Time for a change

foxhd
foxhd Member Posts: 3,181

This will be an interesting year. Having survived last years burden of pain and spinal canal mets is amazing. Weakness in my right arm and hand is still significant but it is also still improving. No one is aware of my neuro problem until I need to pick up something over a few pounds or when I need to tie my shoe or pick up a pencil or loose change. I have been able to relearn my guitar skills which is an awesome gift. I could not be happier. Otherwise it would have been 40 plus years of wasted practicing. Hooray for small victories.

On the other hand, my cancer and its treatments have taken quite a toll. Unfathomable amounts of radiation from scans and treatment. (well over 30 ct scans with and without contrast, xrays, etc, and 4 weeks of radiation). The votrient has kept me fairly stable but at a cost. I was rock solid at nearly 200#. Now I'm in the 140's and weak. Near constant fatigue, nausea and diarrhea suck. I really can't go anywhere. But I'm alive.

Recent complaints have led to uncovering mets in spine, several ribs, arm and leg. Soft tissue mets are fairly stable but using votrient may be near the end. It has been a year of votrient and although some people stay with it for longer periods, a year isn't bad.

So over the next few weeks I will meet with the radiation oncologist and I will push to have ALL mets zapped. I have also been pushing my onc. toward restarting nivo. Nivo during the trial phase did wonders. Zero side effects. Full workouts. He wants to discuss other options so we will see.

Anyway, this past year was a challenge. If I was a cord of wood, I'd only have a few logs left. Having to move on with treatments also means that options are fewer. But not gone. In my fight, my perfect world looks like this:

1. Radiate all tumors. I've had good response from this. I'm hoping that even the soft tissue mets can be damaged enough to allow for;

2. Nivolumab. When I was on trial in 2013, nivo wiped out nearly 20 bone and soft tissue mets. All without side effects which make my life miserable. Oh how the possibility of gaining weight, strength, and an appetite excite me. It takes alot to muscle around a Harley and I am looking forward to this summers adventures. I'm sure I can still do it all. I want to weight train and run. At least bicycle with intensity.

I'll have to see how my meetings go. I have not been defeated mentally or physically. I look forward to my next phase of care. I'm motivated and up for any challenge. I have an ability to tolerate bad things happening to me and then moving on. From serious doubts about surviving 2015, to excelling in 2016, I am ready.

And have I mentioned just how happy I am to have my medical marijuana certification? It is sooooo helpful. I will come right out and tell you that without smoking pot this last year, I don't think I would have survived. Those of you not opposed to it need to consider it. It has been a godsend.

I love you all. We do this together. Thank you for your help and support. I hope I've been able to give back what I've gotten from everyone. What goes around, comes around. Good Karma for all!

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Comments

  • Foxy, you are a pillar of

    Foxy, you are a pillar of strength, endurance and inspiration.  Keep fighting the good fight.  I hope you get all those mets zapped, and you get the nivo.  I know you have documented your treatment, but I forget-why would they take you off of nivo (which was successfull with no side effects) and keep you on Votrient?  Does not seem to make sense.

  • Jan4you
    Jan4you Member Posts: 1,330 Member

    Foxy, you are a pillar of

    Foxy, you are a pillar of strength, endurance and inspiration.  Keep fighting the good fight.  I hope you get all those mets zapped, and you get the nivo.  I know you have documented your treatment, but I forget-why would they take you off of nivo (which was successfull with no side effects) and keep you on Votrient?  Does not seem to make sense.

    My gosh, Foxy-baby, your post

    My gosh, Foxy-baby, your post brings tears to my eyes.. of love for you!!

    WOWEE you have been tested for sure!

    Glad to know there is a window of hope still brewing too!

    Now when you start to droop a little, read out posts as WE, together will offer you our strength, hope and perseverance for you to hold onto. Touch these pages of care from us, then BREATHE in all our good wishes

    hopes and love for you, my dear!

    Our loves  is looking good on you!!

    Healing hugs, Jan

  • Footstomper
    Footstomper Member Posts: 1,237
    Common sense

    Is, according to Einstein, that level of prejudice laid in before the age of five. Now where I come from Albert is known as a bit of a brainy geezer. but...I never knowinglyy took a carcinogen. Ofcourse the  key words are "Never knowingly", but I smoked for forty years. Here I am with plentiful mets in my lungs. It seems lierally insane to be smoking ANYTHING at this point.

  • I am alive
    I am alive Member Posts: 315
    love you back

    your honesty about this process and your journey in it gives us all a ringside seat at RCC Reality 101. Your terrifying year of 2015 with its downs & ups shows us that anything can happen, and tells us to never give up hope or relinquish determination. You tell us that while unpleasant and lifestyle-limiting, drug side effects dont have to dampen our love of life. you show us how to be brave and determined. you show us that we have choice at every juncture. We don't have to let the bad things define us.  And look! Your arm weakness is still improving after all this time! that's because you insist on working on that improvement. You believe in improvement. Do you know how many people would simply slip into defeatism and let the arm hang, useless? You teach us so much.

    i wish you continued improvement and joy and adventure in 2016, Fox. You are my hero. But tell me,  why is your onc hesitating to restarti Nivo? It seems a no-brainier. Lots of folks benefit from re-starting once-successful drugs. What other drug does he/she want to try - and why? 

    Love you!

  • Pandabear1011
    Pandabear1011 Member Posts: 123
    Go Foxy!!!

    2016 Is gonna be your year!! Sending good vibes and good karma your way! Love your positive attitude...Hugs from Panda in Texas.

  • todd121
    todd121 Member Posts: 1,448
    You are an inspiration to me - believe me I need it - Thank you!

    Nuff said.

    Hugs,

    Todd

  • Allochka
    Allochka Member Posts: 993 Member
    todd121 said:

    You are an inspiration to me - believe me I need it - Thank you!

    Nuff said.

    Hugs,

    Todd

    Fox, you are awesome!
    And

    Fox, you are awesome!

    And message for kidney cancer - NO PASARAN! :-)

  • BDS
    BDS Member Posts: 172
    To A Happy and Healthy 2016

    Fox, best of luck for a health improving and Happy 2016. I am sure that all the get well wishes from the members here at CSN bring a smile to your face.

     

     Please keep us posted - Take Care -BDS     

  • Dave418
    Dave418 Member Posts: 95
    May all your wishes come true

    May all your wishes come true Fox so you can continue on inspiring us!!

    Dave

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Foxy, you humble me. Your

    Foxy, you humble me. Your attitude and determination are what have gotten you to this point. You are a shining example as to how to kick cancer's butt! With STYLE!

    I also love your plan of action. It is a very sound plan. I can feel your enthusiasm in your post. Keep us posted on your appointments.

    Glad your medicinal marijuana is working for you - getting relief can help you move forward and upward - and it obviously is having that effect on you!

    I love you, too, Foxy! Our CSN family is very proud of you!

    Big hugs

    Jojo

  • foxhd
    foxhd Member Posts: 3,181
    Jojo61 said:

    Foxy, you humble me. Your

    Foxy, you humble me. Your attitude and determination are what have gotten you to this point. You are a shining example as to how to kick cancer's butt! With STYLE!

    I also love your plan of action. It is a very sound plan. I can feel your enthusiasm in your post. Keep us posted on your appointments.

    Glad your medicinal marijuana is working for you - getting relief can help you move forward and upward - and it obviously is having that effect on you!

    I love you, too, Foxy! Our CSN family is very proud of you!

    Big hugs

    Jojo

    nothing in stone yet

    All this is the way I would like it to go. But there are issues. I'm asked about the nivo often. I was only on it as a phase one trial. Drug companies weed out less than perfect results. Now it depends on cost, insurance, and whether it would still work for me. Or is it like IL-2 where you only get one series at it? My doc maybe looking at a new combo for me based on immunotherapy. It will be an interesting couple of weeks.  I'll keep you posted. The funny thing about all of this is, "If I wasn't so sick, I'd feel really damn good!"

  • Skagway Jack
    Skagway Jack Member Posts: 224
    foxhd said:

    nothing in stone yet

    All this is the way I would like it to go. But there are issues. I'm asked about the nivo often. I was only on it as a phase one trial. Drug companies weed out less than perfect results. Now it depends on cost, insurance, and whether it would still work for me. Or is it like IL-2 where you only get one series at it? My doc maybe looking at a new combo for me based on immunotherapy. It will be an interesting couple of weeks.  I'll keep you posted. The funny thing about all of this is, "If I wasn't so sick, I'd feel really damn good!"

    Fox, Ive said it before, but

    Fox, Ive said it before, but you the Man!  I had to laugh at your last statement because my brother used to always tell me when we would wrestle or play football as I complained of my injuries..."it will feel better when it quits hurting".  I hope you have a great year and can get some time on that Harley.   

    Skagway

  • Srashedb
    Srashedb Member Posts: 482
    Radiation

    I never thought I would be a radiation fan until it became my husband's weapon of choice. I was so fearful of it that my kids never had an x-Ray.

    if, as it appears, you are a responder, I hope they zap you thoroughly; we have been told that none of the meds work on bones so it can is either radiation or surgery unless it is not possible in which case we are screwed.

    radiation effects, we have been told, take about 30 years to develop; that is a damned good risk!

    As to the votrient, you were at the end of your rope with the side-effects so say goodbye to that; there are some combination drugs showing promise (from Smart Patient forum) so your onc may have that in mind.

    all in all, it sounds like your results were mostly ok; I recall reading one of your posts from 2014 where you wondered if that would be your last thanksgiving. You can do this and it will be another spring and summer of Fox!

    Sarah

  • dancnbear1
    dancnbear1 Member Posts: 86
    You are an inspiration to us

    You are an inspiration to us all. Keep fighting the good fight and Ill say a prayer tonight that you get your NIVO.

  • foxhd
    foxhd Member Posts: 3,181
    Srashedb said:

    Radiation

    I never thought I would be a radiation fan until it became my husband's weapon of choice. I was so fearful of it that my kids never had an x-Ray.

    if, as it appears, you are a responder, I hope they zap you thoroughly; we have been told that none of the meds work on bones so it can is either radiation or surgery unless it is not possible in which case we are screwed.

    radiation effects, we have been told, take about 30 years to develop; that is a damned good risk!

    As to the votrient, you were at the end of your rope with the side-effects so say goodbye to that; there are some combination drugs showing promise (from Smart Patient forum) so your onc may have that in mind.

    all in all, it sounds like your results were mostly ok; I recall reading one of your posts from 2014 where you wondered if that would be your last thanksgiving. You can do this and it will be another spring and summer of Fox!

    Sarah

    Sarah,

    We are always on the same page. Next life around, let's meet early and plan our lives. We think alike. Thank you.

    Footsie, there are other methods to consume thc. I don't like to smoke either but at this point, who cares? The best part is being able to eat. Maryjane is not just for students getting a buzz before history class. Oh the bygone days of pizza and beer. Food has lost it's appeal. My lunch might otherwise come in an iv bag. I keep in mind the anticarcinogenic properties of MJ. Plus playing guitar after a smoke is a lot better than playing guitar after taking votrient. Ever tried marinol?

    Jack, sort of like head banging. It feels good when you stop!

    Jojo, I love you. Thanks. And back at you.

    Jan, you sweet wonderful woman. Always with complete support for all. Asking for nothing in return. But too bad. Every day I sent karma straight your way with no obstructions.

    Posi ment, good nickname. I think my onc wanted to stop votrient last month. I refused because despite it's side effects, it has kept me stable for the year. I hate to concede to wimpy complaints of it's side effects. Sometimes it is like being the target of a bully. I need to just pull my sh!t together. but it is sucking away my zest.

    I am Alive, I am better than I expected at 1 year. My expectation is 18 months before my neuro reaches full potential. So, still a way to go. Now if I could get stronger. I went out with a buddy for a beer. I bought. Mine was in my left hand, his in my right. The closer I got to him, the more my arm was fading. At only a few feet to go, it dropped like a rock. Everyone laughed. I told my friend, "That one was yours."

    Panda, Todd, Allochka, BDS,Dave, D bear, Thanks for keeping the faith. I'm sincere when I say we do this together. The MVP's of our site where assists are more valuable than individual accomplishments. Especially in a contest where the stakes are so high, survival is like winning the national championship.

    We all know that stats can be misleading. Here's one I hope is true. By making it to 5 years, the odds of making it to 8 years increase. I told my onc 5 years ago that anything over 1 year survival was a gift and I thanked her for getting me there. I can not complain. I owe everything to her and Smilow Cancer Hospital.

    Lastly, cancer is an egocentric disease. To everyone who visits this site regularly out of concern for others, that is something special. Those who want a quick hit of info and are then gone have a different motivation. For karma to work, it takes an unselfish sharing and desire to help others even during trying times.

    FLY.

  • resistance2
    resistance2 Member Posts: 16
    Fox,
    You have an awesome

    Fox,

    You have an awesome action plan for this year ! and many more to go.

  • mrou50
    mrou50 Member Posts: 389
    Fox

    Fox at this point you could almost starting treating others with this disease.  I so love your spirit and will, you truly do all of us proud.  As for the weight loss I have weight to give so I am enjoying it so far almost 50 pounds down, this is by far the best weight loss program I have ever been on for productivity.  To bad it comes with a dark side.  In your opening comment you mentioned Votrient may stop working soon, that was my first drug and I have to admit I was a little depressed when it stopped working becuase I just felt like what happens when I run out of options, but I figure life will take care of itself, for now I am just enjoying my time, and HEY I am losing weight so what the hell.

     

    Mark

  • firedude21
    firedude21 Member Posts: 52
    Fox

    Fox -

    You were the first person that I contacted on this forum

    when I found that I had moved to stage 4. You were an inspiration to me then and you are an inspiration to me now. You are one tough son of a gun. Wishing you and all of us nothing but the best. 

    firedude21

  • Fox

    Fox -

    You were the first person that I contacted on this forum

    when I found that I had moved to stage 4. You were an inspiration to me then and you are an inspiration to me now. You are one tough son of a gun. Wishing you and all of us nothing but the best. 

    firedude21

    firedude21-as we say in

    firedude21-as we say in Jersey-how ya doin'?

  • angec
    angec Member Posts: 924
    Hey, Foxy!  I am sorry to

    Hey, Foxy!  I am sorry to hear of some new mets.  Sometimes they add avastin for the bones.  But, if Votrient is popping up new mets, then probably time to move on??  Have you ever heard of this 714X that they are giving in Cananda? I heard about it through a nurse that said she had cancer and it cured her.  http://www.cerbe.com/714X#51.  How about taking the CBD oil or one mixed with THC?  People also swear by that and the way they do it there are no carcinogins.  In any case.  The trial hospitals have new drugs where they take part of the tumor and add some cells to it and put it back in and the tumor goes away. My brain won't let me think of the name of it, but i know there are trials for it at Sloans, and perhaps by MD also.  I have no doubt that you will overcome this latest stint!  The Votrient is a rough drug if you take anything higher than 200 mgs.  It does enough with the side affects at that dosage so i can image a higher dose. I have faith in you, your positive attitude throughout all of this, is encouraging!  I know you will ride that Harley this summer! Heck, maybe even in the spring!  Sending hugs, love and smiles!

    Ange