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On Sprycel for 1 month PLT dropped to 16 is this normal?


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#1 Zu-ko

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Posted 11 March 2011 - 11:05 AM

I was diagnosised with CML July 2010. I was on Gleevec for 6 months then taken off because my WBC and PLT kept dropping. I was put on 100 mg Srycel last month but have recently been taken off 2 weeks ago because PLT were 29 , went  in yesterday and they have droppedto 16. My Dr says once my counts come up he will start me on 80 mg of Srycel. Has anyone else had this experience?



#2 JoshLee

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Posted 11 March 2011 - 12:06 PM

Hi,

     I've been on Tasigna for 5 weeks now and at the end of week 4 my plts dropped down to 81...I think 16 is pretty low? I am not a doctor, but my onc. has told me that below 50 may be dangerous. I am not trying to worry you, but maybe a platlet transfusion would be appropriate? I think it is normal for counts to drop pretty low at first and then start to slowly rebuild and I think I remeber reading that platelts can sometimes be the last to recover. This information I am giving you is basically bits and pieces of info I have picked up from reading other postings on this board. This is all new to me so I am by no means claiming to be knowledgeable...There are some pretty smart people on this board though that may be able to give you some really good concrete info. Good luck and best wishes for awesome counts in the future! -Josh



#3 Trey

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Posted 11 March 2011 - 12:30 PM

Not so much normal, but also not rare.  Women tend to have more of a problem with this.

First, the platelet number is likely 16,000 but the docs say 16 or 150 or whatever.  Normal range is 150,000 to 400,000.  But verify the 16,000 number just to be sure.

The CML drugs can certainly drive platelets low for some, especially during the first months or year, and also when changing drugs.  If 16,000 is the right number then you may want to ask your doc about a platelet transfusion.  It is certainly very low and must be watched closely.

Often the platelets are the last of the major blood count items to normalize.  And drug breaks can often help.



#4 Tedsey

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Posted 11 March 2011 - 07:02 PM

Dear Zu-ko,

If your platelets are 16,000, that is too low.  My platelets plummeted when I first started on Gleevec Nov 2009.  They went up and down, but remained below 50,000.  I have been on Sprycel since Sept. 2010.  My PLT got lower and stay between 20-30,000.  I have been OK.  Talk to your onc about signs of bleeding (severe headaches, bruising, cuts won't stop bleeding, black tarry stools, etc.).  Try not to get nervous.  Although it is not ideal, one can live with low PLT.  It is kind of like being a hemophiliac.  Although I am low, for regular nicks and cuts (including shaving my legs), I have healed normally.  Contact sports are out and try to avoid sky-diving, and drive carefully!  Like mentioned above, you can get a PLT transfusion if they go too low.

Take care,

Tedsey 



#5 scuba

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Posted 12 March 2011 - 09:15 AM

Zu-ko - I am following a similar path (started with Gleevec, switched to Sprycel with myelosuppression) and it seems your Dr. is also taking you off Sprycel and waiting for counts to return to near normal.

I was on 70 mg. of Sprycel and have been off it now for over six weeks.  My issue was not platelets, but Neutrophils.   What were your Neutrophil levels doing along with the platelets (ANC number)?

The strategy they have me on and I suspect similar to yours is to take you off Sprycel during low periods, wait for recovery and then restart you on a lower dose.  And keep doing this until you normalize.  They seem confident that will happen.

Keep us posted!


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"


#6 Zu-ko

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Posted 12 March 2011 - 01:05 PM

Michael- My Neutrophil number is1.0 and my platelets are 16,000. What is the ANC you refered to? I am not aware of this. I really appriciate all of the feed back from all of you. When I was first diagnosised in June of 2010, I thought I would just take a pill for the rest of my life and I would be fine. I am finding out this is not the case. Reading your posts has helped me to feel that I am not alone and also has helped educate me. I wish all of you and your families the very best.

With love, Denise



#7 cpsn0000

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Posted 12 March 2011 - 02:38 PM

I have the same problem..Currently been off tasigna for 4 weeks now and finally platelets are back up to 95,000 but wbc still down at 1.5....Will be going on Sprycel starting at 50mg tablets then go to 70mg tablets eventually....Suppression can sometime to get over, some have taking a year to get numbers to stop dropping...Once they start to become stable, and they will, its ok if they remain low because they will go up at the bad cells exit your bone marrow....Hang in there...many us are fighting this challenge but we shall all succeed....At least I hope so....



#8 scuba

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Posted 12 March 2011 - 02:50 PM

Denise -

ANC = Absolute Neutrophil Count.

On lab reports is often referred to as the ANC number or just plain Neutrophils (Neu).

ANC = 2.0 -8.0 is normal.  Between 1.0 and 2.0 is below normal but not an issue.  Below 1.0 and you are in a risky zone.  Below 0.5 is dangerous.

Neutrophils are very important first line of defense against bacteria.  Our salivary glands in our mouths pump out Neutrophils in very high numbers when we are healthy.  It is what keeps our mouth lining, tongue, gum lines healthy and free of sores and bacteria (mostly free - it's a constant battle).  When Neutrophils fall below 1.0, a typical first sign are mouth sores.  Below 0.5 and it can get bad.  What makes it dangerous is if bacteria gets into the blood and sepsis sets in.  That's when you get a fever.   I was told that if I get a fever with ANC < 0.5, I go to the hospital immediately.  Between 0.5 and 1.0 is a judgement call.

Now the Esonophils and Basophils also are a defense and can do much of the job of Neutrophils.  I suspect that is why I have not been sick even when my ANC fell below 0.1 (think about that ...).  My Esonophils and Basophils as well as the Lymphocyte system are all normal and have been normal (except at diagnosis).

So keep an eye on all of your blood counts especially your platelets since they are most affected in your case - and watch those Neutrophils. 

p.s.

One interesting point.  My wife is quite healthy with excellent blood.  Now this may cause chuckles in the Trey, RCT, PhilB department - but I did an experiment with my wife when my ANC was at bottom AND my mouth sores were getting bad. 

Lots of french kissing.  I mean - way over the top.  She gave me her Neutrophils.

Sure enough my mouth sores healed up fast.  Of course salt water, special mouth rinses probably helped, but I believe her Neutrophils came to the rescue.

And if they didn't - it was a great experiment


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"


#9 GerryL

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Posted 12 March 2011 - 08:15 PM

Hi Michael,

LOL.

Loved your french kissing experiment - and even if you weren't trading Neutrophils, you would have been feeling pretty good.

Gerry



#10 Tedsey

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Posted 13 March 2011 - 01:08 PM

Michael, don't get mad at me for this.  I am not trying to dispute what you say.  But this has been my experience with low ANC & mouth sores:

I have had mouth sores most of my life.  I have always been in excellent health until my CML dx.  Upon taking Sprycel, I noticed an increase in sores.  No one has warned me about sepsis.  I am not sure if there is tons of danger involved here.  What you write sounds a little scary.  I have been in contact with my onc and an excellent dentist.  Both do not seem overly concerned about my sores (my dentist just wants to relieve my discomfort).  And my ANC bounces from low to low-avg. and back again.  I am very thankful that my body has been able to handle the bugs I have had, including the horrible mouth sores (that last a month).  At this moment, I am sore-free and I am reveling in this freedom from pain.  But my ANC has not changed.  It is still relatively low.  I do not notice a relationship between low ANC and mouth sores.  I am not saying this is not true, but it has not been my experience.  As a matter of fact, when my ANC was at its lowest (before Sprycel), I did not get mouth sores.  Like I mentioned, I just noticed an increase with the change to Sprycel.

BTW, ANC 1.0 from what my onc says, is fine.  She even feels .5 to 1.0 is enough to fight off most bacteria.  So, I don't get the WBC stim shots until I get below .5.  I guess ANC is a judgement call or a comfort level with oncs.  My onc has been in practice for over 30 years.  Thank God, but I have been OK.  Now if I can kick this severe anemia, which has raised its ugly head again, I would be most elated.

All the best,

Tedsey



#11 hannibellemo

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Posted 13 March 2011 - 01:41 PM

Teds,

I found your recent post interesting because it has just been since January that I have started having mouth sores. When I started Sprycel my mucous membranes in my mouth were irritated but I did not have sores, per se. These are not large, they are painful, but not terrible, it's more that there are several at once! When my ANC was at its lowest - .9 when I was on Gleevec -  I didn't have these. Like you it has only been since I started Sprycel. I've had none on my tongue, only at the gum line and my ANC drifts between 1.8 - 2.1 - normal range for this area.

My personal belief is that this has more to do with Sprycel then it does our ANC level; French kissing test aside. (BTW, you da man, Michael!)

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#12 scuba

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Posted 13 March 2011 - 03:47 PM

Hi Tedsey,

I gather we're all different otherwise one drug would work the exactly the same for all of us.  I have never had mouth sores in my life (even so-called 'cold' sores).  In my case, I had my first painful 'not healing' sores when my ANC dropped below 0.5.  I have been below 0.5 for weeks and that was when the sores were at their worst.  As my ANC has climbed my sores have gone away.  In my reading (I'll try and locate the references), I noted the salivary glands put out a ton of Neutrophils as part of keeping the mouth moist and protected.  With my lower ANC, my mouth became very dry especially overnight.  It's better now.

My experiment with my wife (French kissing) was my attempt at 'mercy affection'.  It worked.  Whether there is a correlation with her Neutrophils, I suspect is a coincidence since I suspect her cells would be treated as invaders and attacked by my own.  But it was fun trying.

What are your other WBC's ?  (Basophils, Esonophils)  Are they in the normal range?


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"


#13 Tedsey

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Posted 13 March 2011 - 04:27 PM

I second what Pat said, you R da MAN Michael.  If it wasn't so painful to smooch, I would have my husband slip ME some of his neutrophils (poor guy)!  I think my esinophils and basophils have been normal.  But my doctor's website is down right now.  If I don't get back to you, they have been normal.  Yes, I believe we are all different and respond differently. That is why I couldn't dispute you.  Also, I have not had a dry mouth.

Pat, I have had tender membranes too.  Sometimes I get sore spots too that don't develop into full blown ulcers.  I get two kinds of sores (and, like you, often more than one at a time).  The sores in my past were mostly from injury (biting while eating or sleeping).  Now if I bite myself, they take longer to heal.  Also, I am getting sores that my dentist says do not come from injury.  They are usually in weird places like my tongue, under my tongue or where the membranes do not move (like gums).  I will see him again in 2 weeks.  I'll post if there is anything interesting to report.  My dentist is also in contact with my onc, so maybe the two of them can come up with a solution to this problem.  It is very hard to determine what is TKI related and what my just be "normal".  But if there are enough of us who complain about increased mouth sores with Sprycel, it is probably another "printable" side-effect.  BTW, my onc said she has not heard of increased mouth sores with Sprycel, but the drug is relatively new and less widely used.  So, we shall see what people report as oncs use it more for a 1st line of therapy.

Teds



#14 PhilB

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Posted 13 March 2011 - 05:51 PM

I wonder how many people on this site have carefully filed away that French kissing idea for future reference?  It could be a really useful thing to know in certain circumstances, as in: "Oh, hello Darling, you're home early!  I had this terribly sore mouth this morning from my CML and this kind person was just giving me a neutrophil transfusion...'



#15 simone4

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Posted 13 March 2011 - 06:33 PM

Phil, quit your teaching job and start writing for BBC. YOU'RE  GOOD!

Simone



#16 hannibellemo

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Posted 14 March 2011 - 06:40 AM

Michael,

This is what I found interesting because all of my counts (including differentials) except WBC, which continues slightly below normal, are in the normal range for this area. I say "for this area" because evidently "normal" range is determined by locality.

Teds,

My onc made mention of the fact that I didn't have tongue sores at the time and he questioned me if I had had any previously. I wasn't thinking quickly enough to ask him, since I didn't have any, why he mentioned those in particular. I will ask my local onc when I see him on the 25th.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#17 hannibellemo

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Posted 14 March 2011 - 07:35 PM

Dear Zu-ko,

My apologies we stepped all over your post. Please don't let us get away with that in the future - tell us to get our own!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#18 Guest_billronm_*

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Posted 14 March 2011 - 09:02 PM

Dear Michael,

I can see you experimenting, in different ways. But I bet you're wife is gonna kill you if she ever reads this post! I bet you get a lot of replys from this one. My onc told me 2 or 3 glasses of wine is good for you so I follow doctors orders. I like your method better. But how can I wake him up? He's retired but he still gets up at 4:00 am.

He usually conks out right after dinner around 6:pm. He just can't sit still sometimes he shovels the snow off the roof,2 times a day,even in the summer. He just goes and goes so when he falls asleep that is the end of him. So I figure if I tried what you did he'd think I was the dog and throw me on the floor. For my own safety I will Keep to my wine.      I get the mouth sores to but I stick to the wine I'ts much safer.            LOL Billie                         



#19 Marnie

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Posted 14 March 2011 - 10:05 PM

Well, dang!!  I was hoping for a little bit of French kissing to pass the time, but husband won't touch me with a 10-foot pole.  He was sick for a week, and then, with absolutely no physical contact, in fact we've been seriously trying to avoid one another. . .he passed it on to me.  Now I get no affection.  Maybe its the snotty nose, sore throat, and nasty disposition.



#20 Zu-ko

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Posted 14 March 2011 - 11:41 PM

Pat

Please, no apologies. I have throughly enjoyed reading all the comments. My husband is trying to convince me that it takes more then one night of french kissing to heal my mouth sores. I don't know that it is healing them, but it sure has put a spark in our marriage!

Denise






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