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#1 idahobeavers

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Posted 24 August 2012 - 08:04 PM

my platlet count is down to 40 and my doc has me off sprycel for at least one week. she is hoping they will climb to at least 50 by next friday. ok what i am wondering

1 what should i watch for?

2 when i restart will i get all those nice side effects again

3 i am 100 now and they are thinking about restarting at 80

ok everybody please give me some answers and alot of hope.

i am running outta happy thoughts,i am so tired i cant do anything,i am dizzy and i feel like i got ran over by a steam roller folled by a mack truck loaded with heavy metal

i just need to some insight here like u give others. please help me



#2 Happycat

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Posted 24 August 2012 - 08:13 PM

I will defer to Tedsey as she is the Queen of Low Platelets.

However, I must say I am shocked at how doctors so blithely treat the serious fatigue that their patients complain about. My sister could barely get out of her car and walk into the emergency room when she was anemic. Her iron levels were so low, my MIL said she was at risk for a heart attack (MIL is a nurse). A colleague at work was so anemic from fibroids and heavy periods, she had some weird sort of seizure at work.  She was so bad, I drove her home and made her call her husband to take her to the doctor.

I just don't get why doctors don't do a little more for it.

Traci



#3 idahobeavers

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Posted 24 August 2012 - 08:38 PM

i dont know why either i have been complaining for a while but was told just take your sprycel and come back in 3 mos



#4 Trey

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Posted 25 August 2012 - 08:38 AM

That sounds like the right approach.  A lower dosage might help your platelets recover a bit.



#5 pamsouth

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Posted 25 August 2012 - 06:10 PM

sarah, it behoves me why doctors don't pay more attention to side effects and low count. 

I went on Gleevec in 2005 and my white cells got down to, I think it was 1.5 or 2.5, can't remember, I would have to pull the labs. I just remember the White cells count being very low and getting very sick and going to the ER .   I also remember the oncology coming to the hopsital,  like she was frightened herself. I remember her saying "I will never let that happen again." it scared her.   I think I might have been one of her few CML patients if not the first.  Later she got braver wanting me to double the dose, then last year wanting me to change drugs.  Anyhow I have since changed oncology.  But I sort of get the same drift, just reach PCRU at whatever the cost then deal with the other stuff as it comes.  Then take a drug holiday.  I told my present onc why can't you start with a softer take off and a gentler landing.  After all if you have to go off TKI'S, then go on a lower dose, and then your leukemia count usually come back up and level out anyhow, so why, why, take the risk of CBC counts being low or serious side effects, that sometimes come a bit later.  Onc said well we could switch you to Sprycel and start on 50mg, then go up and see how far you can go, what ever that means.  He lost me at "then go up, increase dosage."  But that generally seems to be the approach of most onc, according to a lot of the post I read.

I hear and feel your frustration.  As I can remember thinking is any body listening, seem like doc just blow the side effect away.  It makes it even more frustrating when you think don't they get it, or care.  I don't know?  I think a lot of things our theory and ever body is different and instead of the standard dose, it ought to start out lower and tweak the dose according to the individual, not a standard guideline for the whole wide world.

Best of luck,  PamSouth


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#6 idahobeavers

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Posted 25 August 2012 - 11:12 PM

what was your symptoms that sent you to the er.?



#7 pamsouth

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Posted 26 August 2012 - 12:40 AM

Sarah,

if you are asking me "what symptoms sent me to the ER?"

I had a fever and was vomiting, also I remember my blood pressure being extremely low.  I remember, at my last onc visit, she had scared me a little, as she looked at my labs and noted how low my white counts were on the CBC, she said if you so much as sneeze call me.  I think it really scared her, which scared me too.  I was in the hospital 3 days of IV antibiotics.  She immediately took me off of Gleevec. I sometimes wonder if I hadn't not gotten sick how low she would have let my white cell get before telling me to stop Gleevec??   It's been a long time ago but I think it took quite some time before my white counts starting coming back up.  Because I remember saying, after a few days of being off of Gleevec,  what if the white counts don't come back up?  Doc looked sort of confused or worried and said I don't know, but I will never do this again.  Like I said, I think later, she changed her mind, as she wanted me to go on 800 mg of Gleevec, instead of 400mg.  Now if my white counts went that low on 400mg why in the world would I want to go on 800mg.  Also the belief was, that side effects were no worse on 800 mg then on 400mg.  I never did buy into that.

PamSouth


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#8 idahobeavers

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Posted 26 August 2012 - 08:01 AM

sometimes they make you feel like your a experiment!i had a really good onc in idaho. i was on tasigna 400 and it was also wiping me out, i actually quit taking it for a week. went to my onc and he said well your counts are looking better.i laughed he said whats so funny i told him i quit taking it until i felt better,he looked at me and stated well its your body and your the only one that knows it. as long as i was on tasigna when i started to not feel quite right i would stop for a day or two. my counts looked good. but then i got another onc and she decided since the tasigna was doing ok lets switch to sprycel!!! i have been having problems ever since and now my wbc rose a little but my plats are falling. my onc didnt seemed at least concerned about it. but i am also seeing a specialist at ohsu and i think she wants to save face so she had me stop for a week. i just wish she would transfuse me and get it over with. sometimes i am so tired i dont even want to get outta my chair and go pee.i have a headache,feel my heart in my throat and just feel like a semi and a stem roller took turns running me over. sometimes i just feel like throwing in the towel.



#9 Sneezy12

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Posted 26 August 2012 - 10:03 AM

What does your CML Specialist say at OHSU? Regards, Frank



#10 idahobeavers

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Posted 26 August 2012 - 10:47 AM

i am going to her on the 13th for blood work and bmb. she sgreed they r too low and i should be off meds for awhile.i go back to my onc on this coming friday for blood work and appt.hope to know more then. all i know right now is this sucks



#11 pamsouth

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Posted 26 August 2012 - 03:47 PM

Sarah,

Regarding >>"i just wish she would transfuse me and get it over with.<<"

That is exactly (or one of the reasons) why I don't want my counts to get that low. 

Of course I am not a doctor, I think we all keep saying that, because everyone is different and what I think or want in my life, may not be right for you.   But it seems to me sometimes I am just trading one problem for a more complicated problem.  I think all those transfusions and pills and shots have there own risk.  Beside that most of the time when you bottom out, you go off your TKI's, and go on a lower dose and the PH+ usually comes up somewhere and stabilizing.

They used to tell me if I would increase from 400mg and go on 800mg of Gleevec I would get rid of more CML, and live longer.   Well of course I would get rid of more CML, that is a no brainer, but what is the cost.  Live longer I don't know about that.

You said >>"sometimes they make you feel like your a experiment! "<<  Well of course we are.  These drugs are only studied for a few short years and that would be a small number of patients in the study.    However I am ever so mindful that when I was diagnosed in 2005 that Gleevec was really the only thing available, because according to others, Gleevec was so much better then what was out before Gleevec. However in 2005 there were still some trials going on, One of the trials in my neck of the woods was 800mg vs 400mg of Gleevec.  I listened to the two hour sales pitch and read thru a stack of papers and opted out. 

Anyhow hoping your counts will come up on their own without a transfusion, maybe if you are off the TKI for awhile, but if that is the only way, you got to do what you got to do.

Oh, I am also reminded there are others that are more knowledgeable then me, and would disagree totally with my theory or experiences.

But then, when my son was in a leading research hospital, in ICU, on full life support for 30 days, in 2011. There were a lot of specialist that didn't  even agree within their own groups, let alone with other groups of specialist.  You would have several groups of different specialist come in everyday.  It was always (well almost always) the primary doctors who called the final shots, but you would hear them disagree or get mad, when a primary doctor would changed the orders, and sometimes the orders would be switched back, to that particular specialist, after another consultation.  So there you go.  I kept a daily journal on Caring Bridge.  I took my laptop to the hospital everyday and if I didn't understand something they were telling me, I would search  it on the internet, and sometimes the doc would draw me pictures. I do believe a lot of the test they did were an experiment, but they did save his life, (but was it necessary to put him thru all that, I will never know).  I think in the end, as his files got so thick, some of the doctors would even ask me questions, as sometimes the groups change on the week ends, or would only seem him a couple of weeks or a few days, then the doctors would maybe go somewhere else.  Mistakes and errors are even made at leading hospital.  Every one is different and not even the doc always know the best path, sort of trial and error or research.  I'm just saying sometimes I think I need to go with my gut, even over the doctors call.  That is not a popular thing to say.  But it is my life, and I am the one that has to live it everyday!!

Of course CML is much different then what he had (legionaries among other things).  But I think we are all part of research, looking for a cure, or perhaps better put a "safer, more effective/lower response TKI'S, with less toxic side effects".

PamSotuh


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#12 Tedsey

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Posted 26 August 2012 - 07:54 PM

Hi Sarah,

It's the Queen of Low Platelets (wish I were the Queen of England though, she is good and old and healthy).  The signs you need to watch for are:

  • Excessive bleeding from cuts or scrapes (and probably heavy menstruation for some).
  • Black, tarry stools
  • Red blood in stools
  • Easy bruising
  • Petichiae (red spots under skin)
  • Abdominal pain
  • Severe headaches

These are the most common signs of internal bleeding due to low PLT.  They don't all have to be present.  My PLT for the last 2.9 years have waffled from 20,000 to 70,000.  When I was first dx, my PLT dipped to 80,000 right away.  The onc freaked out and took me off Gleevec twice in 3 months I started.  It did not help.  I had other issues too, so it was decided that I stay on Gleevec no matter what.  Nothing was done for the low PLT because I did not show any signs of bleeding.  It is possible to to be given a PLT transfusion if needed or shots to help your body make more.

I have learned that platelets are queer little things.  You can have a really high PLT count and they don't do a very good job of helping you to clot, or you can have a normal amount and the same issue.  You can have low PLT and clot normally (or not).  That has been my issue, (even at 20,000, but I never had any treatment for it).  Nevertheless, since PLT counts fluctuate all day, like all blood counts do, sometimes I can tell when mine are not working well.  Recently, I have been bitten 100 or more times from mosquitoes (not kidding, and yes, I use insect repellent; DEET doesn't work, so I am on the quest for better).  Anyway, I have been sprouting long oozing leaks from the scabs I scratch.  I also have a huge bloody splotch near my collar bone and petichiae all over my chest (but if my memory serves me correctly, I have always gotten petichiae--little red to medium sized red flecks-- on my neck and chest, just not big splotches).  However, I wore a huge and heavy backpack for 6 hours at a children's museum, and wandered a Chicago tourist trap (Navy Pier) last Thursday with a 35 lb. 3 yr old who screamed and cried if I didn't carry her .  So, if you notice anything you think is awry, just go over what may have caused the bleeding.  It may be something that would for any person without CML or blood issues, (i.e. insanely heavy backpack, heavy toddler, etc.).  Nevertheless, I have my period now and it is mild.  I split my knee open the other day by walking into the corner of a sharp wooden drawer (thought I could clear it between it and the dishwasher, but the klutz I am...).  Anyway, it clotted immediately.  So, overall, I would say the quality of my PLT are mostly good.  These are the kinds of things I always watch for.  If things were to change for the worst, I would call my hematologist.

Like with low WBC and HGB, PLT are a judgement call with oncs.  Some have higher thresholds than others before they want to intervene.  Most people cannot hold off bleeding at 20K or below.  Some oncs feel uncomfortable with ANC below 1.0 and some like to wait and see what happens.  If things seem to be working at low levels, then there is no need to do anything.  I would just advise to be careful, (like, no extreme sports or maybe you should use an electric razor).  In time, you will begin to understand your body and its flux.  But you might have an onc intervene at some point and suggest some plan of action.  You could always write again and play it against us to see what we experienced. 

Now, since I have not read all the posts, I will stop here.  I think someone mentioned issues with anemia.  I just so happen to have major influence in that kingdom (speaking of being a queen of something).  I have had dangerously low HGB in the past and dealt with it for quite a while.

BTW, I am now on Sprycel.  My PLT have always been low since starting a TKI.  They have never really recovered.  Most people have their PLT return to normal.

But I am still here, apparently stable, and seemingly clotting well.

Please take care.  Try not to get too worked up about this.  It can really scare you.  My last onc put me through the wringer.  Like I said, there are PLT transfusions and shots.  As a matter of fact, there are shots and transfusions for almost anything. 

Good luck and good health,

Tedsey



#13 idahobeavers

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Posted 26 August 2012 - 10:36 PM

thank you for your imput. i do bleed excessivly from the smallest scratch. my arms are covered in bruises and the red splotches. i have a headache constantly and i am so tired i might as well just stay in bed . i take 3 to 4 naps a day and still sleep all night . i feel about as worthless as tits on a boar. also have adomen pain.blurry vision the only thing i dont have is the bloody or tarry bowels



#14 pamsouth

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Posted 26 August 2012 - 10:42 PM

Dang Sarah, 

You sound like you are in constant misery.

Maybe you should see another doctor.  Something needs to give.

Will be thinking and praying for you.

PamSouth


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#15 idahobeavers

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Posted 26 August 2012 - 11:06 PM

thats why i am going to ohsu in portland oregon. and on friday i see the oncs pa she seems to care more about me than the cancer onc. i know i smoke and i know its bad and i know i need to quit. but damn thats all she harps on all the time i see her. i know it will kill me or can give me another cancer, but to tell the truth right now i could really care less



#16 idahobeavers

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Posted 18 September 2012 - 09:48 AM

ok went to ohsu had the bmb. now waiting for the results.she is still talking bmt if my mds rears its head any further.i took a 3 week break from 100 sprycel and restarted at 80.hoping my counts like it lol.she does not forsee a bmt very soon. but if i have to start having transfusions and my counts dont improve we will talk more about one. also have to do bmb every 3 months.



#17 scuba

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Posted 18 September 2012 - 09:58 AM

Sarah - I am take only 20mg Sprycel and am getting closer to PCR - undetected (0.009). I had a similar problem to you and dose reduction was prescribed in order to find the "right" level. On 20mg. my FISH first went to zero and now my PCR has consistently dropped (apart from a blip here and there).

You have a long way to go in terms of experimenting with dose before making the big decision. Just remember that 20mg. can be very effective. Discuss it with your Oncologist. Also - one BIG benefit of low dose Sprycel (i.e. 20mg. ) is no side affects.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#18 idahobeavers

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Posted 18 September 2012 - 10:49 PM

they only lowered me to 80 but i will ask if i can go lower. hate the side effects



#19 redonkalous

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Posted 21 September 2012 - 01:08 PM

Thanks for this. My onc recommended me to get BMT due to my low PLT of 37 while I was on Tasigna.  I had blood in my stool on and  off even before I was diagnosed.  So me getting BMT because of low platelets should be the last option or not even an option?  Thanks.






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