Well, a new story begins......Final Update

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  • KB56
    KB56 Member Posts: 318 Member
    #22
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    trial

    Joe, thanks for sharing and great news that you have no adverse side effects so far.    Good luck and all the best,

    Keith

  • jcortney
    jcortney Member Posts: 503
    #23
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    Quick

    Just wanted to post a quick update.  I am in week 4 and about to get my second dose (Wednesday).  So far, there have been NO negative side effects from the Keytruda.  I have had significant improvement to my tongue movement but neither I nor the doc are willing to state the new drug is the culprit.  The chances are very good that it is lingering effects from the Methotrexate.

    What I must say however, is how great I feel not having any "traditional' Chemo in my body.  I didn't realize how much the MDX effected me since I felt so much better coming off the Eributux.  But no chemo is so much better.  I feel almost human.

    So, as things happen I'll let you guys know.  Big test is week 9 when I have a CT.

    Live long and prosper :) 

    Joe

  • hwt
    hwt Member Posts: 2,328 Member
    #24
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    jcortney said:

    Quick

    Just wanted to post a quick update.  I am in week 4 and about to get my second dose (Wednesday).  So far, there have been NO negative side effects from the Keytruda.  I have had significant improvement to my tongue movement but neither I nor the doc are willing to state the new drug is the culprit.  The chances are very good that it is lingering effects from the Methotrexate.

    What I must say however, is how great I feel not having any "traditional' Chemo in my body.  I didn't realize how much the MDX effected me since I felt so much better coming off the Eributux.  But no chemo is so much better.  I feel almost human.

    So, as things happen I'll let you guys know.  Big test is week 9 when I have a CT.

    Live long and prosper :) 

    Joe

    Joe

    Continued good wishes

  • the_wife
    the_wife Member Posts: 184
    #25
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    jtl said:

    Good News

    Like everyone else on this forum, I think it is great that there are trials for this type of cancer.

    Best of luck.

    John

    Keytruda

    Thanks for sharing. This drug sounds very promising. I first heard about it in the news with Jimmy Carter's cancer. It's so encouraging to read about these new breakthoughs that are so badly needed. And to hear from others who've been treated or are going through trials on this thread is exciting. I understand they are using this drug for other cancers including head and neck, gastrointestinal, colorectal cancer, esophageal, melanoma, non-small cell lung cancer, bladder, Hodgkin lymphoma, multiple myeloma, and breast cancer. Please keep us posted and let us know how you're doing. Best of luck to you!

  • MrsBD
    MrsBD Member Posts: 615 Member
    #26
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    Thank you

    Thank you for being a trailblazer. I hope you continue to feel well and that this treatment will be the beginning of the path to a cure for you and many others.

  • wmc
    wmc Member Posts: 1,804
    #27
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    jcortney said:

    Quick

    Just wanted to post a quick update.  I am in week 4 and about to get my second dose (Wednesday).  So far, there have been NO negative side effects from the Keytruda.  I have had significant improvement to my tongue movement but neither I nor the doc are willing to state the new drug is the culprit.  The chances are very good that it is lingering effects from the Methotrexate.

    What I must say however, is how great I feel not having any "traditional' Chemo in my body.  I didn't realize how much the MDX effected me since I felt so much better coming off the Eributux.  But no chemo is so much better.  I feel almost human.

    So, as things happen I'll let you guys know.  Big test is week 9 when I have a CT.

    Live long and prosper :) 

    Joe

    Joe that is so good to hear.

    I do pray this is just what you need to beat this and with no side effects. You have been through so much, yet always stay positive and have helpped so many.

    Bill

  • phrannie51
    phrannie51 Member Posts: 4,716
    #28
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    jcortney said:

    Quick

    Just wanted to post a quick update.  I am in week 4 and about to get my second dose (Wednesday).  So far, there have been NO negative side effects from the Keytruda.  I have had significant improvement to my tongue movement but neither I nor the doc are willing to state the new drug is the culprit.  The chances are very good that it is lingering effects from the Methotrexate.

    What I must say however, is how great I feel not having any "traditional' Chemo in my body.  I didn't realize how much the MDX effected me since I felt so much better coming off the Eributux.  But no chemo is so much better.  I feel almost human.

    So, as things happen I'll let you guys know.  Big test is week 9 when I have a CT.

    Live long and prosper :) 

    Joe

    Sounds good....

    What a relief to feel almost human, huh?  That's amazing about the lack of side effects....I'm so hoping this works, cuz it sounds to me like they are using Keytruda in many different trials.

    Keepig you tucked in my pocket.

    p

  • Barbaraek
    Barbaraek Member Posts: 626
    #29
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    jcortney said:

    Quick

    Just wanted to post a quick update.  I am in week 4 and about to get my second dose (Wednesday).  So far, there have been NO negative side effects from the Keytruda.  I have had significant improvement to my tongue movement but neither I nor the doc are willing to state the new drug is the culprit.  The chances are very good that it is lingering effects from the Methotrexate.

    What I must say however, is how great I feel not having any "traditional' Chemo in my body.  I didn't realize how much the MDX effected me since I felt so much better coming off the Eributux.  But no chemo is so much better.  I feel almost human.

    So, as things happen I'll let you guys know.  Big test is week 9 when I have a CT.

    Live long and prosper :) 

    Joe

    Glad to hear you are feeling

    upbeat and that you feel nearly human. Fingers, toes, eyes, and everything else crossed for continued progress in beating the beast. Live long and prosper indeed!

    Barbara

  • jcortney
    jcortney Member Posts: 503
    #30
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    Update 2

    Ok folks, not much to report here but wanted to keep you up to date.

    I've now finished 2 infusions of Keytruda and had a CT.  The area around my reoccurrence (large tumor under tongue wrapped around the muscle and tumors in my thyroid and lymph nodes) is stable.  You might remember that Methotrexate reduced the size of these tumors considerably and there was some growth in the lymph nodes in my last CT 7 weeks ago.  Tongue mobility is MUCH improved.  Swallowing has taken a hit as I had a tooth abscess and had to have it pulled.  Had some drama after the surgery that kept me from eating or swallowing almost anything, but that's past.

    There has been some enlargement of the suspect area's in the chest.  What we don't know is what is cancer and what is infection.  Between the bronchitis during Christmas and the oral surgery, aspiration has been extensive.  So, don't really know what is what.

    So, no great result from the Keytruda but they tell me it often takes a few cycles (each 9 weeks) to know if it works or not.  Next update in 7 weeks when I am scanned again.  The scans, drugs and blood work are all on a very set schedule as mandated by the trial.

    Take care folks,

    Joe

  • Barbaraek
    Barbaraek Member Posts: 626
    #31
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    jcortney said:

    Update 2

    Ok folks, not much to report here but wanted to keep you up to date.

    I've now finished 2 infusions of Keytruda and had a CT.  The area around my reoccurrence (large tumor under tongue wrapped around the muscle and tumors in my thyroid and lymph nodes) is stable.  You might remember that Methotrexate reduced the size of these tumors considerably and there was some growth in the lymph nodes in my last CT 7 weeks ago.  Tongue mobility is MUCH improved.  Swallowing has taken a hit as I had a tooth abscess and had to have it pulled.  Had some drama after the surgery that kept me from eating or swallowing almost anything, but that's past.

    There has been some enlargement of the suspect area's in the chest.  What we don't know is what is cancer and what is infection.  Between the bronchitis during Christmas and the oral surgery, aspiration has been extensive.  So, don't really know what is what.

    So, no great result from the Keytruda but they tell me it often takes a few cycles (each 9 weeks) to know if it works or not.  Next update in 7 weeks when I am scanned again.  The scans, drugs and blood work are all on a very set schedule as mandated by the trial.

    Take care folks,

    Joe

    Thinking of you Joe

    as you continue blazing a trail and hoping for the very best.

    Barbara

  • wmc
    wmc Member Posts: 1,804
    #32
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    jcortney said:

    Update 2

    Ok folks, not much to report here but wanted to keep you up to date.

    I've now finished 2 infusions of Keytruda and had a CT.  The area around my reoccurrence (large tumor under tongue wrapped around the muscle and tumors in my thyroid and lymph nodes) is stable.  You might remember that Methotrexate reduced the size of these tumors considerably and there was some growth in the lymph nodes in my last CT 7 weeks ago.  Tongue mobility is MUCH improved.  Swallowing has taken a hit as I had a tooth abscess and had to have it pulled.  Had some drama after the surgery that kept me from eating or swallowing almost anything, but that's past.

    There has been some enlargement of the suspect area's in the chest.  What we don't know is what is cancer and what is infection.  Between the bronchitis during Christmas and the oral surgery, aspiration has been extensive.  So, don't really know what is what.

    So, no great result from the Keytruda but they tell me it often takes a few cycles (each 9 weeks) to know if it works or not.  Next update in 7 weeks when I am scanned again.  The scans, drugs and blood work are all on a very set schedule as mandated by the trial.

    Take care folks,

    Joe

    Thank you Joe

    Thanks for keeping us updated. We have our fingers crossed and prayers as well. Hoping for shrinkage, reducing, and gone.

    Bill

  • corleone
    corleone Member Posts: 312 Member
    #33
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    jcortney said:

    Update 2

    Ok folks, not much to report here but wanted to keep you up to date.

    I've now finished 2 infusions of Keytruda and had a CT.  The area around my reoccurrence (large tumor under tongue wrapped around the muscle and tumors in my thyroid and lymph nodes) is stable.  You might remember that Methotrexate reduced the size of these tumors considerably and there was some growth in the lymph nodes in my last CT 7 weeks ago.  Tongue mobility is MUCH improved.  Swallowing has taken a hit as I had a tooth abscess and had to have it pulled.  Had some drama after the surgery that kept me from eating or swallowing almost anything, but that's past.

    There has been some enlargement of the suspect area's in the chest.  What we don't know is what is cancer and what is infection.  Between the bronchitis during Christmas and the oral surgery, aspiration has been extensive.  So, don't really know what is what.

    So, no great result from the Keytruda but they tell me it often takes a few cycles (each 9 weeks) to know if it works or not.  Next update in 7 weeks when I am scanned again.  The scans, drugs and blood work are all on a very set schedule as mandated by the trial.

    Take care folks,

    Joe

    Hi Joe

     

    Thanks for the updates. Although the research team might be well aware of that, they should watch for pseudo-progression (in reference to the enlargement in the chest). This can happen with immunotherapy, when the immune cells invade the area and cause inflammation in the area that might appear enlarged. Only after the following CT (RECIST) assessment they can definitely say if it’s a real progression or not.

     

    Glad you are doing well. Hope for the best.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #34
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    jcortney said:

    Update 2

    Ok folks, not much to report here but wanted to keep you up to date.

    I've now finished 2 infusions of Keytruda and had a CT.  The area around my reoccurrence (large tumor under tongue wrapped around the muscle and tumors in my thyroid and lymph nodes) is stable.  You might remember that Methotrexate reduced the size of these tumors considerably and there was some growth in the lymph nodes in my last CT 7 weeks ago.  Tongue mobility is MUCH improved.  Swallowing has taken a hit as I had a tooth abscess and had to have it pulled.  Had some drama after the surgery that kept me from eating or swallowing almost anything, but that's past.

    There has been some enlargement of the suspect area's in the chest.  What we don't know is what is cancer and what is infection.  Between the bronchitis during Christmas and the oral surgery, aspiration has been extensive.  So, don't really know what is what.

    So, no great result from the Keytruda but they tell me it often takes a few cycles (each 9 weeks) to know if it works or not.  Next update in 7 weeks when I am scanned again.  The scans, drugs and blood work are all on a very set schedule as mandated by the trial.

    Take care folks,

    Joe

    Hey Joe!

    I've been thinking about you, knowing that there would be an update pretty quick....and here you are.  You sound chipper in spite of the swallowing problems and the aspiration.  I am SO praying that the suspect area is Keytruda in there kicking the crap out of that tumor...inflammation from the fight. 

    As always....I have you tucked in my pocket....and sending positive thoughts times 10,000.

    p

  • MrsBD
    MrsBD Member Posts: 615 Member
    #35
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    Thank you

    Thank you for the update. I've read some very hopeful articles about Keytruda and H&N cancers. You continue to be in my prayers. 

  • donfoo
    donfoo Member Posts: 1,771 Member
    #36
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    jcortney said:

    Update 2

    Ok folks, not much to report here but wanted to keep you up to date.

    I've now finished 2 infusions of Keytruda and had a CT.  The area around my reoccurrence (large tumor under tongue wrapped around the muscle and tumors in my thyroid and lymph nodes) is stable.  You might remember that Methotrexate reduced the size of these tumors considerably and there was some growth in the lymph nodes in my last CT 7 weeks ago.  Tongue mobility is MUCH improved.  Swallowing has taken a hit as I had a tooth abscess and had to have it pulled.  Had some drama after the surgery that kept me from eating or swallowing almost anything, but that's past.

    There has been some enlargement of the suspect area's in the chest.  What we don't know is what is cancer and what is infection.  Between the bronchitis during Christmas and the oral surgery, aspiration has been extensive.  So, don't really know what is what.

    So, no great result from the Keytruda but they tell me it often takes a few cycles (each 9 weeks) to know if it works or not.  Next update in 7 weeks when I am scanned again.  The scans, drugs and blood work are all on a very set schedule as mandated by the trial.

    Take care folks,

    Joe

    nice to get the update

    Glad to hear the update, Joe. Hoping to hear good news as the trial progresses. And as you mention, spots on lungs can be caused by many different things. Just curious - was there any discussion about HBOT before the extraction?

  • jcortney
    jcortney Member Posts: 503
    #37
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    donfoo said:

    nice to get the update

    Glad to hear the update, Joe. Hoping to hear good news as the trial progresses. And as you mention, spots on lungs can be caused by many different things. Just curious - was there any discussion about HBOT before the extraction?

    HBOT?

    Not sure what that is.

    J.

  • donfoo
    donfoo Member Posts: 1,771 Member
    #38
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    jcortney said:

    HBOT?

    Not sure what that is.

    J.

    HBOT = HyperBaric Oxygen Treatment

    common to prepare body for major dental extractions

  • katenorwood
    katenorwood Member Posts: 1,912
    #39
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    fighter

    Joe,

    Not  on here much anymore.  But I've been thinking only positives for you !  Katie

  • jcortney
    jcortney Member Posts: 503
    #40
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    donfoo said:

    HBOT = HyperBaric Oxygen Treatment

    common to prepare body for major dental extractions

    Nope

    Mine should have been a root canal but I just took too long to get it looked at.  My Dentist, on Oncology specialist, had it out in 15 minutes.  The problem came later when I sucked the blood clot out while sleeping leaving a "dry socket".  That's basically where the bone and nerve are exposed.  It took about 10 days for me to get back to him, the pain was pretty intense, and a week later it was all gone.  It's just the week before and the two weeks after made eating a real challenge.

    Good to hear from you Don.

    J.

  • jcortney
    jcortney Member Posts: 503
    #41
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    katenorwood said:

    fighter

    Joe,

    Not  on here much anymore.  But I've been thinking only positives for you !  Katie

    Thanks Kate.
    Hope you are ok

    Thanks Kate.

    Hope you are ok too.

    J.

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