Metastisize to lung

shirley123

I had HPV16+ tonsil cancer in 2016, stage 4.  Had 35 radiation treatments and 5 cisplatin.  Then in 2017 I had anotehr occurent on the left neck.  Had partial neck disection, 35 treatments of prton radiation and 5 of erbitux.  Now it has spread to my right lower lung.  I am very discouraged.  It just keeps spreading.  Has anyone experienced HPV16 spread to lungs?  What was treatment?  Was it successful?

Pclark21st

We have had met to lung. 

We have had met to lung.  Weve had a bumpy road but are now doing cocktail of keytruda, carbo and 5fu starting in August when future looked dim.  Complete turn around.  Recurrence is shrinking and he feels and looks better than I've seen in months 

lorijeannj

Same here

It's been a long battle since September of 2016.  My husband, after the 35 rads and cisplatin, has had the cancer from his tongue (hpv16) spread to the lungs in February 2018.  He started on Opdivo, it may have worked by doctor thought it wasnt due to progression on scans.  I on the other hand thought it was pseudo progression,  So dr. put him on Gemcar (sp?).  He was on this maybe 3 weeks.  Ended up in hospital with severe pain in jaw due to a shot he got to increase his red blood cells.

Well that was that.  Dr. said he was placing him on Keytruda.  This was July 2018.  He has been on keytruda (and only keytruda) ever since.  Every 3 weeks.  He has had side effects but nothing to keep him down much.  His breathing is fine, his blood work is normal so we think keytruda is obviously doing something after 19 months.   24th treatment coming up on Tuesday.  Haven't had a scan lately since March 2019 so very anxious yet nervous to get one which I believe is going to happen very soon.  The scan in March did show hope.  So this scan again should show improvement if not outright gone.

All in all my husband is active and is happy to be alive.

Good luck with keytruda, it is a very promising drug, not anywhere near toxic as chemo drugs.  It's hard not to get discouraged but like I tell my husbad, there's hope and those around are here to get you through it all.

 

 

shirley123

lorijeannj said:

Same here

It's been a long battle since September of 2016.  My husband, after the 35 rads and cisplatin, has had the cancer from his tongue (hpv16) spread to the lungs in February 2018.  He started on Opdivo, it may have worked by doctor thought it wasnt due to progression on scans.  I on the other hand thought it was pseudo progression,  So dr. put him on Gemcar (sp?).  He was on this maybe 3 weeks.  Ended up in hospital with severe pain in jaw due to a shot he got to increase his red blood cells.

Well that was that.  Dr. said he was placing him on Keytruda.  This was July 2018.  He has been on keytruda (and only keytruda) ever since.  Every 3 weeks.  He has had side effects but nothing to keep him down much.  His breathing is fine, his blood work is normal so we think keytruda is obviously doing something after 19 months.   24th treatment coming up on Tuesday.  Haven't had a scan lately since March 2019 so very anxious yet nervous to get one which I believe is going to happen very soon.  The scan in March did show hope.  So this scan again should show improvement if not outright gone.

All in all my husband is active and is happy to be alive.

Good luck with keytruda, it is a very promising drug, not anywhere near toxic as chemo drugs.  It's hard not to get discouraged but like I tell my husbad, there's hope and those around are here to get you through it all.

 

 

Thank you for responding

Did  you have surgery to remove the tumor.  What stage were you in when treatment started.  They are talking about surgery for me and I am stage II or III

Pclark21st

shirley123 said:

Thank you for responding

Did  you have surgery to remove the tumor.  What stage were you in when treatment started.  They are talking about surgery for me and I am stage II or III

We are Stage IV and we had

We are Stage IV and we had the largest tumor surgically removed but with the others it was determined to leave and let the treatment rid the tumors...which seems to be working.

lorijeannj

shirley123 said:

Thank you for responding

Did  you have surgery to remove the tumor.  What stage were you in when treatment started.  They are talking about surgery for me and I am stage II or III

Hi.

Hi.

My husband did not have surgery as there were multiple nodules.  You can only surgically remove so much from the lungs.  Radiation was not an option either.  His (and mine) only hope is Keytruda.

If they can remove your nodule, that is great to hear.

My husband was stage IV, just had radiation and chemo at the time for the tongue cancer and right side lymph nodes.  Radiation got it all except for the one cell that travelled the road less travelled. 

 

shirley123

lorijeannj said:

Hi.

Hi.

My husband did not have surgery as there were multiple nodules.  You can only surgically remove so much from the lungs.  Radiation was not an option either.  His (and mine) only hope is Keytruda.

If they can remove your nodule, that is great to hear.

My husband was stage IV, just had radiation and chemo at the time for the tongue cancer and right side lymph nodes.  Radiation got it all except for the one cell that travelled the road less travelled. 

 

Thank you

Thank you again pClark and lorijeann for responding and sharing your stories.  It gives me hope.

shirley123

Pclark21st said:

We are Stage IV and we had

We are Stage IV and we had the largest tumor surgically removed but with the others it was determined to leave and let the treatment rid the tumors...which seems to be working.

Treatment choices

Pclark21st,

All the tests are back.  HPV cancer is in the right lung only.  They are looking into systemic treatment revoling around Keytruda, platinum drug and another, (can't remember the name).  The only problem is that I did not tolerate the platinum drug very well last time so, there is a possibility of Keytruda only..  Waiting to hear on that.  I have also been offered 3 weeks of radiation to get rid of most of what we see in the lung now, of course that will not get rid of what is in my system.

 

I am very unsure about the radiation.  I would love to hear more about your decision.  Not sure if there is a way we could private message or chat at a specific time in the chat room?  I would like to hear more specific information and have questions.

n2horses97

shirley123 said:

Treatment choices

Pclark21st,

All the tests are back.  HPV cancer is in the right lung only.  They are looking into systemic treatment revoling around Keytruda, platinum drug and another, (can't remember the name).  The only problem is that I did not tolerate the platinum drug very well last time so, there is a possibility of Keytruda only..  Waiting to hear on that.  I have also been offered 3 weeks of radiation to get rid of most of what we see in the lung now, of course that will not get rid of what is in my system.

 

I am very unsure about the radiation.  I would love to hear more about your decision.  Not sure if there is a way we could private message or chat at a specific time in the chat room?  I would like to hear more specific information and have questions.

My husband is 5+ months post

My husband is 5+ months post treatment for HPV16+ left tonsil with positive right retropharyngeal lymph node. A friend sent us the link to this blog, that may be beneficial to you. My husband, an orthopedic surgeon, read about the mechanism of action and about clinical trials, and he has stated that if there is residual primary or if this ever metastacizes, he plans to add this to MD Anderson's suggested protocol.  I hope you find this helpful. There does not seem to be a downside.

https://www.mycancerstory.rocks/