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Your Test Results

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi All..!  OK, one thing occurred to me.. I think it is important that we all keep a good history of test results...  I mostly mean blood tests.  For me, my medical tests are all on line and can be viewed over time by each test.  This way you can spot any trend if need be.  In my case, my Onc spotted a trend in my red blood cell count along with moderate high blood pressure.  Oh yes and a couple of other related blood tests showed the same trend..  This spotted trend may be life saving..!   So I suggest everyone does monitor tests for changes and trends.. your Dr may miss something important...

Be Well All..!!

Ron

angec's picture
angec
Posts: 653
Joined: Mar 2012

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

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

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's picture
angec
Posts: 653
Joined: Mar 2012

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!

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

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

NanoSecond's picture
NanoSecond
Posts: 586
Joined: Oct 2012

Hi Angec.  I am happy to suggest what might be considered "healthy" nutrition in normal circumstances.  But I think in Ron's case something a bit out of the ordinary is going on.  So until they can explain why he is experiencing these symptoms it is probably not a good idea for me to suggest what might be best for his diet.

angec's picture
angec
Posts: 653
Joined: Mar 2012

Hi Neil, duly noted!  I meant in general, greens are not a no-no for RCC is it?  Just wondering! Yes, in Ron's case i see that Vitamin K is an issue. I hope the blood doctor will be able to help him, he needs to figure this one out!  But good that he is watching what he eats.  

 

Ron, sorry for the major skin peels. Is this normal for the Inlyta?  When will it stop? Any idea? In any case, maybe that is a good sign!

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

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

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

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's picture
GSRon
Posts: 1306
Joined: Jan 2013

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.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

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

Bettie7752
Posts: 14
Joined: Oct 2013

Ron, I sure wish you the best of luck with your PV diagnosis. What are the symptoms?  I have never taken any supplements because I always thought I had a good diet.  But I know enough by being an RN not to take anything herbal, supplements, etc.  But I am getting sick of well-meaning folks trying to push supplements and stuff on me.  I went to a friend's house yesterday and she kept trying to make all kinds of fruit-vegetable juices for me.  Sorry, but apple/broccoli juice tastes rotten.  I are tired and want my life back.  I had to go back to the Dr--AGAIN.

Take care,

Bettie

Bettie7752
Posts: 14
Joined: Oct 2013

I had gotten kinda used to getting blood drawn once a week. I had really nice veins. But last week was different and the CT techs had a really bad time starting an IV on me to inject the contrast. The tech finally said that my poor veins were now scarred really bad and I need a port. It never dawned on me that it was a possibility as I haven't had chemo. I got so upset that I cried. I have gotten more scared this past week and a half. And my hair is getting so thin.  Thanks for letting me vent. 

Bettie

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

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

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

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..!!!  Tongue Out

 

Ron

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Well just spent time with Snow White. And no Dwarfs to get in the way.  OK, home now, so I will expand..  I went for my phlebotomy today.. I was going to have a somewhat rookie nurse do the deed.  I think I scared her.. she fumbled... squirted blood all over but missed my white shirt..  Even though I asked he to try again, she decided to pass.  So I got Snow White (Sara) to do the deed.  Sara is awesome.. and yes very attractive as well.  I have never noticed major cleavage on Snow White before. Tongue Out 

Sorry to the women if I come across a bit "piggish" at times, but it really helps having a purdy nurse to distract me when she is sticking me with such a large needle...

Be Well All..!!

Ron

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

lol, Ron!  I'm glad you had big ta-ta's to take your mind off that big needle!  I don't think it's "piggish" in the least bit, in fact, it made me laugh out loud. 

 

Stay strong and keep up that fantastic attitude!

 

Sindy

Jojo61's picture
Jojo61
Posts: 446
Joined: Oct 2013

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

 

Stay strong!

 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

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....

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Another update..  OK, so last week was good for me overall.. Got to see a bunch of pals and a bunch of old bikes, all being properly ridden.  Me, well I was in my car... still can not ride, but hope that soon changes.   Then in the early evening went to a memorial for a well known pal.  His story is sad, as he should still be alive.  He had a heart attack a few years ago and never changed his life style.  Plus he did not have any medical insurance, even though he could afford it.. sigh...  He had a stroke and went to get it checked out, they put a stint in..  But he checked himself out right after, instead of staying for observation, etc... of course that was it for him.   His diet was mostly Mickey D's, and not enough true exercize.  You ALL know the story there... diet and exercize, plus getting to a Doctor before it is too late...  Enough said there....

OK, so yesterday evening I went for my Phlebotomy.. I had an appointment, but no "orders"... Ooops.. well that got quickly cleared up, the PA forgot that one detail.. no worry.. the deed got done... another new Nurse, well two new Nurses actually... easy peazy...  Then I got told that I was "free" for 6 weeks..!!  My test numbers were low enough for now..!!!  In 6 weeks more blood tests...  Actually, I will have more blood tests sooner, as it will be time for my scans and blood tests to see if the Inlyta is working.. hope it is...!  On my recent blood tests, several numbers improved, not just the RBC and the Hematocrit, my platelets as well.. nice..!!

I do laugh a bit at myself... looks like I have Planter Faciia in  my left foot/heel.  Plus the nasty skin peel... but...

Life is pretty good...!!

Be Well All..!!

Ron

foxhd's picture
foxhd
Posts: 2025
Joined: Oct 2011

Well at least only one of us is having difficulty with a hemmorroid. I'm laughing too. Just not as much as my wife.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Great fun... I have (for now) totally forgotten about the 'roids.."...   but just a minute ago the rest of my last blood test was posted on line.  A few numbers went up, most notably was the glucose at 110.  I had to laugh, as I did not know I was getting blood tests right after the Phlebotomy... so I had a (bad bad bad) chocolate muffin just before the needle.. and then they gave me a lot of orange juice and grape juice during the needling...  so those results do not surprize me..  But my ALT was way up as well, but still in range... hope that was diet related...  guess i better be careful of what I eat just before the blood testing...  I only ate the muffin due to the late hour of the phlebotomy.. not my normal diet,  but that was all they had other than worse foods...  Interesting...

Ron

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