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Axitinib / Inlyta

GSRon's picture
GSRon
Posts: 1228
Joined: Jan 2013

Hi All..  OK, so I am creating a new topic for just those that have any info on Inlyta - Axitinib.  I began Votrient in March, 2013, and stopped it due to Liver issues in July, 2013.  I started the Inlyta on 9-5-13.  Here it is less than two days later and my B.P. this morning was 162 / 100.  I should say that I anticpated the B.P. rise and took a 5 MG Norvasc on top of my 50 MG Metorprolol.  Two hours later, I am only down to 157 / 94.  I will check it again about every two hours.  

For me, I get a headache with high B.P. and so far this is the only side effect, but I know it is too soon to really report on much.  More to follow..

Ron

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Congratulations Ron on starting a thread which will, I anticipate, become an important and useful one in no time.  It'll be interesting to see how it compares with the voluminous info. on the topic already in place in Smart Patients and to see whether the two groups of participants have different focuses of attention.

I'm a bit alarmed at how rapidly your BP has jumped on Inlyta and you know how unhappy I am about Norvasc (amlodipine).

Couple that with our common experience of liver enzymes on another TKI and I hope your docs and you will monitor your early experience very closely indeed!  I'll certainly be following your fortunes with interest.  Best of luck with it  - if it delivers the sort of result we were both getting on Votrient, that will be fine to be going on with.

Eskimo lily's picture
Eskimo lily
Posts: 43
Joined: Aug 2013

Hi Ron!

 

thank you for keeping us updated. I hope the inlyta works for you. Do you also follow a cardiologist who helps manage your blood pressure with your new medications? or is it your oncologist who does it all?

GSRon's picture
GSRon
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Yes, I am too surprized at how fast my BP went up.. it is now 151 / 89, not much better.  And yes I know how bad the Norvasc can be, which is why I am hesitant to take much of it.   But my built in BP monitor lets me know.. (I get a nasty headache whenever my BP spikes upward).   I am scheduled to see my Cardio Dr on the 23rd of this month, I may want to move that up.  I just took another Inlyta pill for this morning... see what happens in a few hours.

I do a follow up blood test in 30 days...  I asked about doing it sooner but was told it should be OK until then... we will see...

Ron

GSRon's picture
GSRon
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Joined: Jan 2013

Hey T.W., I will definitely keep you posted.. if the Inlyta is both Liver friendly and gets the Mets out.. then perhaps you will follow me down this road..?  This is the first time that I am leading the way (at least from what I read on here..).    My real hope is that this thread becomes an info spot for those that come down the road..  I am going to post elsewhere on what I learned on Thursday..

Ron

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

GSRon Sir:  I will start off by saying that I realize that you have liver function issues so this is simply my experience.  My Inlyta dosage is 5 mg twice a day beginning in early August...I take Doxazosin 4mg once a day... originally for BPH but with the side benefit of BP control.  After several years on Norvasc I was moved to Felodipine 10 mg er twice a day after swelling issues.  Then after 3 or 4 years of Metropolol for rapid heart beat I developed an allergy and was put on Carvedilol 25 mg twice a day.  In addition I take Atorvastatin 40 mg once a day.  Plus various vitamin supplements and fish oil twice a day.  My BP monitoring is morning and evening with a definite rise from am to pm.  Since I'm about 40 lbs. overweight that is also a factor.  As I confessed in an earlier post, my first ride with Inlyta ended because of my faulty monitoring technique.  I'm sure you're watching that as well.

No prisoners !

 

GSRon's picture
GSRon
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Sir Gordon Charles..!   Thank you very much for that info.. it will help me..!!  right now, I am monitoring my B.P. about every two hours.  And yes, I will be contacting my Heart Dr on Monday to see if there should be a meds change..!!   You my friend are another gem around here..!!  My attitude just got improved..!!!  Thanks..!!!  :)

Ron

GSRon's picture
GSRon
Posts: 1228
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Well gang.. only a couple of hours later and my two olde unwanted friends have arrived...  S & S.  OK you know them more as the results of Fatigue and Diarrhea...  Gosh..!!   And my B.P. is still up there (along with the headache of course)..  not sure what to do about that yet..

Now if the drug just works... it will of course be worth it..!

Ron

Eskimo lily's picture
Eskimo lily
Posts: 43
Joined: Aug 2013

Hey Texas wedge and Ron,

 

do you mind me asking why is it you don't like norvasc (amlodipine)? Just wondering if there's anything I should be concerned about because my mom is on a 10 mg dose of it daily for her bp.

gosh, Ron, I hope those darn s&s go away soon! 

GSRon's picture
GSRon
Posts: 1228
Joined: Jan 2013

Norvasc can have some nasty side effects for some people.  So far no issue for me.   But I have figured out that for me, it can take between 4 to 8 plus hours to lower my B.P.  YMMV.

 

Ron

Texas_wedge's picture
Texas_wedge
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Joined: Nov 2011

I've just somehow deleted a long reply to a private message on SP to this very question.

The best thing would be for you to do a search on SP for Amlodipine and you'll find the thread where we discussed it at great length.

Let me know if you have problems doing this. Right now it's too wearing for me, on my iPhone and stuck in hospital.

GSRon's picture
GSRon
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I did a search on SP.. there are a lot of posts that mention Amlopidine..!  I reveived one of them, a good re-read for me.   I will be seeing my Cardio Dr in a week, and will see if there is a better drug to recommend for my BP that is possibl less toxic to my Liver..   This is another verification of how we all help each other..!

So, Wedge-a-Matic.. hope your body is doing better now..!  Wondering if this latest "AHA" moment opens the door for revisiting some past treatments..?  Or at least opens a door for new treatments / possibilities..!

FYI, I did a bunch of praying the last couple of days... and yes I put in a bunch of good words for everyone here..!  It can't hurt..!

Be Well All..!!

Ron

angec's picture
angec
Posts: 621
Joined: Mar 2012

Ron, that was awful quick for you to get high bp! I was reading some other posts on SP and i read where the pressure and other side affects were pretty intolerable for some others. They went down to (I think) it was 3 mgs twice a day and also took a week off at some point. So for some, it was like Sutent, 4 weeks on one week off sort of thing. Please keep that in mind when you see your doctor. I would also think about seeing your gp earlier to get the bp under control.  Do any of your bp meds have a water pill added to them?   I am hoping it works out wonderful for you and that once it all gets balanced it helps you greatly! You probably are careful about using salt anyway, but be extra careful about the salt while the bp is so high.

TW, sorry to see in your post that you are still in the hospital. I hope you are home soon and the reason for the stay is nothing too serious.  Hugs to you both!  xxoo

GSRon's picture
GSRon
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Hi Angec..   Sorry, I should of been more specific.  I do not go to a GP for any of this stuff.   I will be seeing my Cardio Dr, she is top notch and will quickly determine the most Liver friendly drugs I can take that won't alter the Inlyta.

As an FYI, my Cardio Dr uses some special internet medical library to see what drugs will not interfere with my Chemo Drugs, and I know she will similarly see what drugs won't potentially harm my Liver.   This is good for all to remember when talking to the non-Onc Drs. 

Hey Wedge-a-ma-callit..!   Just a silly idea I have...  is it possible for you to find a trial here in the States..?  I mean if you found one at either Stanford or USF, I can offer a free room.   Now if you were a single woman, I could suggest a domestic partnership... heh..   But seriously, if you got on a trial, that would cover a lot of the costs of a visit over here...  Oh yes, lots of golf courses near by.... ahem..    Just a silly idea...

Ron

Texas_wedge's picture
Texas_wedge
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Not a silly idea Ron and one that's been put to me by a few of our dear friends here, in various US locations.  The mere prospect of meeting you is extremely appealing and my conviction that these offers are genuine is heart-warming and flattering.  At the present time, there are no trials anywhere that I could qualify for - but that may change and we'll be trying to keep all eyes aNe ears open! 

Thanks again and I hope Inlyta works well for you.

GSRon's picture
GSRon
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T.W. You know I mean it..!  Heck, I do get visitors here from time to time.  In fact the "Kids from Notts" show up here on Friday.  No not my kids.. but a good pal's kids.. well Kid and his sweetie actually.  Fun having them around.  Last time was for the California Rodeo and Moto GP.

OK, so  you clearly do not see anything trials wise for you..?  Well, one possible opportunity coming up is a subject I brought up a couple of times.   It was supposed to start this year, but got put off to early (jhopefully) next year...   CD47.  And if that one sounds interesting to you, perhaps an e-mail to Stanford is in order.

Guess I am saying please keep your options open..!!

Oh yes, and the climate here is not that much different than there... less rain, about the same amount of sun.  Oh but no real winter..... think about it..

Ron

danbren2's picture
danbren2
Posts: 183
Joined: May 2013

Ron,

     Hoping this works for you and that side effects will be minimal.  You have become an inspiration to me and I hope that you have nothing but great results from this treatment!

                                                      Sending love and prayers for a healthier you!

                                                       Brenda

GSRon's picture
GSRon
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Update time..  OK now in to my 3rd week well close enough.  I have the H and S stuff, pretty mild, but also have H&S&S&P,  OK guess I will spell it out.. my nether regions. peeling and skin cracking and sore as heck at times.    I figured out a hot shower really brings it on... geeesh..  I love my hot showers daily...

Yes my BP is up, almost alwasy a bit high even on the meds I am on.  I am to see my Cardio Dr this week, but that may get postponed.  Then I get my 30 day blood work about another week after to see how my Liver is doing...

So, I am thankful that we all have a lot of hope... and it seems most if not all of you are paying attention to your bodies... Friday a pal of mine keeled over from his second heart attack (never changed his diet, lots of Big Macs and fries) and this morning my Aunt had a massive heart attack and died.  Please pay attention to your body... it is talking to you in one way or another....  That makes 3 people in less than a month, 1 from Cancer and 2 from Heart attack.

Ron

angec's picture
angec
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Dear Ron, I am ever so sorry to hear about the three losses you have suffered!  I think about a month or so ago, you also lost about six people in a relatively short amount of time.  Thank you for telling others to listen to their bodies! You are so right!  I hope you are doing ok inspite of it all! 

I have to say I am a bit concerned about you being checked in 30 days for your liver.  Shouldn't you be getting checked every other week at minimum?  With a new drug and the previous liver isses, i thought they would keep a closer watch for a bit!  Also the bp, are you keeping in touch with the gp for that? Be sure to watch it carefully.  

 

Anyway, the recent side affect you posted sounds like a bit much!  Has anyone else gone through this? What do they offer for this? Doesn't it sound a bit like the peeling described by Fox with the IL-2?  My heart goes out to you! I hope these s/e's go away soon and you do well on the new drug! Hand in there friend! :)

 

GSRon's picture
GSRon
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Angec, thanks for the kind words...  I am OK overall... just hoping the drug works.. the SE's are a minor inconvenience after all..  Besides there is no wonderful woman in my life to complain that I am currently unable to "perform"..  :)   So in the big picture not a big deal... I see my Cardio Dr on Tuesday, then drive to Los Angeles for a Wednesday funeral... sigh..    The long drive will give me time to reflect on a few things...

Be Well All..!

Ron

foxhd's picture
foxhd
Posts: 1901
Joined: Oct 2011

Do well buddy. I know you will.

liznjon
Posts: 1
Joined: Sep 2013

Be  careful with inytla had 2 seizures in hospital for 8 days know on meds for seizures and switch to votrient which i am tolreting  hope it works for you

GSRon's picture
GSRon
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No big deal... especially compared to that HD-IL2 stuff..!  Overall I feel darn lucky to still be here... and my comments are purely for others to know what may be experienced while in Inlyta...   Oh yes, and hopefully there is some intertainment value as well..   I did forget to mention that I have a face full of zits.!  Yes, I now feel a bit like a teenager again... right... NOT..!!  However you can tell in the scheme of things this too is minor.. so minor I forgot to mention it earlier...

And I should state that telling you about the two heart attacks, is to remember that others have health issues too..  Just a bit of life's perspective. 

Be Well All..!!

Ron

angec's picture
angec
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Well Ron, on the brighter side of things.... always a brighter side right?  This drug has brought you back to puberty!  Hail Inlayta!  Be careful on the drive.

foxhd's picture
foxhd
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Ron, I've sent you are Mily Cyrus poster. I know that in our day it was Farah Fawcette. But, I thought it would go with the zits.

GSRon's picture
GSRon
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Oh my...  OK, so I learned a lot today... not much good... per se.   Well, you see that up until today, none of my family knew about my Cancer, last year's operation etc.   But as I am attending my Aunt's funeral this week... I knew it would come out.   So I told my one cousin this morning, and needless to say the word spread faster than my Mets...   So, I just talked to my other cousin.. had not talked to her is about 40 years... well her son has polycystic kidney disease, she has thyroid issues (Cancer..?), and another cousin has Ovarian Cancer... Needless to say there is a lot of Cancer within my family..!  I did send the CSN link to my one Cuz, and I suggested she pass it on to those that need it...   I can only wonder if somehow we all got bad genes...??

Be Well All..!!!

Ron 

angec's picture
angec
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What an eye opener for you today!   I see alot of cancer going on today and I am not too sure it all depends on genes.  MY SIL who is 47 and has stage 4 uterine cancer had great scans two months ago, where some spots were gone and others were smaller. This week she goes for another scan and they are growing again! :(  I have heard of three of my friends who have cancer just last week, my mom has RCC, my other SIL's aunt has breast cancer and she just lost her sister to breast cancer.  The list goes on and on. And yet, no cure yet?  Besides a cure, the food industry is trying to kill us with GMO's, food imported from other parts of the world where dog food isn't even safe, no label information, etc.  We all have to stay vigiliant with our diet, eat organic, locally grown fruits and veges if we can, grass fed meat with no hormones or antibiotics. I am incorporating raw veges into my diet more and more and trying to juice daily. 

But Ron, I hope the new scans show some positive results for you on the new drug. I wanted to ask, what is the normal dosage for that drug?  I know there are several different dosages.  Do you take one am and one pm?  How are the side affects treating you at the moment?  Are you on Milk Thistle?  I hope you were able to find out just what is happening with your liver.  Did they do all kinds of tests and even offer you the hepatitis vaccine? They offered that to my brother because he had high numbers but thankfully we got his numbers down.

Keep your chin up!!  By the way, the bike is really nice! ;)

 

GSRon's picture
GSRon
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Where do I start..??  OK, I am taking 5 MG Inlyta twice a day... which is about mid dosage as far as I can tell.   I think max dose is about double what I am on.. and some people do like a 5 MG and a 2 MG.   No major side effects as of today...  Hypertension is listed as occuring about 48% of patients... so that is the main worry..  Hand and foot (I have that, worst part is the skin issues mid body.. nuff said)..  I have teen like acne, and some fatigue..  Not bad... really not bad... the skin issues I am using lotion on and that reduces the itchy feeling which helps.

 

OK, maybe this is not the best place to post this part.. but I will start here... anyone feel free to add it somewhere else if there is such a need... dunno...

 

Bilirubin - Aha..  my Onc said I had a disease called Joe Bears...   I tried to find it, but could not...   So today I saw my Cardio Dr (she is great.. also good looking.. Ooops..!!).  Anywas my Cardio doc spends more quality time with me, and seems to like it when I question things..  When I brought up my Bilirubin issue she aske about my Liver Enzymes, and I said they are normal now... she blurted out.. you have classic Gilbert's disease... Gilbert was a French guy so you pronounce it Joe Bears... geeesh...    OK, so Gilbert's is no big deal.. yes my Biliruben will be above normal... but nothing to worry about.   My Cardio Doc says like 10% of the population have Gilbert's and do not even know it.. duh...!!  Ding ding ding...   So I will post two links below that give good info...

So we had a chat about Norvasc (Amplodomine) and she kind of chuckled... and put things in perspective...  IF a person is at Max dose then yes Liver issues can happen.  But I am on a very small dose AND I only take it when I need it, which is less than once a week.. No issue...   And she told me more.. basically there are two kinds of B.P. meds, ones that metabolize in the liver and ones that use the Kidney... take your pick..??   Aha.. now I understant... but she also stated that Statins would not be good for me...(I knew that already).   So the nurse took my BP and it was normal... like 125 over 72.   I was surprized, so the Doc took my BP twice more.. same results... cool..!!   My Cardio Doc is all for how I am managing my BP.  I take the Metroprolo daily (50 MG)  Up that dose to double if need be, and use the Norvasc should my BP go crazy...  And if it goes crazy take a Norvasac or even two of them.. and if my BP is not behaving call her ASAP...!   Like I said she is awesome..!!  

So here are two Liver links... remember, there must be 50 ways to love your Liver....""

 

Ron  :)

 

http://www.howtodothings.com/health-and-fitness/a4674-how-to-understand-gilberts-syndrome.html

 

http://www.liverdoctor.com/liver-problems/gilbert-syndrome/

Texas_wedge's picture
Texas_wedge
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Ron, what are your liver enzyme numbers now and did your bilirubin go over the 400 mark, like mine? 

I'm glad to hear you're coping well with the s-e's.  I guess you'll be following the big Conversations on that topic on SP? Incidentally, you'll see I've made another side-swipe at Norvasc while warning folks there about new  European findings about metoclopramide - too dangerous for anyone in their right mind to take for more than 5 days and best avoided completely!

angec's picture
angec
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Thanks Ron, for the personal information and info about Gilbert's. I would have looked it up the same way, Joe Bear's!  Glad things are working out with the bp meds and you seem to be fine!   I think acne is adorable on a man in his 60's!  ;)  Along with the colorful hair! 

GSRon's picture
GSRon
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FYI, the hair color is gone.. back to the salt and pepper..  Yes the all white look is gone with the Votrient...  OK so aside from the Bilirubin my Liver numbers are great..  Kidney not great, but nothing major bad either.

Here are a bunch of numbers... more than just Liver.. FYI

eGFR 41 (too low, I know...)

Bilirubin 2.2 (high)

Glucose 90 (nice..!!)

Alk 55

AST 20

Alt 28

Creatinine 1.8

All the other blood tests are in normal range... even my WBC is up.   Note this test was taken on 9-3-13 after being off of Votrient almost 2 months.

 

GSRon's picture
GSRon
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What a difference a few days make...  I guess I spoke too soon.  My BP spiked  big time yesterday, and still is way high.  It went up to 195 / 110..!  I took lots of pills to bring it down.. finally a full day plus later it is now just a little high.. 138 / 85.  For me, high BP gives me a nasty headache.. and it finally is a low grade headache..  Oh I also had some slight nausea, but a single piece of hard candy does the trick...  One more week until my one month blood tests... woo hoo..!!!

Be Well All..!!

Ron

cran1's picture
cran1
Posts: 128
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Be well Ron.

 

Alexandra's picture
Alexandra
Posts: 1211
Joined: Jul 2012

Don't be a daredevil on your bike with the pink helmet, keep you BP down. Good luck with those blood tests next week.

Speaking of zits, do you know the difference between a priest and acne?

Hugs,

Alexandra

GSRon's picture
GSRon
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Whew..!!  Here it is, late Sunday night.. BP is again normal... headache gone.. life is good..!  Thanks for the good wishes Cran and Alexandra..  I forgot to mention that I also have a lapel pin like the decal on my racer... yes a pink helmet with a ribbon on it...!!  Time to get some made with the right Kidney color... wear them both...

 

Ok, you can pop a Zit but not a priest..??  :)

Ron

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

garym's picture
garym
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I LOVE IT!!!  LMAOROTF

GSRon's picture
GSRon
Posts: 1228
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But perhaps you like to be forced... oh my... that was sooooo bad...!!  :)

Ron

GSRon's picture
GSRon
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ok.. Just got told that my red blood cell count is too high. Time for the leaches. They are going to take a couple of pints..

angec's picture
angec
Posts: 621
Joined: Mar 2012

Ron, what exactly does that mean? Will taking blood lower it or do they just want to run more tests? My thinking cap is off right now! How is everything else? How is the liver?  Hope all is good!

GSRon's picture
GSRon
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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.

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

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

GSRon's picture
GSRon
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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's picture
GSRon
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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's picture
cran1
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Holyshit! haahha

GSRon's picture
GSRon
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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's picture
GSRon
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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's picture
Alexandra
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Joined: Jul 2012

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's picture
GSRon
Posts: 1228
Joined: Jan 2013

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

 

Ron

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