one year anniversary

ricksmithgolfer
ricksmithgolfer Member Posts: 88 Member
in Head and Neck Cancer #1

Today is my one year anniversary since finishing my treatment for stage 1 HPV 16 Tonsil Cancer with mets to 3 lymph nodes in level 1. The old staging would of been stage 4a. Had Pet Scan 4 months after treatment and was NED. The cancer was only on the right side. My treatment consisted of 35 rads and 3 high dose Cisplatin treatments. No surgery was required. I had 70 greys to the right side and as a precautionay measure 54 greys to the left side. I consider myself very lucky to have made it thru the whole treatment in pretty good shape versus some of the other warriors on this site. I think the worst part for me was losing my taste and saliva. I never lost the physical ability to eat but I could not eat solid food because of the loss of taste. I survived on Boost 360. I tried the 540 calorie one and did not like it. Before starting treatment I gained 20 pounds and during treatment lost 30 pounds. Currently I have gained all my weight back plus some. I really do not need the plus some.

I currently visit my ENT and Chemo Oncologist every 3 months and all looks great at this point. My Radiation Oncologist released me from his care. I also see my dentist every 3 months and all is good so far. I had excellent teeth going into this. Hopefully, that will continue with my quarterly dental visits and my daily 1 % flouride treatments.

As I indicated above my taste and saliva took a big hit during treatment. Currently, if I had to estimate how much of both I have recovered I would say about 80 percent of both taste and saliva. After treatment I could not tell the difference between salt and sugar. Some things taste normal to me and many taste somewhat different. For me Bacon tastes the most normal of everything I eat. I also drink a ton of Milk now. I am 66 years old now and have not consumed much milk in years. My taste for sweets is coming back somewhat. Nothing on the sweet side tastes as good as it used to. So far, I am very pleased with my progress in the taste category as a whole. As far as Saliva goes, my Radiation Oncologist was very optimistic about how much saliva I would get back. Based upon his radiation plan for my treatment he said I should get about 80 percent of my saliva back. So far he is right on that target. Hopefully, I do not go backwards on taste and saliva functions.

 

During treatment I did get the ringing in the ears and that is currently gone. My hearing has definitely taken a hit. I have tough times hearing when there is alot of background noise. About 2 months after treatment I developed some neuropothy in my toes. That is also gone now with no medication taken. It just disappeared one day. Other than that I really did not have any other side effects. Well, maybe a little chemo brain from time to time.

Even though I have not posted much I am on this site just about everyday following everyone. I was very blessed and found this site 4 weeks before I started my treatment. I learned so much from all the folks on here. It made my journey much easier. Again, I know how lucky I was with how well I made it thru this terrible treatment process. It is by far the hardest thing I have ever done in my life. Hopefully, with all the research being done, especially for HPV cancers they can scale the treatments back and limit the side effects.

God bless all my fellow cancer warriors and take care.

 

Rick

Comments

  • Logan51
    Logan51 Member Posts: 470 Member
    #2
    Thank you and Congratulations

    Rick

    I thank you because of your being specific about the gys applied to the right and left. "70" caught my eye and seems alarming to me, so I looked again at my Rad Dr.'s final report from back in April of 2009.

    Question I really hope you answer: how many places/zappings were the Rads applied? I was unknown Primary Nasopharyngeal and got zapped in 20 places. I used to count them down on every session. I ask because your answer will give me the bottom-line info on how much Radiation I received. My Chemo Dr. advised me not to have any more PETs after my 3-year, telling me I've already had too much Radiation.

    I've always just said I got 68gys, but it turns out that was just to "all the nodes" on the lower-left side of my neck. The other areas got 56gys. My last 3 sessions only consisted of 4 zappings to that lower-left, which may be the 68, because the Dr. also has 60gys listed to the entire left side of my neck.

    If you answer the above question you will be doing me a big favor- because of the post-tx side-effects that now has me on a FT for the rest of my life. I've experienced the typical loss of saliva and gum tissue in the mouth, but have also been under a Neurologist's care for 6-7 years due to the neck spasms on both sides- though the worst by far are on the right side. And the 68 applied to my lower neck does explain the scar tissue that is the reason for the FT.

    I am hoping like the dickens you were not zapped in as many places/session, and your long term side-effects are nothing compared to mine and some others on the forum. I should inform you, though: my Dentist in the Quad Cities is hooked-up with the U of Iowa, and has told me 60 is the mark they use to determine if one is a candidate for Osteoradionecrosis down the road. He thought I got 68 in my jaw area, but when I look at the report now- looks like I got 56gys there, which is a bit of a relief to me, and tells me he misunderstood the Rad Dr.'s final report.

    Anyway, congratulations for being a year out to the good, Rick. 

  • Sabrina23
    Sabrina23 Member Posts: 103 Member
    #3
    Congrats on your one year NED

    So happy for you Rick on your one year NED you reached a milestone.  You have my prayers and thoughts as does everyone else on thtis special forum to stay NED and have a long healthy and happy life.  I too feel blessed to be a part of this forum as I found it too when I was going thru the rough road of diagnosis and surgery and all that goes with it.  This forum gives you strength, you feel loved and everyone is so caring and glad you are a part of it too!  Hope the hearing restores itself to full capacity. 

     

    Best wishes, Sabrina 

  • ricksmithgolfer
    ricksmithgolfer Member Posts: 88 Member
    #4
    Logan51 said:

    Thank you and Congratulations

    Rick

    I thank you because of your being specific about the gys applied to the right and left. "70" caught my eye and seems alarming to me, so I looked again at my Rad Dr.'s final report from back in April of 2009.

    Question I really hope you answer: how many places/zappings were the Rads applied? I was unknown Primary Nasopharyngeal and got zapped in 20 places. I used to count them down on every session. I ask because your answer will give me the bottom-line info on how much Radiation I received. My Chemo Dr. advised me not to have any more PETs after my 3-year, telling me I've already had too much Radiation.

    I've always just said I got 68gys, but it turns out that was just to "all the nodes" on the lower-left side of my neck. The other areas got 56gys. My last 3 sessions only consisted of 4 zappings to that lower-left, which may be the 68, because the Dr. also has 60gys listed to the entire left side of my neck.

    If you answer the above question you will be doing me a big favor- because of the post-tx side-effects that now has me on a FT for the rest of my life. I've experienced the typical loss of saliva and gum tissue in the mouth, but have also been under a Neurologist's care for 6-7 years due to the neck spasms on both sides- though the worst by far are on the right side. And the 68 applied to my lower neck does explain the scar tissue that is the reason for the FT.

    I am hoping like the dickens you were not zapped in as many places/session, and your long term side-effects are nothing compared to mine and some others on the forum. I should inform you, though: my Dentist in the Quad Cities is hooked-up with the U of Iowa, and has told me 60 is the mark they use to determine if one is a candidate for Osteoradionecrosis down the road. He thought I got 68 in my jaw area, but when I look at the report now- looks like I got 56gys there, which is a bit of a relief to me, and tells me he misunderstood the Rad Dr.'s final report.

    Anyway, congratulations for being a year out to the good, Rick. 

    Rads

    Hi Dave,

    I do not know for sure how many places I got zapped. I can tell you that my right tonsil was the primary and I had 3 nodes with cancer in the right upper part of my neck. (known as level 1) The nodes were never really swollen and I never felt them when the cancer was there. My actual treatment time once the machine started was about 15 minutes. If I had to guess by the way the machine moved around me I would say I got zapped 5-6 times on each side. My Radiation Oncologist is a very analytical guy and he takes alot of time putting the plan / calibrations into the machine. Halfway thru my rads he even redid the plan according to how the results were going to limit any side effects. I'm sure he told me the info you are looking for and I will try to see if I can find it somewhere in all my paperwork. There are so many calculations put into these radiation plans now. My Rads doc said the biggest improvement in the technology is not so much the actual radiation machine but in the software being used now. They can really work around certain areas now without causing the damage they used to. I know he talked about hitting certain areas with only so many greys like the saliva glands to limit side effects. I can tell you my right tonsil filled the whole right side of my throat all the way out to the uvula. About half way thru the treatment the tonsil was just about melted away. In fact, right now you can't even see any signs that anything was even there. I have been following all your posts and I hope you are doing ok. I know you have had a tough time and you are in my prayers. Take care. Rick

  • ricksmithgolfer
    ricksmithgolfer Member Posts: 88 Member
    #5
    Sabrina23 said:

    Congrats on your one year NED

    So happy for you Rick on your one year NED you reached a milestone.  You have my prayers and thoughts as does everyone else on thtis special forum to stay NED and have a long healthy and happy life.  I too feel blessed to be a part of this forum as I found it too when I was going thru the rough road of diagnosis and surgery and all that goes with it.  This forum gives you strength, you feel loved and everyone is so caring and glad you are a part of it too!  Hope the hearing restores itself to full capacity. 

     

    Best wishes, Sabrina 

    Thankyou Sabrina.

    Thankyou Sabrina.

  • Logan51
    Logan51 Member Posts: 470 Member
    #6
    ricksmithgolfer said:

    Rads

    Hi Dave,

    I do not know for sure how many places I got zapped. I can tell you that my right tonsil was the primary and I had 3 nodes with cancer in the right upper part of my neck. (known as level 1) The nodes were never really swollen and I never felt them when the cancer was there. My actual treatment time once the machine started was about 15 minutes. If I had to guess by the way the machine moved around me I would say I got zapped 5-6 times on each side. My Radiation Oncologist is a very analytical guy and he takes alot of time putting the plan / calibrations into the machine. Halfway thru my rads he even redid the plan according to how the results were going to limit any side effects. I'm sure he told me the info you are looking for and I will try to see if I can find it somewhere in all my paperwork. There are so many calculations put into these radiation plans now. My Rads doc said the biggest improvement in the technology is not so much the actual radiation machine but in the software being used now. They can really work around certain areas now without causing the damage they used to. I know he talked about hitting certain areas with only so many greys like the saliva glands to limit side effects. I can tell you my right tonsil filled the whole right side of my throat all the way out to the uvula. About half way thru the treatment the tonsil was just about melted away. In fact, right now you can't even see any signs that anything was even there. I have been following all your posts and I hope you are doing ok. I know you have had a tough time and you are in my prayers. Take care. Rick

    Thank you

    Rick

    Thanks for the info. This forum is not only for support, but also for information. On the one post I just learned it is law every Health Insurance Co. has to pay for all the Jevity if One is FT dependent, for instance. And 10 years ago Delnative (who personally knew Joe Biden) helped me so much with info on the mouth issues I was having. Thanks to this forum I've been able to inform PCPs and others about C tx and post-tx issues!

    I'm so glad to hear you did not get zapped at the base of the throat, Rick, so you won't have to deal with a FT for life. You might want to ask your Rad Dr. about the amount of Rads your jaw area received. Dentist told me if Osteoradionecrosis is in play they can do things to help- was the reason why I had one of my post-tx root canals with an Endodontist. And yes, it does sound like your Rad Dr. is on the ball with limiting the zaps to the Saliva glands. More and more I wish I had gone to the U of Iowa for my tx...

     

  • ERomanO
    ERomanO Member Posts: 323 Member
    edited September 2019 #7
    Congrats, Rick!

    I'm just a little ahead of you at 15 months.  Although my cancer was BOT, a lot of what you experienced mirrors my own experience.  

    I didn't discover this forum until I was several months post Tx.  I wish I had seen it while I was going through treatments, but in hindsight I think I did pretty well.

    Here's wishing you and all other members many years of NED.  Maybe CivilMatt will add you to his NED moon. :)

  • ricksmithgolfer
    ricksmithgolfer Member Posts: 88 Member
    #8
    ERomanO said:

    Congrats, Rick!

    I'm just a little ahead of you at 15 months.  Although my cancer was BOT, a lot of what you experienced mirrors my own experience.  

    I didn't discover this forum until I was several months post Tx.  I wish I had seen it while I was going through treatments, but in hindsight I think I did pretty well.

    Here's wishing you and all other members many years of NED.  Maybe CivilMatt will add you to his NED moon. :)

    Thanks Eugene. I have read

    Thanks Eugene. I have read all your posts thru the months and I know we both seemed to make it thru our treatments with about the same side effects. I think we were both blessed on the severity of our side effects. Don't get me wrong, the treatment was one of the haredest things I have ever done. Here's to our continued NED and all of our fellow cancer warriors out there. God bless.

    Rick

  • big G
    big G Member Posts: 177 Member
    #9
    NED!

    Great news on the one year Rick Smith, glad you made that milestone on hoping many more for you and everyone on this forum.

  • ricksmithgolfer
    ricksmithgolfer Member Posts: 88 Member
    edited September 2019 #10
    big G said:

    NED!

    Great news on the one year Rick Smith, glad you made that milestone on hoping many more for you and everyone on this forum.

    Thanks big G

    Thanks big G

  • Chicklette
    Chicklette Member Posts: 225
    #11
    Awesome!

    Congratulations on on year NED! :)

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited September 2019 #12
    This is turning out to be a pretty good day.

    ricksmithgolfer,

    It is always nice to hear about a H&N member’s NED.

    Congratulations onYear One.

    Matt

    rsg

  • ricksmithgolfer
    ricksmithgolfer Member Posts: 88 Member
    #13
    CivilMatt said:

    This is turning out to be a pretty good day.

    ricksmithgolfer,

    It is always nice to hear about a H&N member’s NED.

    Congratulations onYear One.

    Matt

    rsg

    Thanks Matt. Love the special

    Thanks Matt. Love the special sign.

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