The radiation journey

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Sam999
Sam999 Member Posts: 319 Member
I know there is ton of information on this site on this but i found it took a lot of reading and even after that one is confused. I thought having a simple log where we have precise day by day information will help. We will limit this blog only for problems and known solutions.

E.g for each day or week we could try to say how we feel. Phrannie posted her every week and that was vey helpful to me.

Ques to answer at the start of the blog: what type of treatment are going thru and what are your starting pro active measures.

Ques:


Do you have any mouth sores? What are doing to try to reduce them.
Is your skin chaning? I.e. Any sign of burn? What are doing then to reduce?
Do you have extra fatigue?
Is your taste buds changing?
Is your saliva reduced?
Are you in pain? If yes, what type of pain and what are you doing to reduce it.
Are able to eat solid food?
Are you able to eat liquid food?
Have you lost weight?
are you using PEG?
Are you able to sleep thru night?
Any other problems?

I will go fist:

I am going thru radiation only on my tongue and neck area. One of the saliva glands is already taken out during surfery. I am getting regular dose. I
will find out exact dosage.
I am using Mugard for help prevent mouth sores. I am also doing l-glutamine swishes and also the standard salt baking soda swishes.
Right after radiation, i put fresh aloe vera and than when i come home putting aquqphor lotion. I am drinking lots of water, taking pro biotics every day and mutivitamins every other day. I also drink fresh coconut water (one cup)

Week 1: (3 days of radiation)

As expected no side affects yet. Found aquaphor greasy, posted question on this and wil try the suggestions after talking to the doc. Going to buy good whey protien today.
«13

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
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    My answers to your questions :)
    Just finished week 4 of rads, and two chemo sessions (3 weeks apart)....

    I do not have any mouth sores at this time...Got rid of the originals with L-Glutemine swishes, and MuGuard wash. I always swallow both.

    The only skin changes I have noticed is an itchiness at the base of my neck, and dry lips...I use Burt's Bee's chap stick on my lips, and Calendula cream on my neck. It is a thick cream for diaper rash in babies, but it seems to keep my neck in good shape.

    Most definately I am fatigued. I get home from Amifostine and rads at 3:30, and usually sleep until 6:30'ish. Then go to bed at 11:00 and sleep until 7:00...that is one hour short of sleep in one day that I used to sleep in 3 days (working nights 4 hours of sleep per day was normal).

    My taste buds are getting right down to nothing...everything smells so good, but taste has dwindled to nil.

    My saliva is gone, too...I drink massive amounts of water a day...probably 1/2 to 3/4 gallon a day, carry my water bottle most everywhere. I'm using Stoppers 4 (Drugstore.com) at night (REALLY does the trick) when I wake up...a few squirts and I can go right back to sleep.

    I am in no pain so far...knocking on wood!!!

    Still eating solid food, backing it up with Boost Plus, and Instant Breakfast VHC (Amazon.com)....lots and lots of calories in it!! So yes, using both liquid and solid foods.

    I have not lost any weight....still hanging between 93 and 97 lbs.

    I have used my PEG for practice....and to bypass my "gagger" right after chemo...but other than that, it is still a built in safety feature for me.

    I sleep mostly thru the night. Have to pee a couple times due to all the water I drink, and dry mouth wakes me up...but have the Stoppers 4 right at my bedside, so I go right back to sleep.

    For me, the worst part is the fatigue....I'm used to doing a lot here on our little farm, and I'm lucky if I walk the dog 1/2 of a mile a day. We used to do 3 to 5 miles a day...have only brushed my horse once this month :(...Thank God my hubby has taken over all my chores, or I'd be going crazy looking at everything that wasn't getting done!

    p
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    Options

    My answers to your questions :)
    Just finished week 4 of rads, and two chemo sessions (3 weeks apart)....

    I do not have any mouth sores at this time...Got rid of the originals with L-Glutemine swishes, and MuGuard wash. I always swallow both.

    The only skin changes I have noticed is an itchiness at the base of my neck, and dry lips...I use Burt's Bee's chap stick on my lips, and Calendula cream on my neck. It is a thick cream for diaper rash in babies, but it seems to keep my neck in good shape.

    Most definately I am fatigued. I get home from Amifostine and rads at 3:30, and usually sleep until 6:30'ish. Then go to bed at 11:00 and sleep until 7:00...that is one hour short of sleep in one day that I used to sleep in 3 days (working nights 4 hours of sleep per day was normal).

    My taste buds are getting right down to nothing...everything smells so good, but taste has dwindled to nil.

    My saliva is gone, too...I drink massive amounts of water a day...probably 1/2 to 3/4 gallon a day, carry my water bottle most everywhere. I'm using Stoppers 4 (Drugstore.com) at night (REALLY does the trick) when I wake up...a few squirts and I can go right back to sleep.

    I am in no pain so far...knocking on wood!!!

    Still eating solid food, backing it up with Boost Plus, and Instant Breakfast VHC (Amazon.com)....lots and lots of calories in it!! So yes, using both liquid and solid foods.

    I have not lost any weight....still hanging between 93 and 97 lbs.

    I have used my PEG for practice....and to bypass my "gagger" right after chemo...but other than that, it is still a built in safety feature for me.

    I sleep mostly thru the night. Have to pee a couple times due to all the water I drink, and dry mouth wakes me up...but have the Stoppers 4 right at my bedside, so I go right back to sleep.

    For me, the worst part is the fatigue....I'm used to doing a lot here on our little farm, and I'm lucky if I walk the dog 1/2 of a mile a day. We used to do 3 to 5 miles a day...have only brushed my horse once this month :(...Thank God my hubby has taken over all my chores, or I'd be going crazy looking at everything that wasn't getting done!

    p

    Me!!
    Ok a little about me and my journey with the big " C "....( Crabs ) ..ha, ha just joking.

    I was dx in Nov, 2011 with high stage 2 Tonsil cancer ( T20N0M).HPV+
    Was "offered" TORS, Neck disiction and low dose chemo rads or just rads (33)
    I opted for the rads which started in March 2012.
    My tumor had no significent change in size in nearly 4 months.
    Started rads and soon lost taste and saliva at about wk 3.
    Opted for no PEG tube but lost 45lbs to date. ( I could afford to)
    Ate soft foods throughout and supplemented with ensure and protien shakes
    No enough though.
    I used a lot of my products for rad burn and kept my immune system in
    Tip top condition with "Transfer Factor Plus".
    Used MuGard, Biotein, salt/soda rinse, just a few sores on back of tongue but not bad.
    I worked thoughout ( I work for myself) but was tired in the afternoon so I took naps
    In the recliner.
    Now I am 5 weeks post rads and eating an evening meal ( steak, fish, ckicken) with the
    Help of Lortab, eating breakfast, lunch without.
    No taste ,no saliva sore throat but getting better every week.

    Going through this has been far easier than some on here but I pray I never have to go
    Through it again.

    I put my faith in god and a really positive attitude helps me with this bump in
    The road of my life, I was proberbly heading for a heart attack, overweight,
    High BP, High Cholesterol, Borderline diabetic but now all my blood is perfect
    I don't take any other med other than Lortab and my natural ones.

    Every step is doable it sure beats the alternative!!!

    God bless
    Tonsil Dad,

    Dan.
  • Sam999
    Sam999 Member Posts: 319 Member
    Options

    Me!!
    Ok a little about me and my journey with the big " C "....( Crabs ) ..ha, ha just joking.

    I was dx in Nov, 2011 with high stage 2 Tonsil cancer ( T20N0M).HPV+
    Was "offered" TORS, Neck disiction and low dose chemo rads or just rads (33)
    I opted for the rads which started in March 2012.
    My tumor had no significent change in size in nearly 4 months.
    Started rads and soon lost taste and saliva at about wk 3.
    Opted for no PEG tube but lost 45lbs to date. ( I could afford to)
    Ate soft foods throughout and supplemented with ensure and protien shakes
    No enough though.
    I used a lot of my products for rad burn and kept my immune system in
    Tip top condition with "Transfer Factor Plus".
    Used MuGard, Biotein, salt/soda rinse, just a few sores on back of tongue but not bad.
    I worked thoughout ( I work for myself) but was tired in the afternoon so I took naps
    In the recliner.
    Now I am 5 weeks post rads and eating an evening meal ( steak, fish, ckicken) with the
    Help of Lortab, eating breakfast, lunch without.
    No taste ,no saliva sore throat but getting better every week.

    Going through this has been far easier than some on here but I pray I never have to go
    Through it again.

    I put my faith in god and a really positive attitude helps me with this bump in
    The road of my life, I was proberbly heading for a heart attack, overweight,
    High BP, High Cholesterol, Borderline diabetic but now all my blood is perfect
    I don't take any other med other than Lortab and my natural ones.

    Every step is doable it sure beats the alternative!!!

    God bless
    Tonsil Dad,

    Dan.

    Wonderful responses. Let us
    Wonderful responses. Let us keep updating as we go thru it.
    Thanks,
    Sam
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    Sam999 said:

    Wonderful responses. Let us
    Wonderful responses. Let us keep updating as we go thru it.
    Thanks,
    Sam

    Sam999 Multi-vitamins ...just a question
    I noticed you said multi-vitamins?? I was told to NOT take heavy vitamins, expecially vitamin C during treatments as they hinder the work of the treatments....I'm betting you already checked with you doc / onc ...but just in case I thought I would mention it ... :)

    Tim
  • jtl
    jtl Member Posts: 456
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    Tim6003 said:

    Sam999 Multi-vitamins ...just a question
    I noticed you said multi-vitamins?? I was told to NOT take heavy vitamins, expecially vitamin C during treatments as they hinder the work of the treatments....I'm betting you already checked with you doc / onc ...but just in case I thought I would mention it ... :)

    Tim

    Tim is correct
    It is pretty well documented that anti-oxidents and chemo do not play well together because chemo relies on free radicals (not the political kind). I was told not to even drink smoothies and certainly not to take vitamins.
    John
  • tommyodavey
    tommyodavey Member Posts: 727 Member
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    jtl said:

    Tim is correct
    It is pretty well documented that anti-oxidents and chemo do not play well together because chemo relies on free radicals (not the political kind). I was told not to even drink smoothies and certainly not to take vitamins.
    John

    Tonsil Dad
    It sure is good to hear some of your positive reports. With all you've been through it's nice to hear that losing some weight was a positive benefit. Could you have done it w/o being forced? Not me. I am down to my high school weight and feel so much better. Odd thing is, I have continued to lose a couple more pounds since finishing rads on April 3rd. Okay, I stopped the fattening snacks like ice cream every night, but I have been eating normal meals. Maybe not as big of portion but I feel quite full and satisfied.

    Is is normal to continue to lose weight weeks or months after completion of RT? Just curious.

    Tommy
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    Options
    jtl said:

    Tim is correct
    It is pretty well documented that anti-oxidents and chemo do not play well together because chemo relies on free radicals (not the political kind). I was told not to even drink smoothies and certainly not to take vitamins.
    John

    Vitamins
    A multi-vitamin is ok to take during treatment, it is high doses of anti-oxidints
    ie vitamin C, A & E. Also beta-carotine as these can interfere with the radiation. The truth is that there is
    No evidence that they interfere with chemo in fact they "MAY" help increse survival
    rates, tumor response and overall patients ability to tolorate treatment. These studies
    Were done at MD Anderson in 2007.
    I have expressed my opinions before and I an big into alternative and natural meds
    @s to go all alternative
    And not suffer from the radiation effects long & short term. As we know its all about
    money and the FDA are the most powerful dept in America.

    Rad&Chemo are the "gold standard" and they have saved lives, all on this board ( God bless)
    but I can still have my opinion about Standard & Alternative and I'll be alternative all day long.

    God bless
    Tonsil dad,

    Dan.
  • jtl
    jtl Member Posts: 456
    Options

    Vitamins
    A multi-vitamin is ok to take during treatment, it is high doses of anti-oxidints
    ie vitamin C, A & E. Also beta-carotine as these can interfere with the radiation. The truth is that there is
    No evidence that they interfere with chemo in fact they "MAY" help increse survival
    rates, tumor response and overall patients ability to tolorate treatment. These studies
    Were done at MD Anderson in 2007.
    I have expressed my opinions before and I an big into alternative and natural meds
    @s to go all alternative
    And not suffer from the radiation effects long & short term. As we know its all about
    money and the FDA are the most powerful dept in America.

    Rad&Chemo are the "gold standard" and they have saved lives, all on this board ( God bless)
    but I can still have my opinion about Standard & Alternative and I'll be alternative all day long.

    God bless
    Tonsil dad,

    Dan.

    Please post that MDA
    Please post that MDA study.

    I am no fan of big pharma but until there is some substantive proof that alternative meds work ie clinical trials I am sticking with conventional treatment. I believe you did also and your opinion is as good as anyone elses as long as it it not prejudiced by any business interest. I will give you credit for always giving a disclaimer that your wife sells alt meds.

    John
  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
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    jtl said:

    Please post that MDA
    Please post that MDA study.

    I am no fan of big pharma but until there is some substantive proof that alternative meds work ie clinical trials I am sticking with conventional treatment. I believe you did also and your opinion is as good as anyone elses as long as it it not prejudiced by any business interest. I will give you credit for always giving a disclaimer that your wife sells alt meds.

    John

    My radiation journey
    so far; 9 rads. My throat is feeling VERY dry, maybe like a marble stuck way low (probably my vocal cords swollen) not severe pain but the need to sip water, tho I still have saliva, I think it's to help with the throat issues. After rads I immediately rub in RADX the cream my onc suggests. My neck is just a little red, tender. I am tired. I am able to do a few things and keep up laundry, go to church and shop as needed, but soon I'm ready to go to the house and just rest. I don't sleep a lot during day but try to go to bed early as we get up early (6) for rads at 8. (Long drive).
    I can still eat anything I want, but I feel like that's going to change this next week as everything today has seemed too big for my throat, even tho I've tried to thoroughly chew everything well.
    I have not lost weight yet but I feel it will change next week if my eating changes. A couple of times I've taken 2 xtra strength Tylenol to help with pain but trying not to take too many as I know things will get worse as I go along and will HAVE to have help with things. I'll post later on this thread as my journey progresses. I think this is a good idea to be able to read everyone's particular side effects on their journey.
  • meaganb
    meaganb Member Posts: 244 Member
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    My radiation journey
    so far; 9 rads. My throat is feeling VERY dry, maybe like a marble stuck way low (probably my vocal cords swollen) not severe pain but the need to sip water, tho I still have saliva, I think it's to help with the throat issues. After rads I immediately rub in RADX the cream my onc suggests. My neck is just a little red, tender. I am tired. I am able to do a few things and keep up laundry, go to church and shop as needed, but soon I'm ready to go to the house and just rest. I don't sleep a lot during day but try to go to bed early as we get up early (6) for rads at 8. (Long drive).
    I can still eat anything I want, but I feel like that's going to change this next week as everything today has seemed too big for my throat, even tho I've tried to thoroughly chew everything well.
    I have not lost weight yet but I feel it will change next week if my eating changes. A couple of times I've taken 2 xtra strength Tylenol to help with pain but trying not to take too many as I know things will get worse as I go along and will HAVE to have help with things. I'll post later on this thread as my journey progresses. I think this is a good idea to be able to read everyone's particular side effects on their journey.

    My radiation journey
    So far I've had 14 treatments. I lost my sense of taste pretty early, but I only had it on one side of my tongue. The other side was lost after surgery because the tumor was on that particular nerve. Sense of taste has been gone since first week. I alternate between having too much thick saliva and not having any. The latter usually happens at night. I have a lot of ulcers, the worst is on the side of my tongue. I was taking lyseine until the pills got too big to swallow. Just started taking L-Glutamine yesterday, hoping that they will begin to clear up. I'vebeen on liquid foods since last weekend. I don't have a Peg Tube and don't want one if possible. I've lost about 10 lbs thus far, but I'm not worried about that, I can afford to lose some and my mask is not fitting any differently. Mynthroat is sore, feels burned and my pain is coming from that and the ulcers. I use lidocaine or MM to numb before drinking Boost and take liquid Lortab every 5-6 hours. No skin reaction yet minus a tiny bit of redness. I'm hoping that will continue to be the case. I'll be halfway through my Rad treatments on Monday and can't wait to be done!
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    meaganb said:

    My radiation journey
    So far I've had 14 treatments. I lost my sense of taste pretty early, but I only had it on one side of my tongue. The other side was lost after surgery because the tumor was on that particular nerve. Sense of taste has been gone since first week. I alternate between having too much thick saliva and not having any. The latter usually happens at night. I have a lot of ulcers, the worst is on the side of my tongue. I was taking lyseine until the pills got too big to swallow. Just started taking L-Glutamine yesterday, hoping that they will begin to clear up. I'vebeen on liquid foods since last weekend. I don't have a Peg Tube and don't want one if possible. I've lost about 10 lbs thus far, but I'm not worried about that, I can afford to lose some and my mask is not fitting any differently. Mynthroat is sore, feels burned and my pain is coming from that and the ulcers. I use lidocaine or MM to numb before drinking Boost and take liquid Lortab every 5-6 hours. No skin reaction yet minus a tiny bit of redness. I'm hoping that will continue to be the case. I'll be halfway through my Rad treatments on Monday and can't wait to be done!

    Tommy / Dan and JTL (John)
    I actually would like a link or opinion on something to boost my immune system. Dan, John, maybe you got some links or suggestions ...you guys seem to do some pretty good research ..Dan....I'd consider alternative as well if I can read up on it...

    Tommy ....I notice I too am losing weight...but I don't know your situation ..mine is I still have my tube but don't use it ...but I notice it takes me longer to eat, (and I don't like cold food - so I keep heating it up) ....I can't eat as much as I used to and I have to take small bites....so I think this is the reason....I finished tx January 20th and though I have an big appetite ...I get impatient with having to heat up my food, chew, chew, chew and I just get frustrated (I think) and walk away...

    Tim

    NOTE: I've been drinking this vita-water which is a bit fru-fru for me ....and I still keep drinking the ensure to get my vitamins and minerals...but again, it's expensive and I would like to look at an alternative without all the sodium and sugars.
  • jtl
    jtl Member Posts: 456
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    Tim6003 said:

    Tommy / Dan and JTL (John)
    I actually would like a link or opinion on something to boost my immune system. Dan, John, maybe you got some links or suggestions ...you guys seem to do some pretty good research ..Dan....I'd consider alternative as well if I can read up on it...

    Tommy ....I notice I too am losing weight...but I don't know your situation ..mine is I still have my tube but don't use it ...but I notice it takes me longer to eat, (and I don't like cold food - so I keep heating it up) ....I can't eat as much as I used to and I have to take small bites....so I think this is the reason....I finished tx January 20th and though I have an big appetite ...I get impatient with having to heat up my food, chew, chew, chew and I just get frustrated (I think) and walk away...

    Tim

    NOTE: I've been drinking this vita-water which is a bit fru-fru for me ....and I still keep drinking the ensure to get my vitamins and minerals...but again, it's expensive and I would like to look at an alternative without all the sodium and sugars.

    Tim
    I don't know. I just eat what I like....right now I like "I'll Have Another" not that I want to eat horse meat. Go Boy!!
  • ooo
    ooo Member Posts: 105
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    Hi Sam,
    Nice thread!
    I


    Hi Sam,

    Nice thread!

    I haven't posted an update in a while, so here it is:

    Age 31, SCC of the tongue, no lypmh nodes involved. I had surgery to remove the main tumor and most lymph nodes on one side of the neck.

    I've completed 17 of 25 sessions of IMRT to tongue and neck. I'm not doing chemo. After IMRT the plan is to recover for a couple of weeks and then do some brachytherapy to deliver the final 20 Gy of radiation to the tongue.

    So far I experienced some redness of the skin (I use Aveeno and -eww- Aquaphor) and I've just started shedding my beard but not my mustache.. ;)

    In the past couple of days the back of my throat and the inside of my lip started feeling a bit burnt, but the discomfort is manageable.

    I still have plenty of saliva, although a bit less than usual, and everything still tastes great.

    The only source of pain for me comes from some blisters I have developed on my tongue, which is swollen and keeps on rubbing against my teeth. Depending on the day the pain can be tolerable or very intense. The blisters appeared between treatments 7 and 10. Around that time I saw things getting constantly worse for a few days and that scared me quite a bit. But I have been pretty stable after that and, by now, I'm starting to see the light at the end of the tunnel.

    A week ago I switched to a soft diet, since juggling pieces of food in my mouth is not exactly a pleasure with all the blisters. I don't have a feeding tube and I eat for hours every day. The good part is that I'm gaining weight - I'm prob 8 lbs above my usual weight and those lbs will be gold in the weeks to come (I'm definitely on the skinny side).

    I do feel more tired than usual, but I still manage to do a few hours of work every day and to bike the hospital (~10 miles round trip). I typically wake up once during the night.. you know, water in water out.

    Notable achievement of the day: csn-pizza!

    Ingredients:

    - cheese pizza
    - chicken broth
    - powerful blender

    I'm truly happy I'm in this journey with all of you guys out there. Best of luck to the folks who just joined, to the soldiers who are being cut, chemo sprayed and irradiated, and to the veterans who are recovering and talk us through the tough times.

    Dre.
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    Options
    Tim6003 said:

    Tommy / Dan and JTL (John)
    I actually would like a link or opinion on something to boost my immune system. Dan, John, maybe you got some links or suggestions ...you guys seem to do some pretty good research ..Dan....I'd consider alternative as well if I can read up on it...

    Tommy ....I notice I too am losing weight...but I don't know your situation ..mine is I still have my tube but don't use it ...but I notice it takes me longer to eat, (and I don't like cold food - so I keep heating it up) ....I can't eat as much as I used to and I have to take small bites....so I think this is the reason....I finished tx January 20th and though I have an big appetite ...I get impatient with having to heat up my food, chew, chew, chew and I just get frustrated (I think) and walk away...

    Tim

    NOTE: I've been drinking this vita-water which is a bit fru-fru for me ....and I still keep drinking the ensure to get my vitamins and minerals...but again, it's expensive and I would like to look at an alternative without all the sodium and sugars.

    Products
    Hey Tim & JTL (John),
    I don't really like to promote my wifes product on here as I don't want to
    Be banned from the board as I call all the people here "family".
    If you want to shoot me an email on here and I will reply with the company
    Info for there products. It is a MLM company but I'm not trying to get people
    To do the business I just think everybody in the world should consume the
    "TANSFER FACTOR PLUS" for the immune system, oh and bye the way it is in
    The PDR ( the doctors bible) but they will never tell you about it as they don't
    Make any money on it.
    Also John, google chemo and antioxidents and read on the science daily link.
    Look on my profile page and contact me either through CSN or my private email.

    God bless
    Tonsil dad,

    Dan.
  • Mikemetz
    Mikemetz Member Posts: 465 Member
    Options

    Tonsil Dad
    It sure is good to hear some of your positive reports. With all you've been through it's nice to hear that losing some weight was a positive benefit. Could you have done it w/o being forced? Not me. I am down to my high school weight and feel so much better. Odd thing is, I have continued to lose a couple more pounds since finishing rads on April 3rd. Okay, I stopped the fattening snacks like ice cream every night, but I have been eating normal meals. Maybe not as big of portion but I feel quite full and satisfied.

    Is is normal to continue to lose weight weeks or months after completion of RT? Just curious.

    Tommy

    Weight turning point
    I lost weight at a very fast rate during chemo+rads--4 and 5 pounds some weeks. I was eating only through my PEG and my stomach shrunk so much that I could take in only so much of the liquid food before I was full. I continued to lose weight after chemo+rads, but more slowly--as I could eat things like pudding, yogurt, etc. to supplement my tube-food. Eventually I lost 60 pounds before I started to gain weight again once the tube came out. I gained back half of that and have stabilized there for two+ years. One of the few silver linings in this has been the weight reduction, as I really needed to do that--and it also led to lower blood pressure.

    I developed ORN from my rads, and along with the trismus, eating has now become a real chore. Smaller bites, softer food, no salty food, lots of water--and chew, chew, chew before swallowing carefully. Sometimes I just get tired of it, and eat less because it's such a chore. I think that's a big factor in being able to stay at my current weight so long--that, and getting back to exercising.

    Mike
  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
    Options
    ooo said:

    Hi Sam,
    Nice thread!
    I


    Hi Sam,

    Nice thread!

    I haven't posted an update in a while, so here it is:

    Age 31, SCC of the tongue, no lypmh nodes involved. I had surgery to remove the main tumor and most lymph nodes on one side of the neck.

    I've completed 17 of 25 sessions of IMRT to tongue and neck. I'm not doing chemo. After IMRT the plan is to recover for a couple of weeks and then do some brachytherapy to deliver the final 20 Gy of radiation to the tongue.

    So far I experienced some redness of the skin (I use Aveeno and -eww- Aquaphor) and I've just started shedding my beard but not my mustache.. ;)

    In the past couple of days the back of my throat and the inside of my lip started feeling a bit burnt, but the discomfort is manageable.

    I still have plenty of saliva, although a bit less than usual, and everything still tastes great.

    The only source of pain for me comes from some blisters I have developed on my tongue, which is swollen and keeps on rubbing against my teeth. Depending on the day the pain can be tolerable or very intense. The blisters appeared between treatments 7 and 10. Around that time I saw things getting constantly worse for a few days and that scared me quite a bit. But I have been pretty stable after that and, by now, I'm starting to see the light at the end of the tunnel.

    A week ago I switched to a soft diet, since juggling pieces of food in my mouth is not exactly a pleasure with all the blisters. I don't have a feeding tube and I eat for hours every day. The good part is that I'm gaining weight - I'm prob 8 lbs above my usual weight and those lbs will be gold in the weeks to come (I'm definitely on the skinny side).

    I do feel more tired than usual, but I still manage to do a few hours of work every day and to bike the hospital (~10 miles round trip). I typically wake up once during the night.. you know, water in water out.

    Notable achievement of the day: csn-pizza!

    Ingredients:

    - cheese pizza
    - chicken broth
    - powerful blender

    I'm truly happy I'm in this journey with all of you guys out there. Best of luck to the folks who just joined, to the soldiers who are being cut, chemo sprayed and irradiated, and to the veterans who are recovering and talk us through the tough times.

    Dre.

    Two days a difference makes!!
    On the 19th I wrote about my short journey....said I felt like a marble in my throat....well over the weekend it grew to a golfball!!! No more toast for me!! (my favorite breakfast with peanut butter and jelly!) Soft foods only. Just ate some cold watermelon that went down very easily. Just wanted to tell you what 2 days can bring. Not horrible, but it is what it is!! :0 Day 10 of rads to vocal cords only, no neck.
  • Sam999
    Sam999 Member Posts: 319 Member
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    Two days a difference makes!!
    On the 19th I wrote about my short journey....said I felt like a marble in my throat....well over the weekend it grew to a golfball!!! No more toast for me!! (my favorite breakfast with peanut butter and jelly!) Soft foods only. Just ate some cold watermelon that went down very easily. Just wanted to tell you what 2 days can bring. Not horrible, but it is what it is!! :0 Day 10 of rads to vocal cords only, no neck.

    Rad # 5, dry mouth began

    Thanks everyone, this is very helpful info for anyone going thru this journey.

    Today was my rad #5, the only dis comfort is dry mouth has started. Will be going to the store to get the biotene gel. Will be ordering stoppers 4 from drugstore.com. I knew dry mouth is coming up soon so should have ordered this earlier ! I jus did not realize it comes so fast!

    Mrs. Sarge, i hope you feel better. I am behind you by a few days. We have to keep thinking about the light at the end of the tunnel and keep going,


    Sam
  • Sam999
    Sam999 Member Posts: 319 Member
    Options
    Sam999 said:

    Rad # 5, dry mouth began

    Thanks everyone, this is very helpful info for anyone going thru this journey.

    Today was my rad #5, the only dis comfort is dry mouth has started. Will be going to the store to get the biotene gel. Will be ordering stoppers 4 from drugstore.com. I knew dry mouth is coming up soon so should have ordered this earlier ! I jus did not realize it comes so fast!

    Mrs. Sarge, i hope you feel better. I am behind you by a few days. We have to keep thinking about the light at the end of the tunnel and keep going,


    Sam

    Multi vitamins

    Forgot to reply on the multi vitamins, my doc said okay but i am confused too. Will open up a new thread for this question

    Thanks for noticing it
    Sam
  • phrannie51
    phrannie51 Member Posts: 4,716
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    Two days a difference makes!!
    On the 19th I wrote about my short journey....said I felt like a marble in my throat....well over the weekend it grew to a golfball!!! No more toast for me!! (my favorite breakfast with peanut butter and jelly!) Soft foods only. Just ate some cold watermelon that went down very easily. Just wanted to tell you what 2 days can bring. Not horrible, but it is what it is!! :0 Day 10 of rads to vocal cords only, no neck.

    I'm like you Mrs. Sarge............
    What a difference a couple days make!! Only two days into this 5th week of rads, and my story is changing quickly. I thought I had dry mouth before....it gets a degree dryer every day. Nausea has been following me for two days, like a bad dream...making eating anything risky. I've taken a bunch of things off my menu, including mashed potatoes and gravy ...too sticky to go down my throat.

    I'd heard I might just be a late bloomer.....whoever told me that, I think you were right...I'm starting to see the tube looming in my future...

    p
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    I'm like you Mrs. Sarge............
    What a difference a couple days make!! Only two days into this 5th week of rads, and my story is changing quickly. I thought I had dry mouth before....it gets a degree dryer every day. Nausea has been following me for two days, like a bad dream...making eating anything risky. I've taken a bunch of things off my menu, including mashed potatoes and gravy ...too sticky to go down my throat.

    I'd heard I might just be a late bloomer.....whoever told me that, I think you were right...I'm starting to see the tube looming in my future...

    p

    Phrannie ....MrsSarge ...
    No worries y'all ...you are just where you should be ...behind some, in front of others (what I mean by that is as I follow your posts I see me in much of what you wrote ..but sometimes a week or so ahead, and sometimes a week or so behind) ....

    My wife and I are keeping you all in our thoughts and prayers ....just so you know....and we are ready for you to come out the other side with the all clear....

    It will continue to get worse before it gets better (most times, but everybody is different) .....but you gotta love your attitudes and your spunk....you will be fine!

    Tim

    NOTE: I've not seen a post from Layalyn lately ....unless I missed it ....she doing okay??