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is this normal?


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#1 grannyd

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Posted 06 April 2011 - 01:25 PM

hi, just got back from my bi-weekly bw, just wanted to know if it is normal for wbc to keep bouncing between 5 & 7? I have been on tasigna for 10 weeks now, still new to this, dr. said everything is fine,all  numbers are within normal range, just worried. I go back to Cleveland Clinic the 19th. I will be on tasigna for 3 months then. I haven't had anything but

bw done since bmb & diagnosis. What will be my next step, I hate to sound dumb, but I am when it comes to all of this!! Still am stressed, worried, & anxious.Sorry to ramble on but just need to know what to expect!!! Thanks for listening, prayers to all, grannyd



#2 WoofWoof

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Posted 06 April 2011 - 02:25 PM

Yes it is normal to be stressed,worried and anxious. From what I know and have experienced, your counts are just fine and can change due to medication and stress. I also am on Tasigna and have not had a BMB since my Dx. over three years ago. If your Dr. said everything is fine then just trust him/her and continue to worry if you wish. None of us chose to be in this group but let's make the best of it and give thanks for modern medicine.


I have cancer but it doesn't have me


#3 CallMeLucky

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Posted 06 April 2011 - 02:28 PM

Assuming they are following standard treatment guidelines, when you go back for your 3 month visit they should do a blood draw for a CBC, FISH, and PCR.  You should not need a bone marrow aspiration at 3 months, they should be doing all the tests on peripheral blood.  The doctor will likely examine you, ask a few questions about how you are feeling and any side effects you are experiencing.  You will most likely have the results of the CBC when you see the doctor.  The results of the FISH/PCR will likely take up to two weeks to come back.

As far as the bouncing between 5 and 7, your doctor said it is okay, and from what I have learned this is not a problem.  In fact, so far it shows that you are not getting myelosuppression which is really good.  Some people have a hard time with low counts on TKI drugs, so the fact that your counts are hanging in there (in the normal range) should be a good thing in the long run.

And I don't think you sound dumb at all.  This is hard stuff to keep track of plus the fact it is scary makes it harder to retain all this stuff.  I'm still figuring it out.  Keep track of your results in a folder and write down questions and side effects for when you go to 3 month appointment so you don't forget anything.  If possible have someone else go with you to write down the responses you get.

Best of luck....


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#4 grannyd

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Posted 06 April 2011 - 04:00 PM

Thank you so much for answering my question!!! My husband will be driving me to Cleveland so he will be with me, as he has before. I don't want to be anxious, worried, or stressed & I try so hard not to be, just my nature I guess. Also, I am so thankful for the medicine, as I am sure anyone with this is.I read this board every day and am also thankful for all the most sincere people who post on this board!!! thank you again, prayers to all, grannyd



#5 Tedsey

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Posted 06 April 2011 - 04:50 PM

Dear grannyd,

My CBCs have always fluctuated.  And I had to get them daily at one point.  After some time, there will be a trend of sorts (the cancer center I go to offers to graph the CBCs online).  For example, my PLT stay between 20,000 and 30,000 on average, but will sometimes pop up to 50,000.  Like the others mentioned, your WBC are still within normal range.  And I would venture a guess that most healthy people fluctuate throughout the day, week, month, etc. too.  Again, there should be a trend over time as your body adjusts to the TKI.

I wish you all the best.  Hope you are feeling well.  It has been a year and a half for me, and I still feel like a beginner.  I consider this a close cousin to "rocket science".  If a person persists, it probably will take years just to get a handle!  But a lot can be learned in a short time.  Par for the course, if you want to play.  Some people prefer not to know very much.  I am definitely NOT one of those people.  Hats off to you for wanting to understand.

Tedsey



#6 Susan61

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Posted 06 April 2011 - 05:08 PM

My prayers to you too Granny.  I think I am the Queen of Worry.  I worry about everything, until I think I have every disease there is.  I have so many health problems, so I guess I always expect a new one to pop up.  I am trying to get better with it.  I think when you go on a new drug, and your body is trying to adjust to it that your counts will go up and down at first.  I can remember mine did when I first went on Gleevec.  Then they stabilized just fine.

I will pray you do good when you go to Cleveland.  Your probably just fine.



#7 LoriM58

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Posted 06 April 2011 - 05:38 PM

Granny,    thanks for asking the questions, I was wondering the same!  Sorry I can't answer your questions, but wanted to sneak on here and say thanks!!

I was dx on Feb 4th, but didnt start Gleevec until March 3rd.  At my appt this past Mon, my onc said I had reached hematological remission (5 wks on Gleevec).   (anything with the word remission makes me sooooo happy!!)    BUT I was wondering what this REALLY means.   My onc said goal was to be where I am now in 3 mos.   I thank God I arrived early, but not sure if I should be as excited as I am.   I go back in 3 wks for bw to make sure numbers don't go too low.   Taking 1 day at a time and letting God carry the worries of tomorrow.  

I don't have any other health issues and have only experienced fatigue to any extent since starting Gleevec.  (other side effects of minor muscle cramping, insomnia and swelling, but tolerable.)  

Take care and want to thank all of the helpful, friendly people on this site!!

Lori



#8 Susan61

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Posted 06 April 2011 - 05:54 PM

Hi Lori:  Your doing good.  Reaching CCR Complete Cytogentic Remission is where all your numbers have come down to normal.  Thats the first step when you start on your TKI.  It took me longer.  I did not get there in 3months.  I am on Gleevec for 10 years now, and the side effects just do not seem to leave.

They get better where you learn to just live with them.  Everyone is different in how or what symptoms they get.

     I just Thank God everytime I see my numbers are good.  If there is something you have a question about, just post it.  We have some great people on here who are always ready to help.  I do not remember seeing your name before,so if this is your first posting on here then welcome and please keep coming back.

Sometimes I do not get on here for a few days, and I miss things.

Susan 61



#9 LoriM58

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Posted 06 April 2011 - 06:03 PM

Thank you for your reassuring words and warm welcome Susan.  Have been a "reader" for a while and have only posted a few times.   ALOT of great info on here. 

Onc wanted to give me script for sleeping pills because I am not getting good rest at nite.   told her I wanted to wait until weather broke and I can get outside.  (live alone and have LOTS of flower beds and yard to take care of)   Am thinking the physical exhaustion may help me sleep more sound.   Don't want to take anything more than is absolutely necessary.  

will post questions as they come and hopefully someday I will be able to give someone else encouragement and insight because of my journey.

God bless,

Lori



#10 Susan61

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Posted 06 April 2011 - 06:29 PM

Lori:  I agree with not taking anything else if you can help it.  I have terrible insomnia, and I find if I have a busy day it helps me to sleep better at night.

Once you get out to do things, you will probably feel more tired.  Some nights I am up and down, and tossing and turning.  Then I go into a deep sleep in early morning hours and end up oversleeping.  I hate when that happens too.  You just have to find the right way so you sleep when  you should.  I have to get out and clean leaves that are all around my house, but our weather has been so weird past few weeks.   That should make us tired.



#11 LoriM58

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Posted 06 April 2011 - 06:33 PM

weird weather?   we had snow showers today in NE PA!!   Temp is only 36º and I think that sunshine will certainly help too!! 



#12 GerryL

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Posted 06 April 2011 - 07:12 PM

Hi Lori,

"my onc said I had reached hematological remission (5 wks on Gleevec)" CHR - this means that your blood work is looking normal.

The next step will be CCyR (Complete Cytogenetic Response).

You're doing well.

Gerry



#13 Susan61

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Posted 06 April 2011 - 10:11 PM

Gerry:  I am glad you corrected my response.  I did mean to say CHR before the CCYR, but either way I agree that Lorie is doing good.

My mind has not been where it should be lately.  Lorie and I were just talking about how neither one of us is getting quality sleep.

Hope your doing well also.

Susan 61



#14 GerryL

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Posted 07 April 2011 - 12:13 AM

That's okay Susan, you've got a lot on your plate at the moment. Lori is doing well - I just didn't want her too confused about the acronyms used. Hopefully your current health issues get better for you soon.



#15 grannyd

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Posted 07 April 2011 - 08:41 AM

Thank you all for your KIND words to this newbeeeeeeee!!! "Lucky", thank you, I had no idea what mylosuppression was!!! I have read it here before, now I know!!! Tedsey, love your openess about all you are going thru, Susan 61, so glad to hear from you, knowing you have been going thru this for quite some time, all on this board seem to me like such caring people, especially with all our knowledge!!!!! and willing to share your expierences. I know my family is here for me, always interested & concerened, but they don't understand  this any more than I do. I have been on lexapro for quite sometime for anxiety & depression, now ativan thrown in, so to let everyone know I have been depressed & anxious before this DX, it just seems to add to it. Living in the OHIO VALLEY with all the dark days of winter sure doesn't help, waiting for warmer weather & hope it helps! Hope this finds everyone doing well, if just for today, one day at a time. Prayers to all, grannyd



#16 Susan61

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Posted 07 April 2011 - 04:02 PM

So glad we all made you feel a little bit better with our answers and support.  We all stick together and try to help whenever we can.

These discussion boards are the best simply because everyone knows exactly what the next one is going through.

Keep in touch to let us know how your doing.

Susan 61



#17 GerryL

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Posted 07 April 2011 - 06:35 PM

Hi grannyd,

I rememeber hearing a study done that showed women need more sunshine than men, otherwise we tend to suffer depression more than men.

Gerry



#18 Guest_billronm_*

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Posted 07 April 2011 - 10:18 PM

Dear Granny D,

I know how you feel i have been on antidepressants,anti-anxiety,anti anything for many years. I am a worrier I just worry about anything I told my doc I don't know how not to worry. Then if I happen to find myself not worrying I have to hurry up and find something to worry about.  Then get a dx of cml that did it, I am happy now I don't have to look for things to worry about cuz I got cml. I have a hard time understanding all these terms and numbers too. Just hop on the board and just about everyone can answer your questions  (not me). I live in nw Pa. right along the lake I'm probably not to far from Susan. Lot,s of luck on your trip to Cleveland. I don't know whats going on but we had 3 inches of snow yesterday temps in the 30's. I think that when we get better weather we'll all feel better.Keep on laughing you,ll feel great especially if you follow me around. I'm one of those people that crazy things happen to and I get in really dumb situations and I don't know how. Sort of a lucille Ball type. And you sure could call my poor hubby Ricky.              Take Care Billie






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