HPV- SCC spread to lungs
2018 I had a SCC tumor on the base of my tounge. No sugery just radiation and chemo. June scans, and last week biopsy came back positive in both sides of my lungs. I have no symptoms yet. Looking for guidance/hope, and info to base decision making on. I do not always take what the oncologist says as gospel.
Thanks
Comments
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Hello 1200Sportster
And welcome to the club/forum which no one volunteers as a member and no one really wants to join but we find ourselves here because we all share a general malady. First off how big are the cancer areas in your lungs? Have they discussed treatment options such as radiation as there are different ways they can deliver radiation nowadays with much more accuracy? My sister had a small nodule in one lung and they were watching it by her getting a scan every year then every 6 months and it was staying stable not growing. Then it started growing and increasing in size so they used radiation on it and it worked to get rid of it. I forget what radiation it was, possibly cyberknife and I had a recent bout with lymph node cancer and had an operation and a 30 treatment follow up with the cyberknife. I also searched for types of radiation and there are lots to look at so check out this search link--
Possibly chemo too but I don't know if that would be for lung cancer. Since you had a biopsy it looks then to be verified cancer. Also, you may want to click on discussion boards in the top left of this page and on the list you will see there is a discussion group for Lung Cancer you will probably find better knowledge related to your situation there. I am not trying to run you off you are very welcome here and in fact, you can be in both forums no problem. Also, there are some advances in immunotherapy around that are progressing well and offering other options and hope. I did a search on Ketruda which is immunotherapy and here is a link to the search--
https://www.google.com/search?client=firefox-b-1-d&q=keytruda
In that search if it comes up the same for you on the top right I see this--tells you about Keytruda and there could be other immunotherapy drugs also and I am not well versed in this stuff. So hopefully more folks on here will chip in with some good ideas for you. Also mentioned on here many times is if you are close to a major cancer center or teaching hospital you will get more knowledgeable treatment as they deal with a higher volume and many times have top-rated doctors. Wishing you the best-Take Care-God Bless
Pembrolizumab
MedicationDescription
Description
Pembrolizumab is a humanized antibody used in cancer immunotherapy. This includes to treat melanoma, lung cancer, head and neck cancer, Hodgkin lymphoma, and stomach cancer. It is given by slow injection into a vein.Wikipedia
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HPV- SCC spread to lungswbcgaruss said:Hello 1200Sportster
And welcome to the club/forum which no one volunteers as a member and no one really wants to join but we find ourselves here because we all share a general malady. First off how big are the cancer areas in your lungs? Have they discussed treatment options such as radiation as there are different ways they can deliver radiation nowadays with much more accuracy? My sister had a small nodule in one lung and they were watching it by her getting a scan every year then every 6 months and it was staying stable not growing. Then it started growing and increasing in size so they used radiation on it and it worked to get rid of it. I forget what radiation it was, possibly cyberknife and I had a recent bout with lymph node cancer and had an operation and a 30 treatment follow up with the cyberknife. I also searched for types of radiation and there are lots to look at so check out this search link--
Possibly chemo too but I don't know if that would be for lung cancer. Since you had a biopsy it looks then to be verified cancer. Also, you may want to click on discussion boards in the top left of this page and on the list you will see there is a discussion group for Lung Cancer you will probably find better knowledge related to your situation there. I am not trying to run you off you are very welcome here and in fact, you can be in both forums no problem. Also, there are some advances in immunotherapy around that are progressing well and offering other options and hope. I did a search on Ketruda which is immunotherapy and here is a link to the search--
https://www.google.com/search?client=firefox-b-1-d&q=keytruda
In that search if it comes up the same for you on the top right I see this--tells you about Keytruda and there could be other immunotherapy drugs also and I am not well versed in this stuff. So hopefully more folks on here will chip in with some good ideas for you. Also mentioned on here many times is if you are close to a major cancer center or teaching hospital you will get more knowledgeable treatment as they deal with a higher volume and many times have top-rated doctors. Wishing you the best-Take Care-God Bless
Pembrolizumab
MedicationDescription
Description
Pembrolizumab is a humanized antibody used in cancer immunotherapy. This includes to treat melanoma, lung cancer, head and neck cancer, Hodgkin lymphoma, and stomach cancer. It is given by slow injection into a vein.WikipediaThanks So much WBC. Came to this site because it is the toungue spread to the lung. THe spots got bigger between CAT scan in June and PET scan in July. So they are growing. Previous scans in December were OK.
THe doc says it is incurable but treatable. THey are talking immuno and/or chemo. They put a marker test order in. No results back yet. I am looking to get real life data on quality of life with treatment, and extension of life vs. no treatment.
Thanks agian.
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Hello sportster.
Hello sportster.
My husband had same treatment back in 2017.
we waited 3 months for a scan in sure enough, it had spread to right lung, another scan, the other lung.
I will mention he had no surgery and was on a feeding tube during treatment as
he tongue was so swollen he couldn't eat.
Biopsy done to confirm metases not a new cancer. Metase. PDL-1 90%
Since there were too many nodules radiation was out of the question and chemo obviously didn't work to begin with.
Started with Opdivo. Didn't seem to be working ( i think we needed to wait a bit more and do another scan), nodules were growing.After 3 months of Opdivo, went to Gemzar (killer chemo). Stopped that and in to Keytruda.
Been 2 yrs, having a ct-scan in coming weeks. Hoping for the best.
Side effects there but nothing that has kept my husband home. We travel, eat out, at least pre-covid.
I have heard horror stories about immunotherapy but also success.
success with my husband as he is still with me but he wants cancer gone and off the drug.
I wish you luck in your decision making.
You can message me as well. I did get your message but opted to reply here
for others to read.
Stay safe.
Philly area.
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HPV- SCC spread to lungslorijeannj said:Hello sportster.
Hello sportster.
My husband had same treatment back in 2017.
we waited 3 months for a scan in sure enough, it had spread to right lung, another scan, the other lung.
I will mention he had no surgery and was on a feeding tube during treatment as
he tongue was so swollen he couldn't eat.
Biopsy done to confirm metases not a new cancer. Metase. PDL-1 90%
Since there were too many nodules radiation was out of the question and chemo obviously didn't work to begin with.
Started with Opdivo. Didn't seem to be working ( i think we needed to wait a bit more and do another scan), nodules were growing.After 3 months of Opdivo, went to Gemzar (killer chemo). Stopped that and in to Keytruda.
Been 2 yrs, having a ct-scan in coming weeks. Hoping for the best.
Side effects there but nothing that has kept my husband home. We travel, eat out, at least pre-covid.
I have heard horror stories about immunotherapy but also success.
success with my husband as he is still with me but he wants cancer gone and off the drug.
I wish you luck in your decision making.
You can message me as well. I did get your message but opted to reply here
for others to read.
Stay safe.
Philly area.
Thanks so much for the info Lori.
It does give me hope! My wife would like to know what to expect as well.
I pray that you guys are keeping it roling in years to come.
We are iin the DC Metro area.
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Sportster
I was in the same boat. HPV cancer at the base of my tongue in 2009 and then it decided to attack my right lung in 2018. They caught it early and by luck when it showed up in a CT Scan for a hernia. I had five radiation treatments and it put its tail between its legs and ran away. The lung radiation was a piece of cake compared to the throat radiation.
Never hurts to get a second opinion if you feel uneasy with the first doctor.
Enjoy the day
Jeff
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THanks DuggieDuggie88 said:Sportster
I was in the same boat. HPV cancer at the base of my tongue in 2009 and then it decided to attack my right lung in 2018. They caught it early and by luck when it showed up in a CT Scan for a hernia. I had five radiation treatments and it put its tail between its legs and ran away. The lung radiation was a piece of cake compared to the throat radiation.
Never hurts to get a second opinion if you feel uneasy with the first doctor.
Enjoy the day
Jeff
For sharing your experience. My doc told me that radiantion was not an option, but I will ask. Yes throat rad sucked. Glad you are doing good!
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Lucky manDuggie88 said:Sportster
I was in the same boat. HPV cancer at the base of my tongue in 2009 and then it decided to attack my right lung in 2018. They caught it early and by luck when it showed up in a CT Scan for a hernia. I had five radiation treatments and it put its tail between its legs and ran away. The lung radiation was a piece of cake compared to the throat radiation.
Never hurts to get a second opinion if you feel uneasy with the first doctor.
Enjoy the day
Jeff
Jeff,
I missed the whole ordeal from a couple years ago but very trilled to learn you beat the beast back. I never got comfortable not having ongoing scans and the doctors anything new is more an "opportunistic" find, if that is the correct word. In other words, looking for something else uncovers nasty little beasts hiding away.
Trilled you are marching along as usual.
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Hi Dondonfoo said:Lucky man
Jeff,
I missed the whole ordeal from a couple years ago but very trilled to learn you beat the beast back. I never got comfortable not having ongoing scans and the doctors anything new is more an "opportunistic" find, if that is the correct word. In other words, looking for something else uncovers nasty little beasts hiding away.
Trilled you are marching along as usual.
Hi Don
Great to see you on the site.Yes cancer seems to want to play games with me, but like I tell others I never play the game to lose. Life goes on.
Enjoy your day
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Scans done
My husband had his scans done, neck, chest and abdomen.
Keytruda is keeping his nodules at bay in the lungs. They arent gone, some shrunk, some stayed the same. Two years on keytruda, going to keep going. He (and me) was so hoping they would be gone.
Tongue and throat looked good after visiting doc at Jefferson as well as the scan.
Issue now is prostate, his PSA has risen. (yes, he has prostate cancer as well). Liver showed some enlarged bile ducts. Go tomorrow to oncologist to "get juiced up" as my husband says and we will see what he thinks need to be done about that.
Keep safe.
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Looks Like Some
Good improvement and at least holding in a couple of areas but another problem area has reared it's ugly head. Hang in there and stay strong the positives are to be celebrated and hopefully they will have some good ideas to handle the prostate area. Prayers your way-Take Care-God Bless
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HPV- SCC spread to lungs
I am 3 treatments of Pembro in. Side effects are near zero. Scans on Oct 8th. Will update after that.
ROCK!
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HPV- SCC spread to lungs
Update 2-2021 I am sorry that I am not coming around as much as I should be. Started Pembro/Keytruda in August 2020. Scans showed diminished and some gone nodules between October and November 2020.
I have had some bleeding/ coughing blood intermittently since October 2020. The bleeding did not present a real problem (shortness of breath) until the past 2 weeks. Yesterday I had a bronchosopy cautery to stop bleeding in the airway. I came out of the procedure to see my ONC. She is trying to add Chemo next week.Carboplatin and Pacciltaxel. I am reticent until I see the latest scan comparisons 2-22-21. I have not spoken to the pulmonary doc yet. I feel much better now that my airway is cleared up. What I would love to know is: What are we talking about in survival time with this chemo? I know it will not be pleaseant, and I don't know if I will be able to work while on it. If we are talking about extending life for 6 months on chemo, with crap quality of life, I would rather not even bother. I am not feeling too badly and everyday life is not a problem for me right now. Somethimes I think that the docs just ry to plug you into a regimen without regard to your personal experience. All thoughts welcomed.
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I Would Think 1200Sportster
You could get with your care team or main doctor and tell them you want them to be completely frank with you and tell you your present status and what their best prognosis going forward is. And just present to them the questions you asked here that as to the best of their knowledge are they talking about a cure with the chemo or just extending your life and if so how long. And ask how severe the side effects are from the chemo regimen. Also, I would ask if there are any other possible options available to consider. Once you have all the facts you can make an informed decision. But I would not give up hope but think to the positive since you point out that there are nodules that are gone and others that are diminished in size so that seems like great news and you are actually making progress in fighting your illness. Don't get ready to throw in the towel yet. there is a saying we use on this forum NEGU (Never Ever Give UP) Extending Best Wishes to You going forward-Take Care-God Bless-Russ
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HPV- SCC spread to lungswbcgaruss said:I Would Think 1200Sportster
You could get with your care team or main doctor and tell them you want them to be completely frank with you and tell you your present status and what their best prognosis going forward is. And just present to them the questions you asked here that as to the best of their knowledge are they talking about a cure with the chemo or just extending your life and if so how long. And ask how severe the side effects are from the chemo regimen. Also, I would ask if there are any other possible options available to consider. Once you have all the facts you can make an informed decision. But I would not give up hope but think to the positive since you point out that there are nodules that are gone and others that are diminished in size so that seems like great news and you are actually making progress in fighting your illness. Don't get ready to throw in the towel yet. there is a saying we use on this forum NEGU (Never Ever Give UP) Extending Best Wishes to You going forward-Take Care-God Bless-Russ
Thaks Russ and Logan.
I will get the scan Monday. Talk to Oncologist after. I told the ONC that I am going to postpone the chemo for now. Have an appt with Rad ONC the week after too. The Pulmonary docsays that opening procedure can be done again in the future if needed.
My research on line does not paint a very rosy picture for this MET cancer. It is definately not cureable. I will press on the hard numbers. That is the science isn't it?
Thanks for your support!
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Glad To Support You1200Sportster said:HPV- SCC spread to lungs
Thaks Russ and Logan.
I will get the scan Monday. Talk to Oncologist after. I told the ONC that I am going to postpone the chemo for now. Have an appt with Rad ONC the week after too. The Pulmonary docsays that opening procedure can be done again in the future if needed.
My research on line does not paint a very rosy picture for this MET cancer. It is definately not cureable. I will press on the hard numbers. That is the science isn't it?
Thanks for your support!
Certainly wishing you the best-Take Care-God Bless-Russ
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