Your Test Results

angec said:

Thanks Ron, that certainly is

Thanks Ron, that certainly is a great idea!  i hope your tests aren't too bad.  Is all ok with the RBC's?  

HI Angec... iin a word nope..  But I may be down to a single phlebotomy a week..  The numbers are slowly decreasing (too slow for me), and next Monday I finally sse a Hemotolgist.  I have done the EPO test and that number is slightly high, but I do not yet know what that means.  I am not sure if my new diet changes, or the phlebotomy or..?  is responsibile for the improvements.  I do not eat anything green, no broccoli, lettuce, green beans, etc.  Thanks for asking..!!

Ron

angec said:

Maybe Neil can chime in on

Maybe Neil can chime in on the "anything Green"..... how do you get the vitamins you need?  Is that a standard way to eat with the RCC?   At least you are down to one draw a week.  Even though I know you like the cute, Blonde, nurses! AHEM!  I hope the hematologist can shed some light on it all! How are you otherwise with the Inlyta?  Big hugs!

Hi Angec. My latest diet change is not related to RCC. Vitamin K promotes red blood cell growth. But I eat other vegetables. As far as the Inlyta goes. Well I have some nasty skin peeling. Ron

GSRon said:

Yes, Neil is correct. I am an

Yes, Neil is correct. I am an oddball. No eat your greens. Lots of good stuff in them. Just that I need to reduce my intake of vitamin K. Ron

Well people.. Today I became a lab rat.. I was wondering why I had to get to Stanford earlier today. I was presented with consent forms. My new Dr is trying to figure out my new disease. Of course I said yes. So far I just had to fill up four extra vials of blood. Hope that it helps lots of people.

GSRon said:

So i just met with one

So i just met with one doctor. Waiting for the main doctor now. Was told that there are two types of treatments for poly Vera.  Phlebotomy and chemo. Since I am already on chemo, that adds to the quandary. But it appears that I can get away with having the one phlebotomy a week.

OK, likely my last post for the day.. Yes I am now home, I do not like to type on my cell phone...  So, it was a productive day overall..  I kind of like being an official lab rat of sorts..  At least I can contribute something.. and there it seems like this will be pretty easy...  I just wish they would of told me before hand, instead of me worrying a little bit about it over the weekend...

So, I had two pretty thorough exams today.. poked and prodded feeling for all my insides for tenderness and size.  This was good.. nothing unusual... no lumps or bumps...  But did confirm my enlarges spleen.  This I knew..  FYI, I had an enlarged Liver, Spleen, and Heart..  Turns out that at least the Liver and Spleen are mentioned as typical of the Poly Vera, PV for short.  Just that the other symptoms were not visible last year and this went undiagnosed.  I had on at least two occasions asked my Onc about the enlarged organs, but she was not worried... she did agree to additional testing for the Liver, but that never happened.  Now we know the reason...  PV has a bunch of attributes to it..  many causes but no cure.  The good news is that my Dx came before anything bad has happened, as PV left alone is often fatal with the mean life expectancy of around 2 to 2.5 years.  But with treatment, no issue, whew..!  But as I keep saying, I am an oddball... my PV is way different than normal.  My EPO is not crazy high, my WBC is not crazy high or low.  They tested for the normal gene mutation, nada..  So this makes me someone they want to study.  But all my Drs feel this is totally unrelated to Cancer or Cancer drugs..  And the blood tests show a pattern that gives this statment credit..  Again, save all your tests folks, you just do not know when they may become important.

So, I was also amazed that the only treatments are Phlebotomy and Chemo...  Geesh.. can you imagine taking Chemo drugs if you did not have something like Cancer..??

OK, here was some more good info... I was asked a lot of questions... as there can be all kinds of reasons why a person has PV.  So, things like, smoking, alcohol, other drugs, Viagra, Testosterone Patches, unusual diet... and...  Supplements.  Yes over dosing on Suppliments can influence your body.. but we all KNOW that..  So a little may be OK and helpful, but too much can be harmful..  The fact that none of the above applied to me made the Docs smile.. plus it eliminates outside influence per se..

What will happen in about 5 weeks will be my next set of scans.  Obviously we need to see if the Inlyta is working.. but also the Hematology Dcs want to see what size my organs are...  This is a good reason to have all your Doctors on the same page.. so they can work together, even though they are working on different issues..  More good news is that the Dr says is that soon enough the phlebotomy will "Catch" up and I won't need them as often... I like that idea..!! 

So, stay tuned... and keep your medical data intact..!!

Be Well All..!!

Ron

GSRon said:

Hi Bettie..!  Hang in

Hi Bettie..!  Hang in there..!!  And feel free to vent away, one thing I have is strong shoulders.. have at it any time..! 

On PV, it is mostly inherited.. and I just minutes ago found out my Maternal Grandad had it.. amazing..!   Symptoms are few.. but sometimes red blotches on the arms, itchy spots, high blood pressure not attributed to other issues.  But PV is very rare, less than 1% of the population.

Actually it may seem odd, but I am very happy with the diagnosis... as some of the possibilities are much less fun or desirable, like Kidney or Liver failure, or a bone marrow problem.  Having a weekly phlebotomy is much better than losing one of those two organs...  Sometimes we all need to put things in proper perspective... it can always be worse and I try to be glad for the much lessor of the possible evils..!!

Soon I pick up my little racer.. winter projects will soon begin..!!

Be Well All..!!!

Ron

Update.  Yesterday was a fun day...!  I took my little racer up to the San Mateo International Motorcycle Show.. it is on display through Sunday.  Had to leave the show around 4:30 for my date with the Vampire.  OK, so I was a tad late..  But, I had the most wonderful Vampiress...  To me there is nothing like a well preserved mature woman... with real experience with a needle.  She got about 530 CC's out of me in no time.. the best experience yet.!  I now have two pretty Nurses that make this treatment pretty easy.   And this tall blonde beauty looked good in both directions..  Ooops.. hey I am a guy ya know..!  I will have to get her picture next time...  Back to the PV, this Nurse knew all about it, so we chatted all the while the bottle got filled up, which is why that litte extra in the bottle..  Plus she did the follow up blood pressure check and kicked me out.. about an hour from door to door. 

Then I had dinner with a pal and his sweetie, it was his birthday and I sprung for an awesome dinner..  Life is good ya know..!!! 

Ron

Jojo61 said:

I agree with

I agree with Sindy.....whatever gets you through! Your strength and grace (and sense of humor) amaze me.

 

Stay strong!

 

Thank you ladies..!!  Luckily, I am almost twice Sara's age... or I would be chasing her around the place.. heh..   I must say that all the distractions here and there make the day a lot nicer...  Tomorrow I meet up with about 200 pals and lots of olde motorcycles... it will be a good day... well until late afternoon.. the a bunch of us go to a memorial for another pal... a story fofr another time...

Be Well All..!!

Ron - I don't want a pickle... jus wanna ride my motor sickle....