1 week left!

adventurebob
adventurebob Member Posts: 691
edited March 2014 in Head and Neck Cancer #1
Only 1 more week left of rads to go and then I'm done with treatment! I've decided not to do the 6th round of Cisplatin as doc can't say for sure if it will be of any benefit but it will definitely make me sick. And I'll most likely only do 33 rads vs. 35 and be all done by Christmas. Again, doc can't say for sure that 35 is going to benefit me any more than 33. When I originally asked why 35 for everyone he responded "because it's enough". It will be nice when oncology takes each individual and their unique and delicately balanced bodies into account when prescribing treatment instead of the one-size-fits-all protocols. Perhaps 23 was the perfect amount of rads for me and 3 rounds of Cisplatin was the perfect chemo for me. Which would mean that more than 23 and 3 was too much and would be subjecting my already stressed body to unnecessary pain and damage. Not sure, but I have a suspicion that they could do this now if they were willing to take the time to test and analyze me thoroughly. But why do that when it is easier to just go with the protocols for everyone? Insurance? Maybe.

Anyway, just wanted to share my excitement about almost being done. I will also share my excitement about being done in a week. Also wanted to let those who are going through this protocol or are getting ready to that after 6 weeks my only side effects are: incredibly dry mouth, very red, burned and itchy neck and chest(I received 15 rads to the sternum for mets also), 1 sore on my tongue, mildly sore throat and some fatigue though I still walk or hike an hour or two daily and usually 4-5 hours 1 day per week. I am not taking any pain meds other than prescribed medical marijuana(vaporized or edible) and gabapentin.

I credit my relatively small amount of side effects to the following: prayer, organic vegan diet, supplements, coffee enemas, daily exercise, accupuncture, essiac tea and the love and support of my family and friends and especially the people on this board who have gone before me, are going with me or are following behind me.

This is doable!

Thank you friends. I wouldn't have wanted to take this journey without you. You have carried me through. My love and gratitude to you all.

Bob
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Comments

  • Pam M
    Pam M Member Posts: 2,196
    #2
    Almost There
    Five days. Wow. Close.

    I cannot get over you doing a four or five hour hike weekly. That is awesome! During treatment, I could be on my feet for that long once a week, but there's not way I'd have been able to hike. I also did not do the supplements that you're doing (multivitamin only), and did not get as much exercise (thirty minutes of exercise bike in a day was a good day for me).

    Hope you keep right on "withstanding" treatment well. Then have a boring and quick recovery.
  • kingcole42005
    kingcole42005 Member Posts: 178
    #3
    I am so happy for you, yet so jealous!
    I am so happy for you, yet so jealous! I have four more weeks and unfortunately I'm already having problems with mucositis and pain in my jaw, teeth and neck. I use all the products and finally had to go in and get morphine. I don't know what the heck they are doing but she said my throat wouldn't hurt, it hurts so bad I can't swallow my own spit sometimes. But I am glad to hear that your side effects weren't that bad, there is luck for others that are going through the same thing we are. I hope their experience is much more like your than mine. Happy Holidays. Shelly
  • Rayarno
    Rayarno Member Posts: 12
    #4
    kingcole42005 said:

    I am so happy for you, yet so jealous!
    I am so happy for you, yet so jealous! I have four more weeks and unfortunately I'm already having problems with mucositis and pain in my jaw, teeth and neck. I use all the products and finally had to go in and get morphine. I don't know what the heck they are doing but she said my throat wouldn't hurt, it hurts so bad I can't swallow my own spit sometimes. But I am glad to hear that your side effects weren't that bad, there is luck for others that are going through the same thing we are. I hope their experience is much more like your than mine. Happy Holidays. Shelly

    Post Treatment Progress
    I am now 4 months post treatment from stage 4 right tonsil tumor with lymph node involvement - had 33 radiation sessions and 3 rounds cisplatin - energy level back to normal, saliva in mouth close to normal, taste back (some things do not taste the same, but most things taste better), no lasting skin redness, no more mouth sores. Swallowing is like I saw in other posts best measured by monthly progress, keep doing the excersizes for swallowing, neck and jaw. Thank God the post treatment PET week before Thanksgiving showed no sign of cancer. For me and my family the best medicine is Prayer.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    Way to go Bob
    Last week I am pulling for you my friend
  • debbieg5
    debbieg5 Member Posts: 167
    #6
    Light at the end
    You're almost there Bob. sounds like you are doing great.

    As far as the number of sessions....I have noticed quite a few on here that had 33-35 radiation treatments. When my husband went through this 3 years ago, he had 40 sessions. There was a brief break along the way because he was hospitalized with complications from the side effects. But the RO explained that the number of sessions required was determined from past results. In other words, perhaps when they first started using this protocol they only did 10 sessions. Then after following those patients they find that the cancer comes back so then they start increasing the number of sessions for future patients and see what their outcome is. Over time, they arrive at a number that appears to solve the problem but minimizes the side effects. It would be nice if they had a unique gauge for each body to tell when it was "done".
    Debbie
  • adventurebob
    adventurebob Member Posts: 691
    #7
    Pam M said:

    Almost There
    Five days. Wow. Close.

    I cannot get over you doing a four or five hour hike weekly. That is awesome! During treatment, I could be on my feet for that long once a week, but there's not way I'd have been able to hike. I also did not do the supplements that you're doing (multivitamin only), and did not get as much exercise (thirty minutes of exercise bike in a day was a good day for me).

    Hope you keep right on "withstanding" treatment well. Then have a boring and quick recovery.

    Pam
    The only catch to the hiking now is I have to hike in the rain as the sun on my burns is too much. Lucky for me the rainy season is upon us. A boring and quick recovery sounds wonderful. Thanks for helping me through it Pam. You were the first one to respond to my first desperate post. I'll be thinking about you and praying for you to have a perfect surgery and recovery on Tuesday. Be good to yourself.

    Bob
  • adventurebob
    adventurebob Member Posts: 691
    #8
    kingcole42005 said:

    I am so happy for you, yet so jealous!
    I am so happy for you, yet so jealous! I have four more weeks and unfortunately I'm already having problems with mucositis and pain in my jaw, teeth and neck. I use all the products and finally had to go in and get morphine. I don't know what the heck they are doing but she said my throat wouldn't hurt, it hurts so bad I can't swallow my own spit sometimes. But I am glad to hear that your side effects weren't that bad, there is luck for others that are going through the same thing we are. I hope their experience is much more like your than mine. Happy Holidays. Shelly

    Sorry Shelly
    I wish yours was more gentle than it is. You are almost halfway done though. One thing that helped me was I had a 4 day break over Thanksgiving after week 3 when the sores started forming and my throat started getting sore because the treatment center was closed. Those 4 days allowed the sores to heal and they just never really came back until recently. Actually, today the one on my tongue has been getting my attention all day. And mucous is getting kinda thick. I'll be so glad to be done and so glad when you're done too. Keep taking good care of yourself Shelly. You're getting close.

    Bob
  • adventurebob
    adventurebob Member Posts: 691
    #9
    Hondo said:

    Way to go Bob
    Last week I am pulling for you my friend

    Gracias
    Thanks Hondo. Happy to read that your pain is down so low now. Answered prayers.

    Bob
  • adventurebob
    adventurebob Member Posts: 691
    #10
    debbieg5 said:

    Light at the end
    You're almost there Bob. sounds like you are doing great.

    As far as the number of sessions....I have noticed quite a few on here that had 33-35 radiation treatments. When my husband went through this 3 years ago, he had 40 sessions. There was a brief break along the way because he was hospitalized with complications from the side effects. But the RO explained that the number of sessions required was determined from past results. In other words, perhaps when they first started using this protocol they only did 10 sessions. Then after following those patients they find that the cancer comes back so then they start increasing the number of sessions for future patients and see what their outcome is. Over time, they arrive at a number that appears to solve the problem but minimizes the side effects. It would be nice if they had a unique gauge for each body to tell when it was "done".
    Debbie

    Nice picture
    Thanks Debbie. Sometimes it seems like we're still at the beginning of cancer treatment. My hope is that it becomes so much more individualized and mindful for the sake of future generations. And of course more successful and eventually exstinct as a disease. I see the amazing advances in technology and the incredible amount of resources we have and wonder how much is going into wiping out cancer completely. I hope to be alive when the disease is beat so I can be a part of the celebration.

    Bob
  • ratface
    ratface Member Posts: 1,337 Member
    #11
    adventurebob said:

    Nice picture
    Thanks Debbie. Sometimes it seems like we're still at the beginning of cancer treatment. My hope is that it becomes so much more individualized and mindful for the sake of future generations. And of course more successful and eventually exstinct as a disease. I see the amazing advances in technology and the incredible amount of resources we have and wonder how much is going into wiping out cancer completely. I hope to be alive when the disease is beat so I can be a part of the celebration.

    Bob

    33 or 35 it's irrelevant
    For all itents and purposes, Bob, your done! The last week of radiation is usually targeted at other areas and uses a lower dose. For instance my last week targeted the left side, in a "Just in case" scenario. My cancer was right of the midline, but might as well mop up while you are there. You probably have memorized all the stops in the machine as it goes through the routine and will notice it now is taking a new path and the duration is shorter as the radiation is decreased. Mine went from 70 greys on the main tumor to 50 greys on the adjacent sites. It really had been well planned from start to finish and they can produce it on paper like a roadmap. They have a big binder with your roadmap on it. Congrats on finishing a difficult endeavor. Enjoy the holidays.
  • adventurebob
    adventurebob Member Posts: 691
    #12
    Rayarno said:

    Post Treatment Progress
    I am now 4 months post treatment from stage 4 right tonsil tumor with lymph node involvement - had 33 radiation sessions and 3 rounds cisplatin - energy level back to normal, saliva in mouth close to normal, taste back (some things do not taste the same, but most things taste better), no lasting skin redness, no more mouth sores. Swallowing is like I saw in other posts best measured by monthly progress, keep doing the excersizes for swallowing, neck and jaw. Thank God the post treatment PET week before Thanksgiving showed no sign of cancer. For me and my family the best medicine is Prayer.

    Amen
    So nice to read your post. Energy, saliva, taste and skin. Those are the things that I'm looking forward to being "normal" again. And a clean PET. You are doing really well at 4 months. It must be the prayer. Keep praying. Thanks for the post.

    Bob
  • adventurebob
    adventurebob Member Posts: 691
    #13
    ratface said:

    33 or 35 it's irrelevant
    For all itents and purposes, Bob, your done! The last week of radiation is usually targeted at other areas and uses a lower dose. For instance my last week targeted the left side, in a "Just in case" scenario. My cancer was right of the midline, but might as well mop up while you are there. You probably have memorized all the stops in the machine as it goes through the routine and will notice it now is taking a new path and the duration is shorter as the radiation is decreased. Mine went from 70 greys on the main tumor to 50 greys on the adjacent sites. It really had been well planned from start to finish and they can produce it on paper like a roadmap. They have a big binder with your roadmap on it. Congrats on finishing a difficult endeavor. Enjoy the holidays.

    Yep
    I have noticed the accelerator is doing a different dance over me lately. Maybe today is my last day! Ah, what's a couple more? Thanks for the post. Enjoy your holidays brother.


    Bob
  • Bigfuzzydoug
    Bigfuzzydoug Member Posts: 154
    #14
    adventurebob said:

    Yep
    I have noticed the accelerator is doing a different dance over me lately. Maybe today is my last day! Ah, what's a couple more? Thanks for the post. Enjoy your holidays brother.


    Bob

    You're in the home stretch!!!
    WTG! Don't be surprised if the toughest weeks are this one and the next two post-treatment. With so many of us, the hardest weeks are the ones immediately following your last treatment. But the good news is that after that, it gets better very quickly.

    Here's hoping your feeling on the upside come mid-January and your first post-treatment PET/CT have you in the NED club!
  • adventurebob
    adventurebob Member Posts: 691
    #15
    Bigfuzzydoug said:

    You're in the home stretch!!!
    WTG! Don't be surprised if the toughest weeks are this one and the next two post-treatment. With so many of us, the hardest weeks are the ones immediately following your last treatment. But the good news is that after that, it gets better very quickly.

    Here's hoping your feeling on the upside come mid-January and your first post-treatment PET/CT have you in the NED club!

    Thanks Doug
    Won't be long now till I'm where you're at. I appreciate your encouragement. Keep on rocking brother.

    Bob
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #16
    GREAT NEWS
    Bob, so glad to hear your body is reacting pretty good to the treatments. I only had 30 Rads, and they told me there is a calculation to determine the number of treatments. I seem to be on the low end of numbers of Rad. Treatments, as 35 seems to be the common number.

    I wish you and your family a Merry Christmas and you will be in our prayers.

    MIKE
  • adventurebob
    adventurebob Member Posts: 691
    #17
    luv4lacrosse said:

    GREAT NEWS
    Bob, so glad to hear your body is reacting pretty good to the treatments. I only had 30 Rads, and they told me there is a calculation to determine the number of treatments. I seem to be on the low end of numbers of Rad. Treatments, as 35 seems to be the common number.

    I wish you and your family a Merry Christmas and you will be in our prayers.

    MIKE

    Merry Christma
    Thanks Mike. Merry Christmas to you and yours.

    Bob
  • DJG1
    DJG1 Member Posts: 121
    #18
    RAW NECK REMEDY
    Bob, So glad you are doing so well. Just wanted to share with you a remedy to the red raw neck. I just finished the 33 rads about 5 weeks ago, and had the same thing. I had to suspend the treatment after #28 because my neck was so raw. Doctor took me off the prescribed Mederma, and told me to buy some coconut butter oil. I did, and applied it heaverly for 5 days and my neck cleared up. I was able to finsih the last 4 rads. Hope this helps you. Debbie
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #19
    DJG1 said:

    RAW NECK REMEDY
    Bob, So glad you are doing so well. Just wanted to share with you a remedy to the red raw neck. I just finished the 33 rads about 5 weeks ago, and had the same thing. I had to suspend the treatment after #28 because my neck was so raw. Doctor took me off the prescribed Mederma, and told me to buy some coconut butter oil. I did, and applied it heaverly for 5 days and my neck cleared up. I was able to finsih the last 4 rads. Hope this helps you. Debbie

    MEPILEX PADS
    I think it is called Mepilex. My wife manages the Tauma Division at a busy urban Children's Hospital. This includes the burn unit patients. She was able to get a product called Mepilex?? Not sure of the correct spelling, ask your Rad. Doc. I had 1 small 3rd degree burn on my collar bone and allot of 2nd degree burning in the same area. My wife would cut these pads to fit, chage them daily and by the end of two weeks, my skin was actually sarting to heal and close back up.

    Great product if you can find it.

    Mike
  • Greg53
    Greg53 Member Posts: 849
    #20
    luv4lacrosse said:

    MEPILEX PADS
    I think it is called Mepilex. My wife manages the Tauma Division at a busy urban Children's Hospital. This includes the burn unit patients. She was able to get a product called Mepilex?? Not sure of the correct spelling, ask your Rad. Doc. I had 1 small 3rd degree burn on my collar bone and allot of 2nd degree burning in the same area. My wife would cut these pads to fit, chage them daily and by the end of two weeks, my skin was actually sarting to heal and close back up.

    Great product if you can find it.

    Mike

    You da Man!
    Bob,

    Great to hear your closing in on the end of treatments. Even better to hear how well you're doing! Keep it up Bro'!

    Happy Holidays!

    Greg
  • adventurebob
    adventurebob Member Posts: 691
    #21
    DJG1 said:

    RAW NECK REMEDY
    Bob, So glad you are doing so well. Just wanted to share with you a remedy to the red raw neck. I just finished the 33 rads about 5 weeks ago, and had the same thing. I had to suspend the treatment after #28 because my neck was so raw. Doctor took me off the prescribed Mederma, and told me to buy some coconut butter oil. I did, and applied it heaverly for 5 days and my neck cleared up. I was able to finsih the last 4 rads. Hope this helps you. Debbie

    Thank you
    I just happen to have that here at home. It adds calories to my smoothies. I'll give it a shot tonight. Gracias.

    Bob

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