing

The radiation is "out of the box" as being offerred by my radiologist first.  His idea is to kill as much as possible with radiation before starting other treatment.  Any thoughts on what has been offered me.  Has anyone with metastisized throat cancer to lungs had radiation first?

Logan51

shirley

I know Phrannie had hers spread to her lungs. Thought she wrote of Keytruda. She's not on the Forum much anymore. Matt might be able to help get in touch with her.

Pclark21st

Weve had met to lungs and

Weve had met to lungs and recurrence to throat.  In August our future looked grim.  As a Hail Mary we opted for chemo/immunotherapy...6 sessions of Carbo and Keytruda and home with a pump of 5FU for 4 days with a shot of Nuelasra.. repeat every 3 weeks.  We are getting #5 this week.  Hes had very little side effects@, his tumors have shrunk or disappeared.  Not sure what future looks like but right now he looks and feels better than hes been in last 2 years.  

spsandi102

Timeline

Sorry to hear this.  What type of treatment did you have for the throat cancer?  How long did it take for the cancer in your throat to metastsize to your lungs?

shirley123

spsandi102 said:

Timeline

Sorry to hear this.  What type of treatment did you have for the throat cancer?  How long did it take for the cancer in your throat to metastsize to your lungs?

treatment

I had 5 cisplatin and 35 radiation the first time around.  When it spread seven months later to the other side of my nexk I had 35 proton radiation and 5 ot 6 erbitux.  Now two years later, met to lungs.

spsandi102

Primary Source

Was your initial throat cancer diagnosed knowing where the cancer started?  My husband was just diagnosed with metastasized SCC to lymph nodes, HPV and unable to find the primary source. He just had surgery to remove the lymph nodes, only 1 tested positive and had not spread into others, however there was an extracapsulary extension.  Now they want to do radiation/chemo but they still don't know where it started.  Not sure what they will radiate without knowing the source.  Have you had any lasting side effects from all the treatment you've had?  I'm so sorry this has again spread.  Is surgery not an option?   

Logan51

Must ask

Where were you initially treated, Shirley? Seven months is too soon to "come back." The bottom-line odds are they never eradicated your body of the C with your first bout. They only zapped one side of your neck in your first bout with C? I was unknown Primary w/2 enlarged lymphs on the left side of my throat and the blasted both sides of my neck to the degree that 10+ years later I'm on a Feeding Tube for life because of the scar tissue damage done by the Rads. And I was Nasopharyngeal. So, yes, there are lasting side effects, though what I'm experiencing may be nothing like what you do.

The 3-month PET/CT is traditionally to establish a baseline to compare future scans to.

The 1-year is the first real PET/CT to make sure they got it all, unless symptoms show before suggesting they did not get it all.

 

shirley123

spsandi102 said:

Primary Source

Was your initial throat cancer diagnosed knowing where the cancer started?  My husband was just diagnosed with metastasized SCC to lymph nodes, HPV and unable to find the primary source. He just had surgery to remove the lymph nodes, only 1 tested positive and had not spread into others, however there was an extracapsulary extension.  Now they want to do radiation/chemo but they still don't know where it started.  Not sure what they will radiate without knowing the source.  Have you had any lasting side effects from all the treatment you've had?  I'm so sorry this has again spread.  Is surgery not an option?   

Primary Source

The primary source for me was my right tonsil.  .  My lasting side effects would be chronic dry mouth and extra sensitivity to wind and iriitants in my throat area.  Taste of food is not like it used to be but I can taste.  The radiation/chemo treatment is tough and I did wind up on a feeding tube but I was able to get off of that eventually.  No surgery is not an option for me.  

 

Treatment decisions are hard to make.  Always involve some risks, and are full of many unknowsn.  I am dealing with that now.  The radiation and chemo seems to be fairly standard treatment in your husbands situation based on the encapsulated lymph node.  I pray that you can sort though and make a good decision based on your diagnosis.  My prayer for myself also!!

spsandi102

shirley123 said:

Primary Source

The primary source for me was my right tonsil.  .  My lasting side effects would be chronic dry mouth and extra sensitivity to wind and iriitants in my throat area.  Taste of food is not like it used to be but I can taste.  The radiation/chemo treatment is tough and I did wind up on a feeding tube but I was able to get off of that eventually.  No surgery is not an option for me.  

 

Treatment decisions are hard to make.  Always involve some risks, and are full of many unknowsn.  I am dealing with that now.  The radiation and chemo seems to be fairly standard treatment in your husbands situation based on the encapsulated lymph node.  I pray that you can sort though and make a good decision based on your diagnosis.  My prayer for myself also!!

Thanks for the kind words, I

Thanks for the kind words, I wish you all the best.

shirley123

Logan51 said:

Must ask

Where were you initially treated, Shirley? Seven months is too soon to "come back." The bottom-line odds are they never eradicated your body of the C with your first bout. They only zapped one side of your neck in your first bout with C? I was unknown Primary w/2 enlarged lymphs on the left side of my throat and the blasted both sides of my neck to the degree that 10+ years later I'm on a Feeding Tube for life because of the scar tissue damage done by the Rads. And I was Nasopharyngeal. So, yes, there are lasting side effects, though what I'm experiencing may be nothing like what you do.

The 3-month PET/CT is traditionally to establish a baseline to compare future scans to.

The 1-year is the first real PET/CT to make sure they got it all, unless symptoms show before suggesting they did not get it all.

 

Answer

MD Anderson Houston.  

Logan51

shirley123 said:

Answer

MD Anderson Houston.  

Wow

That does surprise me, because they are supposed to be #1 in C treatment. Then again, I think Phrannie had her Montana local Oncologist contact them w/details as a 2nd opinion for tx, and it has come back on her twice- she has gone to different places for both of her treatments.

That said, one would think whatever the MD Drs. think is your best option would be the one to take.

shirley123

Update

I decided on radiation to start with 15 sessions.  I'll post how it goes after just in case anyone else is faced with this and is looking for direction.

phrannie51

Shirley....I had

25 radiation treatments the first recurrence in my neck.....plus a neck dissection. I went to Dana Farber for 2 cyroablations last year on my neck, also. When the cancer showed up in my lungs, I started Keytruda....the lung mets have been gone now for 15 months. 

P

motorcycleguy

phrannie51 said:

Shirley....I had

25 radiation treatments the first recurrence in my neck.....plus a neck dissection. I went to Dana Farber for 2 cyroablations last year on my neck, also. When the cancer showed up in my lungs, I started Keytruda....the lung mets have been gone now for 15 months. 

P

phrannie / Shirley,

Thanks for sharing! I hope you're able to keep us posted - and that all the news going forward is positive!

shirley123

next steps

So after 15 treatments of radiation I will start ketruda/carboplatin/5FU every 3 weeks.  Has anyone taken this cocktail and did you have much in side effects?