And so my Journey Begins . . .

245

Comments

  • steven59
    steven59 Member Posts: 102 Member
    #22

    Am I the only one who lost his nerve before the 10 minutes was done? I got through but when they put it back on for the ct I lasted about 5 seconds and started yelping for them to take it off.

  • steven59
    steven59 Member Posts: 102 Member
    #23


  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #24

    Steven, I can't imagine you are the only one to be upset about the mask but I hope you got your head together and beat this so you can move forward and get the necessary treatments.

    Take Care God Bless-Russ

  • godzilla1964
    godzilla1964 Member Posts: 48 Member
    #25

    2 Dec 2022 Update: Got start date for chemo today, 9th of Dec. Should start radiation on the 12th of Dec. Basically right on the timeline that I wanted. So 3 chemo's and 30 rad's coming up. I've put on 13 pounds for this and that's where I'm going to stop for now. Talk about uncomfortable! If I lose 30 pounds throughout this then I'm right at 155 which is suppose to be my ideal weight. So far so good . . . .

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #26

    Very good GZ, it sounds like everything is all set up and on schedule and you sound comfortable, confident, and ready to get started and get this done and be cancer free. I pray for God's Blessings on you and strengthening to fight this battle, encouragement to keep a positive attitude and keep going no matter the circumstances, and healing for post-treatment recovery.

    Wishing You the Best

    Take Care God Bless-Russ

    53_300x300_Front_Color-NA.jpg


  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member
    #27

    Best of luck to you GZ. I'll be following along on your progress. I have my PET scan this Friday 12/9 and TORS surgery with a left neck dissection on the 12th. I think there is future radiation in my care plan too but the doc has to get in there and see what's what. I'm hoping my PET shows no distant spread and its just left tonsil and/or base of tongue primary for me but I'll deal with whatever happens. This board has helped me a ton and made me realize we are not alone in this fight and it can be won.

  • godzilla1964
    godzilla1964 Member Posts: 48 Member
    #28

    16 Dec 2022 Update: Well 1 week down. 1 chemo and 5 Rads. Chemo was all day affair with 210 mil's of cisplatin pumped in me over 3+ hours. I fasted (water only) total of 60 hours, 36/24. Lost 4 pounds doing so. Did this based on research that it might protect my healthy cells, expose cancer cells more, and mitigate symptoms of the chemo itself. Day after chemo was fine. Days 3, 4, 5 had some nausea but nothing to really speak of. If anything I have what one would call a sour stomach and some constipation. Taking some miralax and tums with gas relief per the radiologist. Appetite is just blah with that taste that stays in your mouth. I rinse 3 times a day with the baking soda/salt/water mix to try and stay ahead of the curve. Still doing my neck/mouth stretches and walking two miles after the rads. My hearing is dull, almost like being underwater. Got some ringing in the ears too but nothing bad so far. Other than that it's just lack of sleep for now.

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #29

    Mr. Zilla, congratulations on your first week of treatment finished. This is the introductory time of our exposure to cancer treatment and with it, we realize we can do this and make any adjustments we need to make for the second week. I am hoping your fasting strategy has its intended effect. It appears you are having some normal mild reactions to the treatment and certainly not out of the ordinary. Thank you for the update. Now you can catch up on your rest over the weekend.

    Take Care God Bless-Russ

  • godzilla1964
    godzilla1964 Member Posts: 48 Member
    #30

    25 Dec 2022 Update: Well second week of radiation is done. Chemo side effect with my hearing is gone for now. Sleep is back to normal. As far as the throat goes swallowing started to be uncomfortable after the 9th rad treatment. Doesn't hurt as it's just slightly uncomfortable lump in throat. Still on solid foods and still have my sense of taste. My weight has stayed the same prior to first chemo and I hope to keep it that way until the 3rd week of rads and the 2nd chemo are done. The swelling in lymph node is gone, chemo really knocked it down, and the Radiologist says due to this they might duo a re-imaging next week. Still lotioning and stretching neck, jaw, and now tongue. So far so good . . . .

  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member
    #31
    https://csn.cancer.org/discussion/comment/1702586#Comment_1702586

    Glad to hear you are tolerating the treatments relatively well. Merry Christmas!

  • steven59
    steven59 Member Posts: 102 Member
    edited December 2022 #32

    Do you mind saying what type of radiation you're getting? imrt/igrt or Proton? thank you

  • godzilla1964
    godzilla1964 Member Posts: 48 Member
    #33
    https://csn.cancer.org/discussion/comment/1702608#Comment_1702608

    VMAT, an advanced form of IMRT in which a single or multiple radiation beams sweep in arcs around the patient rather than remaining static. VMAT delivers a high-powered, targeted dose of radiation with minimal damage to surrounding tissue and critical anatomy.

  • Logan51
    Logan51 Member Posts: 468 Member
    #34

    lucky you with that form of Rads.

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #35

    Very good I think this video may be what you describe at least it sounds like it.

    Take Care God Bless-Russ

    https://vimeo.com/78791415


  • steven59
    steven59 Member Posts: 102 Member
    #36

    I'm sorry for your hearing loss, hopefully it's a temporary side effect. Having your taste is good, how's the saliva?

  • godzilla1964
    godzilla1964 Member Posts: 48 Member
    #37
    https://csn.cancer.org/discussion/comment/1702620#Comment_1702620

    Hearing is back to normal. Saliva is still good but has thickened in the last couple of days.

  • godzilla1964
    godzilla1964 Member Posts: 48 Member
    #38
    https://csn.cancer.org/discussion/comment/1702614#Comment_1702614

    That's VMAT. For me the machine goes around once imaging to make sure it's all lined up and knows where the turmor/tumors are. Then is goes around twice more doing the radiation, 50 seconds a pop. VMAT allows it to be more accurate, more power, and a lot quicker when treating. I'm in the mask like 10 minutes max.

  • steven59
    steven59 Member Posts: 102 Member
    #39

    Radixact is the machine i'm getting. 3 weeks down and I gotta say the first 2 were a cakewalk, this last week not so much.

  • Logan51
    Logan51 Member Posts: 468 Member
    #40

    Hope this helps you deal with what we've all be thru, Godzilla.

  • godzilla1964
    godzilla1964 Member Posts: 48 Member
    #41

    1 Jan 2023 Update: Have reached the halfway point in my treatment, 2 chemo’s and 14 rads, and I have to say I’m fairly happy where I am currently at (knock on wood). Week 3 had 4 rads followed by 2nd chemo. Before 1st chemo my WBC count was 5.4. Before my 2nd it was 2.1 so Oncologist took 25% off this chemo (165 mils vs 220 last time) due to the low WBC count. WBC range is 4.5-11.0 . Funny thing is my wife was diagnosed with RSV two days after my first chemo. Didn’t get RSV and she’s fine now. I've always had a strong immune system prior to all this so we'll see were it goes I guess though I will be more careful than usual. I have a navage and use it twice a week.

    Chemo side effects:

    1.   Fasted again before 2nd chemo – have maintained my weight thru week 3. Oncologist and Radiologist both pleased with that.

    2.   Fatigue: Don’t really have any to date.

    3.   Hearing: Some slight ringing this time but underwater effect gone for now.

    4.   Sneezing: Just connected the 1st and 2nd chemo’s. Sneezed for the first day after chemo both times. Weird.

    5.   Sleep is still normal. Getting up 3 or 4 times a night to pee but drinking a lot of water to stay hydrated and help kidneys.

    6.   Hair: Now starting to lose hair. Personally I think it’s kind of funny . . .

    Rad side effects:

    1.   Swallowing: Still a little difficult but I had a Swiss mushroom cheeseburger today with no real problems.

    2.   Still on solid foods and still have my sense of taste but may be losing some of it now.

    Again my weight has stayed the same so very happy with that. The swelling in lymph node is just about gone, chemo really knocked it down, and the Radiologist is doing a re-imaging on the 4th due to the shrinkage and may adjust my rad plan. Still lotioning, stretching neck, jaw, and tongue. Still gargling 3 times a day with the baking soda/salt mix. I've added a aloe vera mouthwash this week that I use two times a day. So I'm at what I consider my halfway point in treatments.

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