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HELP!!

brotherslittlehelper's picture
brotherslittlehelper
Posts: 19
Joined: May 2010

Just got off the phone with my bro. They ended up giving him IV fluids and Zofran (after he threw up)...is having appt this a.m. with Chemo doc. Said he couldn't brush teeth because gums were all torn up....I told him that one of you had posted about using baking soda and water, he was going to go try it.
He is ready to quit. He has only gone thru two rounds and has about 3-5 left......doesn't think he can make it/tolerate it. I don't know what to say to him.
Sweet, thank you about the sleeping with head elevated, he did that last night and at least he didn't feel worse this a.m.( also, I read him your post about liking the Essentials program-- it made him feel good that even though he feels so horrible, that he could help)
Seems I remember someone saying that things don't normally get too bad from rad until 3rd round--unless sensitive to it. Apparently he is. the pain in his mouth and throat is fairly well maintained with current pain meds, but not for the rest of him. Doesn't think he could stand a compress at this time because he is soooo raw and swollen. His wife says that his whole face is pretty swollen.
God help him!!--And all of you!!!! Why the hell is he hurting so badly!?!?!?!? Why do I have to be so far away when he needs me the most??? He always takes my calls...I think he is hopeful too that I will have some info for him. Now I am at a loss. He can't stand the mask much more either. They crush it onto him so hard that it leaves impressions on his face, with only this little hole to breath out of!!! What a nightmare....something that should be in one of the SAW Movies!! How to kill yourself while trying to save yourself....How very f'd up!! I am sorry. I realize that most of you have been through or are going through something similar.....I just want to help my brother. If ANYONE has any words of advise that I could relay to him, I know we would both appreciate it so very much. God Bless -Jess

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Jess,

Sorry your brother is having a hard time....and sorry to let you know that at least for me that I does get worse, but usually tolerable. Weeks 4 - until about 4 weeks after seem to be the worst, but then it gets slooooowly better.

My rinse was about an 1/8 glass H2O2 (hydrogen peroxide) and about the same amount of plain water with a teaspoon or so of baking soda.....

As for the mask, they gave me a prescribtion for Xanax which did the trick, and I quickly weened myself off as it was more an anxiety thing. I took in a James Taylor CD and they kept it there and played it for me each time.

Good Luck, and hang in there...

God Bless,
John

brotherslittlehelper's picture
brotherslittlehelper
Posts: 19
Joined: May 2010

Thanks John, I am going to give him a call in a little while....I will suggest about the xanax and about adding peroxide too for his mouth rinse. I wonder if anti-depressant might be helpful also....Will get back to you after I talk with him again. -Jess

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Jess, I'm not sure of your brother's regime. But during mine, they actually made the mask before I started the nine weeks of chemo (Cisplaten, Taxotere and 5FU). By the time I got thru that I started losing a little weight and the tumor I originally had in my throat was gone. So they made a new mask when I first started the seven weeks of Carboplaten and 35 daily rads....

On my regime; each Monday of the seven weeks they would first strap the mask on and shoot an X-Ray, checking for fit. If all was well, they'd start the rads and continue daily. Next Monday start with the X-Ray, etc... Somewhere during the last few weeks of Carboplaten and daily rads, they made another mask because I had lost additional weight....

The fit is the main function of the mask, keeping you in the exact same spot each time....

I'm not sure on the depression, I'm a pretty upbeat and humorous guy, so I always relied on humor.... I mean other than having cancer at the time, I was in perfect health....

JG

train-nut
Posts: 101
Joined: Jun 2008

Given that your brother's face has swollen noticeably it may be possible to have another mask made. You might try to find a dentist where he lives that regularly treats cancer patients. It sounds like his mouth is really torn up and he needs more expert advice to get through this without so much misery. There are a variety of rinses out there(I did well with plain old baking soda) so I hope others will post on what worked for them. Hope this helps a little. I wish him the best of health. Rich

brotherslittlehelper's picture
brotherslittlehelper
Posts: 19
Joined: May 2010

Rich,
I will look into having another mask made.....I take it this should be with the Rad nurse/Doc.?.....As for his gums, here's part of the situation: Had pre-op chemo, had surgery, had gum surgery ...and seemed to be healing well from that, then 2 weeks later started this Chemo and Rad regiment. One week on, one week off...twice now. Blisters from 5FU didn't pop up this time until just about 5 days after the first round was done. This also happened pre-op, but no rad, so no burn. I wonder....gums bad from chemo or rad? We were told rad would be tough on the mouth & teeth, but didn't expect anything like this.....Think I will try ENT or Rad nurse for advisement on dentist who treats cancer patients....might be the quickest way to get answers.....Thank you for taking the time answer me....I will post again after I have talked to him or his wife later.

sportsman
Posts: 98
Joined: Feb 2010

Sorry to hear about all your brother is going through. I went through this about three and half years ago now and barely managed to come out the other side. There is nothing good about the radiation and chemo you have to take for this terrible cancer. My own minister described to me the things I went through were hellacious. This is probably the most devastating radiation a person can take. Fortunately the chemo I took to support the radiation did not have a lot of negative effect on me. I went into this pretty much blind like probably most others. I never could have imagined how horrible it would be. The radiation has left me with problems that can't be taken care of. So far as the mask you have to wear, this was terrifying to me. I can feel your love and your need to help your brother. I have a wonderful wife who was my nurse for about six months and still takes care of my needs. Your brother needs the best support system he can get. I wanted to stop treatment several times and just give up but my family would not let me stop fighting. To make a long story short I did come out the other side and have had three plus more years with my family now. Life will be a new normal once your brother comes out of this. Being a person of faith, I know that someday I will be whole again. May God Bless your brother!

dogsrule's picture
dogsrule
Posts: 96
Joined: Apr 2010

I am sending out prayers for your bother. It is a very tough thing to battle. Please let him know that it will get better.

fsdman
Posts: 51
Joined: Jul 2009

Sorry for your troubles. I had a rough time also from the very start. I lost taste after only 3 rads and lost 65 lbs even with the peg. I was 61 when I had my treatments. I too couldnt do the mask-felt buried alive and paniced.Finally a nurse cut out the mouth,a little and the eyes ,to release the pressure.Otherwise I wasnt doing it !! It worked great and I had no more issues with wearing it.As far as the rest goes b,I had it all and survived it all. Just get past each issue as it arises. Nobody claims its easy. Its horrible every day but it will come to an end and each day trhat passes brings healing closer.I am 1 year out of tx and doing great now-its a new normal but certainly worth the fight I fought.Never give up-just keep pushingt and your Bro will make it.It feels like the Drs are trying to kill us at times but they can help with any issues he has-dont be shy. Good luck

debbiejeanne's picture
debbiejeanne
Posts: 2224
Joined: Jan 2010

Jess, I forgot to mention the mask. I would insist they make another mask since your bro's so swollen. Also, if he panics when they put it on him, have them cut some of it out. I had a panic attack once and they cut my mask out where they could. Tell your bro that he will have to speak up. My oncology office was very good about doing what they could to make it more comfortable for me and I'm sure his will be also. Please keep us posted as to how he and you are doing. Thanks in advance.
God Bless,
Debbie

Fire34
Posts: 350
Joined: Feb 2010

Jess
while I was inpatient with my chemo/rad I used biotene mouthwash and toothpaste. Seemed to keep my mouth clean during treatment, but didn't do much for my dry mouth. the hospitals mouth wash which I believe was a lidocaine mix helped with the pain and mucous just a little, after treatment ended I used baking soda and salt water, that seemed to work pretty good.
Your brothers mask, my experience was that my first day the mask was so tight that I thought they had the wrong one. The techs were able to shim it up 6mm and that was it. they could not loosen it up anymore as it would throw off the programming.
Is your brother getting IMRT? They will probably have to refit a new one and do another CT to get the coordinates. Best Wishes & Prayers
Dave

debbiejeanne's picture
debbiejeanne
Posts: 2224
Joined: Jan 2010

Jess, I'm so sorry your brother is going thru this horrific battel and I will definitely put him, his family and you in my prayers. I'm sorry that your bro wants to give up and that nobody is sure of what to do. Tell your bro to hang in there. Tell your bro to ask the doctor if magic mouthwash will help. It numbs the mouth a while.
I don't have any real answers as I only had the rad. For the burn on the neck, get Aquaphor!! It works wonders and helps the pain immediately.
Please hang in there and try to stay strong. Your bro will need you alot as he goes thru this. This network is a great place to get info and suggestions to ease the pain so try to come here often. People are very eager to help.
You will all be in my prayers.
God Bless,
Debbie

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Jess,

The info above sound all good re: maybe getting another mask fitted. If so, MAKE SURE they make a nice big breathing hole. (TELL THEM). Another thing I found helpful was a good nasal decongestant Spray about 5 minutes before each Rad session. He needs to be able to breath through both his mouth and nose and be able to consciously switch between the two. This will help to stop gagging which occasionally happens and relax him a little. If he learns to breath deep and steady and tries to relax, it will help. A guy I know would imagine in his mind that he had a PAC MAN going through his body munching up all the cancer cells. Anything to get you through the routine.

He seems to be having a very severe reaction !! I would also maybe ask the Rad Doctor to check the dose of the Rads.It is not good to get over done with his stuff. it never hurts to ask. It's not fun and as someone above posted, it will probably get harder from week 3-4.

Just keep doing what you're doing Jess. You are a great support for him. He needs to know he will come out the other side.

Regds
Scambuster

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

Jess I 'm with ya, it'a major pain, everyone has ther own story, they are so related, i went threw chemo and radiation, come to find out i thik they over did the radiation, it's taken long to repair, the damaged tissues, the roughest pat puking in a toilet for 2 weeks losing 60 lbs, i finiished chem it does get better, mine was a screw up and is going to take longer, I know have a trach I didn't ask for, this thing is going to be a bear to shed i hate it!!!, suctioning, phlem, Your right, we didn't ask for this i went threw it mostly by myself, i fought the mask as well, smother feeling and when i started to gag on phlem i panicked to be let up....the doctors can tell you what to do, but unless your doing the treatments, or wearing this painful piece of plastic, the emotions are horrible, I have learned one thing, and this is a fact, Cancer is a long time prcoess to heal, it's not your 24 hour flu, it's going to take months, up to years as i understand, this was the hardest thing for me to understand, get him threw the treatments, he stops, you start back over again, God Bless, theres alot of others out there, they say it's like coming to the end of you life, and being snatched back from the jaws. Take Care. Dennis,

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

Not sure if your using the same IMRT as me. I'm using a TOMO machine which is like a a CT machine; tomorrow will be my 8th tx;. Getting 56 gry to back of the throat; 66 gry to Right neck; and 55 gry to Left neck. I use music to relax and the rad tech cut out my nose and mouth which helped a lot. mainly just have the taste buds going and everything tastes like metal!! That magic mouth wash is called bmx(benadryl, mallox, and xylocain). Not sure why they use benadryl; you would think it would dry the mouth out more! Good Luck! Definitely have them cut th face part of the mask!

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