Hi, new here and thought I'd say hi and introduce myself to the group.

pete_55
pete_55 Member Posts: 8
edited March 2012 in Head and Neck Cancer #1
I was diagnosed with oropharyngeal squamous cell cancer; tumor on lower right corner of the tongue. I also had a golf ball sized lump on the right side of my neck where it had spread to my lymph nodes.
I was never told the official stage of my cancer, but by reading all I have, I believe mine was Stage 2.
I had surgery in Dec 2011 to remove the tumor, and then one week later had the lymph nodes removed from zones 1-3 in my neck and they only found cancer in one lymph node. I then had 30 radiation treatments to the neck area, and finished with that on Mar 2, 2012.
I was told the PET scan showed no other cancer in the body, so I got very lucky!

I came on here to complain I guess and sort of have my pity party, but after reading all the things that so many of you have gone through, the amount of radiation, chemo, etc that you have survived, I have no right to feel anything but lucky and thankful that I had to undergo so little to get to where I am!

So I am just introducing myself and saying hi and offering my best wishes to all for your survival and quick recovery!

I have read enough to understand the problems and time-frame concerning my taste buds, so I will only say that I have just started taking Zinc to see if that will help. Here is a link to a study that I found concerning using Zinc to help aid in restoring taste-buds.

http://www.bastyrcenter.org/content/view/980/

I also have heard about an herb caled Astralagus. It is an immune booster and is supposed to help the body during or recovery after radiation and chemo. I am going to get some in a day or so and start on that.

http://www.umm.edu/altmed/articles/astragalus-000223.htm

http://www.naturalnews.com/027223_ASTRAGALUS_immune_system.html

Most of my mucous has disappeared and only affects me at night. I do have a dry mouth, and as the mucous gets better, the dry mouth gets worse. But I am able to eat, even if I can't taste anything! I never had a feeding tube, so lost a lot of weight during the radiation phase, but one week after my last treatment, I was able to eat 1 1/2 large bowls of mild chili, so I got the protein from the meat and the beans, and am hoping to be able to keep up so that I can gain the weight back; I was always one that could lose weight easy and have always had a hard time gaining weight.

So now that I have said way too much, I do have one question from the longer term recovering survivors here. How long did it take to get enough strength back to be able to go to work again. I have been off during the whole radiation phase because I drive truck for a living and the employer was afraid that I'd be unable to operate a motor vehicle safely when I was in a weakened state and my reactions slowed down. I feel good
mentally now and my mind seems clear, but my body is so weak that I can't do much even around the house, much less go out and drive truck and unload at my stops for 12-14 hrs a day. If anyone has any info on this, or was in a similar position, I'd love to hear how it went for you.

Thanks so much for letting me vent and thanks for allowing me to join your group.

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Welcome to the group
    Pete, it sounds like you are doing really well. Deconditioning is a real enemy when you go through these ordeals. You will eventually get all of that back, but it will facilitate your recovery if you kind of push it. I have been through three of these major treatments now, so I know what I've had to do. I'm one who is always interested in getting myself reconditioned as quickly as possible.

    I finished radiation just over two weeks ago this time. A few days before I finished radiation, I started a walking program. I'm very faithful about this, now going 2 miles a day. Prior to my treatment I was running about 5 miles a day, so I've started very slowly, but I'm headed eventually back there. I've also started back weight lifting, way below what I was doing. I figure it will take me a year or so to regain what I've lost. And I've started taking Tai chi. This is already helping with the neck spasms I get after radiation.

    In the first two weeks, the benefits are already very visible. I am much stronger than I was. My stamiina, although not great, is quite a bit better than it was. this is how I rehabilitated myself the first two times. It dramatically speeds up the process.

    Best to you.

    Pat
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    #3
    Immune system
    Hi Pete,
    Welcome to the board, I'm in treatment now for Stage 2 Tonsil cancer, everything is going
    well except for the loss of taste but thats just part of the process. I see from your post that
    You mentioned a product for the immune system, please before you purchase anything check
    Out "Transfer Factor Plus" there is no other natural product on the market that raises your
    NK cells 437% above baseline. It is not an herb, vitamin or mineral, it is a molocule that
    Programs your own system. Do some research and if you are interested get in touch and I
    Will send you more info on the product.

    Once more welcome to the board.
    God Bless

    Tonsil Dad
    Dan.
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #4
    Hi Pete
    I took a total of 24 weeks off from work, and got through two surgeries, and eight weeks of concurrent chemo and rads. So, it was somewhere around 10 weeks or so after treatment that I was able to go back to a desk job with a 45-minute commute.

    Deb
  • ratface
    ratface Member Posts: 1,337 Member
    #5
    D Lewis said:

    Hi Pete
    I took a total of 24 weeks off from work, and got through two surgeries, and eight weeks of concurrent chemo and rads. So, it was somewhere around 10 weeks or so after treatment that I was able to go back to a desk job with a 45-minute commute.

    Deb

    Bienvenido Pete
    I was off work around nine months but discovered I had little appetite for the work I was doing post treatment. The disease changes you. All the best in your journey!
  • pete_55
    pete_55 Member Posts: 8
    #6
    longtermsurvivor said:

    Welcome to the group
    Pete, it sounds like you are doing really well. Deconditioning is a real enemy when you go through these ordeals. You will eventually get all of that back, but it will facilitate your recovery if you kind of push it. I have been through three of these major treatments now, so I know what I've had to do. I'm one who is always interested in getting myself reconditioned as quickly as possible.

    I finished radiation just over two weeks ago this time. A few days before I finished radiation, I started a walking program. I'm very faithful about this, now going 2 miles a day. Prior to my treatment I was running about 5 miles a day, so I've started very slowly, but I'm headed eventually back there. I've also started back weight lifting, way below what I was doing. I figure it will take me a year or so to regain what I've lost. And I've started taking Tai chi. This is already helping with the neck spasms I get after radiation.

    In the first two weeks, the benefits are already very visible. I am much stronger than I was. My stamiina, although not great, is quite a bit better than it was. this is how I rehabilitated myself the first two times. It dramatically speeds up the process.

    Best to you.

    Pat

    Wow! 3-time survivor?
    longtermsurvivor, you are an inspiration, and any others like you! To have been diagnosed and treated once was enough for me! Congratulations on your tenacity to survive this and beat it!
    Thanks for the comments. I will start walking and trying to ride my bicycle. Those are both good ideas for building some strength and stamina! It also gets me outside and helps get rid of the cobwebs from being inside too much!
    When you are walking, what kind/type of sunscreen do you use to protect your neck/face from the sun? I was told by the doctor that from now on I will have to use sunscreen to protect the skin for the rest of my life!
  • pete_55
    pete_55 Member Posts: 8
    #7
    Tonsil Dad said:

    Immune system
    Hi Pete,
    Welcome to the board, I'm in treatment now for Stage 2 Tonsil cancer, everything is going
    well except for the loss of taste but thats just part of the process. I see from your post that
    You mentioned a product for the immune system, please before you purchase anything check
    Out "Transfer Factor Plus" there is no other natural product on the market that raises your
    NK cells 437% above baseline. It is not an herb, vitamin or mineral, it is a molocule that
    Programs your own system. Do some research and if you are interested get in touch and I
    Will send you more info on the product.

    Once more welcome to the board.
    God Bless

    Tonsil Dad
    Dan.

    Thanks for comment
    I will look into this product you talked about, but in meantime, can you give me some specifics concerning what it does, used for, etc? I'm not familiar with the ter "NK cells".
  • pete_55
    pete_55 Member Posts: 8
    #8
    D Lewis said:

    Hi Pete
    I took a total of 24 weeks off from work, and got through two surgeries, and eight weeks of concurrent chemo and rads. So, it was somewhere around 10 weeks or so after treatment that I was able to go back to a desk job with a 45-minute commute.

    Deb

    Thanks
    D Lewis, I was off work for 3 or 4 weeks during my surgeries, and then when the radiation started, I have been off for almost 8 weeks so far. My boss says my time away from work only goes another few weeks, then I either have to go back or risk losing my job! But I don't want to work if the body isn't ready, yet need to work, so it's a big consideration right now.
    Did you run into anything like that? If so, how did you handle it, etc? My only source of income has been my brother paying my bills to keep a roof over my head!

    ratface, thanks for your comment also. I know what you mean about the disease changing you. My priorities seem so much different now than they did just 3 months ago! I no longer want to work, but to aim towards something meaningful that will give me some pleasure in my old age and not worry about the money aspect of it!
  • George_Baltimore
    George_Baltimore Member Posts: 303
    #9
    pete_55 said:

    Thanks
    D Lewis, I was off work for 3 or 4 weeks during my surgeries, and then when the radiation started, I have been off for almost 8 weeks so far. My boss says my time away from work only goes another few weeks, then I either have to go back or risk losing my job! But I don't want to work if the body isn't ready, yet need to work, so it's a big consideration right now.
    Did you run into anything like that? If so, how did you handle it, etc? My only source of income has been my brother paying my bills to keep a roof over my head!

    ratface, thanks for your comment also. I know what you mean about the disease changing you. My priorities seem so much different now than they did just 3 months ago! I no longer want to work, but to aim towards something meaningful that will give me some pleasure in my old age and not worry about the money aspect of it!

    Income
    Pete, did you know you are probably eligible for Social Security Disability. Most head and neck cancers automatically qualify you for 18 months of disability assuming you've paid into SS. I didn't know this when I was diagnosed in 2004. In 2006 my health started deteriorating due to the previous radiation (the gift that keeps on giving). It took me two solid years of fighting with Social Security to start drawing disability. You might want to check out online whether your cancer qualifies and contact your SS office right away. They are not very quick.
  • pete_55
    pete_55 Member Posts: 8
    #10
    George_Baltimore said:

    Income
    Pete, did you know you are probably eligible for Social Security Disability. Most head and neck cancers automatically qualify you for 18 months of disability assuming you've paid into SS. I didn't know this when I was diagnosed in 2004. In 2006 my health started deteriorating due to the previous radiation (the gift that keeps on giving). It took me two solid years of fighting with Social Security to start drawing disability. You might want to check out online whether your cancer qualifies and contact your SS office right away. They are not very quick.

    Income response
    Hi George_Baltimore. Am responding to this almost 2 months late, but I haven't been on here for a long time. I went to work too early I think, and all of a sudden, I've felt just like I was back getting radiation again! You mentioned your health deteriorating due to previous radiation and I'd like to discuss this with you if you would. I've felt weak and nauseous again, etc. You said concerning radiation, "(the gift that keeps on giving)"; does it continue to affect you long afterwards? I can't get any straight answers from my doctors!
    Also would like to ask about SS if you wouldn't mind.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #11
    pete_55 said:

    Income response
    Hi George_Baltimore. Am responding to this almost 2 months late, but I haven't been on here for a long time. I went to work too early I think, and all of a sudden, I've felt just like I was back getting radiation again! You mentioned your health deteriorating due to previous radiation and I'd like to discuss this with you if you would. I've felt weak and nauseous again, etc. You said concerning radiation, "(the gift that keeps on giving)"; does it continue to affect you long afterwards? I can't get any straight answers from my doctors!
    Also would like to ask about SS if you wouldn't mind.

    Hi Pete - Hi George_Baltimore
    Hey guys...I'm glad Pete came in this thread even if it was two months later...Pete, I imagine you figured out by now how long it took to get back to work....George_Baltimore ...I'm glad I read your respones to Pete b/c I finished treatments Janaury 20th 2012 and I swear the first month I could hardly get out of bed. Now to be full disclosure..I was not an active athletic type before I got sick. In fact I was a big guy at 320 lbs.....about a month after my last treatment I started back to work (manager of two hotels and an RV Park) ...could barely make it 6 hours on my feet (my job requires I stand and move around most of the time ..and talk, talk, talk. I oversee a staff of about 25 people down season between the 3 entities I manage....then about a month after I first went back to work (this would be around the first of Arpil 2012) the mucous went away and most of the pain went away ...from a 8-10 scale to a 4-5 scale...and for the month of April I thought I fetl pretty good...then around the last week of April I went off the fentynal patches and Narco ....but jus the last 2 weeks I have started feeling like I did when I first got sick???? My vocal cords are worse today as I write this then they were two weeks ago ...it's lke I have lost strenght in my voice ...and as I write this I feel blaaaahh. But no pain except for a few ulcers in my mouth and a slight burning sensation in my throat where the vocal cords are...

    I just had my first PET /CT scan May 7th and got the all clear from the onc. He said I look real good. Then that same week May 10th my ENT did a scope, stuck his finger down my throat and looked at all the sancs as well and said I look good and agreed with the finding of the onc. I told him my voice had just started getting worse...so he was careful to look at my throat in the scope...but still said I look good.

    My concern is I NEED my voice to work ....today I was on the phone many, many times and I just know the folks I was talking to thought "who is this guy and why doesn't he call in sick" ...lol...when I apologize for my voice they said "you sound terrible. I don't have allergies (I think) and I don't have symptoms of a cold ....just what I said above and the blahhhh feeling.

    So as I am writing this I feel better bc I took two narco and 3 advil....but I just feel like this past two weeks I went backwards? Is that par for the course..is that normal?

    I like some of the stuff I read in this thread (thanks Pete for some of those links) and I saw another link to some stuff that I think I might like to get for me (don't remember who posted it) ....

    I love the work I do and I don't want to ever have to go on SS (at least not now) ...I have a wife and five kids (my wife was a stay-at-home mom since we got married and only went back to work very part time to help out with the bills ....

    ..so George ..when I saw you had to go on SS after two years I'd like more history on your case and how you started feeling ...I'd also like to know if my "blaaah feeling" will pass (your opinion) and if it's normal ....

    Thanks George and Pete ...or anybody who would like to chime in ..I got some good info from DEB on another thread earlier today

    Tim / Idaho
    timcogdill@yahoo.com
    208.630.4842 cell
  • George_Baltimore
    George_Baltimore Member Posts: 303
    #12
    Tim6003 said:

    Hi Pete - Hi George_Baltimore
    Hey guys...I'm glad Pete came in this thread even if it was two months later...Pete, I imagine you figured out by now how long it took to get back to work....George_Baltimore ...I'm glad I read your respones to Pete b/c I finished treatments Janaury 20th 2012 and I swear the first month I could hardly get out of bed. Now to be full disclosure..I was not an active athletic type before I got sick. In fact I was a big guy at 320 lbs.....about a month after my last treatment I started back to work (manager of two hotels and an RV Park) ...could barely make it 6 hours on my feet (my job requires I stand and move around most of the time ..and talk, talk, talk. I oversee a staff of about 25 people down season between the 3 entities I manage....then about a month after I first went back to work (this would be around the first of Arpil 2012) the mucous went away and most of the pain went away ...from a 8-10 scale to a 4-5 scale...and for the month of April I thought I fetl pretty good...then around the last week of April I went off the fentynal patches and Narco ....but jus the last 2 weeks I have started feeling like I did when I first got sick???? My vocal cords are worse today as I write this then they were two weeks ago ...it's lke I have lost strenght in my voice ...and as I write this I feel blaaaahh. But no pain except for a few ulcers in my mouth and a slight burning sensation in my throat where the vocal cords are...

    I just had my first PET /CT scan May 7th and got the all clear from the onc. He said I look real good. Then that same week May 10th my ENT did a scope, stuck his finger down my throat and looked at all the sancs as well and said I look good and agreed with the finding of the onc. I told him my voice had just started getting worse...so he was careful to look at my throat in the scope...but still said I look good.

    My concern is I NEED my voice to work ....today I was on the phone many, many times and I just know the folks I was talking to thought "who is this guy and why doesn't he call in sick" ...lol...when I apologize for my voice they said "you sound terrible. I don't have allergies (I think) and I don't have symptoms of a cold ....just what I said above and the blahhhh feeling.

    So as I am writing this I feel better bc I took two narco and 3 advil....but I just feel like this past two weeks I went backwards? Is that par for the course..is that normal?

    I like some of the stuff I read in this thread (thanks Pete for some of those links) and I saw another link to some stuff that I think I might like to get for me (don't remember who posted it) ....

    I love the work I do and I don't want to ever have to go on SS (at least not now) ...I have a wife and five kids (my wife was a stay-at-home mom since we got married and only went back to work very part time to help out with the bills ....

    ..so George ..when I saw you had to go on SS after two years I'd like more history on your case and how you started feeling ...I'd also like to know if my "blaaah feeling" will pass (your opinion) and if it's normal ....

    Thanks George and Pete ...or anybody who would like to chime in ..I got some good info from DEB on another thread earlier today

    Tim / Idaho
    timcogdill@yahoo.com
    208.630.4842 cell

    Wet blanket
    I really, really don't like being a wet blanket. I am not a lawyer or a representative of Social Security. I can only relate my experience. Diagnosed in Jan. 2004, radiation ended in May, chemo in August. If I remember correctly, I went to work in September. I felt great up until around June of 2006.

    I was unaware that I automatically qualified for disability for the BOT as long as I couldn't work for x amount of months. I didn't apply. Even if I had applied, they wait six months before they start sending you checks. You get retroactive pay but you need to be prepared to exist for those six months on no income. You can't be working and draw disability. I believe that SSI is for that. That's supplemental income. I don't want to say too much for fear of guiding you in the wrong direction. The best thing to do is make an appointment to talk to an SS representative. Tell them why you want to come and and what you should bring with you. If you don't live near an SS office, you can apply online. Personally, I think it's better to talk to them face to face. I was asked whether I wanted to apply for SSI also. I said I wasn't sure. She said you may as well. I did and it ended up getting me an extra $9000 in back pay.

    I was initially turned down even after four doctors said I couldn't work anymore. Once you are turned down, that is when you go to an attorney that specializes in SS cases. SS headquarters is here in Baltimore. As it turned out, the father of the lawyer I selected used to work for SS and had written alot of the rules, codes, etc. Even so, it took me two solid years to get a hearing and eventually be successful in them overturning their decision. Thank God for family and a dear friend who supported me all that time before I started drawing it. I don't know what I would have done without them.

    Pete and Tim, I don't know if I've answered all your questions. As I said, I can only pass on my experiences. If there is anything else that I can help you with, just holler. Oh, I just thought of one other thing, when you hire a lawyer to fight them, the government caps what they are allowed to charge. At the time, my lawyers fee was $5400 and SS sent him a check directly. It might seem like alot but it is well worth it and actually when you are getting two years back pay, you really don't miss it.
  • George_Baltimore
    George_Baltimore Member Posts: 303
    #13
    George_Baltimore said:

    Wet blanket
    I really, really don't like being a wet blanket. I am not a lawyer or a representative of Social Security. I can only relate my experience. Diagnosed in Jan. 2004, radiation ended in May, chemo in August. If I remember correctly, I went to work in September. I felt great up until around June of 2006.

    I was unaware that I automatically qualified for disability for the BOT as long as I couldn't work for x amount of months. I didn't apply. Even if I had applied, they wait six months before they start sending you checks. You get retroactive pay but you need to be prepared to exist for those six months on no income. You can't be working and draw disability. I believe that SSI is for that. That's supplemental income. I don't want to say too much for fear of guiding you in the wrong direction. The best thing to do is make an appointment to talk to an SS representative. Tell them why you want to come and and what you should bring with you. If you don't live near an SS office, you can apply online. Personally, I think it's better to talk to them face to face. I was asked whether I wanted to apply for SSI also. I said I wasn't sure. She said you may as well. I did and it ended up getting me an extra $9000 in back pay.

    I was initially turned down even after four doctors said I couldn't work anymore. Once you are turned down, that is when you go to an attorney that specializes in SS cases. SS headquarters is here in Baltimore. As it turned out, the father of the lawyer I selected used to work for SS and had written alot of the rules, codes, etc. Even so, it took me two solid years to get a hearing and eventually be successful in them overturning their decision. Thank God for family and a dear friend who supported me all that time before I started drawing it. I don't know what I would have done without them.

    Pete and Tim, I don't know if I've answered all your questions. As I said, I can only pass on my experiences. If there is anything else that I can help you with, just holler. Oh, I just thought of one other thing, when you hire a lawyer to fight them, the government caps what they are allowed to charge. At the time, my lawyers fee was $5400 and SS sent him a check directly. It might seem like alot but it is well worth it and actually when you are getting two years back pay, you really don't miss it.

    wet blanket II
    Don't think I explained the wet blanket part. I hate to say it but, with the after effects of radiation stay with you. At least the did with me. I sincerely hope neither of you have to go through what I've been through so far with the after effects.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #14
    George_Baltimore said:

    wet blanket II
    Don't think I explained the wet blanket part. I hate to say it but, with the after effects of radiation stay with you. At least the did with me. I sincerely hope neither of you have to go through what I've been through so far with the after effects.

    Thanks George,
    I think you did answer my questions.

    I took a leave of absence begining November 21 (started treatments then) and did not finish treatments until January 20th. It was another 3 weeks before I returned to work (but fortunately for me as a manager I always made sure I scheduled my hours to work with others so If I got sick or had to stop and rest, I could.

    The owner I worked for told me to take the time I needed, when I got back my job would be there ...he held to his word. The owner also provides housing for my family and I and before I even asked if I needed to move out or pay rent ...he said "oh, and by the way..stay in the house bc when you get back all will be as it has been (I pay nothing in this house, no rent, utilities, cable, garbage ..I mean nothing).

    The only way my wife and five kids survived is we owed no debt and with no housing costs any money we had went to put food on the table. My brother in law started a Cogdill Relief Fund (without my knowledge at first) and we ended up with a few thousand dollars in that account from friends and family (and a few strangers I might add).

    I was going to apply for SS bc I heard you should (this was before I started treatments) bc it takes so long to get approved ...but with all we had on our plate (and I live 100 miles from my treatment center) ...I justs never did. I guess at this point I don't need to. Now 3.5 monhts post treatment I work a normal schedule and get around okay ...I have days when I come home exhausted ...but my job is not physical ...just demanding mentally and being in a small town of 3,000 ppl ...I live 2 blocks from both hotels I manage and the RV park is right next door to our house :)

    I was worried this last week bc my voice was going so badly and still is not where it should be ...but I got some wonderful input from Pat (longtermsurvior) and hopefully nothing will come of this voice issue and it will pass. I was also feeling soooo blaaaah and did not understand why ...but again, Pat (longtermsurvior) shared some great insights.

    Prayers for you tonight George (if you don't mind) ....really I did.

    Thanks,

    Tim / Idaho
    timcogdill@yahoo.com
    208 630 4842 cell
  • George_Baltimore
    George_Baltimore Member Posts: 303
    #15
    Tim6003 said:

    Thanks George,
    I think you did answer my questions.

    I took a leave of absence begining November 21 (started treatments then) and did not finish treatments until January 20th. It was another 3 weeks before I returned to work (but fortunately for me as a manager I always made sure I scheduled my hours to work with others so If I got sick or had to stop and rest, I could.

    The owner I worked for told me to take the time I needed, when I got back my job would be there ...he held to his word. The owner also provides housing for my family and I and before I even asked if I needed to move out or pay rent ...he said "oh, and by the way..stay in the house bc when you get back all will be as it has been (I pay nothing in this house, no rent, utilities, cable, garbage ..I mean nothing).

    The only way my wife and five kids survived is we owed no debt and with no housing costs any money we had went to put food on the table. My brother in law started a Cogdill Relief Fund (without my knowledge at first) and we ended up with a few thousand dollars in that account from friends and family (and a few strangers I might add).

    I was going to apply for SS bc I heard you should (this was before I started treatments) bc it takes so long to get approved ...but with all we had on our plate (and I live 100 miles from my treatment center) ...I justs never did. I guess at this point I don't need to. Now 3.5 monhts post treatment I work a normal schedule and get around okay ...I have days when I come home exhausted ...but my job is not physical ...just demanding mentally and being in a small town of 3,000 ppl ...I live 2 blocks from both hotels I manage and the RV park is right next door to our house :)

    I was worried this last week bc my voice was going so badly and still is not where it should be ...but I got some wonderful input from Pat (longtermsurvior) and hopefully nothing will come of this voice issue and it will pass. I was also feeling soooo blaaaah and did not understand why ...but again, Pat (longtermsurvior) shared some great insights.

    Prayers for you tonight George (if you don't mind) ....really I did.

    Thanks,

    Tim / Idaho
    timcogdill@yahoo.com
    208 630 4842 cell

    Hi Tim
    You are truly blessed with a phenomenal boss. Sometimes I wonder what it would have been like if I had grown up in a smaller town where people actually cared about one another. I think you just illustrated what it's like. Glad to hear you are doing well! I hope this won't be necessary but, in the future, if the radiation "keeps on giving," don't wait to apply for Disability and SSI. Take care.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #16
    George_Baltimore said:

    Hi Tim
    You are truly blessed with a phenomenal boss. Sometimes I wonder what it would have been like if I had grown up in a smaller town where people actually cared about one another. I think you just illustrated what it's like. Glad to hear you are doing well! I hope this won't be necessary but, in the future, if the radiation "keeps on giving," don't wait to apply for Disability and SSI. Take care.

    Will do George
    Thanks George ....

    Keeping you and all my message board "friends" in my prayers.

    I've never been to Baltimore ...I've been to 42 of the 50 states (including Hawaii, where I was born - Navy brat, and Alaska) but just never made it to the New England States.

    I'll have to come visit one day :)

    Tim / Idaho
  • pete_55
    pete_55 Member Posts: 8
    #17
    Tim6003 said:

    Will do George
    Thanks George ....

    Keeping you and all my message board "friends" in my prayers.

    I've never been to Baltimore ...I've been to 42 of the 50 states (including Hawaii, where I was born - Navy brat, and Alaska) but just never made it to the New England States.

    I'll have to come visit one day :)

    Tim / Idaho

    Getting back to you both..........
    Hi George and Tim,

    Thanks so much for all the input you both have written here. I too have had a problem with my voice the last few weeks, and had NO problem with it the whole time I was getting rads and surgery! But a few weeks ago, all of a sudden, when I got fatigued at work, I get a raspy voice and sore throat, and the mucous gets real bad for a few days after. I'm only working 2 days a week, but those days are 12-14hrs long and fairly physical at times; the rest of the time I'm driving a truck.
    I'm off for 5 days since I told my boss I can only work 2 days a week so far, but those days are wearing me out, causing me to feel very tired, weak, sore, and the side-effects of the radiation seem to come back after a day of working! I think the hardest is dealing with the sudden onslaught of mucous in the throat which of course causes food to taste terrible and it's hard to swallow, etc.
    As for the SSI, I too was told to apply right away, but didn't due to being preoccupied with the treatments and getting better, so I didn't do it, and now I know it will take 6mos to get any help if I do, and by then, I should be able to go back to work full time!
    Anyway, thanks again for the comments, and talk to you later.

    Pete/Arizona
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #18
    pete_55 said:

    Getting back to you both..........
    Hi George and Tim,

    Thanks so much for all the input you both have written here. I too have had a problem with my voice the last few weeks, and had NO problem with it the whole time I was getting rads and surgery! But a few weeks ago, all of a sudden, when I got fatigued at work, I get a raspy voice and sore throat, and the mucous gets real bad for a few days after. I'm only working 2 days a week, but those days are 12-14hrs long and fairly physical at times; the rest of the time I'm driving a truck.
    I'm off for 5 days since I told my boss I can only work 2 days a week so far, but those days are wearing me out, causing me to feel very tired, weak, sore, and the side-effects of the radiation seem to come back after a day of working! I think the hardest is dealing with the sudden onslaught of mucous in the throat which of course causes food to taste terrible and it's hard to swallow, etc.
    As for the SSI, I too was told to apply right away, but didn't due to being preoccupied with the treatments and getting better, so I didn't do it, and now I know it will take 6mos to get any help if I do, and by then, I should be able to go back to work full time!
    Anyway, thanks again for the comments, and talk to you later.

    Pete/Arizona

    good to know ...
    glad you came back on and said you were having problems with your throat ...just today I told my wife I had some mucous?? I thought that was wierd ...

    ..now don't get me wrong ..sorry you are having that .... :)

    Take care Pete ...keep me posted.

    Tim / Idaho (hey, I get a lot of RV'rs that come up here and stay with us in the Golden RV Park ...if you have one and are ever in the area ....you got a spot on me! :)
  • pete_55
    pete_55 Member Posts: 8
    #19
    Tim6003 said:

    good to know ...
    glad you came back on and said you were having problems with your throat ...just today I told my wife I had some mucous?? I thought that was wierd ...

    ..now don't get me wrong ..sorry you are having that .... :)

    Take care Pete ...keep me posted.

    Tim / Idaho (hey, I get a lot of RV'rs that come up here and stay with us in the Golden RV Park ...if you have one and are ever in the area ....you got a spot on me! :)

    Does this happen to you?
    I have noticed that when I work and exert myself physically, I end up with worse dry mouth than usual and the mucous builds up worse than normal. It usually takes a couple days to come back down to normal! It's very frustrating because it makes everything taste bad and makes me not want to eat, and that is the last thing I should be doing as I need to gain weight so bad! I'm just a walking skeleton!
    Thanks for the invitation, but I'm one of those working stiffs that barely survive paycheck to paycheck and barely maintain a beat up truck to get to work! The idea of owning an RV is wonderful but will never happen! I have always wanted to visit Idaho, so if I ever head out east to see my son in PA, maybe I can stop in and say hi!
  • mls351w
    mls351w Member Posts: 90
    #20
    pete_55 said:

    Does this happen to you?
    I have noticed that when I work and exert myself physically, I end up with worse dry mouth than usual and the mucous builds up worse than normal. It usually takes a couple days to come back down to normal! It's very frustrating because it makes everything taste bad and makes me not want to eat, and that is the last thing I should be doing as I need to gain weight so bad! I'm just a walking skeleton!
    Thanks for the invitation, but I'm one of those working stiffs that barely survive paycheck to paycheck and barely maintain a beat up truck to get to work! The idea of owning an RV is wonderful but will never happen! I have always wanted to visit Idaho, so if I ever head out east to see my son in PA, maybe I can stop in and say hi!

    question for pete_55
    I had the same diagnosis as you. Mine was base of tongue on right side. Also had golf-ball size lymph node on right side of neck. 2 weeks of 24 hour chemo 40 rad treatments and surgery to remove 5 lymph nodes on side of neck. Middle node was cancerous. I went back to work 2 months after the rads were over and surgery 2 months later. I had acquired 58 weeks of time off with full pay and my wife was allowed to take me to all my treatments 50 and 65 miles away. We both worked for the same company. I was totally back to normal after 3 months. Full taste, saliva normal, recovery was remarkable. When I read about the crap people have went through and how so many are still struggling to recover,I sometimes feel guilty because I was so fortunate. Yeah, the treatment was hell, but thats what you have to go through.
    NOW, my question. Were you given 2 choices for treatment?
    I could have had surgery on my tongue with no chemo and moderate radiation or no surgery with chemo and heavy radiation. When told of the possible side effects of the tongue surgery, I chose no surgery. Maybe because of the location of the tumor. You said it was at the "bottom" of your tongue. Was it the base? And why did you choose surgery. Just curious.
    Good luck and the best to you.
  • pete_55
    pete_55 Member Posts: 8
    #21
    mls351w said:

    question for pete_55
    I had the same diagnosis as you. Mine was base of tongue on right side. Also had golf-ball size lymph node on right side of neck. 2 weeks of 24 hour chemo 40 rad treatments and surgery to remove 5 lymph nodes on side of neck. Middle node was cancerous. I went back to work 2 months after the rads were over and surgery 2 months later. I had acquired 58 weeks of time off with full pay and my wife was allowed to take me to all my treatments 50 and 65 miles away. We both worked for the same company. I was totally back to normal after 3 months. Full taste, saliva normal, recovery was remarkable. When I read about the crap people have went through and how so many are still struggling to recover,I sometimes feel guilty because I was so fortunate. Yeah, the treatment was hell, but thats what you have to go through.
    NOW, my question. Were you given 2 choices for treatment?
    I could have had surgery on my tongue with no chemo and moderate radiation or no surgery with chemo and heavy radiation. When told of the possible side effects of the tongue surgery, I chose no surgery. Maybe because of the location of the tumor. You said it was at the "bottom" of your tongue. Was it the base? And why did you choose surgery. Just curious.
    Good luck and the best to you.

    Answer for mls351w
    I was given the choice to have chemo and higher radiation doses, or to have surgery and lower doses of radiation with no chemo, so I opted for the no chemo option because I've heard story after story from people throughout my life that chemo was the hardest part of cancer survival! I also thought lower doses of radiation would be easier to handle.
    I survived the surgeries very well! It's just been the radiation after effects that have given me problems, and I can't imagine what I would be going through if I had chemo!

    My tumor was at the right side base of my tongue, and the doctor told my brother that I was lucky because instead of having to dig into the tongue to find it, it was sitting right on top of the tongue when they went in! So I got lucky there, but there is of course collateral damage to surrounding tissues with the laser that they used to cut the tumor out, though they do their best to keep that to a minimum.

    I don't regret my decision, but wish I was able to put on weight and recover from this ordeal faster. I have always had a very fast metabolism, so my weight problem was having a hard time maintaining a healthy weight to begin with. After all that weight loss during radiation, I am struggling to put any weight back on.

    It's wonderful that you have recovered so well! Congratulations! I appreciate your words of encouragement, and am doing ok. I seem to be at a status-quo..........not getting better but not getting worse! So I'm living with it.

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