Axitinib / Inlyta

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  • angec
    angec Member Posts: 924 Member
    GSRon said:

    hi Angie.. The vampire just

    hi Angie.. The vampire just drained half a liter out of me. My blood is very thick like syrup. Dr was concerned about a stroke. But I also had six pretty nurses to hold my hand.

    It took six pretty nurses to

    It took six pretty nurses to hold you down? Wow! LOL  Thick blood is not good! What are they doing about that?

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

    hi Angie.. The vampire just

    hi Angie.. The vampire just drained half a liter out of me. My blood is very thick like syrup. Dr was concerned about a stroke. But I also had six pretty nurses to hold my hand.

    Home now...  Hi all.. OK, so

    Home now...  Hi all.. OK, so my Onc appointment was for 3:30, and I got the normal pre-Onc inspections.  When my Onc came in, she was worried.. very worried.. my Red Blood Count spiked up.  As it was about 5 PM, she ran off to get me set up for a major blood draw..  which she described like in olden days when they put leaches to suck blood out...  So, as the Hemitology Dept was closed, she had me go to the Infusion dept which I found out is open until 9 PM.  At least I got a look see at how that goes.. nice comfy reclining chairs, TV next to each chair, etc.  Well, they quickly said I had to go into a separate room with a bed.. plus a tv of course.  Here came the crowd.. the one guy that as to do the poking, and then a bunch of darn purdy nurses to watch it all.  They asked permission to watch, so I took the opportunity to ask if any of them were student types, which got me saddened faces... nope all true Nursey types..  You see they never saw a blood withdrawal in that room, so I was the center of attention.  I must mention a true international group, I spotted the Irish Lass straight off... got a smile out of her.. and some for all over..  Then it was time.. the Vampire guy checked both arms several times.. and I saw a couple of half liter bottles.. and I stupidly asked just how BIG is that needle..?  BIG was the reply.. yes it stung when he poked my skin, then stung again when he poked in to the vein...but no way was I gonna be a wuss with all the women watching.. (ya know how it is..)..  Good news is he found gold, I mean blood.. it splattered all over..  The bottles are vacuum sealed, so once the line is pushed in to the rubber seal it sucks the blood out in to the bottle.. slowly.. very slowly..  He was smart enough to think that once there was about 250 ML that it was time to change to another bottle (more vacuum).  Then when he got to 350 l, he "thought" we were done, and pulled the needle out.. ouch again.  Then he called my Onc who told him no, get a full 1/2 liter... so a new needle and a new location... geesh.. well he got that 150ml plus...  They had me drink a similar amount of water.  Then told me to go home... Wait I said, how about checking my vitals.. Ooops they forgot.. glad I reminded them.. my BP was normal for the first time since I started the Inlyta.

    So, you may want to know if this is all related to Inlyta..  My Onc thinks not... it is either the Cancer or another issue.. more tests to follow.. and likely more blood draws weekly or more often... geeesh...

    Nice to be home..!  Oh yes, my Onc said to start a daily Aspirin regimin to try and thin my blood out...

    Ron

  • Alexandra
    Alexandra Member Posts: 1,308
    GSRon said:

    Home now...  Hi all.. OK, so

    Home now...  Hi all.. OK, so my Onc appointment was for 3:30, and I got the normal pre-Onc inspections.  When my Onc came in, she was worried.. very worried.. my Red Blood Count spiked up.  As it was about 5 PM, she ran off to get me set up for a major blood draw..  which she described like in olden days when they put leaches to suck blood out...  So, as the Hemitology Dept was closed, she had me go to the Infusion dept which I found out is open until 9 PM.  At least I got a look see at how that goes.. nice comfy reclining chairs, TV next to each chair, etc.  Well, they quickly said I had to go into a separate room with a bed.. plus a tv of course.  Here came the crowd.. the one guy that as to do the poking, and then a bunch of darn purdy nurses to watch it all.  They asked permission to watch, so I took the opportunity to ask if any of them were student types, which got me saddened faces... nope all true Nursey types..  You see they never saw a blood withdrawal in that room, so I was the center of attention.  I must mention a true international group, I spotted the Irish Lass straight off... got a smile out of her.. and some for all over..  Then it was time.. the Vampire guy checked both arms several times.. and I saw a couple of half liter bottles.. and I stupidly asked just how BIG is that needle..?  BIG was the reply.. yes it stung when he poked my skin, then stung again when he poked in to the vein...but no way was I gonna be a wuss with all the women watching.. (ya know how it is..)..  Good news is he found gold, I mean blood.. it splattered all over..  The bottles are vacuum sealed, so once the line is pushed in to the rubber seal it sucks the blood out in to the bottle.. slowly.. very slowly..  He was smart enough to think that once there was about 250 ML that it was time to change to another bottle (more vacuum).  Then when he got to 350 l, he "thought" we were done, and pulled the needle out.. ouch again.  Then he called my Onc who told him no, get a full 1/2 liter... so a new needle and a new location... geesh.. well he got that 150ml plus...  They had me drink a similar amount of water.  Then told me to go home... Wait I said, how about checking my vitals.. Ooops they forgot.. glad I reminded them.. my BP was normal for the first time since I started the Inlyta.

    So, you may want to know if this is all related to Inlyta..  My Onc thinks not... it is either the Cancer or another issue.. more tests to follow.. and likely more blood draws weekly or more often... geeesh...

    Nice to be home..!  Oh yes, my Onc said to start a daily Aspirin regimin to try and thin my blood out...

    Ron

    I'm glad that you're home and feeling better Ron

    Slow blood draws after sundown, surrounded by pretty blood-thirsty nurses licking their red lips... Was the guy poking called Dr A.Cula?

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

    I'm glad that you're home and feeling better Ron

    Slow blood draws after sundown, surrounded by pretty blood-thirsty nurses licking their red lips... Was the guy poking called Dr A.Cula?

    Oh my dearest Alexandra..

    Oh my dearest Alexandra.. love your style..!  Actually the guy is from Panama... we had a nice chat while the blood drops got spilled..a lot more than 10 drops... heh.. 

    OK, so my mistake, no picture this time.. but if I have to do that again, I will try to get a picture or two.  But the level of care there at Stanford is awesome..!  Blankets, water, TV, graham crackers all brought to me without asking..

    Got a copy of my blood tests from yesterday, they do not look as bad as I had thought... still waiting for the next directions...

    Be Well All..!!

    Ron

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

    Oh my dearest Alexandra..

    Oh my dearest Alexandra.. love your style..!  Actually the guy is from Panama... we had a nice chat while the blood drops got spilled..a lot more than 10 drops... heh.. 

    OK, so my mistake, no picture this time.. but if I have to do that again, I will try to get a picture or two.  But the level of care there at Stanford is awesome..!  Blankets, water, TV, graham crackers all brought to me without asking..

    Got a copy of my blood tests from yesterday, they do not look as bad as I had thought... still waiting for the next directions...

    Be Well All..!!

    Ron

    FYI, looks like I get to

    FYI, looks like I get to repeat the Vampire act on Monday...  Wonder what the reaction would be if I wore a ring of garlic around my neck..?  I live near Gilroy, California which is the Garlic Capitol of the World.. so they say...  :)

    Ron

  • cran1
    cran1 Member Posts: 139
    Alexandra said:

    I didn't want to write it, but you forced me Ron

    Acne usually comes on a boy's face AFTER he turns 13

    Holyshit! haahha

    Holyshit! haahha

  • GSRon
    GSRon Member Posts: 1,303 Member
    cran1 said:

    Holyshit! haahha

    Holyshit! haahha

    Here I am waiting to get

    Here I am waiting to get needled. But I got my blood tests done. My red blood cell issues are not likely Inlyta related. This means another issue. Too early to speculate. The one last test results are not done yet. Just hope for at least one nurse to kiss my owee. Ron

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

    Here I am waiting to get

    Here I am waiting to get needled. But I got my blood tests done. My red blood cell issues are not likely Inlyta related. This means another issue. Too early to speculate. The one last test results are not done yet. Just hope for at least one nurse to kiss my owee. Ron

    Ms Irish is going to poke me

    Ms Irish is going to poke me now. But I got a food discount card for it taking so long. Oh no.. Ms Irish is blonde.. Ron

  • Alexandra
    Alexandra Member Posts: 1,308
    GSRon said:

    Ms Irish is going to poke me

    Ms Irish is going to poke me now. But I got a food discount card for it taking so long. Oh no.. Ms Irish is blonde.. Ron

    Ms Irish - you're so lucky

    You get poked by a naughty blonde head nurse. I got poked 7 times today by a geriatric wearing crocs and bifocals before she finally found the vein. My arm looks like a blue colander.

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

    Ms Irish - you're so lucky

    You get poked by a naughty blonde head nurse. I got poked 7 times today by a geriatric wearing crocs and bifocals before she finally found the vein. My arm looks like a blue colander.

    Alexandra... so sorry to hear

    Alexandra... so sorry to hear that....  I would gladly offer to kiss  your boo boo...  Tongue Out

     

    Ron

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

    Alexandra... so sorry to hear

    Alexandra... so sorry to hear that....  I would gladly offer to kiss  your boo boo...  Tongue Out

     

    Ron

    Aha..!!

    Hi All..!!  I almost started a new posting.. not sure if I should or not.. but if request it is easy enough to do..!  I think I now have the answer to my blood thickness issue along with a couple of old concerns I had...  I think I have..  Polycythemia vera  See http://en.wikipedia.org/wiki/Polycythemia_vera  for more info about it. 

    I had several concerns at time of surgery last March, 2012, that never got answered.  I had.. enlarged Liver and Spleen.  I have that skin peel on my hands, feet, and those in between regions.  I also have red hands most of the time.  And most recently the high blood pressure caused by excessive red bloow cells, high Hematocrit and Hemoglobin.  All the above are syptoms of Polycythemia vera.  Plus my parents are of European descent which increased the odds a bit.   So I just e-mailed my Dr about it all..  The main treatment is exactly what was perscribed.. remove 500 CC's of blood regularly which for me is twice a week.

    So whre did I get the lead..??  Well tonight at Shop Nite (a regular Wednesday night event)..  The sweetie of a pal of mine who just happens to be one smart nurse figured it out..  Darn fast too..!!  I owe her a bottle of wine... wonder what her favorite is..? 

    Ron

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

    Aha..!!

    Hi All..!!  I almost started a new posting.. not sure if I should or not.. but if request it is easy enough to do..!  I think I now have the answer to my blood thickness issue along with a couple of old concerns I had...  I think I have..  Polycythemia vera  See http://en.wikipedia.org/wiki/Polycythemia_vera  for more info about it. 

    I had several concerns at time of surgery last March, 2012, that never got answered.  I had.. enlarged Liver and Spleen.  I have that skin peel on my hands, feet, and those in between regions.  I also have red hands most of the time.  And most recently the high blood pressure caused by excessive red bloow cells, high Hematocrit and Hemoglobin.  All the above are syptoms of Polycythemia vera.  Plus my parents are of European descent which increased the odds a bit.   So I just e-mailed my Dr about it all..  The main treatment is exactly what was perscribed.. remove 500 CC's of blood regularly which for me is twice a week.

    So whre did I get the lead..??  Well tonight at Shop Nite (a regular Wednesday night event)..  The sweetie of a pal of mine who just happens to be one smart nurse figured it out..  Darn fast too..!!  I owe her a bottle of wine... wonder what her favorite is..? 

    Ron

    Polycythemia vera

    Ron, my father in law had that. He had blood removed every week or so for a while. He did well.

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

    Polycythemia vera

    Ron, my father in law had that. He had blood removed every week or so for a while. He did well.

    Yes, I did a lot of

    Yes, I did a lot of reading... should be OK.. just a bit concerned about having my veins all messed up.. but it will be OK..  However the latest issue is my job..  It was not an issue taking a bit of time every 90 days, but twice a week has become an issue..  This may force me out... Now that may also be OK, just a new frontier for me.. we will see..

    But, this kind of makes all my info on side effects on Inlyta invalid to some degree..  Just hope it is working... we will see in about 2 months...

    Ron

  • toolman1
    toolman1 Member Posts: 44
    GSRon said:

    Yes, I did a lot of

    Yes, I did a lot of reading... should be OK.. just a bit concerned about having my veins all messed up.. but it will be OK..  However the latest issue is my job..  It was not an issue taking a bit of time every 90 days, but twice a week has become an issue..  This may force me out... Now that may also be OK, just a new frontier for me.. we will see..

    But, this kind of makes all my info on side effects on Inlyta invalid to some degree..  Just hope it is working... we will see in about 2 months...

    Ron

    Inlyta Experience

    Hi Ron;

    I too, have been on the Inlyta, starting in March of this year. My initial tablets, (like you) were (2) 5mg. tablets daily, but after 3 1/2 weeks, I found myself in the E.R. with what was initially thought to be a heart attack, (flush skin, sweating, and unable to catch my breath). 2 hours later, the E.R staff was unable to give me a difinitive answer, as to why this had happened. MY GP Doc and Oncologist conferred and mutually agreed that I should discontinue the Inlyta for an undetermined length of time and "see what happens". 2 month's later all my internal systems had returned to normal, so we resumed the Inlyta albeit, only a single 5mg. tablet daily. Yesterday, 10/11/2013, I had labs/CT/and bone scan, and on Monday 10/14/2013 will get the news on mets activity. I am encouraged, because after the first go round of just 3 weeks plus, the CT's showed significant shrinkage, and now I've been on the stuff for 4 month's straight. For me, my BP has been well managed well by using Tribenzor 20-12.5, and a thyroid med called Levothyroxin 25mcg. I have minimal side effects and quality of life remains good. 

    Best of luck to you. Gary

  • alice124
    alice124 Member Posts: 896 Member
    toolman1 said:

    Inlyta Experience

    Hi Ron;

    I too, have been on the Inlyta, starting in March of this year. My initial tablets, (like you) were (2) 5mg. tablets daily, but after 3 1/2 weeks, I found myself in the E.R. with what was initially thought to be a heart attack, (flush skin, sweating, and unable to catch my breath). 2 hours later, the E.R staff was unable to give me a difinitive answer, as to why this had happened. MY GP Doc and Oncologist conferred and mutually agreed that I should discontinue the Inlyta for an undetermined length of time and "see what happens". 2 month's later all my internal systems had returned to normal, so we resumed the Inlyta albeit, only a single 5mg. tablet daily. Yesterday, 10/11/2013, I had labs/CT/and bone scan, and on Monday 10/14/2013 will get the news on mets activity. I am encouraged, because after the first go round of just 3 weeks plus, the CT's showed significant shrinkage, and now I've been on the stuff for 4 month's straight. For me, my BP has been well managed well by using Tribenzor 20-12.5, and a thyroid med called Levothyroxin 25mcg. I have minimal side effects and quality of life remains good. 

    Best of luck to you. Gary

    Gary,
    Finally some good news.

    Gary,

    Finally some good news. I am thrilled. And I hope 10/14 will prove you're metless. 10/14 marks John's two year anniversary since his RCC diagnosis. So I'm keeping fingers crossed we're celebrating his anniversary plus good news from you. Please keep us posted.

  • GSRon
    GSRon Member Posts: 1,303 Member
    alice124 said:

    Gary,
    Finally some good news.

    Gary,

    Finally some good news. I am thrilled. And I hope 10/14 will prove you're metless. 10/14 marks John's two year anniversary since his RCC diagnosis. So I'm keeping fingers crossed we're celebrating his anniversary plus good news from you. Please keep us posted.

     
    Tool Guy.. yes good

     

    Tool Guy.. yes good news..!  Hope it continues to go well for you..  Alice I love your term..  "Metless"..  You should trade mark that one..!! :)

    Ron

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

     
    Tool Guy.. yes good

     

    Tool Guy.. yes good news..!  Hope it continues to go well for you..  Alice I love your term..  "Metless"..  You should trade mark that one..!! :)

    Ron

    New words

    OK, so I am learning new words.. I am to get a new blood test, Erythropoietin or EPO fpr short.  This is a protein that tells my body to make more red blood cells.  It could be that I am making too much of this EPO and that is the cause of my latest issue.

    >>>Normal serum concentrations of erythropoietin for 95% of individuals with normal hematocrits range from 4-27 mU/mL. 

    As the hematocrit is lowered by iron deficiency, aplastic or hemolytic anemia, the concentration of erythropoietin increases as shown in the graph below. In the absence of anemia, elevated concentrations are seen in renal tumors, as a manifestation of renal transplant rejection, and in secondary polycythemia. Low values may be observed in hemochromatosis.<<<

    More fun today.. .another 1/2 liter to be drawn..wonder who is doing the deed today..??  We will see...

    Oh and the cause of this latest issue can be either my Liver or my one Kidney..or..??

    Be Well All..!!

    Ron

  • toolman1
    toolman1 Member Posts: 44
    toolman1 said:

    Inlyta Experience

    Hi Ron;

    I too, have been on the Inlyta, starting in March of this year. My initial tablets, (like you) were (2) 5mg. tablets daily, but after 3 1/2 weeks, I found myself in the E.R. with what was initially thought to be a heart attack, (flush skin, sweating, and unable to catch my breath). 2 hours later, the E.R staff was unable to give me a difinitive answer, as to why this had happened. MY GP Doc and Oncologist conferred and mutually agreed that I should discontinue the Inlyta for an undetermined length of time and "see what happens". 2 month's later all my internal systems had returned to normal, so we resumed the Inlyta albeit, only a single 5mg. tablet daily. Yesterday, 10/11/2013, I had labs/CT/and bone scan, and on Monday 10/14/2013 will get the news on mets activity. I am encouraged, because after the first go round of just 3 weeks plus, the CT's showed significant shrinkage, and now I've been on the stuff for 4 month's straight. For me, my BP has been well managed well by using Tribenzor 20-12.5, and a thyroid med called Levothyroxin 25mcg. I have minimal side effects and quality of life remains good. 

    Best of luck to you. Gary

    Inlyta Experience "Part II"

    10/14/2013 Follow up to labs/CT/Bone Scan;

    So the basics are posted on my entry above. The first go-round of the Inlyta (3weeks or 23 days), showed 1-3% met reduction in size, (even though the scan results are read in cm's of initial dia vs reduction in dia). This scan showed all but 1 met had reduced an average of 8-15% in size. The one met that is resisting the drug, has not changed (larger or smaller) since beginning the drug. Don't know why. So now that the cough has been managed, I'm going back to the once daily 5mg. Inlyta tablets. It's odd to me, (the results, that is), because initially, the Onc. had told me that this particular drug was supposed to hold all mets at their current size, and not allow further growth. I'm not complaining for sure, just pleased at the results!

    Stay tuned folks. Gary

  • GSRon
    GSRon Member Posts: 1,303 Member
    toolman1 said:

    Inlyta Experience "Part II"

    10/14/2013 Follow up to labs/CT/Bone Scan;

    So the basics are posted on my entry above. The first go-round of the Inlyta (3weeks or 23 days), showed 1-3% met reduction in size, (even though the scan results are read in cm's of initial dia vs reduction in dia). This scan showed all but 1 met had reduced an average of 8-15% in size. The one met that is resisting the drug, has not changed (larger or smaller) since beginning the drug. Don't know why. So now that the cough has been managed, I'm going back to the once daily 5mg. Inlyta tablets. It's odd to me, (the results, that is), because initially, the Onc. had told me that this particular drug was supposed to hold all mets at their current size, and not allow further growth. I'm not complaining for sure, just pleased at the results!

    Stay tuned folks. Gary

    Gary glad you are doing

    Gary glad you are doing better. I have some good news.. My blood is not as bad as it was. So they are going to take a half liter of blood in a few minutes, but it looks like only once a week now. Ron

  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    Joining The Inlyta Club now

    Hey Kids,

    I guess I am the newest member of the Inlyta Club.  Here's hoping it doesn't suck.

    Background- Stage 4 Papillary RCC, 2009; Rad neph, IVC thrombectomy, lymph resection 2009.  Remove single lung met 2011. New lungs mets popping up here and there.   IL2 2012- failure (Boooo!), Votrient 2012-2013(Boooo! Hisssss!)  LY2875358 5 infusions (Booooo!)

    So the next deal is Inlyta, just got off the phone with the specialty pharmacy.  1 mg tabs, 3 tabs, 2x daily-- so 6 mg daily.  Will be trying some facets of Nanosecond's diet and supplements along with it.  I'm not into side effects-- I have golfing and skiing and rollerskating and dancing and stuff to do.Cool