And so my Journey Begins . . .

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Comments

  • godzilla1964
    godzilla1964 Member Posts: 48 Member

    Reading about everyone here really helped me develop a pro-active plan which I think is better than I had hoped so far.

  • godzilla1964
    godzilla1964 Member Posts: 48 Member

    Looks like they took VMAT to the next level.

  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member

    Same here. The docs do a great job of explaining the procedures but not so much on what to expect after and how to deal with it. Everyone on here had been very helpful and im better prepared because of it.

  • zimrx17
    zimrx17 Member Posts: 9 Member

    I didn't have sneezing, but for a day or two after getting chemo I would hiccup non stop. It was horrible. Looks like you are doing great at all of the extra stuff to keep you ahead of the game!!

  • godzilla1964
    godzilla1964 Member Posts: 48 Member

    8 Jan 2023 Update: So I'm now done with 2/3's of my treatment with two weeks to go (1 chemo and 10 rads). Chemo #2 after effects were the same as my first chemo. Sour stomach C+5 to 7 and fitful sleep thru C+7. Other than that nothing much. Slept well last night and that makes a big difference. Still have plenty of saliva but it's thickens pretty quick. My sense of taste finally disappeared two days ago so "everything tastes like nothing". This is where the weight loss will occur IMO cause it's not that you can't eat, you just don't want to. I'm probably going to switch over to just high calorie protien drinks so that I'll actually like food when taste comes back. I've lost 6 pounds of the weight I put on prior to treatment so I'm still a +6 starting week 5 though I will admit I feel better having lost that weight. Other than that I'm still stetching, lotioning, using the rinses, brushing teeth at least twice a day, etc. They did do a re-imaging and are changing the rad plan to match progress so far. As the tumors shrink the area spreads out some which they re-image and re-adjust for in the rad plan. I believe I'll start the "adjusted" plan on Monday (tomorrow).

  • steven59
    steven59 Member Posts: 102 Member

    That sounds like you're responding well to treatment and I'm happy for you. My cancer center took Mondays off over the holidays and I started on a tuesday so even though I'm starting week 5 tomorrow I only have 17 rads done, honestly it's been a relief as my cancer was on both sides it's being treated as such. I do have confidence in the team managing my cancer and trust them when I'm told all my radiation side effects are temporary as I expect will be the same with you

  • godzilla1964
    godzilla1964 Member Posts: 48 Member

    Same here on the actual schedule ( except 18 rads completed) but I hardwired my brain for six weeks of treatment. The last two are actually on a mon/tue after a Friday chemo but I'm sticking with six weeks total for peace of mind 😉. My rad treatments are on both sides too "just in case" even though PET scan showed negative on right side.

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member

    Mr. Zilla sounds like you are doing well as can be with the treatment you are receiving and maybe a little better than expected. I think it is great that they do a re-imaging and are changing the rad plan to match your progress so far. I have never heard of that but it may be something cancer centers are implementing recently or may have been doing it in some cases but I don't ever remember of anyone having it done. Sounds like a great idea and should be a real benefit to you in respect of making sure they eradicate all the cancer.

    Take Care God Bless-Russ




  • godzilla1964
    godzilla1964 Member Posts: 48 Member

    Had my weekly meeting with the radiologist. He said that roughly 50% of patients get re-imaged in VMAT IMRT. The re-imaging isn't at a "diagnostic" level though just a CT scan if you will. At the time of the re-imaging last week (roughly half way point) he said the lymph node tumour had shrunk 70%ish. The BoT tumour will require a disgnostic level scan for it's determination when treatments are done. My new radiation plan goes into effect tomorrow for the last nine sessions. Overall I'm doing and feeling pretty good. The loss of taste is what sucks.

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member

    Thank you for explaining the reimaging process and the level of it, good to know new information always because it may help someone. If nothing else it gives them a picture of progress and the effectiveness of the treatment so far and it sounds like they can change the treatment if needed so this can be a valuable tool. Nine sessions left to go will be over before you know it. Certainly not easy to look forward to but look a little further to the finish line and you have something to look forward to. I am glad you are doing well and I know lack of taste is not very nice but at least it's temporary.

    Wishing You the Best with your last 9 treatments and the finish line.

    Take care, God Bless-Russ

  • godzilla1964
    godzilla1964 Member Posts: 48 Member

    8 Jan 2023 Update: Week 5 of concurrent therapy complete. The new rad plan has been implemented. So 1 week with a chemo to go plus 2 rads tacked on due to the holidays. Nothing new to report just "lather, rinse, repeat" right now. Still doing all my routines. I have wondered how much of a difference or effect it is during chemo/rad for those of us that did not have any surgery prior to therapy to those of you who have. It would seem a lot from reading other members.

  • steven59
    steven59 Member Posts: 102 Member

    the surgery does its share of damage for sure. I have a buddy that had chemo and 60 rad treatments for 'a big ugly tumor' in his throat and while he did get a feeding tube he said the radiation wasn't that bad. I just finished 22 rads with 8 to go and my neck is showing 2nd degree burns on the skin and nausea kicked in after 20 treatments, the oxy that put me on mt butt after surgery don't seem to work anymore, so maybe it's surgery, skin sensitivity, or dose idk, just that the therapy i was taught keeps me able to swallow thru it all.

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    edited January 2023 #54

    Mr. Zilla and Steven you guys are on the home stretch of your treatment. Hang in there for sometimes rough weeks of recovery, but it varies by person, and before you know it you will be feeling better.

    Wishing You the Best

    Take care, God Bless-Russ



  • steven59
    steven59 Member Posts: 102 Member

    thanks Russ

  • steven59
    steven59 Member Posts: 102 Member

    thanks Russ

  • godzilla1964
    godzilla1964 Member Posts: 48 Member

    24Jan 2023 Update: Concurrent therapy complete! 3 chemo's and 30 rads (actually equivalent of 33 as radiologist dosed me a little extra each session). So 2 bells rung, one Friday for chemo and one today for radiation. Got to keep my mask as a trophy. Symptoms/effects have gone from mild to moderate in the last few days but should subsided in 2 to 3 weeks they say. Eventually it all catches up with you. Overall Oncologist and Radiologist were both very happy with how it went. I ended up a +1 on my weight thru the 6 1/2 weeks of therapy. I fasted for all 3 chemos which I do think helped and didn't really cost me any weight. My follow on appts are in a month with a PET/CT scan due in the 3rd month post treatment. Now to heal up hopefully quickly . . . .

  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member

    Wishing you a speedy recovery from the after effects.

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member

    A super congrats Mr. Zilla and I celebrate with you on the milestone of the completion of treatment and the start of enjoying a cancer-free life and your new normal whatever that holds for you, hopefully not much different from the old normal. Ringing the bell is a memorable occasion for all of us who have gone through treatment. It's like slogging up a long steep hill and finally getting to the top and starting down the other side, now we can relax, rest, and coast.

    Wishing You the Best

    Take care, God Bless-Russ


  • steven59
    steven59 Member Posts: 102 Member

    congrats godzilla1964

  • godzilla1964
    godzilla1964 Member Posts: 48 Member

    20 Feb 2023 Update: So it’s been almost 4 weeks from my last radiation treatment and 2 weeks since everything should have started healing. My throat got the standard 1st and 2nd degree (couple of spots) burns after rads on it but it all healed up in about a week, I used Regenecare samples the rad clinic gave me. Did wonderful job. Throat looks nice and normal on the outside now, but with the burn pattern, you could see where the areas getting the most rads were. Then the phlegm hit for a couple of weeks where I was spitting about 10-12 ounces into a cup so I didn’t swallow it. It was pretty dang thick. Thick enough to patch the Great Wall of china if need be! But that tapered off quickly as well with just the occasional spitting now. Saw my Oncologist last Friday and got blood work done. She said everything looked good except for my immune system with the neutrophils coming in at 680 and the minimum is 1000. Follow up blood test in two weeks so I’m concentrating on multivitamin everyday which I had stopped. Staying hydrated and continuing my protein drinks. Throat hurts a little less every day and sleep is coming better. Sense of taste. I have some back on the front of my tongue. I tried and egg over easy and could actually taste it on the front of tongue and it tasted like egg over easy!! With that I’ve added eggs back to the daily diet with the hope that taste comes back soon for other things. I have a March appt with the Radiologist and the big one being the PET Scan in April. All in all can’t complain.