15 replies to this topic

[Melanie]

Just wondering if anyone has any explanations on why my Platelets, RBC, Hemoglobin, and Hematogrit numbers have been declining over the last 9 weeks. Same time that I've been able to start Tasigna again due to myloid depression. I've never had problems on the RBC side...have always been in normal range until now where my RBC - 3.47; Globin - 9.9; Crit - 29.5; and Plt - 55.  I'm holding okay on the WBC side with help of Neupogen shots and still only taking 450 mg of Tasigna. Anyone have experience with this?  Side note, I've been getting weekly CBC since last September and this trend has never shown up before.

[Susan61]

Hi:  You might need a reduction in your dose of Tasigna to bring the platelet count back up.  I have had a decline in my  Platelets over the course of many years, but held at 127 for about 4 years.  My  last plt ct. was down to 93, and I am going to see about reducing my Gleevec from 400mg to 300 or 200 mg.  I have some other abnormals which I want to see if reducing my Gleevec will help. What did your Oncologist say about the Platelets of 55?  You do not want to get to the point where you need a transfusion of Platelets.  You said you get tested weekly.  Ask your Oncologist  about it.

[Melanie]

Hi Susan, thanks for replying.  My onc is taking the wait and see approach. He doesn't understand why my platelets are taking a hit, but said the danger number is 30. I like your idea of maybe reducing my Tasigna back to 300 mg. I just had my fish test and it was 2.2%...haven't had a PCR yet. Since this is the longest I've ever been able to stay on a TKI, I was hoping to get the PCR test soon.  Have you reduced your Gleevec before and your platelets return to normal? Guest I don't understand why the RBC side is being affected when it's always been the WBC side that I've had problems with. Hope you get to reduce your dosage and you abnormals return to normal.   Melanie

[Susan61]

Hi Melanie:  I do not have a copy of my blood work in front of me, but my WBC runs low in the 3's, and my RBC runs low and so does my HGB and HCT.  They are all stable for many years, and have stayed in that range.

How long have you had CML?  Was Tasigna the only TKI you have been on?  They did not start to do PCR testing on me until I had a complete cytogenetic response.  Once I got to that point,then they started to just do PCR testing on me.

As long as your doctor is keeping a close watch, then leave it up to him or her to make your decisions.

Let your doctor decide if the reduction in dose is needed. 

     With me I have been on 400mg of Gleevec for 11 years with stable numbers, therefore, what is going on with me is all new.  This is why I am trying to go lower on my dose to see if it will stabilize a lot of my issues.  Don't go by me for your results.  Everybody does differently on whatever they are taking, and what could be okay for one is not okay for someone else. Sounds like your doctor is keeping an eye on your progress to see where changes may be needed.

I wish you well with good results.

Susan

[Ray99]

Hi, Melanie,

   I have the same problem with Plt.  Since dx about two months ago, I have started Tasigna 300mg twice a day for two weeks and my wbc drop from 200 to 11 and plt dropped from 662 to 544.  So far so good.  But, at the fourth week, wbc dropped to 3.4 and plt  to 56.  My onc reduce the dosage by half to150 mg twice a day. By week five, my plt has dropped to 21 and wbc to 3.2.  My Dr  take me off the Tasigna and one week later the plt went up to 64.  He asked me to stay off  for two more weeks until the plt go above 100 to resume Tasigna.  My next appointment with him is next Thursday and I am hoping my plt will be better.  My rbc and hgb are pretty stable at low level of around 3.3 and 9.

Ray

[Melanie]

Hi Susan, being stable for 11 years sounds amazing, but then you get this new lab result. My heart goes out to you and I pray that you are able to lower your dosage to stabalize these new issues and not lose any response.

My Dr does keep a close eye on me, especially since I have not responded to the usual treatment guidelines for CML. He's awesome and is willing to listen to suggestions as long as they are medically reasonable. We're both in new territory. I was dx about a year ago and have tried all 3 TKI drugs. Although my last fish test was 2.2%, he doesn't use the term CCR, because my bloodwork numbers are Neupogen induced. I've never had stable CBCs. We're trying everything we can before having to result to a transplant. This latest trend of low platelets is a new issue and hopefully one we can overcome quickly. I was just seeking out other people's experience with it to get an idea of what may be ahead.

I wish you well too and take inspiration in your 11 years of experience. Please keep me updated on your progress.

Melanie

[Melanie]

Thanks for responding Ray and I'm sorry you're on this on and off road of trying to stabalize your numbers. I wonder if once your plt are above 100, if your Dr will start you on 1/2 dosage or full dosage? It was such a fast drop from week to week in both wbc and plt. I had similar experiences with the wbc and neutrophils dropping to dangerous levels, but not plt until now. I pray that your response is due to being newly dx and your body just needing a little break to adjust to the Tasigna. Please let me know how you're progressing and I wish you well and quick response.

Melanie

[Ray99]

Will definitely let you know my counts and Dr's recommendation after the office visit on the coming Thursday.

[Susan61]

Hi Ray:  That was some drop in the platelets.  I have been on Gleevec for 11 years, and my platelets stayed good until recently they are slowly going down.  I have always been on the basic dose of 400mg, but I think my doctor will cut me down to 200mg if this next blood test shows another drop.  You might have to get switched to another TKI if the vacation does not work or a lower dose.  These TKI drugs are fantastic for what they do for CML, but these things do come up that require adjustments.  I hope they get you stabilized so you can move on with everything.  I will be looking for your update.  Take Care

Susan

[Tedsey]

Dear Melanie,

I am taking Sprycel, but it appears that low counts for some, (despite the TKI), over the course of 1 year is not unheard of.  Why this happens to some and not others is, more or less, a mystery.  Some of us have a much harder time getting close to normal again. 

You asked specifically about PLT.  Mine have been low for the last 2.5 years.  They have been ranging from 20,000 to 50,000 with an occasional blip up to 70,000 (last CBC).  Everyone has a different bleeding threshold.  For example, although this is not a great place to be, I am fine at and around 20,000.  Same thing goes for hemoglobin.  Some people do fine as low as 6 and some need to be transfused around 8.7.  In time, you will find what is normal for you (or find out how low you can go before your onc yells "fire"). 

As for the WBC stim shots.  The shots should have nothing to do with attaining a CCR (complete cytogenic response---CCR is determined by counting how many cells are Ph+, not a complete blood count that "counts" all blood cells).  Did you mean a hematological response?  Even with low counts, as long as most of your numbers (CBC) are near average or stable to some degree, you have attained a CHR (complete hematological response).  The term CHR is, more or less, loose.  After a few weeks, I was considered to have a CHR, but my blood counts continued to go down.  Nevertheless, (no pun intended), I never "lost" CHR.  My oncs did not consider the Neupogen/Neulasta shots or even the Aranesp, (to increase RBC), an "artificial" CHR.  It appears that all they want to see in the beginning is the WBC go down and counts to stabilize, (this can been seen in a graph---your onc should be able to graph your numbers via computer). 

I don't know what FISH 2.2 means because I have never had a FISH done.  Assuming that CCR is 0% FISH, then you are close at 1 year.  If you can stay on 1 drug continuously, you will probably meet the NCCN CML guideline milestone for CCR soon.  Assuming that you have not been able to stay on one drug continuously, this may have an impact on reaching the CML "milestones".  So, I would not worry about a BMT unless something unusual crops up.  Ignore or avoid any conversation that involves that acronym, (but I don't know your complete case; I assume you have no unusual CML issues at this point).  So, it appears you have not exhausted all your options yet. 

Despite my very low counts, the onc just shot me up with stim drugs and we both watched and waited.  At 2.5 years, my hemoglobin is a hair below normal, (I was below 6 without shots for a long time and with shots I was around 7).  My WBC are now just under low average for my lab.  The only issue I still have is PLT.  However, I seem to be OK, still, after 2.5 years of being mostly below 50,000.   No one is talking about a BMT for me yet. 

So, don't stress out about your PLT now.  Be aware of signs of hemorrhaging (I am sure your onc has discussed this with you).  Moreover, your onc gets concerned at 30K, mine gets uncomfortable below 20K.  So, oncs have different degrees of what is acceptable.  If you don't experience any signs of bleeding, you are probably OK. 

For over a year, my counts were very low.  I had to take Neupogen, Neulasta and Aranesp to raise all my blood counts.  I had transfusions, but no PLT transfusions.  I have not shown any signs of bleeding and I am still going strong 2.5 years after dx.  After a switch to Spycel from Gleevec, my counts slowly recovered from critical to a new low.  But I have been stable.

Hope this overly long post helped in some way.

I wish you the best and hope things start to improve very soon,

Tedsey   

[rct]

Tedsey wrote:
Hope this overly long post helped in some way.

It did.  Good to see you still at it.

rct

[Melanie]

Tedsey, thanks so much for sharing your experience! Your post definitely helps. My onc is very conservative and doesn't believe I have ever acheived CHR except for one week about 6 weeks ago, although stim shot induced.   His major concern now is the dive on the RBC side, especially the plt since I've always been in the normal range since dx. Your experience has given me hope that my options are still many...just a matter of toughing it out.

I'm not sure what you mean by signs of bleeding. After my blood draw every week, regardless of size of needle (we're using the juvenile one or butterfly), my vein bleeds out some and stays bruised looking for a week. Looks like I'm a junkie. Also have many bruises that appear out of no where and just the other day, I looked down at my leg and the skin appeared to have split on its own and was bleeding. It stopped, but just weird. I'm assuming all this is from low plt and nothing serious. I'll see what my numbers are on tomorrow's CBC.

Have you acheived CCR? Have you been able to stay on Sprycel all the time or did you have to take breaks?

Thanks for the help and encouragement and I have faith things will stabalize eventually. I'm tired of being so focused on this all the time.

I wish you the best in your "new normal" too. Please keep me updated on how you're progressing.

Melanie

[Ray99]

Melanie/Susan,

    Just got back from onc's office.  He put me back on half dose of Tasigna,150mg twice a day, after a three week break.  My plt go from 21 three weeks ago to 184, hgb from 8.9 to 12.3 and wbc from 3.2 to 3.6.  I am surprised that wbc did not go up since I am off TKI. 

    He want me to go back to see him in two week.  I am anxious to find out how my body respond to half dose for two weeks.

Melanie,

   How is your plt count?  Does it go up?  Are you back to Tasigna?

Ray

[Melanie]

Hi Ray! So happy your numbers recovered nicely after your break!  Going back on Tasigna at 1/2 dosage sounds reasonable, so maybe your system can adjust and you can hang onto your platelets. Are you getting weekly CBC?  As fast as your plt dropped last time, you should know right away if they've stabilized. Sometimes it just takes a while for things to balance out. It's good that your WBC didn't shoot back up after taking the 3 week break. What is yout ANC (absolute neutrophil count) and basophils?  What were your numbers at dx? It seems you responded very quickly for being dx 2 months ago.

My plt dropped to 50 this week, hmg to 9.4, and hmc to 29.0, so my Dr called and had me stop my neupogen shots. It seems that in some cases the shots can actually cause low plts. I suspect now my WBC and ANC will take a dive, then we'll have to either stop the Tasigna or lower the dose until my plts recover. I'm only taking 450 mg now, so we'll see. Good news is that this is the longest I've ever been able to stay on a TKI...2 weeks at 300 mg and then almost 7 weeks at 450 mg and I've been at this for over a year now. My Dr and I are trying very hard to not stop Tasigna, so we're hoping eventually my numbers will stabilize.

Looking forward to a good update from you with your next lab results. Like Susan says, sometimes we just have to make adjustments.    Susan, Have you gotten your next lab results yet? Where are your plts?

Melanie

[Ray99]

Hi, Melanie,

My Dr is happy about the CBC results.  I asked him about weekly CBC.  He told me that once in two weeks should be fine.  My next visit is two week from today.  On each visit, I get my blood drawn at his office and they have this machine onsite that get the CBC results in a few minutes.  My CBC count sheet does not have ANC and Basophil numbers.  Instead it lists GRAN(Granulocyte) =2.0 and GRAN%=55. He told me that GRAN and ANC is similar (or equivalent, can't remember the exact word he used). At dx, the CBC was done in the hospital and ANC=104000 and Basophils=2040.

Do you know why WBC dropped while on TKI break?  I expect it to go up since the CML cells should be pretty busy multiplying without intervention by TKI.

Before, my break, I have been on Tasigna for four weeks (three week full dose and one week half dose). My Dr ordered a PCR right before the break, which is the second test, the first being the baseline.  My baseline number is 73.3%IS and the second one (four weeks after the first one) is 10.4%.  He told me that it is a very good response.

I will keep you posted after my next test two weeks from now.

Take care!

Ray

[Tedsey]

Hope all is well rct.  Thinking of you guys and sending good vibes your way.  Even if this is a bit of magical thinking, I have adopted a new life policy where I will embrace any positive energy thrown my way.  I don't think it could hurt.  So, sending good wishes out to you.

Teds