21 replies to this topic

[AmyH]

WBC was at 3,000 today.  2 weeks ago it was 5,000.  Is it okay for it to get that low?  My oncologist said it was normal...but I thought normal was like 12,000?   When I was diagnosed it was 290,000...so this is a huge drop of course and my medicine is working and I feel awesome!

Platelets were in the 160's and my RBC were still 10 something. 

Can someone explain these white blood cells to me?  Will they ever bounce back up?  How does that work on Gleevec? 

I actually missed my appointment today so I didn't want to spend too much time with my doctor b/c I felt bad for missing my appointment and him having to squeeze me in.  I knew you all would be able to help.

Thank you!

~Amy

[Lori's okay]

Amy,

I'm so glad you asked this.  I have almost the same question.

The little I know is that first, the normal range on WBC is around 4,600 to 10,200 so 3,000 is not as low as you may have thought.  Also, it's very common for several of our numbers to drop right through the normal range and to go too low.  Sometimes folks have to stop meds for a while to let the good cells grow better to start doing their jobs again.

So, I'm very new and feel sure you'll get some better answers soon.

Here's my question:  My WBC went to 3,000 at my last visit (3 weeks ago.)  Platelets were at 82,000, and ANC at 1,860.  Doctor said to go on half dose of Tasigna and see her in 3 weeks.  My concern is if the rates still dropped in the interim and if I may already be at low enough levels to become immuno-compromised.  (The soonest appointment I could get is closer to 4 weeks, aarrgghh.)  So, should I be worried that it's going to be so long between visits when the levels are getting low?

Hope you don't mind me adding to your thread.  Hoping some of the experienced folks can tell us both what is too low or point to some previous threads about this.

Isn't it great that the meds are working for us??

Love to you,

Lori

[tiouki]

Hello Amy and Lori,

I am not an expert but at the beginning of treatment low blood counts are quite common (for whites, reds and platelets as well). It usually gets better after a few months but it can lead to a reduced dosage or a treatment interruption during that period.

The normal range is what you said for WBC, for platelets it is 150 000 - 400 000.

A WBC of 3000 is low but it is not dangerous. I think you should do blood tests regularly (every week or so). If it goes below 1500-2000 call your onc and stop all drugs.

For platelets between 50 000 and 100 000 it is the same : theoretically not dangerous but keep an eye on it. If it goes below 50 000 stop all drugs and call your onc as well (very low platelets is actually dangerous).

Hope it helps, good luck with that ! And try not to worry myelosuppression is transient for most people .

Pierre

[Trey]

Low WBC is rather normal for those of us taking CML drugs.  I call it "CML normal".  We can function very well at these levels, and the counts will respond when required (illness, infection, etc).  If your WBC gets down below approximately 2.0 (also written as 2000) you will want to have the doc monitor it closely.  The doc will want to especially watch the neutrophil piece of the overall WBC.

[AmyH]

Well, he said he didn't want to see me for another month now.  I was going every week and now every 2 weeks and today after these results he said he didn't need to see me for another month unless I had something happen.  Should I call and ask for my blood to keep being drawn weekly? 

[NotJack?]

Hi Amy,

My response was the same.  250,000 wbc at dx, Tasigna, then went down down down. At 2000 they started monitoring weekly.  My general onc was thinking of stopping the Tasigna.  My CML specialist at Mayo said no, and asked for immediate updates on my numbers.  I dropped down to 1,000, and they were preparing to react, telling me to avoid large crowds (I received this advice in an airplane!).  My team at the cancer center said that while I should stay away from schools, crowds, airplanes and hospitals(!) sever neutropenia (500) is where the naturally occurring bacteria in your mouth etc, starts to cause infections.  My counts then slowly started rising back to low CML normal.  I just think that our drugs work so well and fast, that it takes our body by surprise and t takes a while to build up healthy production.  If our drugs were less effective, the killing of the bad cells and the rebuilding of the good cells would meet at low normal--without showing a ultra low count.  Remember these drugs are just removing ineffective cells that are squeezing out the space for the good red and white cells.  I am glad that my CML specialist saw what was happening and monitored it closely, my general onc was not as experienced in CML, and would have lobbied for screwing around with the dosage etc.  That is why I have a CML specialist--for times like that.  I would not be concerned until below 1500 myself, unless I had other medical issues.  I think that you are doing well, and that is why they are backing off. Remember that this is a slow cancer, and you are being monitored and going in the right direction!  Treat yourself to a nice dinner out to celebrate.  Don't forget to celebrate the successes!  Jack

[Tedsey]

Amy, maybe this will help a little.

When first diagnosed in late fall 2009, my blood counts dropped immediately with hydroxyurea, then more with Gleevec.  This November (2011), my WBC finally fell into the lowest-normal range (4.0 for my lab).  When my WBC were very low, I was given Neupogen, then Neulasta (shots) to increase WBC production (namely neutrophils, white blood cells that fight bacteria).  If your counts get too low for his/her comfort, your onc may want you to get these shots.  At one time, I gave myself shots at home every other day (if you have young children, they will get bored of this real fast).  But you DON'T have to do this!  I just didn't have anyone to watch the kids while I ran to the onc.  The shots brought me a little over the 1.0 range for my total WBC, (as you know, there are different kinds of white blood cells).  And my neutrophils stayed around .9 and sometimes a bit higher.  Presently, I stay around 1.0 for my neutrophils, (ANC), without shots.  For some healthy people, 1.0 is normal.  And I don't know what my average was before CML, so it may have always been around 1.0.   My PLT (platelets) still remain low (20-30,000).  Some oncs may consider this "dangerous", but I have shown no signs of bleeding and appear to clot normally.  I never bruised abnormally with CML, and I still don't.  But there are shots and platelet transfusions for that if your PLT get too low.  Your hemoglobin (HGB) may also become lower.  Most people on this board seem to go just a little below normal.  If you menstruate, you may have issues with anemia on a TKI, especially if you begin to bleed heavily.  This could turn into hemorrhaging (been there and cured of that with birth control pills).  But there are shots for low hemoglobin too.  They seem to have a shot for everything.

All in all, everyone has their personal threshold (for everything; blood counts included).  Normal for other people may not be your normal.  However, it takes time and communication with your onc to find this out.  For example, my threshold for hemoglobin was below 6.  Most people are transfused at 8.7 or somewhere around.  But I was fine at 6.   My ANC, (absolute neutrophil count), stays around .9 or 1.0 without shots.  So far, I have been OK, (but afraid of jinxing myself if I admit that, so, "poo poo", "kenahora" and the like). 

So, if you counts are very low, keep hand sanitizer near and keep your hands away from your face (good advice for anyone, really).  My first onc scared the crap outta me and I stayed home for the holidays.  It turns out I didn't have to.  When I was really low, I did what I had to do AND did what I enjoyed (even went to a public pool with my toddlers---some may consider this ultra stupid, but I guess I was lucky?).  Anyway, you gotta live your life (as my onc and members on this board have said to me).  I have two little children and one is in preschool, so there is no great escape from the evil germs a-lurking.

Don't think I am recommending throwing caution to the wind and hanging out with a bunch of actively sick people, and "licking the souls of your children's shoes" (borrowed this expression from Trey way back when).  My friend's friend's husband (how is that for confusing), contacted a horrible illness, (not sure if it was bacterial or viral), and was in ICU for months, had his organs shut down, damage to his heart, and needed home healthcare.  It was touch and go for almost half a year.  I think he is OK now, but he was an otherwise extremely healthy young guy that just came into contact with something nasty.  Life is a crap shoot.  There are tons of things out there that can do a person in.  Having CML and low counts magnifies the fear of just about everything bad.  If you are like most people, aside from the CML and TKI side-effects, you will likely be in no more danger than most people.  But, as a long-time germaphobe and fellow and former very low WBC producer, I still recommend keeping the hand sanitizer in your bag. 

Teds

P.S. I am doing well and feel great.  I am on Sprycel now, but the change had little to do with my CBC.  It had more to do with my seemingly flat resonse to Gleevec.   

[AmyH]

Thank you Jack!  Yah, my oncologist isn't a specialist on CML and I'm overseas in Germany with the military so I don't really have that option...but he does seem pretty knowledgeable with CML b/c he has had quite a few patients with it through the years.  He didn't seem worried at all, but I just get a little worried.  I work in children's ministry so I'm around 100+ kids all the time.  I also have 3 kids of my own who go to school so... I'm around a lot of sickness.  Did you take Vitamin C or anything to boost your immune system when it got low?

[AmyH]

Thank you Tedsey! 

Yah, I can't be a germaphobe - I have 2 kids in school and I work with 100+ kids on a weekly basis in children's ministry.  I sanitize/wash my hands a lot and so far so good. 

They really do have shots for everything don't they!  haha.  I still haven't had my period...but I'm waiting for it.  I'm very scared about that, but hopefully everything will be okay.  I can't believe you do well at 6 for your hemoglobin!  I was transfused at 7.  When I got my blood and shot up to a 10 I felt like a new person!  And my legs were so tan!  lol.  Anyways, my oncologist has never said anything about giving me any kind of shots.  He seems to act as though I'm doing extremely well.  I'm like a total 180 from when I came in there b/c I was so sick, but these low WBC #'s freak me out.  Everything seems to put me on edge right now though. 

I bruised so abnormally with CML!  I was getting bruises that turned into big knots.  It was so weird.  I also started developing huge knots of leukemia cells I guess under my skin in my thigh area.  I thought they were blood clots - which sent me to the ER and when this all started.  It was so weird.  I'm so glad all of that is gone! 

I never even thought about not going to the pool.  My kids love the pool.

Do you take vitamins or anything to boost your immune system? 

[NotJack?]

When I was getting low, below 1500 (absolute neutrophiles), I made a much more diligent effort at taking a multivitamin, and when I kept going down, I took Airborne fizzies.  Not sure that they helped, but did that and carried Purel with me everywhere.  General oncs sometimes don't do a biopsy, because the drugs usually work, and the tests are quite accurate.  But a baseline Biopsy is usually done to give you a baseline, and there are some other cancers that are even rarer that can only be ruled out with a biopsy (or so I have been told), you also get an indication of mutations present.  My general onc did not see the need for the biopsy, my specialist insisted.  As it turned out I would have been just fine without one, but I am not much of a gambler, and went with a biopsy.  Also educate yourself at Trey's blog regarding when to switch blood tests--one is more effective at high WBC and one is more effective at low WBC.  I think that it is just a good practice to be your own advocate on this!  Now I have to decide whether to go with a biopsy at 6 mo or not. I am pretty sure that I will, but haven't decided yet.  Your onc will warn you if your count is low enough to avoid crowds, you should just show due diligence with Purel anyway, and I am sure that all will be fine.  Like I said, at 1000 I was on a 5 row plane twice, teeming with germ laden travelers, and I was just fine--nervous, but fine. Oh, and it did me good to google all of the blood test items--low platelet count, low ANC, low RBC, etc., to find out the side effects of these numbers.  Just be sure that you visit Mayo or Anderson or another site--not just Wiki, for the info.   Jack

[AmyH]

Oh, I had the biopsy.  He did it right after he told me he was 95% sure I had CML.  It all happened pretty quick and then I was admitted to the hospital where I stayed for 5 days.  I had to get some blood, fluids, and they watched me on the medication for a few days after my results came back.  I will also be having another biopsy at 6 months. 

Thanks for the information! 

[LivingWellWithCML]

I started Gleevec 400mg in April 2011 and my WBC hovered around 3,000 for the first 9 months, and my absolute neutrophil count hovered between 1,500 - 2,000.  I am into the 10th month of treatment and my numbers are starting to bounce back to the low end of normal (WBC = 4,600 and ANC = 2,580).

However, even though my numbers were below normal, they were never considered dangerous and the onc kept me calm throughout.  Heck, I didn't even catch a cold for the first 6 months, so clearly the smaller number of neutrophils were doing their job.

Sounds like you're doing just fine!

[Tedsey]

Well, I went out in the sun last summer because I read that cancer patients don't get enough vitamin D.  Now, I have wrinkles around my eyes.  So, that was not a good method.  Anyway, I take some.  I still take a pre-natal as my multi-vitamin (and because can't stop taking them for emotional reasons).  I heard it was good to take a pre-natal 2 years after having a baby and it is generally a good vitamin for women anyway.  I started fish oil, because I fear getting heart disease next, but we will see with my next CBC if that is a good idea or not (may lower PLT).  My husband and I both take curcumin because it is a good anti-oxidant and anti-inflammatory.  I take L-lysine for mouth sores (I got bad sores since I started Sprycel, but could be from just about anything, L-lysine seems to help).  I take iron asporate (with iron it is all about what kind doesn't make you nauseous--it is trial and error to find out).  And besides a few other drugs for leukemia, depression/anxiety, and birth control, that is it.  I take the vitamins and drugs in two waves, (vitamins & some drugs in the a.m. and Sprycel in the p.m.), so nothing interferes with the TKI absorption.  But, I am not one of the speedy hares (as many on the board like to call 'em).  I am a turtle.  I have not achieved a Major Molecular Response (MMR) yet.  I think you are supposed to hit it around 1 1/2 years.  But, as of my last PCR, the CML appears stable (but I keep wishing it would just go away).

I was surprised to hear about the leukemia cells under your skin.  OMG!  I am so happy you are doing well.  Keep on healing fast!

Teds

P.S. Yeah, it is so weird that we first freak out because our WBC were so high, then again because they became so low.  I got very comfortable with my low numbers.  At least, then, I knew the drug was keeping the WBC from proliferating.  When my WBC hit normal, I freaked out again.  I was sure I was losing response to the drug and they were getting high again.  Gee whiz!  If it is not one thing, it is another. 

[hannibellemo]

Amy,

It's not so surprising that our bruises would have huge knots considering all the WBCs that must have been rushing to the site! I didn't figure that out until I had my bi-lateral BMB/A at dx and had two lumps the size of golf balls on my hips! Made sense after I made the connection.

I also had a very painful lump on the outside of my thigh. It was so sensitive I couldn't sleep on that side. It wasn't a bruise, at least it didn't look like a typical bruise, and I mentioned it to one of the many interns I saw that day. Nothing was ever said or done and it went away and I didn't think about it again until I read your post. What were you told about the "leukemic cells'?

Teds,

I did the same thing when my WBCs finally hit normal (after nearly 2.5 yrs.). It's funny how comfortable we became with our "new normal" counts.

Take care,

Pat

[AmyH]

I have never met anyone else that had the knots!  Mine was the size of a baseball.  I thought I just ran into something b/c I sometimes do that...but then I got the smaller lump on the outside of my thigh too and thats when I went to the ER.  I had an ultrasound done the morning I was diagnosed (at the same time I got my blood work done where the results came up crazy...) and they had no clue what it was.  The ultrasound lady was just like "it's pockets of like fluid...like you hit something incredibly hard" ...she was baffled.  Anyways, later my oncologist said it was pockets of leukemia cells.  Not sure if that is accurate or not, but thats what he said.  After I started the Gleevec they went away.

[pamsouth]

Trey, When

I first went I first was DX with CML PH+, I went on Hydrea because of large platelet count of over 2 million, then on Gleevec.  My white cells went down to 1.7, but I also remember my rbc and some other counts got very low, too.  So the question is does that mean the leukemia had effected the red cells, etc. as well, since Gleevec is a Targeted Drug and is only suppose to kill the bad cells?  I did go into the hospital with a fever and have to have and IV and go off Gleevec for awhile until my cells came up which took awhile then went on a lower dose for awhile.

PamSouth

[Trey]

Amy,

If it was a grouping of leukemic cells into a lump (not associated with a lymph node), it is called a chloroma. 

[Trey]

Pam,

In CML, all types of blood cells are produced by the high level leukemic stem cells, including WBCs, RBCs, and Megakaryocytes (pre-platelets).  So RBC and platelet production are impacted as well as WBC production.

[AmyH]

Thanks Trey!  I knew you would know!