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Bye bye Inlyta

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

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

I am alive
Posts: 315
Joined: Jul 2012

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's picture
Jojo61
Posts: 1310
Joined: Oct 2013

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
Posts: 567
Joined: Nov 2013

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's picture
Phredswife
Posts: 162
Joined: Apr 2014

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

Srashedb
Posts: 482
Joined: Dec 2013

Damn!

Sarah

Suekub's picture
Suekub
Posts: 137
Joined: Apr 2013

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's picture
GSRon
Posts: 1304
Joined: Jan 2013

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's picture
foxhd
Posts: 3183
Joined: Oct 2011

..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's picture
BDS
Posts: 172
Joined: Aug 2012

 

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's picture
GSRon
Posts: 1304
Joined: Jan 2013

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
Posts: 482
Joined: Dec 2013

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's picture
GSRon
Posts: 1304
Joined: Jan 2013

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's picture
APny
Posts: 1998
Joined: Mar 2014

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

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

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's picture
Jan4you
Posts: 1327
Joined: Oct 2013

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's picture
GSRon
Posts: 1304
Joined: Jan 2013

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's picture
GSRon
Posts: 1304
Joined: Jan 2013

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's picture
Djinnie
Posts: 945
Joined: Apr 2013

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's picture
Djinnie
Posts: 945
Joined: Apr 2013

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's picture
GSRon
Posts: 1304
Joined: Jan 2013

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

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

I am glad to hear the meds are working well for you. I know what you mean about taking meds I won't take the pain killers until I really have to. I bet you can't wait for the trip! Sounds like you are going to need that extra baggage allowance, lol! There is nothing like travelling first class on those long flights, god the comfort, no struggling for leg room. We used to get bumped up when we came back to the UK as my husband worked for American Airlines. We always had to adhere to dress code; which was not really conducive to the long haul flights. Small price though!

I wish we all didn't have to suffer so much too, it gets so hard sometimes. We can only keep doing what we are doing and hoping for the best of outcomes! Take care:)

Djinnie xx

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Good news..!  I packed the engine with a lot of styrofoam, it weighs 68 pounds.. the allowance is 70 pounds.  So if my bathroom scale is correct, no extra charges..! Laughing  Also I can check up to three bags, no extra charge... just need someone to handle them for me...

Ron 

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

HI All..!  Just a quick update..  This is my 8th day post Inlyta, and 7th day on Afinitor.  Zero diarrhea..!  Amazing how nice it is to be "regular" again..!  Plus it appears I gained about 2 pounds, hard to be sure on my bathroom scale.   I have a little bit more energy I think..  But my QOL has greatly improved..!!  The message is that not all side effects happen to everyone.. yes you knew that... but..  for me, there is little to compare to, the Afinitor is very easy on me at this point....  Just hope it works..!!

Cheers..!!!

Ron

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

Ron,

     Here's wishing, hoping and praying that you will have nothing but good results, with great energy restored for your wonderful trip coming up! If I had 3 wishes Ron, I would definitely use one to cure you! You have always been there to help with smiles and to make a gloomy reports somehow seem comical!  Thanks for all the smiles you give to us!

                                                 Praying for good health!

                                                  Brenda

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Oh Brenda... how special you are..!!  OK, please don't waste that kind of wish on me... I am NOT that deserving.. but... if you did have just one wish come true.. then why not a cure for all of us..?  Now wouldn't that be grand..?

Ron  Wink

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

Ron,

     Of course a wish for a cure for us all would be AWESOME! But in the meantime it sounds like you are really feeling better, running and everything! Looks like vacation time for you! Have a great time and just keep getting better and better everyday!

                                          Prayers for good health,

                                           Brenda

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

So glad to hear you are doing well on this drug Ronnie! It must be a relief not having the trots all the time, no wonder you have but on a couple of pounds. All in all it sounds promising doesn't it? long may it continue! Will be praying for the best of results. 

Will be thinking of you on Monday:)

 

Djinnie xx

APny's picture
APny
Posts: 1998
Joined: Mar 2014

So great that you're doing well on your meds with no bad side effects. Hope it does the job! ITA with Djinnie... long may it continue and wishing you the best results!

twinthings's picture
twinthings
Posts: 409
Joined: Jun 2013

Hey Ron, I'm late to the conversation here but, I'm so happy to hear you're doing better today than when you started this thread.  It sounds like you're gonna be in great shape for your big trip.  I just bet the airline attendants are gonna go crazy over you.  You are quite the charmer, ya know! 

I'll be praying the Afinitor continues going easy on you and that it does it's job. 

 

Sindy

 

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

What can I say..??  Well just that all of you get me through the day..!!  Sindy, love the new piccy..!  I know you have had a rough time as well.. hope there are better days ahead..!!

Today is like a big time breath of fresh air..!  I have not felt this good in over a year now..!  I even ran a little bit.. (very liittle)..  

Love you all..!!!

Ron Laughing

Srashedb
Posts: 482
Joined: Dec 2013

Ron: What great news; no side effects and feeling energy. Once you get your cyberknife, you're on your way to the Isles.

Sarah

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Hope you all are having a great weekend..!!  Things are fine here... almost too good..!  In the last two days I only needed to take a single pain pill.  Not sure what that means... either my body is getting used to the Mets on my spine, or the Afinitor is working..?  Or..??  I doubt it is possible for the Afinitor to work that fast, after all it has only been 8 days.  No major side effects, just the fatigue, which is expected...

Next Saturday is the Sacramento Mile, Dirt Track race.. a big event out this way...  going to see a bunch of pals... going to be fun..!!

But first, Monday and Wednesday are two full doctor days... then start the Cyberknife, which should be pretty easy.. I hope...

Take Care All..!!!

Ron

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Well here I am.. Sitting in the chair. A needle in each arm. Just had 500 cc,s of blood removed. Blood tests done, waiting to get the Zometra infusion. And I have a harpist playing for me now. Oh yes had several nurses as observers. They don't get many people that get phlebotomy. Not bad.. My nurse today is Kathleen, she recently moved here from London. I am actually enjoying it.. Ron

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Hi All..! Just a quick update.. Afinitor is awesome..!  I mean almost zero side effects.. minor fatigue, some skin peeling, a couple of mouth sores (Magic Mouthwash works).  I actually have been able to run a couple of times... more exercize..!  And I put on about 6 pounds... nice.. Zero diarrhea.. I forgot how nice being regular can be...  I started what like 26 days ago.. I am very happy on this drug... Now it needs to work on the Mets..  

So, my opinion is, that each person needs to find what drug works for you.. Hopefully it is out there...

Be Well All..!!

Ron Smile

APny's picture
APny
Posts: 1998
Joined: Mar 2014

So glad to hear you're doing well on it with no bad side effects. Here's to hoping it does the job!! Really happy for you Smile

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