Bye bye Inlyta

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

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

Srashedb said:

Damn!
Sarah

Damn!

Sarah

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 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...  

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 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.

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 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.

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..! 

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