Nasopharyngeal Cancer Treatment follow-up

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Comments

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #42
    HobbsDoggy said:

    It a Slow Go And Some Back Sliding But Better Sometimes

    Like most It does get better.  After over 9 years most, but not all of my taste is back.  Mouth is still dry and sometimes swallowing is still difficult at times.  Interesting that you guys bring up tinnitus. I recently developed it.  In the last year or so.  Docs here did not find a cause and I did not think about radiation until now.  Lost hair, but that is because my Dad, bless him, was bald and so was I long before radiation.  Overall there is a lot of hope on the other side.  There is always fear about cancer now, but there is also always a lot of joy in the new lease on life we have.  

    HD,

    I seemed to have gotten saliva back, and swallowing issues are not noticeable enough to even register, when I did my list.

    It certainly was a challenge for a time, and I didn't eat for a while, without having water handy. I find I still like a lot of "sauce" with food (like a load of mayo on a sandwich).

    But overall, the improvement has been good enough that I'm happy with where I'm at!

    Thanks for all the words of encouragement. I enjoy the support I get (and am sometimes able to give), here!

    mg

  • UnDia
    UnDia Member Posts: 2
    edited April 2020 #43
    motorcycleguy said:

    HD,

    I seemed to have gotten saliva back, and swallowing issues are not noticeable enough to even register, when I did my list.

    It certainly was a challenge for a time, and I didn't eat for a while, without having water handy. I find I still like a lot of "sauce" with food (like a load of mayo on a sandwich).

    But overall, the improvement has been good enough that I'm happy with where I'm at!

    Thanks for all the words of encouragement. I enjoy the support I get (and am sometimes able to give), here!

    mg

    I'm a 59 yrs., old male diasabled US Army veteran, my "Military Occupational Specialty" (MOS) while in active duty was 13B10 - Cannon Crewmember [Hevy Field Artiliry], due to the fact I was the driver of a M110 8" S/P Howitzer. Almost all the time in service I was in the field on "Combat Stage" training, during all this time I was constantly exposed to unprocted sun light during summer and winter time.

    By any chance Sir, are you a honorable discharge US military veteran?

    If you are there is are high probabilities you may be entitle to Service-Connected benefits. Especially if your MOS was combat arms like mine. 

    I too, was Dx by private doctor with "Squamous Cell Carcinoma (Left Nasal Slope)", had MOHS & plastic surgeries.

    I filed claims to VA Affairs along with private medical documentation, lay statements from a fellow Buddy that was assigned in the same unit as I while in active duty, & family members, it took some time but finally it was "Granted" service-connected -- O% & 30%.

    Inclosing, I just have to be thankful to a Higher Power of my understanding, for being alive today & now, for my loved ones, "Dr. Bob & Bill W." fellowship meetings & my HealthCare providers.

    My must sincere wishes to you, be safe & take care.

     

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    edited April 2020 #44
    UnDia said:

    I'm a 59 yrs., old male diasabled US Army veteran, my "Military Occupational Specialty" (MOS) while in active duty was 13B10 - Cannon Crewmember [Hevy Field Artiliry], due to the fact I was the driver of a M110 8" S/P Howitzer. Almost all the time in service I was in the field on "Combat Stage" training, during all this time I was constantly exposed to unprocted sun light during summer and winter time.

    By any chance Sir, are you a honorable discharge US military veteran?

    If you are there is are high probabilities you may be entitle to Service-Connected benefits. Especially if your MOS was combat arms like mine. 

    I too, was Dx by private doctor with "Squamous Cell Carcinoma (Left Nasal Slope)", had MOHS & plastic surgeries.

    I filed claims to VA Affairs along with private medical documentation, lay statements from a fellow Buddy that was assigned in the same unit as I while in active duty, & family members, it took some time but finally it was "Granted" service-connected -- O% & 30%.

    Inclosing, I just have to be thankful to a Higher Power of my understanding, for being alive today & now, for my loved ones, "Dr. Bob & Bill W." fellowship meetings & my HealthCare providers.

    My must sincere wishes to you, be safe & take care.

     

    UnDia,

    I was an electrician in the Navy - but have no reason to believe my Cancer was related to that.

    I appreciate you asking, though.

    mg

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #45
    Blood test results - about 1 year after finishing treatment.

    I got my blood test last Friday, and after a year, my white and red blood cells are back in the acceptable range, now!

    I also got my Epstein Barr numbers, and they do NOT indicate any recurrence of Cancer!!

    As most of you know, this is always such a relief to hear!...

    I'm doing well, overall - still a little more ringing in my ears than normal, and Neuropathy in forearms, hands and bottom of feet. My weight is up - 173 pounds (was 195 before I started radiation).

    I have a LOT more energy, and overall, I feel I'm doing well!!

    Good luck to all of you - wherever you are in your treatment / recovery!...

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    edited May 2020 #46
    motorcycleguy said:

    Blood test results - about 1 year after finishing treatment.

    I got my blood test last Friday, and after a year, my white and red blood cells are back in the acceptable range, now!

    I also got my Epstein Barr numbers, and they do NOT indicate any recurrence of Cancer!!

    As most of you know, this is always such a relief to hear!...

    I'm doing well, overall - still a little more ringing in my ears than normal, and Neuropathy in forearms, hands and bottom of feet. My weight is up - 173 pounds (was 195 before I started radiation).

    I have a LOT more energy, and overall, I feel I'm doing well!!

    Good luck to all of you - wherever you are in your treatment / recovery!...

    Congratulations motorcycleguy

    That your blood tests are coming out so well and that you are feeling well and your energy is coming back. Especially glad to hear you got your Epstein Barr numbers, and they do NOT indicate any recurrence of Cancer!! Amen. Take care brother, stay safe, Take Care-God Bless

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    edited May 2020 #47
    wbcgaruss said:

    Congratulations motorcycleguy

    That your blood tests are coming out so well and that you are feeling well and your energy is coming back. Especially glad to hear you got your Epstein Barr numbers, and they do NOT indicate any recurrence of Cancer!! Amen. Take care brother, stay safe, Take Care-God Bless

    Thanks russ,

    I'm hoping the best for you, also!

    mg

  • big G
    big G Member Posts: 177 Member
    #48
    Blood test

    Nice report MG! wishing you many more.

  • ERomanO
    ERomanO Member Posts: 323 Member
    #49
    Sounds like you're doing

    Sounds like you're doing great at the one year mark, MG. Here's to another year of good reports, and many many more after that.

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    edited May 2020 #50
    I appreciate

    all the great thoughts and I sincerely wish all of you, no matter where you're at on your journey, the absolute best possible destinations!

    mg

  • PipLily
    PipLily Member Posts: 127 Member
    #51
    motorcycleguy said:

    I appreciate

    all the great thoughts and I sincerely wish all of you, no matter where you're at on your journey, the absolute best possible destinations!

    mg

    Hello!

    So good to hear you’re doing well!! I certainly appreciate all your advice early on in my husband’s journey! 

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    edited June 2020 #52
    PipLily said:

    Hello!

    So good to hear you’re doing well!! I certainly appreciate all your advice early on in my husband’s journey! 

    Thanks Pip,

    I appreciate that - and I hope you and your husband are doing well!

    mg

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    edited June 2020 #53
    PipLily said:

    Hello!

    So good to hear you’re doing well!! I certainly appreciate all your advice early on in my husband’s journey! 

    Pip,

    I've appreciated all of the positive help I've received on this site!

    mg

  • Stephie75
    Stephie75 Member Posts: 185 Member
    #54
    My apologies for bringing up this old thread

    if people don't like that around here. I was looking up what MG went through. This comment RIGHT HERE. Tonsils. Remember when we were kids and a lot of kids just went and got their tonsils out? It makes you wonder why Beagledad had to go through ALL of that to get to his tonsil and they had to use a robot. Heck, it has really been bothering me...

    Are we just people they are experienting techniques on? Why cant they simply cut out tonsils like they used to?

    I have been attempting to try to find a way to get this mass off of my vocal cord so I don't have to go through rads. It seems like it may do more harm than good on many people. I don't have any kids. I at least want some QOL. I'm only 46, so if I don't get hit by a bus, or something else doesn't kill me, there is a LONG time for the C to come back.

    No rads 2nd time......

     

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    edited November 2021 #55
    Steph,

    This actually brought back a flood of old memories and feelings - (most of them good) - thanks!

    I got my tonsils out, very early in the process.  It wasn't a robot, it was an ENT surgeon and I personally have never heard of anyone getting teeth removed for it. Ironically, it was one of the more painful parts of the whole treatment cycle. (I understand it's MUCH easier for a kid)!

    I think the idea for me, was that during my surgery, my Doctor hadn't identified the primary, yet - so he removed the tonsils to send out for biopsy. I guess that tonsils are not really necessary, and it also doesn't give the Cancer another "target" to move to. But, I'm not a Doctor - just a know-it-all engineer...

    It sounds like you're getting fitted for a mask, today. That's a pretty scary idea, being "strapped" to a table on a big machine! But, as I say - after 3 or 4 sessions, I just laid back, relaxed and listened to the Aerosmith they played for me. It didn't seem like such a big deal for 15 minutes, anymore....

    I guess what I'm saying, is that in the end, it is YOUR decision what you want to do. But, I'm a pretty firm believer in Medical Science, and the treatment I got, has kept Cancer away for a couple of years. There's no way to know what might have happened, if I hadn't gotten it.

    I think everyone has second thoughts. It's normal....

    MG

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    edited November 2021 #56
    OK Steph I Had To Go Back

    And look at your first post as I forgot if surgery was going to be involved or already happened.
    I found you had no surgery and none planned.
    What you are getting is pretty standard treatment for many H&N cancers anymore.
    I had 2 separate weeks in the hospital of 5 days of 24-hour chemo.
    They were separated by several weeks to let my blood count come back up.
    That is because my tumor in my throat was so large they were afraid doing regular treatment and applying radiation
    would in fact swell the tumor first and cut off my breathing and require a trach.
    And they wanted to avoid a trach because it was another opening and chance for infection.
    I was to get 3 of these sessions in the hospital but fervently prayed to God that this treatment would work more amazingly than anybody would imagine.
    After the second one, I went to my ENT for a follow-up and he was amazed and taken aback how much my tumor had shrunk by.
    He'd never seen anything like it.
    God answered.
    I give all the Glory to God for this.
    Now, this was in 2013.
    My ENT said then that I was lucky in a way to get this cancer now because of the advanced treatment.
    He said if you go back 10 years the only way to deal with a lot of situations like mine and other H&N cancers was to operate.
    I think he said it would have been a total laryngectomy, and maybe voice box involved, whatever they would have to
    do to get the cancer out surgically but it would have been major and traumatic.
    And of course, they took a little extra to make sure they got an adequate amount.
    So you lost a lot and it was more invasive and I believe they did the follow-up rads then also but not focused like these days
    just sort of a blanket shot of rads each time.
    I tell you all of this to tell you this.
    These days most H&N is treated with chemo and rads because then people don't have the disfigurement
    and extra problems that go along with it such as cut nerves controlling functions, cut or removed muscle 
    causing problems, and other possibilities.
    The trade-off is very strong chemo chemicals that cause their own problems like cisplatin and any of the platins
    and chemo called 5FU which many people say that pretty much describes it, mostly known as Fluorouracil (5FU).
    And the radiation as part of the trade-off causes its own problems during and after treatment.
    Read up on radiation and chemo side effects, ask your docs what kind you are getting as far as chemo types.
    This will help you prepare for the before and after possibilities you might experience.
    Here is an article on 5FU that was used a lot on H&N cancer-quite a read https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/fluorouracil
    I myself have some tinnitus and more so neuropathy from the chemo.
    From the radiation, I have greatly reduced taste and saliva, a bit of trismus, some fibrosis, and had
    swallowing issues that I received 4 dilations to open my throat more to help which it did but they can only do a small amount at a time.
    I say this to prepare you, but you will do this just like the rest of us on here we got the victory.
    Hopefully, your side effects will be minimal.
    Some on here have a little, some have a lot but we live on and deal with it.
    I always say as far as H&N treatment nobody gets away free.
    I don't think you will find anyone on this forum without at least some mild side effects after treatment.
    But we are all different, our cancers though the same or close to it are not the same, our treatments and radiation fields
    are varied so there is no exact predictable outcome in all this except you will be CANCER FREE.
    And it sure beats the alternative.
    You got this-NEGU-Take Care-God Bless-Russ


     

     

     

     

     

     

     

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