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  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #22
    Pam M said:

    Starting Radiation
    Steve,

    Hoping for all the best for you.

    I got my mask made last Tuesday. It wasn't fun, but it was doable - not as bad as I'd feared. Oddly enough, the technicians talked to me during part of process, and, of course, I tried to nod my head a few times. I just kept telling myself that I was OK, and able to breathe just fine. Some people imagine themselves somewhere else during the mask-molding procedure (and treatments), some try to meditate, some practice visualization, some listen to music they've selected (ask your dr or technicians what you can do - I can't have headphones, but they will play a CD or radio for me).

    I also have a PEG (dr. just said "you're going to need it - you should get it while you're doing well, and are not malnourished"); it's another thing I don't like, but it's doable. I can eat orally, and I just started doing tube feedings to add calories to my day and make sure my body can tolerate the formula. I'll start radiation in a week if all goes according to plan.

    A couple of people have made the comment "We do what we have to so that we can do what we want to". Sounds like you've got plenty of motivation to really apply yourself, and do the things you have to do. I look forward to hearing about your successes.

    All the best,
    - Pam

    the mask
    Pam and Steven- the mask is as the mask is. Again, the best way I found for getting thru full rads (20 places/session) was doing 1/2-tab of Xanax within an hour before each session. Just stating, again, something I hope you two will consider. Did help me. As a little something extra I found, which I hope neither of you need, I found that holding my mouth in a position of overbite- with my teeth in a position with my uppers in front of my lowers- was very helpful during the Rads. Just something for you to remember.

    Pam- I used 4.0 formula. Only needed 4 feedings/day, rather than the 7 with 1.5. Cheaper, too. Would suggest you throw this past those who will be providing you with the formula, and give it a try.

    Hope you two stay active on the forum. You will each have issues with questions. All you have to do is ask those questions. Realize that most of us have been thru what you are about to, and some of us far worse than you, or I, will experience. Just something to remember. You will both get thru this, as all of us Vets have (I'm 14-month), and this is not a time for you to be weak- stay positive, knowing you can get thru this, as we have.

    Believe.

    kcass
  • stevenl
    stevenl Member Posts: 587
    #23
    Pam M said:

    Starting Radiation
    Steve,

    Hoping for all the best for you.

    I got my mask made last Tuesday. It wasn't fun, but it was doable - not as bad as I'd feared. Oddly enough, the technicians talked to me during part of process, and, of course, I tried to nod my head a few times. I just kept telling myself that I was OK, and able to breathe just fine. Some people imagine themselves somewhere else during the mask-molding procedure (and treatments), some try to meditate, some practice visualization, some listen to music they've selected (ask your dr or technicians what you can do - I can't have headphones, but they will play a CD or radio for me).

    I also have a PEG (dr. just said "you're going to need it - you should get it while you're doing well, and are not malnourished"); it's another thing I don't like, but it's doable. I can eat orally, and I just started doing tube feedings to add calories to my day and make sure my body can tolerate the formula. I'll start radiation in a week if all goes according to plan.

    A couple of people have made the comment "We do what we have to so that we can do what we want to". Sounds like you've got plenty of motivation to really apply yourself, and do the things you have to do. I look forward to hearing about your successes.

    All the best,
    - Pam

    mask and peg
    Hi Pam,

    I have to say that I am overwhelmed by the responses I have received so far on this web
    site. Its great to hear from you Pam and know that my thoughts and prayers are with you
    this evening. The info is great but I dont know much of your history. Have you had any surgery so far or are you having rad only? You sound like a pretty tough person, so I think you will do fine. As for the PEG, you say you can eat orally and I did not know that was
    possible. Just have not had time yet to research it. Forgive me, I have only just begun this journey. If you get a chance fill me in a little more on your journey so far and I
    will begin right now to include you in my prayers. Hang in there and God Bless!!!

    Steve
  • stevenl
    stevenl Member Posts: 587
    #24
    Kent Cass said:

    the mask
    Pam and Steven- the mask is as the mask is. Again, the best way I found for getting thru full rads (20 places/session) was doing 1/2-tab of Xanax within an hour before each session. Just stating, again, something I hope you two will consider. Did help me. As a little something extra I found, which I hope neither of you need, I found that holding my mouth in a position of overbite- with my teeth in a position with my uppers in front of my lowers- was very helpful during the Rads. Just something for you to remember.

    Pam- I used 4.0 formula. Only needed 4 feedings/day, rather than the 7 with 1.5. Cheaper, too. Would suggest you throw this past those who will be providing you with the formula, and give it a try.

    Hope you two stay active on the forum. You will each have issues with questions. All you have to do is ask those questions. Realize that most of us have been thru what you are about to, and some of us far worse than you, or I, will experience. Just something to remember. You will both get thru this, as all of us Vets have (I'm 14-month), and this is not a time for you to be weak- stay positive, knowing you can get thru this, as we have.

    Believe.

    kcass

    Questions
    Hey again Kent,

    Not able to sleep to well this weekend. I am a bricklayer so I am usually asleep by now.
    Saw your post and wanted to respond. Regarding staying active on the forum, there is no question that I'm gonna hang around and bug you guys for awhile. I have learned more in
    the past 24 hours than I thought possible. Like I said i do a ct and pre-op tomorrow.
    See my rad onco on thursday and oral surgeon also on thursday. Don't know about the other
    onco yet, but hopeful for tuesday or wednesday. So it has been 14 mths for you, that's great, gives me great hope. After reading your posts I know now not to try to be the tough guy that I think everybody sees me as. Believe me I've had a couple of good crying periods this weekend. I will ask the docs for whatever will help me and your advice gives me a lot of knowledge on what I can ask for. Thanks for your help Kent, and God Bless. You will be in my prayers.

    Steve
  • Pam M
    Pam M Member Posts: 2,196
    #25
    stevenl said:

    mask and peg
    Hi Pam,

    I have to say that I am overwhelmed by the responses I have received so far on this web
    site. Its great to hear from you Pam and know that my thoughts and prayers are with you
    this evening. The info is great but I dont know much of your history. Have you had any surgery so far or are you having rad only? You sound like a pretty tough person, so I think you will do fine. As for the PEG, you say you can eat orally and I did not know that was
    possible. Just have not had time yet to research it. Forgive me, I have only just begun this journey. If you get a chance fill me in a little more on your journey so far and I
    will begin right now to include you in my prayers. Hang in there and God Bless!!!

    Steve

    You Asked for It, Steve - All About Pam
    Hi Steven,

    I appreciate your prayers for me - just returned the favor.

    As for my history - I was diagnosed end of Oct. with Stage 4b Base of Tongue with lymph node involvement (the huge node is what got me to the dr). I have not had surgery for my cancer, and drs and surgeons did not recommend it. I had open biopsies Oct. 26 with the understanding that they'd take my right tonsil if they needed to. They took it, but it was cancer-free. Ah well. I started Induction chemotherapy Nov 19 (after "interviewing" two radiology oncologists with differing opinions on chemo - was scared and confused and running myself in circles in my head). I finished induction chemo two weeks ago. I will begin radiation treatments on Monday (I have cold symptoms, so now I'm nervous about that). So, I can eat orally again (couldn't for a while after tonsil removal) because I haven't started radiation (rads) yet. From reading posts, I expect to continue eating orally for a while and plan to KEEP SWALLOWING as much as possible. Posters stress that a lot - hope I don't get wrapped up in the rest, and get lazy on trying to swallow.

    If you have a tonsillectomy - I found using a cool mist humidifier made a huge difference. I also slept propped up (yes, it was irritating). I also set a timer for drinking (and something else I can't remember now). Be aware - your uvula will probably get HUGE. I was told there'd be some swelling - such an understatement - I thought it would choke me - of course, it didn't, but it was distressing. Another word of wisdom - careful of checking tonsillectomy "sharing" websites - I hit a couple, and they were filled with horror stories, and people going into great detail about their awful experiences. Of course it's not fun (and I felt plenty sorry for myself), but I found my experience to be much less traumatic than the vast majority of those posters. My one other major tip - don't even try to close your mouth when you sneeze.

    I'm assuming after your busy day with the triple dr. whammy, you're having down time this weekend. Hope you get some rest for the next steps.

    Almost every single person I speak to who has a port (I don't - just a PICC line that starts in my upper arm, then travels to the same place most ports go, I think) is grateful to have it. Hope if you have a Port and PEG they can do them at the same time. It seems to me a lot of people (myself included) have complained about a lack of adequate support when it comes to their PEG feeding tube (mine's a G-tube - goes into the stomach). Hope that's not the story for you, but if so, people here have lots of useful tips; I even have a few, and I'm a newbie to it (got my PEG Christmas Eve, just started using it for feedings last week).

    Wishing (and asked for) all the best for you during treatment, Steve. Good to hear you're on the move for the fight - it took me a while to get kicked in, and I didn't like doing nothing else while I recuperated from surgery. Keep up the good work.

    - Pam
  • Pam M
    Pam M Member Posts: 2,196
    #26
    Kent Cass said:

    the mask
    Pam and Steven- the mask is as the mask is. Again, the best way I found for getting thru full rads (20 places/session) was doing 1/2-tab of Xanax within an hour before each session. Just stating, again, something I hope you two will consider. Did help me. As a little something extra I found, which I hope neither of you need, I found that holding my mouth in a position of overbite- with my teeth in a position with my uppers in front of my lowers- was very helpful during the Rads. Just something for you to remember.

    Pam- I used 4.0 formula. Only needed 4 feedings/day, rather than the 7 with 1.5. Cheaper, too. Would suggest you throw this past those who will be providing you with the formula, and give it a try.

    Hope you two stay active on the forum. You will each have issues with questions. All you have to do is ask those questions. Realize that most of us have been thru what you are about to, and some of us far worse than you, or I, will experience. Just something to remember. You will both get thru this, as all of us Vets have (I'm 14-month), and this is not a time for you to be weak- stay positive, knowing you can get thru this, as we have.

    Believe.

    kcass

    My Mask
    Thanks, Kent for the tips. Wish I'd known before I had my mask made about the teeth position. Apparently, I must've been clenching my jaws while the mask was being made, so now for treatments, my teeth are tightly in overbite position - ugh. Rads tech said that's the way they should be (sigh).

    Although I was prescribed Isosourse 1.5, pharmacy delivered "regular" (75 fewer calories per can). Nutritionist is having that straightened out. They were pretty inflexible on what I should have (I just found out I'm diabetic, so asked about sugar-free options, and got shot down). I will say, I "felt" a difference between the regular and the 1.5.

    I did mention medication to help calm me to my rad dr's nurse, who said "you won't need it - some people do - if you have a problem, we'll look into it". When I did my trial run yesterday, I did get anxious, because the mask has to press on my throat, and I have tumors there (so I mentally do not like anything to touch or put pressure on it), and the mask makes swallowing my saliva more difficult. But I was OK. I also cannot open my eyes in the mask - I'd heard that some people keep their eyes open during treatments, and I would have liked to have that option, but it's not happening. I just kept talking to myself in my head. I let my family know that if I have problems Monday, I will get and use a prescription to help me feel less stressed.

    As always, Kent - I love to read the comments from those who've stepped into the breach before me, and see that they made it through, so I can surely hope to follow in their footsteps. Thanks
    - Pam
  • ballonk
    ballonk Member Posts: 39
    #27
    Praying For You
    Steven, I had a radical left neck dissection in July 2003 as a result of squamous cell carcinoma (SCC). I was originally diagnosed in 2001 with SCC on the left side of my tongue. I had surgery at that time; no radiation or chemo required. I visited my ENT every few months for a follow-up visit and was doing fine.

    In 2003, I had a lump pop up on the left side of my neck which turned out to be a reoccurrence of SCC, requiring that I have a radical left neck dissection followed by radiation treatments which ended in December 2003. My surgery lasted about 11 hours; the first 2-3 hours the ENT spent scoping everything he could reach looking for additional cancer spots. He found none. He also removed my tonsils during this surgery as a precautionary measure. I spent two nights in the hospital and recovered quickly from the surgery. The most pain I had was from the tonsillectomy; not the neck dissection. I did not have a feeding tube during radiation treatments but did have to take pain medication for a few months in order to tolerate swallowing. I have numbness from my left ear down to my left shoulder, my left arm is weak and I cannot lift it over my head and my face and neck area is a little "lopsided" from the surgery but I have no problem with that; considering the alternative. I had difficulty swallowing and choking on food for a while after radiation treatments but my ENT dilated my esophagus (under mild sedation) twice over the past 6 years and that has helped a lot.

    I know cancer is a very scary situation and can only advise that you keep yourself informed and keep your faith in God. With my first cancer occurrence, my 5 year survival rate was at 85-90%. After the second occurrence the cancer had spread to the lymph nodes in my neck so my 5 year survival rate dropped to about 40%. This past December (2009), I reached my 6 year mark without another occurrence. So many positive things have come my way as a result of having cancer and while I would not want to experience it again, I have no regrets about having to travel this journey and I hope I can help others along in the process.

    While my doctor will not declare me "cancer free"; he feels I am out of the woods. There's no guarantee that it won't come back again, especially since it got into my lymph nodes. But I refuse to spend whatever time I have left here on earth worrying about something I can do nothing about. I've put this in God's hand and have prepared myself to die as best I can but I practice "guarded optimism" that God will allow me more time on this earth to be with my family and friends. However, I'm fully aware that it's not my call and that His will - will be done.

    Be strong, go with God! Please don't hesitate to contact me if I can be of any assistance.

    Kathy

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