Ok, Ok, I give...
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.
Comments
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try
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
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I don't know how long they'll
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
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Ditto ditto ditto...
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
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suction machine....fisrpotpe said:try
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
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!0 -
Just Kidding...
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
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Good Girl so proud of you for
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
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Good.
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
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Someone on here saidTracyLynn72 said:suction machine....
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!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
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you have our support
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
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Fight on
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 ****. 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
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We are with you
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
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Oh my gosh...
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.
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Amen to your decision!
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
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Dry EraseTracyLynn72 said:Oh my gosh...
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.
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
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Your MO sounds like my firstTracyLynn72 said:Oh my gosh...
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.
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!
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Good decision
It's the right thing to do- tell them to break out the big guns and knock your **** 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
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focusingTracyLynn72 said:Oh my gosh...
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.
Hi,
I still have sore body parts from getting mugged last week for talking about P..
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.
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