IL-2 Update

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Comments

  • faithlou
    faithlou Member Posts: 41
    DMike said:

    Lou,

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

    David

    No more IL-2 on to Votrient

    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
    DMike Member Posts: 259
    faithlou said:

    No more IL-2 on to Votrient

    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

    Votrient

    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
    foxhd Member Posts: 3,181
    DMike said:

    Votrient

    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

     

     

    Do good Lou

    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
    DMike Member Posts: 259
    foxhd said:

    Do good Lou

    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.

    Waiting

    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
    faithlou Member Posts: 41
    DMike said:

    Votrient

    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

     

     

    Votrient

    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
    DMike Member Posts: 259
    faithlou said:

    Votrient

    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

    Goodbye IL2

    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
    faithlou Member Posts: 41
    DMike said:

    Goodbye IL2

    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

    Moving forward

    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
    alice124 Member Posts: 896 Member
    faithlou said:

    Moving forward

    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

    Votrient

    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?

  • DMike
    DMike Member Posts: 259
    faithlou said:

    Moving forward

    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

    Off to see the wizard

    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
    garym Member Posts: 1,647
    DMike said:

    Off to see the wizard

    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

     

     

    Don't let it get you down...

    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!!!

  • faithlou
    faithlou Member Posts: 41
    alice124 said:

    Votrient

    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?

    Starting dose

    Alice,

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

    Lou

     

  • DMike
    DMike Member Posts: 259
    garym said:

    Don't let it get you down...

    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!!!

    Fighting

    Thanks Gary. We've gotta keep fighting!

    David

  • alice124
    alice124 Member Posts: 896 Member
    DMike said:

    Off to see the wizard

    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

     

     

    Votrient spiked with IL2

    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 ****!!!! We're kicking with you!

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

    Starting dose

    Alice,

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

    Lou

     

    Sounds good to me... 400 mg

    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
    DMike Member Posts: 259
    alice124 said:

    Votrient spiked with IL2

    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 ****!!!! We're kicking with you!

    Thanks

    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
    BDS Member Posts: 172
    Votrient - Update

     

    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
    DMike Member Posts: 259
    BDS said:

    Votrient - Update

     

    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      

     

    Long Run

    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
    GSRon Member Posts: 1,303
    DMike said:

    Long Run

    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

    Hi BDS.. Great news. FYI for

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