On the journey......

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  • PipLily
    PipLily Member Posts: 127 Member
    edited April 2020 #22
    Pclark21st said:

    You should definitely get the

    You should definitely get the Aloe.  Aquafor first and main ingredient is petroleum.  Radiation doesnt mess around...you can get severe skin burns.  We actually used Aloe,  Calendula and also Coconut Oil...had only one tiny area that just turned red.  Our medical team was shocked and kept asking what we were using...and it's one natural thing you can do for your body among all the other toxins.

    Did you just alternate

    Did you just alternate between all of them? I do have 100% organic Coconut Oil that I got, so I will pick up some Aloe as well!!

  • Logan51
    Logan51 Member Posts: 468 Member
    edited April 2020 #23
    PipLily said:

    Thank you!

    And I have heard from many people abou the curly hair after chemo......he’s straight silver right now, so he would probably like a change!! ;) He retired in December, 2 weeks before his diagnosis. So while that’s a complete bummer, the bright side is that he can just focus his total energy on getting better and moving on to the REAL retirement!!

    Chemo nausea

    One thing I put forward years ago when I was active soon post-tx was what I learned- the only time I got hit with nausea was when I layed down horizontal. So, I literally set my alarm so I'd be in bed less than 4 hours, then went downstairs to get the rest of my sleep on the recliner= no more nausea. A few others tried it w/positive feedback. In the horizontal position whatever is in the stomach has a 50-50 chance of going the wrong direction, if you know what I mean. Trust me, now that I'm Feeding Tube dependent I am well aware of that- need to wait 2 hours after my last feeding of the day before I can lay down in bed. Just a suggestion you might want to try part-time sleeping on recliner, which is much like a hospital bed that can be raised so the head is inclined.

  • PipLily
    PipLily Member Posts: 127 Member
    edited April 2020 #24
    Logan51 said:

    Chemo nausea

    One thing I put forward years ago when I was active soon post-tx was what I learned- the only time I got hit with nausea was when I layed down horizontal. So, I literally set my alarm so I'd be in bed less than 4 hours, then went downstairs to get the rest of my sleep on the recliner= no more nausea. A few others tried it w/positive feedback. In the horizontal position whatever is in the stomach has a 50-50 chance of going the wrong direction, if you know what I mean. Trust me, now that I'm Feeding Tube dependent I am well aware of that- need to wait 2 hours after my last feeding of the day before I can lay down in bed. Just a suggestion you might want to try part-time sleeping on recliner, which is much like a hospital bed that can be raised so the head is inclined.

    Good to know Dave.....I will

    Good to know Dave.....I will pass on to him. He slept in the recliner for almost 2 weeks after surgery, just because it seemed like he had a lot of drainage at the back of his throat. So he’s used to that, and was able to sleep pretty well that way. Thanks for the tip!

  • Pclark21st
    Pclark21st Member Posts: 126
    edited April 2020 #25
    PipLily said:

    Did you just alternate

    Did you just alternate between all of them? I do have 100% organic Coconut Oil that I got, so I will pick up some Aloe as well!!

    We had rads in sm so hed

    We had rads in am so hed start right after tx...went right into bathroom and applied the Calendula before he came out.  Then hed apply aloe when home , let soak in then coconut oil.  Did this 3 step 3 to 4 times a day.  A pain but so worth it in the end...and dont stop when TX stops because you still cook.for a couple of weeks.  And start abt 1.5 to 2 weeks in...dont start when you see problems...its to late then.   Good luck

  • Pclark21st
    Pclark21st Member Posts: 126
    edited April 2020 #26
    PipLily said:

    Thank you!

    And I have heard from many people abou the curly hair after chemo......he’s straight silver right now, so he would probably like a change!! ;) He retired in December, 2 weeks before his diagnosis. So while that’s a complete bummer, the bright side is that he can just focus his total energy on getting better and moving on to the REAL retirement!!

    Be sure he drinks a ton of

    Be sure he drinks a ton of water and exercises even a little everyday...even if just going for a walk.  When we started I asked the team what were things we could do to get him better on the other side and they all said water and exercise 

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #27
    Pclark21st said:

    Be sure he drinks a ton of

    Be sure he drinks a ton of water and exercises even a little everyday...even if just going for a walk.  When we started I asked the team what were things we could do to get him better on the other side and they all said water and exercise 

    I agree with Pclark,

    I started eating as hearty a breakfast as I could handle, and drank a lot of water - before my chemo sessions. It seemed to help.

    Also lifting weights keeps the blood pumping, and helps with the neuropathy!

    mg

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #28
    Chemo and Eating

    I was lucky there.  I did not have any bad reaction from the chemo and radiation until the last few weeks.  I was able to eat and drive myself to treatment for most of the time.  The last week things got much worse.  My wife had to take me to treatment and I had to use the feeding tube.  That went on for what seemed like forever, but of course it was not, just a few more weeks and things then improved, not fast, but steadly and surely.  When I was in it I thought will this ever end?  Looking back on it the time was actally rather short before I began to feel human again and later that year I was able to do most things including work and even a nice vacation.  There is hope for sure.  

  • SuzJ
    SuzJ Member Posts: 446 Member
    #29
    Aloe

    for sure,  I got Green Leaf Naturals Aloe Vera Gel from amazon, still use it, 3 years later

  • PipLily
    PipLily Member Posts: 127 Member
    #30
    Pclark21st said:

    We had rads in sm so hed

    We had rads in am so hed start right after tx...went right into bathroom and applied the Calendula before he came out.  Then hed apply aloe when home , let soak in then coconut oil.  Did this 3 step 3 to 4 times a day.  A pain but so worth it in the end...and dont stop when TX stops because you still cook.for a couple of weeks.  And start abt 1.5 to 2 weeks in...dont start when you see problems...its to late then.   Good luck

    Thank you

    we’ve started the routine! Thanks for the information!

  • PipLily
    PipLily Member Posts: 127 Member
    #31
    SuzJ said:

    Aloe

    for sure,  I got Green Leaf Naturals Aloe Vera Gel from amazon, still use it, 3 years later

    We picked some up, and are

    We picked some up, and are using it routinely! Thanks!

  • minokismom1
    minokismom1 Member Posts: 1
    edited September 2020 #32
    MarineE5 said:

    PipLily,

    I am sorry that you and your husband have been thrown a curve after already starting on your journey. Both of you will look at what is in front of you and decide what is best. I had Base of Tongue cancer in 2004, surgery to remove the tumor, Radical Neck Disection on the right side. Going into this I was warned that the Surgery could result in me having a Feeding Tube for the rest of my life and problems talking. I had been given a choice of Radiation and Chemo with no surgery, but I wanted the Tumor out of me. 

    I told the Surgeon to hit me with the kitchen sink if needed since I only wanted to do this once. After Surgery with the Radiation Oncologist consulting with the Surgeon they decided that I only needed Radiation for 6 weeks. I had anticipated both Radiation and Chemo, but was told they thought it best to hold the Chemo for a backup plan. So far it has worked out for me. The Radiation can be harsh and you can read the Super Thread that is on the 1 st page here of H & N for tips during treatments. 

    The Radiation does have side effects and not all of them pertain to all of us. I have severe dry mouth since I had the IMRT type of Radiation on both sides of my neck. I do not leave the house without a bottle of water. I have ringing in my ears and some other issues. All in all, I manage to continue to do things I did before cancer. I do not have a Feeding Tube, but have to be careful of what I eat as I have choked several times. My speech is pretty good as I did have a portion of my tongue removed but my wife and others state my voice sounds the same, I do stumble over words at times.  

    One person years ago stated that when we go thru treatments, some people run thru them, others walk and others crawl, the important part is to get to the finish line. Recovery is measured in weeks, not days so we have to be patient on that. Again, each of us handles recovery different than the next person. 

    Since 2004, improvements have been made in the way treatments are managed, newer machines, etc. Others will be along as we have a lot of knowlegeable people here. 

    My Best to Both of You and Everyone Here

    Thank-you

    Thank-you

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