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Starting third week of treatment

spector551's picture
spector551
Posts: 109
Joined: Nov 2013

Hi Everyone,

Tomorrow I enter my third week of treatment. I am doing ok so far. I am feeling the throat swelling and drying out now (along with the beginnings of that weird kind of hurt). My problem has been losing weight because they haven't really gotten on top of the nausea (it's getting better though). Apparently, I'm pretty sensitive to the cisplatin, even though it's low dose. My doctor was actually surprised that I was even affected by the chemo. He said that because I was so young and healthy, they didn't even think I would notice. Maybe they say that everyone lol.

 

So far, my two nodes have shrunk about 30%, possibly a little more. I guess at this rate they are on track to disappear by the end of treatment. I think my biggest hurdle is being under the mask. They gave me Xanax, but it doesn't really seem to do anything. How did you guys deal with the feeling of being waterboarded? What methods did you use to clean out your mouths before going into the machine? Any tips are appreciated.

 

Jamie

TracyLynn72's picture
TracyLynn72
Posts: 637
Joined: May 2013

I didn't have chemo, so I am no help there, but I will tell you that my doctors were always telling me "Wow, I've never seen anyone have such reactions to rads.  You react terribly to treatment...almost like you're allergic to radiation".  So, I feel your pain there :)  

 

Good news that the nodes are shrinking away!!  That's excellent!  The mask freaked me out a little bit, but I concentrated on breathing and prayed.  I prayed for my doctors, nurses, rad staff, family, friends, everyone on CSN, my church and really took my time talking to God.  I noticed that my prayers weren't finished by the time my treatment was after about a week or so.  I actually THANKED God during my treatment for healing me and for getting me through it.  I found that after I closed my eyes and started praying, time would go by quickly.  I would think about each "buzz" of the machine as I prayed.  That's what worked for me.  I never had any meds to calm me because I HATE meds.  I needed it...but I'm stubborn to a fault. :( 

 

I would spit and rinse and spit and rinse right before going on the table.  My saliva got so bad near the end, that I had to stop them in the middle of rad treatment so I could hack out more spit (sorry, gross, I know).  They understood totally and said that it happens all the time! 

 

Hang tough!  You have a great CSN family here that are routing for you!! 

CivilMatt's picture
CivilMatt
Posts: 2809
Joined: May 2012

Jamie,

Keep working on the nausea,  usually you will stumble across  the right combination of drugs and personal behavior to do the trick.  Your body is just responding correctly to the introduction of poison “get it out” , you just need to convince yourself that a little poison is ok.

I never liked the mask, but by taking 1 Lorazapam each time I came to find it interesting.  Each of us have our own procedure.  When my throat, tongue and mouth were “ablaze” (rad onc comment, not mine) 30 minutes prior take Lorazapam, in parking lot take a swig and swish of magic mouth wash, walk in the door and hit the head, take a drink of water, head to rad room, cough, choke, swish, spit and take a drink, chose my music, jump on the table, insert dental rolls, wiggle around, rub my face  and arms, don mask and start.

Once after the techs left the room, I had to raise my hands for a do over and I did do over.

There is no easy answer, you are in there alone and you need to find what works for you (music, praying, counting etc.)  More important is your lead up to the mask, learning to relax and convince yourself that you can breathe.  I experimented with ½ - 2 Lorazapams, it was either more anxiety or I was poured back into the car.

Best of luck, keep trying, you will get it.

Matt

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

That was my initial Rx, but within a week I was good to go just with JT....

Keep on them if the meds aren't helpinbg, they'll find something. I was OK, just tried not to dwell on the feelings and stayed focused on other stuff.

It's rough, but you'll get through it before you know it...

Keep thinking of the outcome...

Between chemo and rads it's about as close to killing you as it'll get, but you'll come out the other side.

JG

donfoo's picture
donfoo
Posts: 1146
Joined: Dec 2012

Hi,

Carboplatin is used as an alternative to cisplatin, just as effective as a radiosensitizer and less side effects. There are lots of anit-nausea drugs to try. Keep at it, you will get the right combo. Good luck, don

ErthWlkr
Posts: 23
Joined: Oct 2012

Hey Jamie -

I was lucky enough not to suffer any claustrophobic effects from the mask. But I also put myself into a "zone" when I lay down on the table and they started to snap the mask down. One thing I did was to count. I counted out the time until the machine started. Then, every step and stop of the machine, I counted those. I knew if I counted to twenty, the machine would move to the next position. And I knew there were eight positions. So in my head, I knew when it would end. It only became a problem on those days where they wanted to do an x-ray first - I could feel my anxiety rise a bit.

I also brought my own music. When I first entered the lab on a tour of the facility, I noticed they had a CD player. I asked if I could bring my own tunes and they said sure. So I created a playlist - some Beatles, Grateful Dead, Bob Dylan, etc. They always started the music for me when they cranked up the machine. They ended up using it for other patients who said it calmed them down.

It's a bit of a mind game. For me, once I could determine a beginning and an end, I was OK with it.

Hope this helps...

- Jeff

spector551's picture
spector551
Posts: 109
Joined: Nov 2013

I seem to be getting better with it... as long as I can keep the back of my throat clear enough to breathe though. Thanks for the encouragement people!

 

God bless,

Jamie

phrannie51's picture
phrannie51
Posts: 3601
Joined: Mar 2012

(that I can think of) for a person to have to fight nausea on a daily baisis through treatment.  There are so many anti-nausea drugs out there, they should be able to come up with a combo that works for you.....I took Zophran, Compazine, and Ativan (lorazipam)....all three on a rotating daily schedule for nausea.  If one or more of these aren't on your anit-nausea list, ask the Dr. (he's never had chemo, so all he knows is the variations of what OTHER people say....and to that the answer is, "everybody is different".)  Skiffen and I both got Amifostine before we went to rads.....I called it my daily "sick shot".....when I was on the last couple of days of rads, the nurses told me they were amazed that I'd never missed one....never told them "not today".....that they'd seen lumberjack macho men not be able to even begin to finish Amifostine....Size, age, gender doesn't make a damn bit of difference when it comes to these drugs we're blessed with.

I did my rad treatments like Matt.....Ativan (lorazipam) 30 to 60 minutes before I went in....the only drawback is you have to have someone drive you to and from as it is an anti-anxiety drug related to Valium (diazipam)....and it made me pretty relaxed to say the least.  I dozed through every treatment, actually resented that it only lasted 15 or 20 minutes, because I'd have to go home to finish my nap Laughing.  Before the treatment, before I even got out of the car, I'd drink some water, and spray my mouth with Stoppers 4. 

p

Duggie88's picture
Duggie88
Posts: 519
Joined: Feb 2010

I always joked my way through treatment. Maybe my mindset was make the people laugh that put a hurting on you. I couldn't take any drugs to get me through radiation because I had to drive 148 miles everyday fro treatment. I hated the mask but knew in order to beat cancer I had to do it. Like the other Jeff I counted the stations and the 13 zappings and kept pleasant thoughts of my grandkids and things I looked forward to in my near future. Into your third week, congradualtions you can see the light at the end of the tunnel as they shrink even more.

      Jeff

spector551's picture
spector551
Posts: 109
Joined: Nov 2013

Thanks guys,

 

All of you are awesome and I am proud to be a part of this community.

 

God Bless,

Jamie

debbiejeanne's picture
debbiejeanne
Posts: 2233
Joined: Jan 2010

jamie, i'm sorry you are feeling sick.  like P said, there has to be something that can help you.  be sure to talk to your doc.  it's wonderful news that the nodes are shrinking.  shows the tx is paying off.  there are other meds to help with the mask anxiety too.  you just have to speak up so your docs know there is a problem.  make a cd you like and take it with you.  sing along with it and that may help.  some counted the rotations of the machine, some prayed and some just counted.  you will find what works for you.  wishing you the best of luck.

God bless you

dj

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

Hello, I have difficulty with nausea try phenergan if you have not yet amend is also a good option.  Best of luck to u.

PJ

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Jaime - no, thank you - you have already given back, I start treatments next Monday the 25th and chemo/rad the 26th - you are helping me get ready along with as you said, all the awesome people here - I hope your mask sessions get better, I didn't like the simulation and fitting at all but made it through, so I figure I just have to make it through - thanks for helping me along the way. 

God Bless

Steve

spector551's picture
spector551
Posts: 109
Joined: Nov 2013

Steve,

You are basically on the same schedule as me, only three weeks behind. I have chemo on Tuesdays was well. We enter together, and we will exit NED together as well!

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

You are an Angel and brother in disguise plowing the road ahead for me and others - right behind you - you are right get NED!  Thanks again, my best to you!!

Steve

Nascarchristy
Posts: 15
Joined: Aug 2013

My Hubby ended up with Zofran,Compazine and then finally they added Adivan that combo finally worked for the Nausea Cisplatin was hard on him also. as far as the mask Music!!!That is what helped him, God Bless you on your Journey!!!

Crazymom's picture
Crazymom
Posts: 287
Joined: Nov 2011

I had no trouble with the mask...but did try to dream about  beaches...things relaxing.  Congrats on the reduciton iin the size of tumors.  You will make it!  Just hang in there.   Ann

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