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IL-2 Update

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

Well, round 1 of HD IL-2 is behind me. Today is my 3rd day home.

I managed to take 11 of 14 infusions. I took the first 9 in a row, then we had some problems with elevated billirubin. In fact, I turned a nice shade of orange. My natural billirubin reading is always high normal, so that probably has something to do with that problem.

It's interesting that each day home seems to offer up a new set of side effects. Monday and Tuesday were all about peeling skin and itching. Today, it feels like I'm getting an infusion again with the nausea and flushed skin feelings. Overall, it's not so bad. I'm just hoping for good results. I start round 2 next Tuesday, April 23rd.

--David

faithlou's picture
faithlou
Posts: 38
Joined: Jan 2013

No growth is good news.  Waiting and scanning, waiting and scanning.........  that is our new normal.   Hope you are able to put it out of your mind and just live.  Living is a good thing. Cool  It will be interesting for us IL-2ers to compare notes as we go.  The Dr told me that this treatment may continue to work overtime.  ????  We will see.  Waiting and scanning, waiting and scanning......... 

Best of luck to all of us!

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

Lots of waiting, you're right. I'm trying to maintain some type of normalcy, although it's not the old normal, that's for sure!  And TW, that thought about something good happening down the road has definitely occured to me, but if not we'll move on.

Just trying to stay in motion! --David

faithlou's picture
faithlou
Posts: 38
Joined: Jan 2013

Scans on Tuesday.  Fingers crossed.

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

oops...duplicate post!  Sorry!

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

I've got my fingers, toes, legs, and eyes crossed for you....and it's really hard to type..Laughing

faithlou's picture
faithlou
Posts: 38
Joined: Jan 2013

Scans on Tuesday.  Fingers crossed.

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

Lou,

I hope things went well on Tuesday.

--David

faithlou's picture
faithlou
Posts: 38
Joined: Jan 2013

David,

I had to reschedule to 9/3.  Still waiting.

Lou

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Sorry!  Truly!

Of course my  fingers are cramping, but holding on! Smile

Bon Chance 

Michael

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

Lou,

i'll be thinking about you on the 3rd. I hope the scan results are great!

David

faithlou's picture
faithlou
Posts: 38
Joined: Jan 2013

Scan report: no new nodules are seen.  Pulmonary nodules unchanged.  Great! Enhancing nodule in pelvic area.  Not good. Disappointed. OK, enough of that, on to Votrient.  Good news, don't have to drive to Nashville for treatment, can take it here in Knoxville.  Hanging on to hope and faith.

David,

What is happening with you?

 

Lou

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

Hi Lou,

Good news on the pulmonary nodules!  I hope the Votrient is a success for you and I understand the happiness over no more travel!

I have my next scan on September 26th. I'm hoping for stability or better. If not, I'll be joining you on Votrient.

Keep fighting!

--David

 

 

foxhd's picture
foxhd
Posts: 1856
Joined: Oct 2011

I'm glad you will have to travel less. This stuff doesn't give up easily. Stay tough. Watch the years go by. Good luck with the votrient. David, good luck with your next scan. Mine is the 16th. We will see.

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

Thanks Fox. I've been wondering when your next scan was scheduled. I'll be thinking about you on the 16th. Like you said, we'll see!

--David

faithlou's picture
faithlou
Posts: 38
Joined: Jan 2013

Hey...I see you have a picture.  Looks much better than handle bars.  Laughing  Just checking in with you.  Sending positive thoughts on your upcoming scan.  I have been taking Votrient for over a week now.  No bad side effects so far.  Let me know how thing go for you.  Best of luck!!!!

Lou

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

I had my scan yesterday and it showed small growth on existing lung nodules and a few new lung nodules. I'll start Votrient as soon as it's approved by insurance.I was hoping for some kind of delayed response from IL2, that's not going to happen. So, we move forward.

Lou, it's good to hear you're doing well wth your intro to Votrient. I hope my intro goes well too

--David

faithlou's picture
faithlou
Posts: 38
Joined: Jan 2013

I was very disappointed when I found out the IL-2 was not doing it.  Even though I knew that it was a long shot to work, I guess I just got may hopes up because I was feeling so much better.   This rollercoster thing is just so hard sometimes.  It is difficult to fine out that a treatment is not working and then transition on to the next one while keeping the positive demeanor that you need to fight this stuff. Not easy!  Agility is the name of the game.  We shake it off and move on to the next thing.  I appreciate sharing with others going though these same challenges.  The votrient seems to be working well for me so far.    I hope you do well with the Votrient.  The only side effects for me is a mid day nap. Embarassed  I am having a MRI on Oct 8th to see how things are going.  btw It is so wonderful to be 10 minutes away from my treatment center now.  Good luck moving forward on the yellow brick road!

lou

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

You have a good attitude Lou, and here's hoping that the Votrient combined with the latent benefit of IL-2 will be your winning ticket. Just curious, what dosage of Votrient are you on?

faithlou's picture
faithlou
Posts: 38
Joined: Jan 2013

Alice,

My starting dose is 400mg per day.  They may take me up to 800mg if needed.  We will see.

Lou

 

GSRon's picture
GSRon
Posts: 1129
Joined: Jan 2013

Sounds good to me... 400 mg is a very safe dose, in my own non-Dr opinion.  Some of us had issues with 800 MG.. And we know some people have had good response as low as 200 mg...  Hope you like white hair..!

Good Luck..!!

Ron

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

Lou,

You did a great job of summing up my feelings about the IL-2 failure. I had a lot of hope, after the news of stability, that there would be a delayed response to IL-2. It hit me pretty hard when I got the scan results. I had a little pity party yesterday, but I'm back today. I got in a good bike ride and I'm educating myself on Votrient now, getting ready to start a new battle, or an old battle with new armor.

Thanks for your kind words. They help!

Alice, it's so good to hear from you. I've been worried about you.

David

 

 

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi David,

That new armor may very well be bolstered by the IL-2 even though it didn't provide the outcome that we hoped for on its own.  There have been several stories here from people that seemed to get a boost on follow-up treatments after failed IL-2.  Keep that positive attitude churning like your pedals on an uphill climb, this is not a sprint, its the endurance race you've trained for your whole life, YOU'VE GOT THIS!!!

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

Thanks Gary. We've gotta keep fighting!

David

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Gary's great response echoes my own feelings David. You do have this!  As we've discussed before, John  gives a lot of the credit for his current success to the IL-2. 

That doesn't mean that we weren't heartbroken when the IL2 was stopped. So a pity day was warranted; now kick ass!!!! We're kicking with you!

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

Thanks Alice. I'm going to give it my best and I hope the IL2 will increase my chances for a good run on Votrient. I believe I will be starting at 800mg. I see my oncologist on Friday. I still haven't heard from the specialty pharmacy about the Votrient. 

I saw where Lou had shortened her drive to 15 minutes to see her oncologist. I shortened mine from 5 hours one way to 2.5 hours one way! That's an improvement. 

David

BDS's picture
BDS
Posts: 90
Joined: Aug 2012

 

DMike I know this post is a little late but I was waiting for the results of my latest scans. Which were completed on Oct 7-8th. I have now been on Votrient for 14 months and it has decrease the size of all my tumors. My latest scan reports still shows continued shrinkage and my blood work is good. The worse thing about Votrient is the diarrhea but otherwise I live my life.  Votrient is not going to cure me but hopefully it will act as a bridge drug until the next generation of RCC drugs receives FDA approval. - BDS      

 

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

Hi BDS,

I hope I get the kind of results you've seen from Votrient. I'd be very happy! I have the same thoughts as you ..."Votrient is not going to cure me but hopefully it will act as a bridge drug until the next generation of RCC drugs receives FDA approval."  Thank you for sharing. 

David

GSRon's picture
GSRon
Posts: 1129
Joined: Jan 2013

Hi BDS.. Great news. FYI for me Imodium stopped working. But the generic stuff worked great for me. Ron

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