Axitinib / Inlyta

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Comments

  • NanoSecond
    NanoSecond Member Posts: 653
    a_oaklee said:

    #100 post

    Yes, I really just wanted to be the #100 post under Rons Inlyta thread.  haha

    You've given me more to think about.  Need to look up Dawn Phenomena.  I have always thought blood sugar is highest after meals and decreases with time afterwards.  So the lowest reading should be in the morning before breakfast.  Do I have that right? 

    I read that you have to stop Metformin before and after scans for a certain length of time.  Were you aware of that?

    I'm happy that you have had one week of no side effects.  My husband didn't complain about side effects until he was on 7 mg twice a day for a couple weeks.  That's when he started to feel very tired and very nauseated.  I wonder if the other members who are on Inlyta had their doses increased.  They wanted us to go from 5, to 7, then to 10. 

    You have mentioned before how great you feel and have little to no side effects from the Sutent.  I will be interested to know how you are tolerating Inlyta as the dosage increases.  I'm wondering if your careful dietary plan helps with taking this medication too.  I sure hope so. 

     

    Inlyta going forward

    Yes, your blood sugar immediately spikes after meals and then (should) decrease as insulin is released. 

    Ordinarily the liver is constantly removing some insulin from the bloodstream, but during the pre-dawn hours, in response to the release of certain hormones, it clears insulin out of the blood at an accelerated rate.  As such the blood sugar may rise. This is the Dawn Phenomena.

    Yes, I am aware that I need to stop taking Metformin around scan time.  Thanks for mentioning it though.

    I am slated to titrate up to 7mg twice a day in 3 weeks.  I have no idea if I will be as lucky on Inlyta as I was on Sutent (having no significant side effects).  If I am I would be inclined to attribute it to my diet and taking certain supplements like CoEnzyme Q10 - just as when I was on Sutent.  Time will tell...

    I was very surprised to discover that taking Vitamin C supplements in excess of 250mg/day can raise blood sugar.  And that taking in excess of 400mg/day can turn it into an oxidant (rather than an anti-oxidant).  I have just modified my guide to reflect this new knowlege which I learned from a key diabetes expert, Dr. Richard K. Bernstein.

  • GSRon
    GSRon Member Posts: 1,303 Member

    Inlyta going forward

    Yes, your blood sugar immediately spikes after meals and then (should) decrease as insulin is released. 

    Ordinarily the liver is constantly removing some insulin from the bloodstream, but during the pre-dawn hours, in response to the release of certain hormones, it clears insulin out of the blood at an accelerated rate.  As such the blood sugar may rise. This is the Dawn Phenomena.

    Yes, I am aware that I need to stop taking Metformin around scan time.  Thanks for mentioning it though.

    I am slated to titrate up to 7mg twice a day in 3 weeks.  I have no idea if I will be as lucky on Inlyta as I was on Sutent (having no significant side effects).  If I am I would be inclined to attribute it to my diet and taking certain supplements like CoEnzyme Q10 - just as when I was on Sutent.  Time will tell...

    I was very surprised to discover that taking Vitamin C supplements in excess of 250mg/day can raise blood sugar.  And that taking in excess of 400mg/day can turn it into an oxidant (rather than an anti-oxidant).  I have just modified my guide to reflect this new knowlege which I learned from a key diabetes expert, Dr. Richard K. Bernstein.

    Hi Neil..!!  For me some side

    Hi Neil..!!  For me some side effects started quick.. elevated blood pressure.. some took a while to kick in.  And most recently some escalate at times then diminish..  But the worst / most consistent is the fatigue..  I sleep a bit more than normal.. and maybe doing that is not as good as "forcing" myself to get going...  I do have skin issues, but have no way of telling if that is the Inlyta or the P.V. or the combination.  At times I peel like having bad sun burn and peeling in small patches.  This leaves some very tender parts of my body...  Hope you avoid all of that.

     

    I remember reading somewhere that too much of several vitamins can be bad just like too little..  But then you already knew that...

     

    I DO expect the Inlyta to work great for you...  I have no doubt..!

    Ron

  • NanoSecond
    NanoSecond Member Posts: 653
    GSRon said:

    Hi Neil..!!  For me some side

    Hi Neil..!!  For me some side effects started quick.. elevated blood pressure.. some took a while to kick in.  And most recently some escalate at times then diminish..  But the worst / most consistent is the fatigue..  I sleep a bit more than normal.. and maybe doing that is not as good as "forcing" myself to get going...  I do have skin issues, but have no way of telling if that is the Inlyta or the P.V. or the combination.  At times I peel like having bad sun burn and peeling in small patches.  This leaves some very tender parts of my body...  Hope you avoid all of that.

     

    I remember reading somewhere that too much of several vitamins can be bad just like too little..  But then you already knew that...

     

    I DO expect the Inlyta to work great for you...  I have no doubt..!

    Ron

    Fatigue

    Hi Ron,

    Many thanks for relating your experience with side effects and those kind words of support.  The latter greatly appreciated as I have had an "interesting" weekend.  I started to develop some pain in my left femur (a site of one of my bone mets) on Thursday.  I was getting bummed out because it seemed that meant that Inlyta was not working for me.  However, yesterday the pain started to subside and today it is almost gone. So I guess (in my case at least) it takes at least one week before Inlyta starts to kick in.

    You did not mention what dosage you are at.  Are you still at 5mg? Or higher? How soon after you started before you started experiencing that fatigue?  As you know I never experienced any fatigue on Sutent even though I was at maximum dosage (50mg/day).  I am pretty convinced that was a direct result of my diet and certain key supplements. 

    Incidentally, I may take multiple supplements but I don't take many vitamins at all - only vitamins D3, K2, and (now at a reduced dosage) C.  That's it. I also never recommend that anyone take multiple vitamin tablets. On the other hand I have done extensive research to make extra sure that any supplements I do ingest will not interfere with the targeted drugs I take.

    Thanks again.

  • GSRon
    GSRon Member Posts: 1,303 Member

    Fatigue

    Hi Ron,

    Many thanks for relating your experience with side effects and those kind words of support.  The latter greatly appreciated as I have had an "interesting" weekend.  I started to develop some pain in my left femur (a site of one of my bone mets) on Thursday.  I was getting bummed out because it seemed that meant that Inlyta was not working for me.  However, yesterday the pain started to subside and today it is almost gone. So I guess (in my case at least) it takes at least one week before Inlyta starts to kick in.

    You did not mention what dosage you are at.  Are you still at 5mg? Or higher? How soon after you started before you started experiencing that fatigue?  As you know I never experienced any fatigue on Sutent even though I was at maximum dosage (50mg/day).  I am pretty convinced that was a direct result of my diet and certain key supplements. 

    Incidentally, I may take multiple supplements but I don't take many vitamins at all - only vitamins D3, K2, and (now at a reduced dosage) C.  That's it. I also never recommend that anyone take multiple vitamin tablets. On the other hand I have done extensive research to make extra sure that any supplements I do ingest will not interfere with the targeted drugs I take.

    Thanks again.

    Hi Neil..!  OK I take 5 mg

    Hi Neil..!  OK I take 5 mg twice a day.   And if you remember, I have pain in my left butt cheek...  it never got any worse, in fact some days I barely notice it.. Maybe some form of S.E..??  S.E.'s showed up a few day after I started with elevated B.P., then fatigue about a week in, then the diarrhea / constipation cycles.  The F&S may partically..?? be due to the P.V. so my experiences are likely all not relevant to anyone else.. dunno...

    But it is very likely that my ackes and pains are all due to my past body abuse... and now that I am not as active my lack of muscle tone is making things a bit worse.   However since my recent scans were good, I am not concerned for now.  The positive results are well worth it all..!!

    Ron

  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    Coughing, anyone?

    Is anyone else experiencing a cough as a side effect of the Inlyta?  I am only taking 6mg/day right now, but the cough is bad enough that I can't speak at length without coughing, sometimes within the first word of a sentence, and laughing is out of the question... when laughing it goes from a cough to a spasmodic feeling in the chest and I have to stop and take deep breaths to get back to normal.  When I told the PA about the cough, she just said, oh okay.  I have tried Delsym, and Tussin cough supressants. Tussin works only minimally.  I tried a natural product called Singers Saving Grace.  It stops it in its tracks and allows me to speak, but you can only do 20 sprays/day.  It's also embarassing to spray everytime I need to speak at length.

  • GSRon
    GSRon Member Posts: 1,303 Member

    Coughing, anyone?

    Is anyone else experiencing a cough as a side effect of the Inlyta?  I am only taking 6mg/day right now, but the cough is bad enough that I can't speak at length without coughing, sometimes within the first word of a sentence, and laughing is out of the question... when laughing it goes from a cough to a spasmodic feeling in the chest and I have to stop and take deep breaths to get back to normal.  When I told the PA about the cough, she just said, oh okay.  I have tried Delsym, and Tussin cough supressants. Tussin works only minimally.  I tried a natural product called Singers Saving Grace.  It stops it in its tracks and allows me to speak, but you can only do 20 sprays/day.  It's also embarassing to spray everytime I need to speak at length.

    I am a bit of an Ars**

    Hi All..!  Yes I can be a pain to some at times... but since my Dx, I try to be helpful not only to myself but others...  Here is a link to an article I just found.

    http://energyfm.net/cms/news_story_297372.html

    I e-mailed a detailed response to the radio station.. not sure what if anything will happen with it.. but, I tried..   My point is to voice your opinions on Cancer when you can.. make those in elected office aware.. they are not all knowledgeable on Cancer.. 

     

    And here is what I wrote:

    This is a very hot topic in many places around the world. How do you put a price on a human life..? That is the key question. Yes the drugs are very expensive, but, when it is YOU or your loved one.. well, there is no price. I recently lost a pal from Scotland as he had gone through the few allowed drugs there. Sad as only a few months after his death, another drug is now avialable. How do you explain that to his family..? I am very lucky, here is the U.S. we have a lot of options, more than in the IOM or the U.K. I am on my second drug, the first one was working great on the Cancer but was killing my Liver. The current drug is working on the Cancer and not hurting my Liver.. so for now I am very lucky. Please feel free to ask me any questions. I plan to be on the IOM next August, as usual..!
    Ron

     

     

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    GSRon said:

    I am a bit of an Ars**

    Hi All..!  Yes I can be a pain to some at times... but since my Dx, I try to be helpful not only to myself but others...  Here is a link to an article I just found.

    http://energyfm.net/cms/news_story_297372.html

    I e-mailed a detailed response to the radio station.. not sure what if anything will happen with it.. but, I tried..   My point is to voice your opinions on Cancer when you can.. make those in elected office aware.. they are not all knowledgeable on Cancer.. 

     

    And here is what I wrote:

    This is a very hot topic in many places around the world. How do you put a price on a human life..? That is the key question. Yes the drugs are very expensive, but, when it is YOU or your loved one.. well, there is no price. I recently lost a pal from Scotland as he had gone through the few allowed drugs there. Sad as only a few months after his death, another drug is now avialable. How do you explain that to his family..? I am very lucky, here is the U.S. we have a lot of options, more than in the IOM or the U.K. I am on my second drug, the first one was working great on the Cancer but was killing my Liver. The current drug is working on the Cancer and not hurting my Liver.. so for now I am very lucky. Please feel free to ask me any questions. I plan to be on the IOM next August, as usual..!
    Ron

     

     

    how is everybody on Inlyta?

    Just saying hello to fellow Inlyta users.  My husband has an MRI of his back on Wednesday to check for mets.  His last PET/CT scan in December was no evidence of metabolic disease.  Yeah!  We think Inlyta is working really well for him.  He is very tired, sometimes nauseated, no appetite, and sometimes has diarrhea.  He is not losing weight and other medications are taken to help with those symptoms.  How is everyone else doing? 

    Nano:  How are you doing?  Did you get to 7 mg? 

    Phoenix:  I went to the Pfizer website and one of the side effects listed is a cough.  So perhaps your cough is from this medicine.  How are you feeling now?

    Finally, I want to mention that my husband is on medicare and has a supplemental prescription plan.  We still pay $1000 a month for this drug.  We are definitely grateful, without a doubt that this drug is working for us, but the price is really high.  Does anyone care to comment or provide some helpful information regarding paying for this medicine?  (No political commentary please).

    Thank you.  Hope you are all doing well!

    Annie

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

    how is everybody on Inlyta?

    Just saying hello to fellow Inlyta users.  My husband has an MRI of his back on Wednesday to check for mets.  His last PET/CT scan in December was no evidence of metabolic disease.  Yeah!  We think Inlyta is working really well for him.  He is very tired, sometimes nauseated, no appetite, and sometimes has diarrhea.  He is not losing weight and other medications are taken to help with those symptoms.  How is everyone else doing? 

    Nano:  How are you doing?  Did you get to 7 mg? 

    Phoenix:  I went to the Pfizer website and one of the side effects listed is a cough.  So perhaps your cough is from this medicine.  How are you feeling now?

    Finally, I want to mention that my husband is on medicare and has a supplemental prescription plan.  We still pay $1000 a month for this drug.  We are definitely grateful, without a doubt that this drug is working for us, but the price is really high.  Does anyone care to comment or provide some helpful information regarding paying for this medicine?  (No political commentary please).

    Thank you.  Hope you are all doing well!

    Annie

    Doing good overall here..!  I

    Doing good overall here..!  I am now sort of retired...  Two Dr appoitnments tomorrow... (no Onc Dr).   Saddens me they will likely take a pint out of me and throw it away...  have a bite of lunch and then kick back the rest of the day..

     

    Oh yes. just watched a great video.. but where is my favorite translator when I need her..??? Surprised

    http://www.youtube.com/watch?v=AKNVj9U6ymY

     

    Ron

  • NanoSecond
    NanoSecond Member Posts: 653
    a_oaklee said:

    how is everybody on Inlyta?

    Just saying hello to fellow Inlyta users.  My husband has an MRI of his back on Wednesday to check for mets.  His last PET/CT scan in December was no evidence of metabolic disease.  Yeah!  We think Inlyta is working really well for him.  He is very tired, sometimes nauseated, no appetite, and sometimes has diarrhea.  He is not losing weight and other medications are taken to help with those symptoms.  How is everyone else doing? 

    Nano:  How are you doing?  Did you get to 7 mg? 

    Phoenix:  I went to the Pfizer website and one of the side effects listed is a cough.  So perhaps your cough is from this medicine.  How are you feeling now?

    Finally, I want to mention that my husband is on medicare and has a supplemental prescription plan.  We still pay $1000 a month for this drug.  We are definitely grateful, without a doubt that this drug is working for us, but the price is really high.  Does anyone care to comment or provide some helpful information regarding paying for this medicine?  (No political commentary please).

    Thank you.  Hope you are all doing well!

    Annie

    Inlyta

    Hi Annie.  Thanks for asking.

    Yes, I finally received the 7mg dosage upgrade.  But I only started on it this past Saturday. 

    Of course there is no way of knowing if it is working to control those newly discovered small liver lesions (which is why I stopped taking Sutent) until we do a CT scan with contrast.  That is still about one month away.

    I can report one annoying side effect. My voice is slightly hoarse.

    In addition I have just started radiation treatments on the bone lesions in my left femur.  As such I am fighting a lot of pain in my left thigh due to the inflammation caused by these treatments.  "They" tell me not expect any relief before at least 5 sessions.  Later today I will go in for session number 4...

     

  • GSRon
    GSRon Member Posts: 1,303 Member

    Inlyta

    Hi Annie.  Thanks for asking.

    Yes, I finally received the 7mg dosage upgrade.  But I only started on it this past Saturday. 

    Of course there is no way of knowing if it is working to control those newly discovered small liver lesions (which is why I stopped taking Sutent) until we do a CT scan with contrast.  That is still about one month away.

    I can report one annoying side effect. My voice is slightly hoarse.

    In addition I have just started radiation treatments on the bone lesions in my left femur.  As such I am fighting a lot of pain in my left thigh due to the inflammation caused by these treatments.  "They" tell me not expect any relief before at least 5 sessions.  Later today I will go in for session number 4...

     

    Hi Neil... hope that bone

    Hi Neil... hope that bone pain goes away fast..!   Yes the voice issue.. got that... people think I have a cold or flu...  But as we both know.. if it works, then no big deal..!  And I DO expect it ot work for you..!!

    I get to visit the Vampire ladies today..!  

    Later all...

    Ron

  • foxhd
    foxhd Member Posts: 3,181 Member

    Inlyta

    Hi Annie.  Thanks for asking.

    Yes, I finally received the 7mg dosage upgrade.  But I only started on it this past Saturday. 

    Of course there is no way of knowing if it is working to control those newly discovered small liver lesions (which is why I stopped taking Sutent) until we do a CT scan with contrast.  That is still about one month away.

    I can report one annoying side effect. My voice is slightly hoarse.

    In addition I have just started radiation treatments on the bone lesions in my left femur.  As such I am fighting a lot of pain in my left thigh due to the inflammation caused by these treatments.  "They" tell me not expect any relief before at least 5 sessions.  Later today I will go in for session number 4...

     

    bone pain

    Nano, sorry about the bone pain. I have been familiar with it. Pelvis, spine and ribs. Funny thing is that radiation was done to areas of my spine and ribs that weren't hurting. The ribs hurt the most when they were fracturing from the tumors. (not radiated) And the spine was done were the tumors were encroaching on the spinal cord. That could have been bad. My ilium hurt so much that I could only get around the house if I was taking percocets. I was thinking that I was approaching the end. The nivolumab took care of most of these. Now there are only a couple or few in my spine. But they are small. (so far). My doctor thinks that my remaining tumors are still going to shrink from the combo of nivolumab and IL-2. So no radiation is planned at this time. I am glad that the radiation is effective. The radiation oncologist told me that the radiation fatigue was going to hit me big time. It did some. But not a big deal. Mostly what I want to say is that it sure is nice not having the pain anymore. So good luck. And keep the faith.

  • NanoSecond
    NanoSecond Member Posts: 653
    foxhd said:

    bone pain

    Nano, sorry about the bone pain. I have been familiar with it. Pelvis, spine and ribs. Funny thing is that radiation was done to areas of my spine and ribs that weren't hurting. The ribs hurt the most when they were fracturing from the tumors. (not radiated) And the spine was done were the tumors were encroaching on the spinal cord. That could have been bad. My ilium hurt so much that I could only get around the house if I was taking percocets. I was thinking that I was approaching the end. The nivolumab took care of most of these. Now there are only a couple or few in my spine. But they are small. (so far). My doctor thinks that my remaining tumors are still going to shrink from the combo of nivolumab and IL-2. So no radiation is planned at this time. I am glad that the radiation is effective. The radiation oncologist told me that the radiation fatigue was going to hit me big time. It did some. But not a big deal. Mostly what I want to say is that it sure is nice not having the pain anymore. So good luck. And keep the faith.

    Bone mets

    Thanks so much Fox.  As you and anyone else who has ever experienced it knows, bone mets are notoriously painful. And for me at times the pain comes in sync with my heartbeart - which is the absolute worst.

    My femur pain has been very frustrating for other reasons as well.  That is because while I was on Sutent (plus Xgeva) I not only had it totally under control but was actually growing new, healthy bone back in the afflicted areas.  I was only forced to stop Sutent because I developed lesions in my liver - but not because Sutent stopped working on any of my bone mets.  In fact it was still going strong on them.

    The current problem only surfaced once I stopped taking Sutent and then had to wait one week before I could start on Inlyta.  Because about one week after starting on Inlyta that femur pain/flare up started.  And it soon became quite apparent that (for me) Inlyta at 5mg twice a day was just not going to be sufficient to control that bone met.

    So my onc agree to quickly increase my dosage up to 7mg twice a day.  However, due a last minute and damn infuriating insurance requirement for "prior approval" I did not actually receive that higher dosage until a little over a week ago.  Once I finally started on the higher dosage all the pain started to subside.

    What I also did not anticipate was that undergoing radiation treatments might inflame the lesions before finally killing them off once and for all.

  • GSRon
    GSRon Member Posts: 1,303 Member

    Bone mets

    Thanks so much Fox.  As you and anyone else who has ever experienced it knows, bone mets are notoriously painful. And for me at times the pain comes in sync with my heartbeart - which is the absolute worst.

    My femur pain has been very frustrating for other reasons as well.  That is because while I was on Sutent (plus Xgeva) I not only had it totally under control but was actually growing new, healthy bone back in the afflicted areas.  I was only forced to stop Sutent because I developed lesions in my liver - but not because Sutent stopped working on any of my bone mets.  In fact it was still going strong on them.

    The current problem only surfaced once I stopped taking Sutent and then had to wait one week before I could start on Inlyta.  Because about one week after starting on Inlyta that femur pain/flare up started.  And it soon became quite apparent that (for me) Inlyta at 5mg twice a day was just not going to be sufficient to control that bone met.

    So my onc agree to quickly increase my dosage up to 7mg twice a day.  However, due a last minute and damn infuriating insurance requirement for "prior approval" I did not actually receive that higher dosage until a little over a week ago.  Once I finally started on the higher dosage all the pain started to subside.

    What I also did not anticipate was that undergoing radiation treatments might inflame the lesions before finally killing them off once and for all.

    Good news

    Just had a blood test. And the results are great. I may not need to have a phlebotomy today. Life is good. The doctor thinks the Inlyta may be controlling my red blood cells. Be well all. Ron

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

    Good news

    Just had a blood test. And the results are great. I may not need to have a phlebotomy today. Life is good. The doctor thinks the Inlyta may be controlling my red blood cells. Be well all. Ron

    Glad

    you won't be getting a lobotomy. This cuckoo's nest would miss your personality. Keep doing well. Karma dude.

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

    Good news

    Just had a blood test. And the results are great. I may not need to have a phlebotomy today. Life is good. The doctor thinks the Inlyta may be controlling my red blood cells. Be well all. Ron

    The plan

    Just talked to the main doctor. I come back tomorrow and get a phlebotomy. But we will try and go to a two month schedule. My hermatocrit is still higher than we want. Still it is good news.

  • NanoSecond
    NanoSecond Member Posts: 653
    GSRon said:

    The plan

    Just talked to the main doctor. I come back tomorrow and get a phlebotomy. But we will try and go to a two month schedule. My hermatocrit is still higher than we want. Still it is good news.

    Your plan

    This is terrific news Ron.

    It sounds like Inlyta may be offering some unexpected side benefits to you.

    Keep up the great work.  :)

  • garym
    garym Member Posts: 1,647
    GSRon said:

    The plan

    Just talked to the main doctor. I come back tomorrow and get a phlebotomy. But we will try and go to a two month schedule. My hermatocrit is still higher than we want. Still it is good news.

    Speechless...

    You guys continue to amaze and inspire...your attitude, commitment and determination is incredible.

    TAKE NO PRISONERS!!!

  • Eskimo lily
    Eskimo lily Member Posts: 43
    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

  • DMike
    DMike Member Posts: 259
    Another Inlyta Update

    Hi Everyone,

    Thought I'd chime in on my new Inlyta experiences. I've moved up to 7mg -2x day after 23 days at 5 mg - 2x day. I was having no side effects at 5mg. BP was great, no GI issues. I felt as close to great as it gets these days. 

    After 1 week, 7mg side effects are hoarseness, sometimes I have a little brain fog and more physical fatigue.  BP is still good.

    Ron, my bilirubin was 2.1 after 23 days of 5mg. That's not too high for Gilbert's Syndrome. We will see how it does at 7 mg. I did have the fractionated bilirubin done and it showed .4 direct and 1.7 indirect. From what I understand, direct is "good" bilirubin and indirect is "bad" bilirubin. I'm still trying to understand this issue.

    I'm still riding my bike. TW would be happy. He always gave me "atta-boys" for my exercise routine. Although a 30 mile ride now feels like a 60 or 80 miler used to feel. But I still enjoy the hell out of it and I'm not planning to stop anytime soon.

    I have my next scan on February 27. We'll see how the lung mets and my bilirubin are doing then.

    David

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

    Another Inlyta Update

    Hi Everyone,

    Thought I'd chime in on my new Inlyta experiences. I've moved up to 7mg -2x day after 23 days at 5 mg - 2x day. I was having no side effects at 5mg. BP was great, no GI issues. I felt as close to great as it gets these days. 

    After 1 week, 7mg side effects are hoarseness, sometimes I have a little brain fog and more physical fatigue.  BP is still good.

    Ron, my bilirubin was 2.1 after 23 days of 5mg. That's not too high for Gilbert's Syndrome. We will see how it does at 7 mg. I did have the fractionated bilirubin done and it showed .4 direct and 1.7 indirect. From what I understand, direct is "good" bilirubin and indirect is "bad" bilirubin. I'm still trying to understand this issue.

    I'm still riding my bike. TW would be happy. He always gave me "atta-boys" for my exercise routine. Although a 30 mile ride now feels like a 60 or 80 miler used to feel. But I still enjoy the hell out of it and I'm not planning to stop anytime soon.

    I have my next scan on February 27. We'll see how the lung mets and my bilirubin are doing then.

    David

    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