I'm done

I have decided today to not finish my final 6 treatments. I'm sicker than I've ever been and the weight loss is getting concerning. In order to stop vomiting, I'm drugged constantly. I was given a clear path report back in March after my surgeries and rads were just to be done as a precaution. I physically can not continue. I can on sit straight up for 5 mins or less before I'm gagging, choking or vomiting. I'm right at the point of being admitted to the hospital for fluids and nutrition. Thank you all for the advice and support. I've never felt so horrible in my entire life. 

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Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Suggestion...

    Why not do what you need to do to get the calories and hydration in you. Then decide what you want to do...

    I totally respect your decision, but it's too bad that you have went this far and not get the most out of it that you can...

    Anyways, just a thought...

    Best,

    John

  • cureitall66
    cureitall66 Member Posts: 913
    Sorry to hear that....

    As much as I'm glad to hear you had a clear path report, I'd hope you can get to feeling better soon to do the radiation tx. 

    I, too, respect your decision. But, I'm with Skiffin....would like to see you get your hydration and nutrition(maybe with PEG) under control and put your combat boots back on and finish off the recommended tx.

     

    Hope you start to feeling better soon!

    ~C

  • peggylulu
    peggylulu Member Posts: 375
    I agree

     

    with John and C . I hate to see you give up when you've come so close to finishing .  :( I'm wondering if some of your symptoms are due to being dehydrated ? Maybe if you talk to your Doctor and go into the hopital and get hydrated and some nutrition you would feel better and be able to finish your Radiation Treatments . My best to you whatever you decide .

    Peggy

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    They seem

    They arent recommending a peg as an option right now for some reason. my surgeon recommended 2-3 weeks of rads, the oncologist said 6 weeks and I'm saying DONE. I've had no food in 3 days that will stay down. Gatorade is it. I just can't do it anymore.  I feel like a weakling for saying it, but my body has been pushed well beyond  the limit of healthiness. I thought surgery was rough!! This has been much, much harder!! 

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    had enough

    TracyLynn,

    So sorry you hit the wall or shall we say your body hit the wall. If you can find a way to hang in there for the oncologist recommended dose, I would do it.  Either way I hope you feel better soon.

    Matt

  • donfoo
    donfoo Member Posts: 1,771 Member
    sorry

    So sorry to read about the challenges you face. I would strongly recommend you get your team together to discuss your situation. If you are on less that 35 treatments delivering less than 70grays, then you are on some form descalation which has not been adopted into enhanced standard of care treatment options as offered in the NCCI directives and such.

    This means you are on an inherently more risky protocol now and further reduction of treatments can only indicate the potential of increased risk to the efficacy of the treatment plan. There are always figures to throw for every occassion. One being lowered efficacy from less treatments. ONe figure is something like more than 1% for each day. So, if you are 5 down to start and 6 more, then this may indicate a lowered efficacy prognosis of 10+%.

    Please talk to your team tomorrow to discuss other options than quitting. You are hurting big time for sure and frankly, probably not in the best decision making mode. Reach out to your team, they deal with this day in day out for probably decades.

    God be with you on finding the best path forward through this very grim time. You can and will make it, just try very hard over the day or two to understand the long term side effects of all you accept as the new path forward.

     

    don

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member

    They seem

    They arent recommending a peg as an option right now for some reason. my surgeon recommended 2-3 weeks of rads, the oncologist said 6 weeks and I'm saying DONE. I've had no food in 3 days that will stay down. Gatorade is it. I just can't do it anymore.  I feel like a weakling for saying it, but my body has been pushed well beyond  the limit of healthiness. I thought surgery was rough!! This has been much, much harder!! 

    I felt that way too

    TracyLynn,

    My treatment ended on a Wednesday. The weekend before I felt like I was done too. I was so out of it that I wasn't sure I could drive back to Baltimore on Sunday evening to face the last chemo (on Monday) and last three rads. I could barely swallow water. I hadn't eaten hardly anything and was losing weight rapidly. I don't know how or with what but I did it. I then shuffled over to outpatient surgery and got a PEG. I stayed in Baltimore two more days getting hydrated before going home.

    The following weeks are a blur even upon reflection. The days just blended together for weeks before the fog began to lift and I began to function somewhat. Regardless of what you decide, hang tough. I know it's hard to imagine when you're feeling as you do now but it will get better. 

    Are you getting treatment at a CCC? The reason I ask is because the Dr.'s different recommendations on rads. I've not heard of 2-3 (14-21) treatments. Six weeks (30 treatments) as what I received after surgery was the least number I've seen. Normally, that decision in a team setting has been made and not openly discussed with the patient. 

    Positive thoughts and prayers

    "T"

    PS... from your profile:  

    What have you learned from your experiences that you would like to share?

    Never stop fighting. One day to the next can make a HUGE difference. Don't ever give up. God will never leave you no matter where you go or what you go through. When you need to cry, cry. Let it out. You'll feel much better :)

  • hwt
    hwt Member Posts: 2,328 Member
    donfoo said:

    sorry

    So sorry to read about the challenges you face. I would strongly recommend you get your team together to discuss your situation. If you are on less that 35 treatments delivering less than 70grays, then you are on some form descalation which has not been adopted into enhanced standard of care treatment options as offered in the NCCI directives and such.

    This means you are on an inherently more risky protocol now and further reduction of treatments can only indicate the potential of increased risk to the efficacy of the treatment plan. There are always figures to throw for every occassion. One being lowered efficacy from less treatments. ONe figure is something like more than 1% for each day. So, if you are 5 down to start and 6 more, then this may indicate a lowered efficacy prognosis of 10+%.

    Please talk to your team tomorrow to discuss other options than quitting. You are hurting big time for sure and frankly, probably not in the best decision making mode. Reach out to your team, they deal with this day in day out for probably decades.

    God be with you on finding the best path forward through this very grim time. You can and will make it, just try very hard over the day or two to understand the long term side effects of all you accept as the new path forward.

     

    don

    Tracy Lynn

    My lymph nodes were involved so I did not have a choice. Knowing what I have been through and the long term effects of radiation, I think if it was precautionary I would have said no I will save it in case there is a reoccurance.  With that being said, I believe I read that once an area has been radiated, it cannot be done there again. I maybe mistaken but, if so, that could change your game plan. Yes, it was tough but I got thru by taking all the meds and basically sleeping 20 hours a day. I did not have the nausea but did lose 65 pounds. You'll be in my prayers that God gives you the strength to make the right decision for you. I found strength in the poem "Footprints in the Sand". many a day there was only one set of footprints going into that radiation room and they weren't mine.

    Candi

  • katenorwood
    katenorwood Member Posts: 1,912
    please discuss this with your team

    Hey there,

    I haven't read your bio....should have.  I do understand your point of view.  I wanted to finish rads. and was told by the onc's that they may or may not help because my dx is rare, and not much known for tx's....unless it was stage 1.  Mine wasn't, and I had perinueral invasion.  I was hospitalized several times for severe unexpected complications to rads.  I cried so hard because I thought I failed.....I only made 11 tx's of rads.  This is your life, your body and none of this is an easy decision.  My suggestion would to be talk things over with your team, and step back for a few moments to make the right choices for you.  I'll be thinking only good positive thoughts for you !   Katie 

  • phrannie51
    phrannie51 Member Posts: 4,716
    Instead of saying no more

    .....maybe take a break....I was surprised when I finished rads, and they made a big deal out of the fact that I had never called in "sick" during their duration.....I didn't know we were allowed to call in and take a break, but I guess many people do!  However, one time the rad machine broke down, and I did have a 5 day break....it was amazing how fast I started feeling better in those 5 days. 

    I'm kind of like John and the others on this....see how you feel by this coming Weds. or Thursday....you may feel so much better that 6 more rads won't seem like a huge deal.   

    p

  • ET@cowboy
    ET@cowboy Member Posts: 15
    Rad

    Sorry to hear you are having a bad time and feel like quiting. I am only three weeks out of Rad treatment myself. I can't claim to be an expert and respect your feelings. However, I had three surgeries and my surgeon stated I needed Rad tx as a precaution. My surgeon said the Rad treatments would be light. I ended up having 30 treatments that were pretty intense. When I question my onc about the heavy dose, he said even though your margins were clear after sugery micro cancer cells could be lurking in the head or neck area.  He said SCC is harder to treat on a reoccurance than the original cancer. Whatever you decide is really your desicion. Try to hang in there and maintain a positive attitude.

  • Duggie88
    Duggie88 Member Posts: 760 Member
    Tracy

    I understand how you feel I was only three days into 30 zappings and I was ready to quit because I had symptons they told me I would get 10 days in. I'm with "T" and we are sitting over here in the corner watching and asking you to reconsider. I am certainly glad I did for the reasons Don states. Communicate with your team, they deal with this all the time and will certainly have a plan.

          Jeff

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435

    They seem

    They arent recommending a peg as an option right now for some reason. my surgeon recommended 2-3 weeks of rads, the oncologist said 6 weeks and I'm saying DONE. I've had no food in 3 days that will stay down. Gatorade is it. I just can't do it anymore.  I feel like a weakling for saying it, but my body has been pushed well beyond  the limit of healthiness. I thought surgery was rough!! This has been much, much harder!! 

    Tracylynn,
    everybody reaches

    Tracylynn,

    everybody reaches a breaking point in treatment, some talk about and some keep it to themselves.  Treatment SUCKS no other way to say it but the outcome is LIFE! And that is priceless! I was 28 when going through this, newly married and no children yet.  I remember being so low one night, i had food aversion, if i smelled it i got sick.  I to could only handle GAtoraide in my tube and quickly lost 70lbs, so i went to bed and said to God that i was ready, i told all my loved ones that i loved them and went to bed at complete peace if the Lord would take me home.   When i woke up the next day, even after my normal mucus vomit, i said "ok Lord you must have plans for me and i will carry this cross with as much dignity as i can". 12 1/2 years later i suffer from side effects that annoy the crap out of me but i would still never trade any of that hell away to not  have had and still have my LIFE, i am now a proud mother of a beautiful 9 yr. named "Faith"!  Every decision you make is respected by me and all your family here!  But just like the others i hope you find that last pull of strength in your gut to pull yoursdlf through the rest, i promise 12 yrs from now you'll be happy you did!

    whatever you decide I am with you along with my prayers 

     

    God Bless,

    Rachel

  • CherieLW
    CherieLW Member Posts: 472
    Tracy,
    Aww hun. I'm so sorry

    Tracy,

    Aww hun. I'm so sorry you are going through this and feel like you just want to quit.  I can only imagine, but I also would like to ask you to reconsider.  Only because I care and I'm sure everyone in your life really cares and is concerned aslo.  I know all of these side effects have to be rough, but you can do this! You gave me such great advice for watching dad go through this.  6 treatments seems like nothing now that you are down to it.  I don't know about breaks, but I would suggest you take one if you can and defintely defintely like everyone on here said consult with your team.  See if they can make these last treatments more tolerable for you! Best of luck Tracy, hate to hear this.  I'm thinking of you and praying for you always!  Be strong whatever you chose!

     

  • Laralyn
    Laralyn Member Posts: 532
    We were all there...

    I remember how that feels, vividly. For me, the narcotics for pain caused gastroparesis (my stomach and bowel shut down) and I wasn't able to keep anything down at all. I was hospitalized twice (3-4 days each time) for it, and had to have hydration IVs every other day for almost 3 weeks.

    My oncologist said I did "a little better than most" patients in terms of hospitalization time, which put it all into perspective for me.

    It's your decision for sure, but here's my advice, having been through it: you're trading a couple more weeks of misery for potentially years more on your life. Think of it as betting $100 on something that will return $100,000 with 90% odds you'll win. Who wouldn't take that bet?

    It feels endless when you're in it. I can promise you--as someone who was exactly where you are--that it ends and, a year later, it's just a bump on the road. 

  • hwt
    hwt Member Posts: 2,328 Member
    Laralyn said:

    We were all there...

    I remember how that feels, vividly. For me, the narcotics for pain caused gastroparesis (my stomach and bowel shut down) and I wasn't able to keep anything down at all. I was hospitalized twice (3-4 days each time) for it, and had to have hydration IVs every other day for almost 3 weeks.

    My oncologist said I did "a little better than most" patients in terms of hospitalization time, which put it all into perspective for me.

    It's your decision for sure, but here's my advice, having been through it: you're trading a couple more weeks of misery for potentially years more on your life. Think of it as betting $100 on something that will return $100,000 with 90% odds you'll win. Who wouldn't take that bet?

    It feels endless when you're in it. I can promise you--as someone who was exactly where you are--that it ends and, a year later, it's just a bump on the road. 

    I remember

    I just remembered when I said "I am done, I am not going back". Not sure if I meant it at the time, what I do recall is having a sense of control over an uncontrollable situation when I said it. Just saying it made me feel better but I know now that it caused my loving caregivers a sleepless night. I woke the next morning and trudged over to tx. I think I did it for them and not myself but it got me there. Think it through.....

  • backachedp
    backachedp Member Posts: 132
    My Husband was ready to give

    My Husband was ready to give up near the end of rad's he was too sick but I said we have to do this and finish and he did and is very glad he did.  I know from seeing him how sick and what it does to you but I hope you try and finish....but it is your desicion....like others have said if you get rehydrated maybe you will feel a bit better and get some strength to finish...you are in my Orayers and hope to hear some good news from you that it is getting better.  You have come so far.

  • Roar
    Roar Member Posts: 269 Member
    A few things

    1- I remember my team telling me how important it was to have good teeth because if you have to stop treatment in the middle  you would basically have to start over- so I went to the dentist and had my teeth fixed

    2- I remember my team telling me how well encapsulated the infected lymph node was when they removed it and they were sure it didn't travel- however rads and chemo has proven to be the best insurance policy - 

    3- I remember going into treatment thinking I was not letting anything kick my **** - and about 20 treatments later I was saying uncle. I clearly remember looking into the mirror and seeing a cancer patient that had just lost 40 lbs.and asking myself why would I put myself through this, as dying has to be easier than this. I couldn't drink or eat anything without forcing it down including water, no matter what drugs they were giving me. I continued googling with the baking soda and salt mixture 7 or 8 times a day- magic mouth wash was my appetizer - I would take a swig gargle as long as I could then swallow it followed my something I could eat or drink - I still have boxes of it - I will give you my email if you want me to mail it to you - I was going through 2 bottles of it a week at the end

    4- I agree with the rest - if you can finish the treatment then finish it- stopping now seems a mistake - but you know your body and its limits. I didn't know how tough the treatment would be. I will be 6 months out of treatment in a few days- seems like when I was in treatment the days wouldn't go fast enough and now that its over the months just pass by. You are going to get all the side effects, why not get all the benefits if you can.

    stay strong and may your higher power guide you to your decision 

    Ralph

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    I'm more confused now...

    I spent 4 hours today getting IV fluids.  Do I feel better?  Not really.  I am more confused now than ever.  My surgeon told me maybe 3 weeks of rads, oncologist says "30 rads, I never do less".  My mom, aunt and uncle are the only people in my family that have had cancer.  NONE of them had 30 rads?  My oncologist said 30 was the magic number?  I'm waiting now to hear back from my surgeon.  Dr. K (surgeon) said that the chance of the type of cancer I had returning was less than 10%.  My oncologist said it's 30-40%.  What?  I've never been sicker in my life and it seems like my oncologist is confused on certain things lately...he came in to check on my IV (which had already been removed) and to tell me 2 more hours of fluids.  Um...I had already had the amount he prescribed.  Several other things like that, but I'm too tired to type out, but equally as strange.  My hubby and I left there today with a lot more faith in my surgeon and the cancer team than the oncologist I was sent to.  (He is part of the "team" but at another location much closer to my home)

     

    Thank you all for the encouragement and advice.  I can't think too clearly right now, but I have had another oncologist tell me that he wouldn't have recommended 30 treatments.  It's all so weird.  I have information flying at me from all directions and I'm trying to process it all, but honestly until I can lay flat without jumping up to vomit, I can't do treatments anyway.

     

    Sorry for all the whining...I am miserable and tired of being told different things.  

  • sin9775
    sin9775 Member Posts: 199 Member

    I'm more confused now...

    I spent 4 hours today getting IV fluids.  Do I feel better?  Not really.  I am more confused now than ever.  My surgeon told me maybe 3 weeks of rads, oncologist says "30 rads, I never do less".  My mom, aunt and uncle are the only people in my family that have had cancer.  NONE of them had 30 rads?  My oncologist said 30 was the magic number?  I'm waiting now to hear back from my surgeon.  Dr. K (surgeon) said that the chance of the type of cancer I had returning was less than 10%.  My oncologist said it's 30-40%.  What?  I've never been sicker in my life and it seems like my oncologist is confused on certain things lately...he came in to check on my IV (which had already been removed) and to tell me 2 more hours of fluids.  Um...I had already had the amount he prescribed.  Several other things like that, but I'm too tired to type out, but equally as strange.  My hubby and I left there today with a lot more faith in my surgeon and the cancer team than the oncologist I was sent to.  (He is part of the "team" but at another location much closer to my home)

     

    Thank you all for the encouragement and advice.  I can't think too clearly right now, but I have had another oncologist tell me that he wouldn't have recommended 30 treatments.  It's all so weird.  I have information flying at me from all directions and I'm trying to process it all, but honestly until I can lay flat without jumping up to vomit, I can't do treatments anyway.

     

    Sorry for all the whining...I am miserable and tired of being told different things.  

    More Confused

    Dearest TracyLynn,  I feel so bad for you.  My brother got conflicting information, and is continuing to get different "stories" since the very beginning of his treatment (but not about major things like you are hearing) and it is totally driving him and his wife nuts. In my opinion, all you can do is pray about the decision you are going to make and have faith that you are "hearing" the correct voice in the answer you receive. While praying for the right direction to follow, try praying as well,  for the strength to go on.  We will be praying for you too. May God bless you, Tracy.