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#1 pammartin

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Posted 26 October 2011 - 01:26 PM

Apparently I am a walking time bomb.  I just received latest blood work.  White count continues to drop, it is good, but platelets have went up another 200,000.  I am currently at 1,800,000.  This is a walking stroke possibility, I have been on the full strength aspirin since August.

The platelet issue is concerning me, when local doctor found out I was taking Sprycel, (I was ill last week during appointment, they thought I had stopped taking it) they cut me off and said they were calling Pittsburgh for consult.

I know I have asked this question before, but does anyone have any further ideas on the platelets, I am frightened, it's that simple.  Thanks everyone.

Pam



#2 Trey

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Posted 26 October 2011 - 02:01 PM

The platelets will bounce around, so it is not unusual for them to rise and fall.  They could be back down 200K the next day.  In the meantime, drinking plenty of water, aspirin, and no exertion are generally good ideas.



#3 pammartin

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Posted 26 October 2011 - 02:18 PM

Trey,

Thanks, I immediately caught the no exertion advice.  I know this will probably sound odd, but we just bought an old farmhouse and yesterday (yeah I was feeling very good) I shoveled about 2 ton of 1B limestone.  I worked for several hours and felt good about it, good about being productive, and good because I could do it.  So little exercise then?  I cut back on the water, it was causing problems with the Sprycel=diarrhea, I can live with that if water helps the platelets.

Thanks, I admit to panic mode, I know that doesn't help either, just hard to contain.

Pam



#4 pammartin

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Posted 26 October 2011 - 04:03 PM

They are increasing the Sprycel to 150 a day, here come the railroad spikes in my head again, and I am to take 2000 mg of hydrea a day.  I am to redo bloodwork on Friday, office said white count may bottom out.  Top off the day I found a deer tick embedded in my stomach, so it is a course of meds for possible Lyme Disease.  Geez, this is not been my day!



#5 jjg

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Posted 26 October 2011 - 04:56 PM

Me thinks you should go to bed as early as possible...before anything else happens :-)

Good luck with all of that!


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#6 Trey

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Posted 26 October 2011 - 05:15 PM

The more water, the thinner the blood.  If you had been cutting back on water, that alone could cause platelet counts to rise since it is measured per quantity of blood fluid.

I often tell people to drink only normal amounts of water to help with diarrhea, but your case requires a high level of hydration to thin out the blood.

Usually hydrea is not given along with Sprycel or other TKI drugs.  That is a strong cocktail.



#7 pammartin

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Posted 26 October 2011 - 06:38 PM

I had a call a short time ago, if the platelets rise to 2,000,000 on Friday, I will immediately be sent to West Penn in Pittsburgh to undergo a Plateletpheresis.  Because this is new to me, I am not familiar with many of these terms, but I did ask questions and look this up, although it is not a fix, it is a solution until they try to get platelets headed down.

Today just does not seem to be my day. Tomorrow will be better.

Pam



#8 Marnie

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Posted 26 October 2011 - 07:35 PM

Pam,

Good luck with everything.  Make sure they are monitoring your white blood count.  As Trey said, both Sprycel and Hydroxy aren't usually taken together.  I would think the combination would make your white cells plummet quickly.  Be careful!

Marnie



#9 Trey

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Posted 26 October 2011 - 08:11 PM

They will attempt to suck the platelets out (actually the platelet pre-cursors, the megakaryocyte cells) and leave the other cells.  You can watch as your blood flows out of your body and back in.  If you like that sort of thing.  Sort of like kidney dialysis for the blood cells.  If they do that, I would suggest you ask the doc to NOT give you hydrea.



#10 pammartin

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Posted 26 October 2011 - 08:20 PM

Trey,

Please explain further, I have taken 1000 mg of hydrea this eve, am to take another 1000 mg in morn, and every 12 hours after, along with the Sprycel.  I hate to be second guessing the professionals I am to trust, but information from them has not been forthcoming and vague.  I need to have some kind of faith or understanding of these people before Friday, there is a good chance I may be heading to Pittsburgh for the procedure, and there is no time to consider the other possibilities I have been looking into.

Thank you

Pam



#11 Guest_billronm_*

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Posted 26 October 2011 - 08:56 PM

Hi Pam, Hi everybody,

What is this pick on Pam month? I don't understand any of this stuff. I wish I had something to say to cheer you up but you might laugh so hard you'll split a gut and have another problem to deal with. I don't have the diarrhea problem on Sprycel like I  did with Gleevac. I took immodium ad. And I drank lots of water when I had a bad bout.I also drink pediolite when it gets really bad. But you can't take anything without checking with your onc. It sounds like the best thing for you right now is water. And rest. Keep the duct tape away from you you've been reading up on cml and you're getting to know what some of your results should get to be. All I know from being on this site is that numbers jump all over the place when you first start on tki's. You're always saying you have a BIG problem with using sarcasm and your pretty much a bigmouth. Now is the time to use those assets. If a doc wants to give you something or if You're not comfortable with anything they say or do speak up and make them explain everything in detail. And always carry a small notebook with you scribble in it or write dirty jokes whatever but when they see notebooks they figure you're taking notes so they'll be extra cautious with you. I'm a wuss I wish I was a little more aggressive.

I wish Trey could go to the docs with you. I keep saying I trust his and everybody elses judgement on this site more than the docs we go see. Ha Ha I got to quote you first as a big mouth so nobody can call me big mouth bass Billie.  hehe     Take care and try to stay as calm as you can.   Sincerely Billie                              



#12 pammartin

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Posted 26 October 2011 - 09:10 PM

Thanks Billie,

I think it is pick on me week.  And peeling a creature off my mid section was the last straw.  Ticks are gross, no other explanation given.  I do have a big mouth and am using it, but like you, I trust Trey's input, and when he says the hydrea should be gone, I want to know why and how to approach these people.  This just sucks, I worked outside all day yesterday, was a great day, today I wouldn't five two cents for me, half nerves, half really don't feel well. 

I will/am trying the water, anything that can keep the blood clots from possibly forming is a plus, sitting in a chair where they pull the blood from you and then put it back in, not so much.  I would watch it, just in case they tried to bypass some and keep it, or they return green blood (I don't want pointy ears like Spock) instead of my red kind.

Presently I am downing water on a regular bases, we will not talk about the excess fluid and sneezing or coughing.  That, is yet another story.

Thanks Billie,   I do have a large mouth, tonight walking out the door to collect yet another med from the pharmacy, I was walking out the door, I could have sworn my husband passed gas, I turned to him and said, "did you just crap your pants?"  I was just wondering, didn't really matter, I was leaving anyway, he became all huffy because I said it too loud while walking out the door.  Heaven forbid the neighbors find out he does have movements, just like the rest of us!  He is speaking to me though, he is worried, as we all are, so the caustic humor tends to lesson the worried reality.

I missed you Billie, you are my immediate pick  me up.  figuritivley, not litterally of course, most likely you could not get me more than a few inches off the ground.



#13 Susan61

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Posted 26 October 2011 - 09:49 PM

Hi:  I have a platelet count of 126 all the time. It went up to 168 a few months ago, and then this month back down to 126. I should play that number, it might be a winner.  I am never thirsty, and everyone is telling me that I do not drink enough water.  Truthfully I only drink water in the morning with my Gleevec, and then maybe sugarless ice tea.  When I get my blood drawn they tell me I should drink more water because I am dehydrated.  If I start drinking all this water, would it make my platelets even lower?  I also stay away from the liquids when I have to go out because of the overactive bladder issue.  I am a heavy coffee drinker,and I  know that can cause Dehydration.  I am trying to cut back on it, and I hate Decaffeinated.  I want the real thing especially in the morning.

This posting by Pam made me question it.

Susan



#14 Guest_billronm_*

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Posted 27 October 2011 - 12:20 AM

Dear Trey,

I have been trying to get a private message to you but I don't know how I don't want to post it all over the board. Please help me Billie



#15 Guest_billronm_*

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Posted 27 October 2011 - 04:30 PM

Hi Pam,

   Oboy this probably seems like the longest day of your life. I wish I could say something to calm you down. I hate all the waiting,we have to live with the cml then they scare the daylights out of you and still make you wait. I know you are going to be fine it's a matter of getting back on the right path. Think of it this way they know what they are dealing with and what to do about it. Are you really going to watch them suck your blood out and then put it back in? I saw my colon last week now every time I go to the bathroom I envision that sight not pretty. I watch a lot of sci-fi shows so I get really paronoid when some unknown procedure is being done on me. With my health hystory which is really wierd I think they are experimenting on me. I can see me waking up with 3 heads and doc says oh don't worry it's just a side effect it will go away in a couple days. I will have 2 questions #1 will it leave a scar &#2 can I pick the one I want with the least amount of wrinkles? I saw a commercial the other day for wrinkle cream now they are calling the wrinkles around our mouths parenthesis but if we buy thier cream the parenthesis will go away. I saw mine so now I walk around all day puckering my lips. I'll catch you later. Billie



#16 pammartin

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Posted 27 October 2011 - 05:34 PM

Hi Billie,

As always you made me laugh. The day is not too long so far, and I plan on being at hospital at 8, when they open.  Had a few mini meltdowns, but then I move on.  Sucks to be human and experience uncontrollable emotions.  There is to be a 'stat' on the blood work, so if it is to Pitt I have to head, it will not be half day waiting.  I need wrinkle cream!  I just am not willing to pay at least $65 for a bottle that is so small you need an eye dropper to apply.  

Just think of it this way, if you grow two more heads, you will be three times as helpful and amusing.  I think after you reach a certain age a scar is imminent, there is something to be said about youthful skin and elasticity.

I am concerning with the white count bottoming out, a few fellow supporters have noted this possibility also.  What I know is it went from 26, to 16, and with 8 days on the Sprycel, it is at 8.  There is not much room for movement before it gets too low.

Another thing they have me monitoring is blood pressure.  When this first started, it was high, really high, then moved back down to my usual, which is low compared to others.  I have a wrist cuff, it usually reads higher on one of those.  Today it is hovering right around 110/70.  Nothing to be too concerned about yet, but this afternoon it was 89/55, I slept through from noonish to three if memory serves, too tired to get off the couch.

Thanks for the reminder, we know what I have, and what meds should work, it is finding the correct dosage appropriate for me.  May be higher or lower than the next person, finding the dosage is what takes time.

I spent a few unproductive times today thinking 'what if' but it is unproductive and annoying, Instead I am waiting for tomorrow, and if I have to do the procedure at least it will reduce the possibility of having a stroke because of the platelets.  I think that is just as/more frightening than the CML right now.

Be careful puckering your lips, if you keep doing that, you will end up with more wrinkles, just in different areas!

Pam






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