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Ok, Ok, I give...

TracyLynn72's picture
TracyLynn72
Posts: 677
Joined: May 2013

 

My surgeon recommended finishing treatment if I can.  I've cried all afternoon, but I guess this is what I have to do.  How long will they "give me a break" as I can't lay flat without vomiting.  I'm rinsing, swishing, taking Mucinex and doing all I can to try and thin this crap out.  Frustrated, starving, and very, very tired. 

fisrpotpe's picture
fisrpotpe
Posts: 1331
Joined: Aug 2010

many many years ago i had the problem, we found a portable suction machine. now they are very small and portable. for me it did an amazing job as it would pull the crap out of mouth and back of throat. 

ask any of your doc's they can write a script for one. 

sorry you have to go thru this, it's not fun for sure

john 

TracyLynn72's picture
TracyLynn72
Posts: 677
Joined: May 2013

 

would be great but not in our budget right now.  No insurance, we're self pay :(  I already owe $105k right now! I'm trying everything I can to thin this stuff out!

phrannie51's picture
phrannie51
Posts: 3669
Joined: Mar 2012

the other day that they were having good luck thinning it with L-Glutamine....can't remember who right now, tho.

Also.....maybe you can rent one from a Medical Supply place, might be worth a call.  I found one online for $159.00....I never used one, so have no idea what people paid for them....but maybe the cheap one is worth it's weight.

p

  http://www.specialtymedicalsupply.com/medical-equipment/respiratory-equipment/suction-machines-and-accessories/suction-machines/

meaganb's picture
meaganb
Posts: 226
Joined: May 2012

I don't know how long they'll let you take a break, but was wondering uf your Drs have given you any anti-anxiety meds? At first I had a fear of the mask & so I took xanax to ease that anxiety. Eventualky I got used to the mask, but towards the end I started needing xanax again because I was afraid I was going to choke on the mucus since everything was so swollen & sore. Definitely not the same situation you're in, but thought I'd mention it. I hope they can figure out how to make you more comfortable. I'm sorry you're having such a hard time :(

phrannie51's picture
phrannie51
Posts: 3669
Joined: Mar 2012

to what John just said....a suction machine to get that crap out.....they'll let you take it to rads....so you can give yourself a good suck, a good rinse and spit.....so you can feel comfortable for the 10 minutes or so you're on the table.

I'm feeling relieved to hear that you're going to give this cancer a good kick in the seat of the pants.....just know that there are so many of us who could have easily signed our posts the same way....frustrated....STARVING....and oh so tired....it's ok.  It's temporary....that's the BIG fact of this whole process....

p

jcortney's picture
jcortney
Posts: 410
Joined: Sep 2012

This is the right decision, as sucky (real word?) as it might be.

Joe

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

You believed us, LOL...we were just messing with you...

OK, you know I'm really kidding.. I'm sure it will be a decision that you probably won't realize or definitely appreciate short term.., but when it's all said and done..., and say umm some time next year when you are cheerfully posting away on here...giving some newbie crap about continuing treatment...

You'll look back and as Oprah says, have an aaah haaa moment.

Best ~ John

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

That's the way to go! I'm glad to hear this!
Maybe they can get you in prior, juice you up with fluids and drugs to stabilize you so you can get the treatment.

"T"

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Good Girl so proud of you for not throwing in the towel!  I know it doesnt feel like it but it will be over before you know it !

 

God Bless you,

rachel

donfoo's picture
donfoo
Posts: 1192
Joined: Dec 2012

Good decision. As to the "break". You just have to negotiate that with your RO and MO (if you have any chemo remaining). I am sure there is bias to get it done sooner with less break. Your job is to determine if holding off may extend some discomfort or put you in a place where side effects might be disproportionately elevated due to the break. There may be valid situations where "tuffing" up and getting it behind you asap may have overall less issues from side effects.

You never want to be here a year later then wondering if missing those last six treatments are responsible for these new low suv pockets in your lungs. You are doing all you can do now and that is all that is being asked of you.

Good luck, hang tough. don

CivilMatt's picture
CivilMatt
Posts: 2907
Joined: May 2012

TracyLynn,

Good decision, to continue.  I know the side effects of treatment can be brutal, but giving cancer a pass is worse.  The time is now to stake your claim to your life and rid yourself of this beast.  There is no sugar coating for you, you already know the reality of what it takes to finish.  So, be brave, strong and tough as you can be and finish your treatment plan.  We are each behind you for moral support.

Best always,

Matt

Duggie88's picture
Duggie88
Posts: 535
Joined: Feb 2010

Tracy

Glad you changed your mind. The battle we face with cancer is not an easy one but one we have to move forward with allowing us the best chance to kick it's ass. The machine John spoke of is probably the same I had to use for my trach. You can rent them from a medical supply house and they shouldn't be to expensive. Certainly worth a few phone calls.

It is never smooth sailing but as we always say it does get better. It doesn't seem that way now but trust  me a year from now (mark your calender) you will look back and say you're glad you went through it.

      Jeff

robswife87's picture
robswife87
Posts: 178
Joined: Mar 2013

Rob also had 2 times when he could not lie down to do the rads. One time they could only do a partial because of the choking. He went the next day and they had a suction machine there for him to use.

They did give him Ativan to take but he made it through without that. His choking was also in his last week. Hang in there honey. We are all praying for you 

You are gonna show this cancer who the boss really is.

Sandy

TracyLynn72's picture
TracyLynn72
Posts: 677
Joined: May 2013

 

ok, so now the oncologist is being ridiculous.  He is calling me every 30 minutes starting at 8am to "see if you are taking your meds I told you to".  Seriously?  I can not speak. My mouth is burned totally up.  I use a dry erase board to communicate.  He is aware of this.  He called 6 times yesterday before I had my son answer.  I told him if I could lay flat without gagging, I'd start back Thursday (tomorrow). He said that was good because I needed to "toughen up and get it done".  He doesn't think I'm as sick as I am.  He all but told my husband that.  My husband (Trey) wanted to wring his neck. He told us this big thing about how my cancer has a 30-40% chance of returning if I don't do my rads...well,  my surgeon and Levine team talked to Trey yesterday and said I should finish my treatment if I could because you can't have rads twice in the same place.  My surgeon then said "She shouldn't worry too much about that, her chances are less than 10%".  Trey told him what the oncologist said and he said that was very, very outdated numbers and would fax us new ones.  He did.  Trey wants me to be done.  He thinks 6 more treatments will put me back in the hospital.  He is very concerned about me, and I am too.  I look like an 80 year old, malnurished woman.  I'm 40.  I'm truly trying to do all that the doc says to get this crap thinned out.  I am trying.  I'm just so sick of this and my oncologist's attitude.  He's is NOT my favorite! 

 

I am not having any chemo, there was none suggested for me and this type of cancer.  Honestly, rads are used mostly as preventative in the type I had. 

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

If you had saliva, you'd be using a wet board... :)

Your percentages for survival I'd venture to say are very much better than both of your MD's quoted you.... I can't remember if you were Dx with HPV+ cancer..., but that usually tends to respond pretty well also....

Sometimes the MD's need to get a clue..., going through something is much different than reading about it or being trained for it.

Anyways, thoughts and prayers ... wishing for the best and for strength for you to endure a while longer through this ordeal..

John

 

meaganb's picture
meaganb
Posts: 226
Joined: May 2012

Your MO sounds like my first ENT. He was awful! Old and outdated. When he told me I needed Rads he said, "you will lose weight, but you need to anyways" I left in tears. I have always struggled with my weight but even I knew that losing weight by starving is the furthest thing from healthy. Snother time he asked if they were doing 60 Rad treatments. I was about 20 treatments in to my 30 at that point & thought, "holy crap! If I had to 60 of these I would rather die!" I found a new ENT shortly after who is younger & much more updated on ky particular cancer & treatment. Again,sorry things are so bad. They will get better, I promise!

donfoo's picture
donfoo
Posts: 1192
Joined: Dec 2012

Hi,

I still have sore body parts from getting mugged last week for talking about P.. Kiss It was thought to personal and indivdual, so is bantering around prognosis numbers. If anything should be left alone, that would be prognosis. It serves absolutely no good purpose to help patients self assess their own morbity, hpv+ or not. There are too many variables, lot more than P when discussing the impact a set of circumstances has on outcomes.

Plus statistics are just that and still don't have any truer predictive power beyond what you already can surmise.

You will surely drive yourself crazy if you throw life expectency and QOL into any discussion or decision. Plenty of other things to worry about.

donfoo's picture
donfoo
Posts: 1192
Joined: Dec 2012

Hi,

I still have sore body parts from getting mugged last week for talking about P.. Kiss It was thought to personal and indivdual, so is bantering around prognosis numbers. If anything should be left alone, that would be prognosis. It serves absolutely no good purpose to help patients self assess their own morbity, hpv+ or not. There are too many variables, lot more than P when discussing the impact a set of circumstances has on outcomes.

Plus statistics are just that and still don't have any truer predictive power beyond what you already can surmise.

You will surely drive yourself crazy if you throw life expectency and QOL concerns into the mix of any other discussion or decision. Plenty of other things to worry about.

fisrpotpe's picture
fisrpotpe
Posts: 1331
Joined: Aug 2010

would you rather he not be so involved? so many say i don't heard from my doctor. 

i wanted to stop mine at about 32-34 out of 38 treatments. i did not ask the doctor about it as i too could not talk. i used the magnadoodle instead of dry board. i thought so much about it and then finally realized if they felt the best success of survivorship was with less treatments they would have scheduled less treatments. 

that was 17 years ago, and hind site is easy to use. but I sure am happy I did what they told me to do. 

it was somewhat different then, i did not have pain meds like they do now. i did not have nausea meds like they do now. i did not have the option of using a peg tube as it was not an option. 

all that being said, the doctor is not the ultimate decider on what to do is you and your hubby. 

good luck with your choice. 

john 

cureitall66's picture
cureitall66
Posts: 857
Joined: Aug 2012

I know this is very hard on you....as P said, " it's temporary"! You will not regret going forward with this.

I wanted to mention that on the left hand side of this screen in the blue where it says cancer.org. click on "Community Resources". They have a phone number and live chat from American Cancer Society. They can talk to you about the financial struggling you are having as well as help you with getting your other medical needs met (possibly a suction machine if the facility doesn't have it available for you). Don't be afraid to reach out and ask for help.

Happy for your decision! 

~C

Roar's picture
Roar
Posts: 239
Joined: Mar 2013

It's the right thing to do- tell them to break out the big guns and knock your ass out. It sucks that you have no insurance. If you can gargle with magic mouth wash as long as possible and swallow- your throat will be numb for a short period- in that time try to knock down an insure or two-

good luck fellow warrior - you will make it and pretty soon this will be like a bad dream- keep up the good work

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Stay positive Tracy, you are so close to being done! Glad you are not giving up! Prayers!!

ratface's picture
ratface
Posts: 1235
Joined: Aug 2009

have had similar surgeries to yours. That's a tough surgery. You have been asked to suffer quite a bit but I'm here to tell you that all three are alive and kicking. One tough old girl is on her third jaw bone replacement because she bites like a junkyard dog. She is also on her 10th year of survival. I'm somewhat afraid of the woman. Finish your radiation, it gets better down the road a bit. You can be a junkyard dog to.

Eddie J
Posts: 23
Joined: Sep 2012

Try robitussim  my rad doctor recommended it ant it  worked great .

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