Bye bye Inlyta

GSRon
GSRon Member Posts: 1,303 Member

Time for a change. Afinitor, Cybetknife, Xgeva and a Phlebotomy. Are we having fun yet?? Ron

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Comments

  • I am alive
    I am alive Member Posts: 315
    Bummer, Ron

    Sorry to hear it. And right before your fabulous vacation. On the other hand, you've got a fabulous vacation a head of you to help you ease into this new thing. Deep breaths.

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Sorry to hear, Ron. There is

    Sorry to hear, Ron. There is the vacation to look forward to....and I hear that the phlebotomy nurses are the really HOT nurses.

    Big hugs, hon.

    Jojo

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    rough day

    Hey Ron.  Sounds like it was a rough day.  We have had so many of those that we sit there like zombies when we get the good news.  This RCC is really rough on the psyche at times.  It's like a rollercoaster.  I'm sorry that you got some undesirable news today.  I just know you will be ok.  You have the most wonderful spirit and attitude.  I love how you go for the gusto, and I really hope that you enjoy your vacation and take a break from all this.  Afinitor was a good drug for HB.  Few side-effects.  Definitely better than Inlyta for us.  My husband actually felt pretty good on Afinitor and it was working for him.  Stopped it to have the nephrectomy and then new doctor wanted him on Inlyta.  Think positive.  Best wishes. 

    Annie

  • Phredswife
    Phredswife Member Posts: 162
    Change.

     Bother. Don't know what else to say but thinking of you and hope your holiday is awesome. Hugs Melissa

  • Srashedb
    Srashedb Member Posts: 482 Member
    Damn!
    Sarah

    Damn!

    Sarah

  • Suekub
    Suekub Member Posts: 137
    Srashedb said:

    Damn!
    Sarah

    Damn!

    Sarah

    Sorry to hear your news

    Ron, 

    so sorry that it appears that Inlyta is not doing it for you. Onwards to the next treatment. As you know I have been taking Afinitor since December and have found it a very easy drug to take - no noticeable side effects except some fatigue but not a huge issue. i guess it will all start happening again after your holiday. Still not sure if it is working but will be scanned again at the end of July. 

    hopefully, you won't spend too much time worrying to enjoy your break. Yet another hurdle but sure you can do it!

    Take care

    Sue

     

  • GSRon
    GSRon Member Posts: 1,303 Member
    Suekub said:

    Sorry to hear your news

    Ron, 

    so sorry that it appears that Inlyta is not doing it for you. Onwards to the next treatment. As you know I have been taking Afinitor since December and have found it a very easy drug to take - no noticeable side effects except some fatigue but not a huge issue. i guess it will all start happening again after your holiday. Still not sure if it is working but will be scanned again at the end of July. 

    hopefully, you won't spend too much time worrying to enjoy your break. Yet another hurdle but sure you can do it!

    Take care

    Sue

     

    Thank You..!!

    Thanks all.. you are the best..!!  I am OK, believe it or not.  I knew it was coming..   It is part of the journey.. sigh.. just not the fun part..  And Sue, thank you so much on the side effects report..!  This is what we do here.. help each other, the best we can..!!

    And Jo Jo..  the Nurses are most attractive because they care... not just the exterior physical beauty. There are several I would love to have as my personal assistant.. oh and all of you as well...  Cool

    One thing I have observed the last two years.. is that the medical staff I deal with really care.. likely more than they should.  The Nurse I met with first today had a lousy Poker Face.. I knew what was coming, yet she danced around some of my questions.. then left the room in a hurried manner,  My Onc did the same thing..  I can only imagine how badly it affects them when they have to give bad news.. Talk about work stress..!!  And my one favorite Nurse totally ignored me today... she looked right past me.. duh..  I will e-mail her tomorrow and try to ease her tension a bit.

    So, if ANYONE has any doubts how valuable proper follow up is... well, just read my story... 90 days ago no signs of any bone Mets, today, yes, big time.  They can grow that quick.. and the good news is that it got caught before anything snapped...  I am so thankful for the great medical care I am getting.. even when the news is not good...

    Be Well All..!!

    Ron

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

    Thank You..!!

    Thanks all.. you are the best..!!  I am OK, believe it or not.  I knew it was coming..   It is part of the journey.. sigh.. just not the fun part..  And Sue, thank you so much on the side effects report..!  This is what we do here.. help each other, the best we can..!!

    And Jo Jo..  the Nurses are most attractive because they care... not just the exterior physical beauty. There are several I would love to have as my personal assistant.. oh and all of you as well...  Cool

    One thing I have observed the last two years.. is that the medical staff I deal with really care.. likely more than they should.  The Nurse I met with first today had a lousy Poker Face.. I knew what was coming, yet she danced around some of my questions.. then left the room in a hurried manner,  My Onc did the same thing..  I can only imagine how badly it affects them when they have to give bad news.. Talk about work stress..!!  And my one favorite Nurse totally ignored me today... she looked right past me.. duh..  I will e-mail her tomorrow and try to ease her tension a bit.

    So, if ANYONE has any doubts how valuable proper follow up is... well, just read my story... 90 days ago no signs of any bone Mets, today, yes, big time.  They can grow that quick.. and the good news is that it got caught before anything snapped...  I am so thankful for the great medical care I am getting.. even when the news is not good...

    Be Well All..!!

    Ron

    The tougher you are

    ..the more you get tested, Ron. You are becoming our pharmaceutical crash test dummy. Said affectionately. I am so glad that you are being so closely watched. Being a favorite of your caregivers does provide a little more something in your favor. Maybe you, Sue and DJ can get a special group treatment plan. So much like trying to crack a safe. The right combination is out there. We just have to find it.

  • BDS
    BDS Member Posts: 172
    Look Forward not Back!

     

    Sorry, to hear the bad news about Inlyta not working for you. Please enjoy vacation it sounds like it will be totally awesome - Wish I could go! We will all hope/pray for the best. - BDS  

     

  • GSRon
    GSRon Member Posts: 1,303 Member
    BDS said:

    Look Forward not Back!

     

    Sorry, to hear the bad news about Inlyta not working for you. Please enjoy vacation it sounds like it will be totally awesome - Wish I could go! We will all hope/pray for the best. - BDS  

     

    OK, so I just messaged the

    OK, so I just messaged the one Nurse... told her I missed her... and then asked a bunch of questions for mostly my Dr.  Like what about Cabo..?  And what about some Clinical Trilas..?  Oh yes and scheduling the next set of visits...     

    I guess it is true... "A little bit of sugar makes the medicine go down..." Surprised  (I bet some of you will have fun with that one....ooops..)

    Ron

  • Srashedb
    Srashedb Member Posts: 482 Member
    GSRon said:

    OK, so I just messaged the

    OK, so I just messaged the one Nurse... told her I missed her... and then asked a bunch of questions for mostly my Dr.  Like what about Cabo..?  And what about some Clinical Trilas..?  Oh yes and scheduling the next set of visits...     

    I guess it is true... "A little bit of sugar makes the medicine go down..." Surprised  (I bet some of you will have fun with that one....ooops..)

    Ron

    Under control

    Ron:

    what seemed awful last night has swung back to positive and a new plan is coming together.

    This forum truly is one of information AND encouragement.

    Sarah

  • GSRon
    GSRon Member Posts: 1,303 Member
    Srashedb said:

    Under control

    Ron:

    what seemed awful last night has swung back to positive and a new plan is coming together.

    This forum truly is one of information AND encouragement.

    Sarah

    Interesting.. and worth

    Interesting.. and worth sharing.  I am on my 3rd day of no Inlyta or Immodium.  I have had no diarrhea, my foot pain is almost gone, and I feel better mostly...  Except the back pain has intensified.  So, I have asked for pain pills... being it is Friday, if I wait until I am screaming, I may have to wait for any relief..

    And the Afinitor showed up a few minutes ago... time to start the next drug..!

    And I have my MRI, Phlebotomy, Xgeva all scheduled for the same day. the 21st.  It will be a long day.. but once the MRI is done, I can schedule the Cyberknife, which should give me some relief for my back.

    Are we having fun yet..??

    Ron

  • APny
    APny Member Posts: 1,995 Member
    GSRon said:

    Interesting.. and worth

    Interesting.. and worth sharing.  I am on my 3rd day of no Inlyta or Immodium.  I have had no diarrhea, my foot pain is almost gone, and I feel better mostly...  Except the back pain has intensified.  So, I have asked for pain pills... being it is Friday, if I wait until I am screaming, I may have to wait for any relief..

    And the Afinitor showed up a few minutes ago... time to start the next drug..!

    And I have my MRI, Phlebotomy, Xgeva all scheduled for the same day. the 21st.  It will be a long day.. but once the MRI is done, I can schedule the Cyberknife, which should give me some relief for my back.

    Are we having fun yet..??

    Ron

    So sorry you are facing all

    So sorry you are facing all this. Wishing you the best!

  • brea588
    brea588 Member Posts: 240
    GSRon said:

    Interesting.. and worth

    Interesting.. and worth sharing.  I am on my 3rd day of no Inlyta or Immodium.  I have had no diarrhea, my foot pain is almost gone, and I feel better mostly...  Except the back pain has intensified.  So, I have asked for pain pills... being it is Friday, if I wait until I am screaming, I may have to wait for any relief..

    And the Afinitor showed up a few minutes ago... time to start the next drug..!

    And I have my MRI, Phlebotomy, Xgeva all scheduled for the same day. the 21st.  It will be a long day.. but once the MRI is done, I can schedule the Cyberknife, which should give me some relief for my back.

    Are we having fun yet..??

    Ron

    gs

    so sorry all of this is happening.  You know we all are here to support you .  You are a great inspiration to this forum.  Sometimes when it rains it pours, but hopefully the next drug will work wonderful for you.  Praying for you.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    Oh Ron, glad you told

    Oh Ron, glad you told us..sigh..

    But I would look you in the eyes, smile and send you hopeful, healing wishes

    to be cashed in whenever you need them!

    Hugs, Jan

  • GSRon
    GSRon Member Posts: 1,303 Member
    Jan4you said:

    Oh Ron, glad you told

    Oh Ron, glad you told us..sigh..

    But I would look you in the eyes, smile and send you hopeful, healing wishes

    to be cashed in whenever you need them!

    Hugs, Jan

    Thanks Jan..!  You have the

    Thanks Jan..!  You have the most beautiful smile..!!!  All of you make my day... every day..!!

    I am so thankful... I have great insurance and great medical staff.  So, yes, I left the Dr office Wednesday just after 5 PM, and this morning the Afinitor arrived.  I messaged that I needed something for pain.. got a call back from the attending Doc and within 2 hours I got a call to pick up the drugs..  Popped a pain pill about an hour ago, and already got some relief..!  Oh yes the Dr I talked,  to was very emphatic.. "We will help you with your pain... holler if these drugs are not strong enough.."  Then she called back and told me to be careful if I take too many I may get constipated.. so she gave me another suggestion or two...  All along she apologized, like it was her fault..  Yes they all care..!  Either that or they are great actors..!!  Then I come here... and more caring people here... so once I (mentally) get past the bad part of it all... I am a very rich person.. having all of you to cheer me on...     

    Be Well All..!!

    Ron

  • GSRon
    GSRon Member Posts: 1,303 Member
    GSRon said:

    Thanks Jan..!  You have the

    Thanks Jan..!  You have the most beautiful smile..!!!  All of you make my day... every day..!!

    I am so thankful... I have great insurance and great medical staff.  So, yes, I left the Dr office Wednesday just after 5 PM, and this morning the Afinitor arrived.  I messaged that I needed something for pain.. got a call back from the attending Doc and within 2 hours I got a call to pick up the drugs..  Popped a pain pill about an hour ago, and already got some relief..!  Oh yes the Dr I talked,  to was very emphatic.. "We will help you with your pain... holler if these drugs are not strong enough.."  Then she called back and told me to be careful if I take too many I may get constipated.. so she gave me another suggestion or two...  All along she apologized, like it was her fault..  Yes they all care..!  Either that or they are great actors..!!  Then I come here... and more caring people here... so once I (mentally) get past the bad part of it all... I am a very rich person.. having all of you to cheer me on...     

    Be Well All..!!

    Ron

    Doo Doo sometimes happens

    OK, so I woke up at 3 AM.. not sure if the pain woke me or not.. but here I am.. Sitting up has reduced the pain, so I am holding off on taking another pain pill until it gets bad again.  But I feel like I slept 8 plus hours..!  My energy level has been better than it has been in just over a year..!  So, last night I went and assembled my spare race engine.. done deal..! This project had been sitting here for a month.  But, it just won't fit in my one small suitcase, so it will have to go in a larger one, then I will add styrofoam to keep in from moving.  Yes, the weight police will scold me and charge me for over weight.. it weighs just over 60 pounds. No  big deal...

    The Doo Doo... just got an e-mail from my one racer pal.. in the Friday practice he crashed and broke his pelvis.. he is to have surgery today.. but will miss the IOM races..  Booooooo.... poor guy.. the last race before the trip..  I suspect he won't do that one race next year...  Glad he is going to be OK.. most important..  So, out of his bad news, gives me more incentive to make it...  Someone has to look out for his bikes that are headed with mine to the IOM.  I will miss him not being there...

    As I learned at an early age.. someone is always worse off than me... even though his injury is not as serious as those of us Cancer folks....still stinks...

    Be Well All...

     

    Ron - better living with drugs..! Cool

  • Djinnie
    Djinnie Member Posts: 945
    GSRon said:

    Doo Doo sometimes happens

    OK, so I woke up at 3 AM.. not sure if the pain woke me or not.. but here I am.. Sitting up has reduced the pain, so I am holding off on taking another pain pill until it gets bad again.  But I feel like I slept 8 plus hours..!  My energy level has been better than it has been in just over a year..!  So, last night I went and assembled my spare race engine.. done deal..! This project had been sitting here for a month.  But, it just won't fit in my one small suitcase, so it will have to go in a larger one, then I will add styrofoam to keep in from moving.  Yes, the weight police will scold me and charge me for over weight.. it weighs just over 60 pounds. No  big deal...

    The Doo Doo... just got an e-mail from my one racer pal.. in the Friday practice he crashed and broke his pelvis.. he is to have surgery today.. but will miss the IOM races..  Booooooo.... poor guy.. the last race before the trip..  I suspect he won't do that one race next year...  Glad he is going to be OK.. most important..  So, out of his bad news, gives me more incentive to make it...  Someone has to look out for his bikes that are headed with mine to the IOM.  I will miss him not being there...

    As I learned at an early age.. someone is always worse off than me... even though his injury is not as serious as those of us Cancer folks....still stinks...

    Be Well All...

     

    Ron - better living with drugs..! Cool

    Sorry to hear your news!

    Hey Ronnie my friend, Sorry to hear your recent news, I am so glad you have such a good team taking good care of you. We always need the reassurance that the experts have got our backs. I hope the pain killers allow you some respite, I assume if you need anything stronger over the weekend; you have a contact number.  I hope all goes well with your tests, you say the cyber knife will be after the 21st, when are you due to leave for Isle of Man?.

    I hope you have a good weekend Ronnie! You at least have got some of your energy back to go with that indefatigable spirit of yours:)

     

    Djinnie xx

  • Djinnie
    Djinnie Member Posts: 945
    Djinnie said:

    Sorry to hear your news!

    Hey Ronnie my friend, Sorry to hear your recent news, I am so glad you have such a good team taking good care of you. We always need the reassurance that the experts have got our backs. I hope the pain killers allow you some respite, I assume if you need anything stronger over the weekend; you have a contact number.  I hope all goes well with your tests, you say the cyber knife will be after the 21st, when are you due to leave for Isle of Man?.

    I hope you have a good weekend Ronnie! You at least have got some of your energy back to go with that indefatigable spirit of yours:)

     

    Djinnie xx

    Don't know if you follow the

    Don't know if you follow the Tour de France, I am bummed that our man from IOM, Omega Pharma Quickstep rider Mark Cavendish is out with a shoulder injury. I love watching him race. The weather conditions have been really bad this year though. Chris Froom is also out, but the new team leader from Team Sky UK, is running eighth now, which is not bad. 

    Djinnie x

  • GSRon
    GSRon Member Posts: 1,303 Member
    Djinnie said:

    Don't know if you follow the

    Don't know if you follow the Tour de France, I am bummed that our man from IOM, Omega Pharma Quickstep rider Mark Cavendish is out with a shoulder injury. I love watching him race. The weather conditions have been really bad this year though. Chris Froom is also out, but the new team leader from Team Sky UK, is running eighth now, which is not bad. 

    Djinnie x

    Hi Dj..!!  Thanks for the

    Hi Dj..!!  Thanks for the kind words.. we both know the ups and downs of this disease..  We both keep moving forward..!  Sorry I do not follow the TDF... but have heard of Cavendish from others...

    I am to fly out on the 11th... so less than a month from now..

    I must say, these drugs work wonderfully... I wait until the pain gets to the point of near my tolerance level.. take a pill and in about 30 minutes get relief..!!  I only have taken a single pill at a time, even though the instructions say I can take one or two.  I am one of those people that do not want to take pills unless I really need them..  Hope this trend continues... but yes, if I get too much pain Stanford has a 24 hour phone system, and they will wake up a doctor at any hour to get authorization as needed.. however as the pharmacy is not open 24 hours, not much can happen after 8 PM.  Stanford is huge, so I guess they have a rotation of what doctor ends up on call each day..  great service..!

    So, slowly I am packing.. I need to find out if my engine poses a problem being well over weight... going to be interesting to handle all the luggage.. Oh Sky Cap..! Cool  And yes, I did get an upgrade on my flights.. so first class, here I come..!!  There is also extra baggage allowance, which is more important than the free booze that I won't be drinking... 

    Again, thank you all for the kind words...  Just wish we all were well and rid of this disease.. sigh..

    Ron