Axitinib / Inlyta

145791013

Comments

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

    Well...

    Hi David... I guess the good news on my blood issues did not spill over in to my Kidney issues..  My Creatinine went up to 2.0 which is not terrible as we both know..  But my eGFR dropped to 36.  And my Urea Nitrogen went up to 33.  I wonder how close I am to being dangerous..??

    Ron

    Video

    This is too good not to share... my Irish pal Cargo had a hand in this...love that guy..  https://www.facebook.com/lookback/

    Ron

  • NanoSecond
    NanoSecond Member Posts: 653

    Radiation and Inlyta

    Neil,

     

    Are you doing your radiation therapy at the same time that you're taking your daily Inlyta dose?

     

    Mom was just on everolimus but has stopped because of a new bone met. Our oncologist has referred us to see a radiation oncologist (who we are seeing on Thursday) and said to make an appointment when we're done with radiation. The next drug they want to try is Inlyta but there was no mention of anything to help with the new bone met. It seemed unsettling to me for mom to put her on hold from starting Inlyta for so long...it's been exactly a week now that mom her stopped taking everolimus so I believe the "wash out" period should be over. I was thinking this was maybe because she couldn't be on Inlyta and radiation at the same time but it seems as though you are on both. I hope the pain has been feeling better!

     

    Virginia

    Inlyta and Radiation

    Hi Virginia.  Yes, I am still taking Inlyta - 7mg twice a day.  I am also in the middle of undergoing radiation treatments to bone lesions on my left femur.  As far as I can ascertain there should be no restrictions on your Mom trying Inlyta while also undergoing radiation treatments.  Of course there may some other medical issues with your mom that may be dictating otherwise.

    There are a few additional things that I am doing to (hopefully) help the radiation treatments work more effeciently.  One is that I am taking the minimum dosage of Metformin.  There are several studies that show that Metformin can help whenever undergoining radiation treatement.  Another is that I follow a low carb/high fat diet.  Finally I make sure not to take any anti-oxidants while undergoing radiation.  This last item is a bit controversial - not everyone  concurs - but I feel there is enough evidence not tempt fate.

    Today I will go in for my 5th treatment (of 12 total).  Unfortunately, the pain is still present.  However I was told not to expect any relief until I had undergone at least 5 or 6 of these treatments.

  • DMike
    DMike Member Posts: 259
    GSRon said:

    Well...

    Hi David... I guess the good news on my blood issues did not spill over in to my Kidney issues..  My Creatinine went up to 2.0 which is not terrible as we both know..  But my eGFR dropped to 36.  And my Urea Nitrogen went up to 33.  I wonder how close I am to being dangerous..??

    Ron

    Kidney Issues

    Ron,

    Sorry about your kidney issues. I know enough about these readings to be dangerous, so I'll just say I hope things improve soon. Thinking about you, Neil and others as we work through our Inlyta journey.

    David

  • Eskimo lily
    Eskimo lily Member Posts: 43

    Inlyta and Radiation

    Hi Virginia.  Yes, I am still taking Inlyta - 7mg twice a day.  I am also in the middle of undergoing radiation treatments to bone lesions on my left femur.  As far as I can ascertain there should be no restrictions on your Mom trying Inlyta while also undergoing radiation treatments.  Of course there may some other medical issues with your mom that may be dictating otherwise.

    There are a few additional things that I am doing to (hopefully) help the radiation treatments work more effeciently.  One is that I am taking the minimum dosage of Metformin.  There are several studies that show that Metformin can help whenever undergoining radiation treatement.  Another is that I follow a low carb/high fat diet.  Finally I make sure not to take any anti-oxidants while undergoing radiation.  This last item is a bit controversial - not everyone  concurs - but I feel there is enough evidence not tempt fate.

    Today I will go in for my 5th treatment (of 12 total).  Unfortunately, the pain is still present.  However I was told not to expect any relief until I had undergone at least 5 or 6 of these treatments.

    Inlyta and Radiation

    Hi Neil,

     

    What type of radiation are you on right now?

    After our appointment with the radiation oncologist tomorrow, I'm going to call our oncologist's office to make an appointment to see if we can start mom on her Inlyta at the same time. From what I've been reading, I don't see a reason why she wouldn't be able to do both. Our oncologist will be away for a few weeks and our next appointment with him isn't until March 11th, which I think is ridiculous! 

    My mom is actually on Metformin XL 500mg twice a day. She started taking this because her blood sugars were high whilst on Everolimus. Since she has stopped taking everolimus, her blood sugars have come down significantly and they want her to remain on the same dose. I've read a lot about your posts on Metformin here on CSN and on SP and I'm very happy that mom is taking Metformin!

    I hope all goes well today and that you start to feel some relief after this 5th treatment.

  • NanoSecond
    NanoSecond Member Posts: 653

    Inlyta and Radiation

    Hi Neil,

     

    What type of radiation are you on right now?

    After our appointment with the radiation oncologist tomorrow, I'm going to call our oncologist's office to make an appointment to see if we can start mom on her Inlyta at the same time. From what I've been reading, I don't see a reason why she wouldn't be able to do both. Our oncologist will be away for a few weeks and our next appointment with him isn't until March 11th, which I think is ridiculous! 

    My mom is actually on Metformin XL 500mg twice a day. She started taking this because her blood sugars were high whilst on Everolimus. Since she has stopped taking everolimus, her blood sugars have come down significantly and they want her to remain on the same dose. I've read a lot about your posts on Metformin here on CSN and on SP and I'm very happy that mom is taking Metformin!

    I hope all goes well today and that you start to feel some relief after this 5th treatment.

    Inlyta and Radiation

    I am getting some sort of IMRT.  Each dose is about 3.6 Gy and I will have 11 of them in total.  This dosage is higher than "traditional" 2 Gy radiation treatment but less than SBRT's 5 Gy (and will take twice as many days).

    I just got back from my 5th treatment and I am happy to report that the pain does seem to be very slowly dissappating.  I do hope it keeps up...

    While I was there I met with my radiation oncologist and asked whether there was any necessity to suspend taking Inlyta during these kinds of treatments.  She told me she could not come up with any reason.

    I think that your Mom already being on Metformin is terrific.  After all the recent research that I have read I really don't know what to make of those therapies that may work to raise blood glucose as a side effect.  This is one big reason that I try to avoid all steroids if it is possible - as well as any statins.  Regardless, it sounds like your Mom's oncologist was very forward thinking by putting her on Metformin to help her deal with this issue while she was taking Everolimus.

  • angec
    angec Member Posts: 924 Member

    Inlyta and Radiation

    I am getting some sort of IMRT.  Each dose is about 3.6 Gy and I will have 11 of them in total.  This dosage is higher than "traditional" 2 Gy radiation treatment but less than SBRT's 5 Gy (and will take twice as many days).

    I just got back from my 5th treatment and I am happy to report that the pain does seem to be very slowly dissappating.  I do hope it keeps up...

    While I was there I met with my radiation oncologist and asked whether there was any necessity to suspend taking Inlyta during these kinds of treatments.  She told me she could not come up with any reason.

    I think that your Mom already being on Metformin is terrific.  After all the recent research that I have read I really don't know what to make of those therapies that may work to raise blood glucose as a side effect.  This is one big reason that I try to avoid all steroids if it is possible - as well as any statins.  Regardless, it sounds like your Mom's oncologist was very forward thinking by putting her on Metformin to help her deal with this issue while she was taking Everolimus.

    Hi Ron, sorry to hear about

    Hi Ron, sorry to hear about all you have been through!  Looks like the higher dose is going to do the trick for you. Hopefully your strict food intake and close watch will help keep the side affects at bay. I was wondering if they would decide to treat with both meds, Sutent and Inlyta, as I have heard others were on both, with one week on one and one week on the other. Have you heard about that?

    Why is it that you avoid steroids? They want to put mom on it, it seems the Votrient caused pulmonary Fibrosis.  She is doing ok now but in April they want to start her on that.  I have her using some homeopathics for that and it is doing well for her.  I rather her not go the steroid route if she doesn't need it!

    Hope all goes well for you and the pain is totally gone once the treatments are done!  :)

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

    Kidney Issues

    Ron,

    Sorry about your kidney issues. I know enough about these readings to be dangerous, so I'll just say I hope things improve soon. Thinking about you, Neil and others as we work through our Inlyta journey.

    David

    The right stuff..

    Hi All..!!  OK, sometimes you just have to do the right things.  A year ago, I made two important changes, so to speak.  I got myself to a Pulmonary Dr who sent me to a Cardio Doc.   First off the Pulmonary guy has been a biker.. but he got me in to a sleep study which proved I had bad Sleep Apnea.  This got me a CPAP machine.  Now some folks have trouble adapting to wearing a mask at night.  Not me.. I made up my mind that I needed it to live.

    My Cardio Doc did an Echo Gram and told me my heart was enlarged.. but that she felt the CPAP may help all that.

    Of course both Doctors were correct.  The CPAP gave me great restful nights.  I no longer get up in the middle of the night to pee.  And now that I am on Inlyta, well.. no way could I function very well without the CPAP.  This year's Echo Gram showed my heart was on it's way towards a normal size, and that the heart muscle was much stronger.  Yesterday I had my one year follow up with the Pulmonary Doc and he too was pleased at my progress.  FYI, in case you do not know, the CPAP machine has a memory chip inside.. he KNEW how much I used my machine.

    So pals, do the rights stuff, and sometimes you get some shining stars in the midst of this Cancer crap.  It all can add more GOOD time to our life clock.

    Be Well All..!!

    Ron

  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    Goodbye Inlyta

    I continued Inlyta at 3 mg/2xDay and it did absolutely nothing for me. The cancer basically exploded.  That's the best way I can describe it. New mets in abdominal wall, new mets in subclavical lymph nodes, increased several tumor sizes in lung. Next up-- sutent + gemcitibine trial.

  • GSRon
    GSRon Member Posts: 1,303 Member

    Goodbye Inlyta

    I continued Inlyta at 3 mg/2xDay and it did absolutely nothing for me. The cancer basically exploded.  That's the best way I can describe it. New mets in abdominal wall, new mets in subclavical lymph nodes, increased several tumor sizes in lung. Next up-- sutent + gemcitibine trial.

    Geesh Phoenix.. sorry to hear

    Geesh Phoenix.. sorry to hear that... but hopefully the Sutent + trial does the trick.. and hope if also eliminates the nagging cough...  Keep us posted, and good luck...

    Ron

  • DMike
    DMike Member Posts: 259

    Goodbye Inlyta

    I continued Inlyta at 3 mg/2xDay and it did absolutely nothing for me. The cancer basically exploded.  That's the best way I can describe it. New mets in abdominal wall, new mets in subclavical lymph nodes, increased several tumor sizes in lung. Next up-- sutent + gemcitibine trial.

    Inlyta

    Hey Phoenix,

    I'm sorry about the Inlyta news. I hope the Sutent trial is a winner. Thinking about you, I know how that kind of news hurts.

    Take care, David

  • sewmommy
    sewmommy Member Posts: 14
    hey ron... i just signed the

    hey ron... i just signed the concent papers yesterday to start the three year axitinib trial... woohoo.

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

    hey ron... i just signed the

    hey ron... i just signed the concent papers yesterday to start the three year axitinib trial... woohoo.

    Hi Sew... hope it works great

    Hi Sew... hope it works great for you..!!  Keep us posted please...

    Ron

  • sewmommy
    sewmommy Member Posts: 14
    GSRon said:

    Hi Sew... hope it works great

    Hi Sew... hope it works great for you..!!  Keep us posted please...

    Ron

    will do! im almost hoping my

    will do! im almost hoping my bp goes up, just to tell me im getting the drug and not placebo... are you in a blind trial?

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

    will do! im almost hoping my

    will do! im almost hoping my bp goes up, just to tell me im getting the drug and not placebo... are you in a blind trial?

    Hi Sew, I don't know what

    Hi Sew, I don't know what trial you are on. Inlyta is an approved drug

  • sewmommy
    sewmommy Member Posts: 14
    GSRon said:

    Hi Sew, I don't know what

    Hi Sew, I don't know what trial you are on. Inlyta is an approved drug

    sorry Ron.. i forgot that we

    sorry Ron.. i forgot that we were in different stages! im going to be in a 3yr blind adjuvant trial with it.. seeing if it will prevent mets if started within 12wks of 'curative' surgery

  • CommuterMom
    CommuterMom Member Posts: 120
    sewmommy said:

    will do! im almost hoping my

    will do! im almost hoping my bp goes up, just to tell me im getting the drug and not placebo... are you in a blind trial?

    Best of luck, I hope you kick

    Best of luck, I hope you kick some ****.

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

    sorry Ron.. i forgot that we

    sorry Ron.. i forgot that we were in different stages! im going to be in a 3yr blind adjuvant trial with it.. seeing if it will prevent mets if started within 12wks of 'curative' surgery

    Hi Sewmommy...  ouch..  so

    Hi Sewmommy...  ouch..  so far, from what I hear, all the adjuvent therapies have failed..  I wonder why they keep doing these..?  Some of us feel that is a waste of a good drug... Maybe it will work for you, but then how would anyone know..?

    Ron

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

    Hi Sewmommy...  ouch..  so

    Hi Sewmommy...  ouch..  so far, from what I hear, all the adjuvent therapies have failed..  I wonder why they keep doing these..?  Some of us feel that is a waste of a good drug... Maybe it will work for you, but then how would anyone know..?

    Ron

    adjuvant therapies

    I think they are buying time with these drugs until the good stuff becomes available.

  • GSRon
    GSRon Member Posts: 1,303 Member

    Best of luck, I hope you kick

    Best of luck, I hope you kick some ****.

    Scans

    Hi All..!

    Well, while (somewhat) cleaning up yesterday, I found the CD of my last July scans.  I do not recommend you all look at your scans.. I can tell you it was a bit depressing.. Now it took me a while to remember how to navigate, it is a bit difficult.  There were two main scans, one had over 800 images and one 600.  Once I got the exact right image pulled up, I went "Oh Shi..!"  The cyst on my remaining Kidney is darn big..!  And there were a lot of spots in both lungs.  Now here is the hard part, deciphering Mets from other stuff.. And I may of got it all wrong, me with no training.  And as I get no contrast with my scans, I can see why they want the contrast if possible.  But my point is that everything shows up.  Yes I could be way wrong, but I think the issue is picking out Mets from normal stuff...  If so, then no worry at all.. just need to compare from scan to scan.  If those spots are growing, well.. no need for any further Dx.  Oh yes, and there is this nice "ruler" tool so the actual size can be measured.  However, each one of the 800 scans has a slightly different angle, which is why the measurement is not a 100% exact science.  I think this is also why when small size changes are noted, they get put in the "maybe" category as the numbers may not be accurate.  I need to get a copy of my January scans so I can compare.   But this also stresses the importance of using the same place each time to get our scans done, for consistency.

    Be Well All...

    Ron - headed to my one motorcycle pal's funeral.. booo....

  • DMike
    DMike Member Posts: 259
    1st Inlyta Scan

    This is the first scan since I started Inlyta but it includes a 26 day span without any meds while I moved off of Votrient and waited for insurance approval for Inlyta. So, that makes 3 months since the last scan and roughly 2 months on Inlyta.

    1. Bilirubin is 1.5, that's GREAT for me! ALT and AST are also great! My liver and Gilbert's Syndrome seem to like Inlyta.
    2. Abdomen and pelvis scan still remains clear of mets.
    3. Lung mets are mixed. They follow 3 mets as markers, there are many more smaller ones but here are the 3 markers:
        A. 9mm x 6mm - is now 9 x 8mm
        B. 1.4 cm x 1.2 cm - is now 1.2 cm x 1.0 cm - this one was ACTIVELY growing in the fall
        C. 1.1 cm x 8mm - is now 1.2 X 1.2 cm
    Those are in the 20% margin of error status, so he considers it stability especially with a month without meds.

    Echocardiogram was good!

    We are raising the meds from 7mg 2x per day to 10 mg 2x per day (max dose for Inlyta). We'll see what side effects that brings. I'm not having any side effects except fatigue now, so we will see. I'm super happy that my liver is tolerating Inlyta.

    I feel better than I have felt since IL2, we'll see how things go with the dosage increase...Celebratory long bike ride today!

    David