I'm done

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

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

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

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

.....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

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

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 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 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.....

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 said:

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.  

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.