Eskimo lily said:

Hi Ron!
 
thank you for

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?

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 said:

Sir Gordon Charles..!   Thank

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

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 said:

Norvasc

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! 

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 said:

Amlodipine

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.

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 said:

Ron, that was awful quick for

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

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 said:

Accommodation offer

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.

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 said:

Sending you Prayers

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

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 said:

Dear Ron, I am ever so sorry

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!

 

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