15 replies to this topic

[LouiseS]

I would be so grateful for any help in understanding and putting in context my husband's lab results. He was diagnosed with CML chronic phase about two weeks ago and started on Sprycel at 100 mg ten days ago . He got his bone marrow results on Tues and a second blood test showed that in the week he had been on Sprycel his WBC had risen from 217 at diagnosis to 239.6 while red blood counts had fallen. Waiting to retest blood Mon. He is 50.

I am struggling to understand his BCR-ABL1 analysis . It shows a p210 transcript b2a2 of 86.617% , a p210 transcript b3a2 of 63.643% and a p190transcript e1a2 of 0.034%. On the graph the first two numbers are shown at almost 100%. I was surprised that there were 3 numbers to focus on reducing.

I asked the doctor about his extended spleen ( 7 cm) and he did then admit this put him into a higher risk category so I am worrying more.

We live fairly close to SF and I am thinking we should maybe transfer to the CML specialist there if he may be has a more complicated case.

I would so appreciate any input about what numbers to focus on moving forward. I am trying to be the one who does the research (and worrying )while my husband focuses on working ( for one thing so we keep our health insurance).

So appreciate any feedback.

Thanks Louise

[Trey]

Everything is too close together and too short a time period to draw any conclusions so far.  Give it some time.  The tki drugs do not directly kill the leukemic WBCs, especially not the "worker level" cells since they cannot replicate.  And it is the worker level cells which are the bulk of the early PCR numbers.  The tki drugs prevent leukemic cell replication among the higher order leukemic white blood cells, so that over time (maybe several weeks) you start to see that sharp drop in WBC count as the higher level leukemic cells are prevented from replication.  After they are shut down, the leukemic cells get confused and then they die.  So this is why it may take more than a week or so.

 

Your husband has two variants of the Philadelphia Chromosome, called b2a2 (e13a2) and b3a2 (e14a2).  I also have both and did very well.  The e1a2 is likely a false positive.  See if it shows up again next PCR, but I would guess it will not.

 

The spleen size and risk factors are false science.  I would ignore it.  If he responds to drug therapy, then all is well.

 

If you want to see a specialist see Dr Neil Shah at UCSF.  But give it some time before doing anything.  A month on the Sprycel at a minimum.

 

Welcome.  The stats are in his favor to do well.

Edited by Trey, 14 October 2017 - 08:41 PM.

[LouiseS]

Thank you so much Trey. For responding to me, but also for all the work I can see you do for the whole CML community. Going to take your advice now and relax. Thank you again.

[LouiseS]

Update: 3 weeks on Sprycel my husband's WBC has fallen by over 200k to 16k. We feel so relieved. I have read a lot about how Sprycel is great at lowering WBC but low red blood counts can be a side effect and that people have to come off or lower their dosage because of this. We are due to meet my husband's doctor next week and in addition to the CBC and comprehensive metabolic panels he has weekly, he has also ordered tests for ferritin, iron levels, methylamonic acid, thyroid and folic acid levels. I think it's great he is looking at this issue as my husband's low red blood count cells have just got lower on Sprycel. His platelet count has also gone from 729 to 162 which is on lower range of normal range.

Any suggestions on questions to raise with the doctor or issues to be aware of would be so appreciated.

Also his glucose level is high. Is that to do with the Sprycel or the CML?

Thank you!

[scuba]

Sprycel can cause elevated glucose levels, but not wildly so. In general, TKI's do affect glucose and lipid metabolism. Tasigna appears to be more so than the others. In my case, my fasting glucose is now higher than it used to be, but not by much.

 

https://www.ncbi.nlm...les/PMC4741815/

 

Regarding your husbands treatment so far - keep a keen eye on his blood counts during these next few weeks. He should be having weekly CBC tests. Sprycel can cause severe myelosuppression especially neutrophils when taking full 100 mg dose. He's at the break point now when WBC's are coming down into the normal range and could keep falling. If his neutrophils fall below 0.7 (700 /cubic mm), a drug break may be necessary. Any level below 0.4 is dangerous. Mine went as low as 0.1 - and I was told to go to the emergency room immediately if I developed a fever. 

 

Your husbands goal in the coming weeks is to see his blood counts stabilize. His doctor should modify his dose accordingly to find what works for him while keeping his blood counts near normal.

 

Questions to ask your doctor:

 

1. Do you recommend a drug break if blood counts, especially neutrophils, Platelets and RBC's fall below normal?

2. if you do suggest a drug break until blood counts return, can we re-start on a lower dose such as 40 mg so that myelosuppression is managed.

3. if PCR and FISH continue to fall while on lower dose, can I maintain this dose even if blood counts have normalized.

[LouiseS]

Thank you Scuba. At the moment what is low is his red blood cell count ( 3.17 m /ul, hemaglobin at 8.7 g/dl ,hematocrit at 27.2%, and lymphocyte at 13%. At the moment his neutrophil is high at 65% and his abs neutrophils is at 10.6 k/ul. His neutrophil bands are at normal range of 4%.

Is it the neutrophil only that we need to pay particular attention to? I get confused by. The bands and abs etc.

He fainted on the train going to work yesterday. His oncologist wasn't worried and said it was a vascular reaction to drawing blood ( though that happened over an hour earlier) but it was worrying for us as we immediately assumed it was the CML or the Sprycel.

Thank you so much for your input and the questions. Really appreciate it.

[scuba]

Blood counts as percent are not very useful. Absolute numbers inform what is going on more clearly.

 

What are your husbands blood counts in absolute numbers :

 

RBC (4.5 - 6.0)

WBC (4.0 - 11.0)

Hematocrit % (40.0 - 54.0) this one is measured as percent and is more indicative of anemia when low

Hemoglobin (14.0 - 18.0) 

Neutrophils (1.7 - 7.3)

Platelets (140 - 440)

Lymphocyte (1.0 - 4.8)

Monocyte (0.08 - 0.7)

 

The values in parenthesis are the normal ranges as reported by M.D. Anderson. These ranges can vary to some degree from lab to lab. Having a slightly lower value or higher value can still be considered "normal". 

 

In anemia,  hemoglobin and hematocrit numbers are more indicative of how you feel in terms of anemia than RBC number alone. But they usually correlate - low RBC leads to low hematocrit and hemoglobin. A person can compensate somewhat for low RBC's by increasing iron and B-vitamin levels (such as folate). My own RBC level, for example was 4.1 at last test. I will not be able to run a marathon, but my hemoglobin and hematocrit levels are normal (but barely so ...). I take iron and B-vitamin supplements to compensate. 

 

Your husband fainted most likely because his hemoglobin is very low, no doubt due to low RBC's. Getting his iron up will help to some degree,

 

Keep in mind what is happening. Your husbands blood system was largely leukemic before Sprycel which made him sick with symptoms and led to CML diagnosis. Right now he has two blood systems. His normal one and a diseased leukemic one. His leukemic one was crowding out his normal blood system and taking over. Unchecked this leads to blast cell crisis and kills.

 

At the start of Sprycel therapy, leukemic cells die off in large numbers creating a sudden hole sort of speak in his normal blood generating capacity. This demand for new blood is rather sudden as you noticed with his WBC counts coming down so quickly. His normal blood system is now getting a strong signal from his body to make more blood. Since his leukemic system no longer responds, the few normal blood cells have the task of getting busy dividing.

 

This takes time. HIs bone marrow is diseased with many leukemic cells. As they die off, normal cells start to fill in the gap and get his blood levels back up. Hopefully his RBC levels will start to rise now that the bad cells are getting eliminated. But that is not guaranteed. Sprycel can suppress normal blood development as well as kill leukemic cells. But usually this resolves itself over time (many months, sometimes years) as normal blood production develops alternate pathways that are not affected by Sprycel.

 

To understand this further - keep in mind that one stem cell divides and creates daughter cells. From these daughter cells all blood cell types are created including self-renewing stem cells. When leukemic neutrophil cells are killed off, a space (sort of speak) is created for the normal blood system to make more neutrophills. Neutrophils come from the same parent cell as red blood cells (see diagram below). So if you need many many neutrophils - red blood cells creation will have to wait. This is the dance that has to happen as normal blood production gets back up to speed. Anemia is often the result in the short term. Hopefully his doctor can manage the transition as he "heals" from his leukemic system back to his normal blood system.

 

[LouiseS]

Hi there

Thank you

His red blood cell count is 3.17 ( normal range is 4.4 -6)
Hemaglobin is 8.7 normal range is 13.5-18
Hematocrit is 27.2 and norm range is 40-52

Neutrophil is 65% 49-64%
Lymocyte is 13% normal range is 26-46%

Apart from these numbers almost all the other ones are now close to being back within normal range. So it's pretty amazing the progress in 3 weeks. I guess we need to wait till the 3 or maybe the 2 month mark to see how that translates to % of leukemia still in his system. It was at pretty much 100 %

[ROMO]

Scuba, 

 

That was a great explanation. We are all unique in our diseases.

Always including that particular biology of the patient, that would be ourselves.

That's where the answers lies. We are our own Doctors.

Learn everything we can. Make are own choices. That's the best

compass.

 

I had high glucose levels. It is what happens if you don't fast

All my blood numbers and the liver and the platelets and glucose and

everything bounced around but in time went back to normal enough.

Just make sure he drinks enough water. I never felt thirsty and became

dehydrated and very sick. I hope this helps.

Sprycel is working for me. Good luck.

 

Romo

[Trey]

Hemaglobin is 8.7 normal range is 13.5-18
Hematocrit is 27.2 and norm range is 40-52

 

He is not getting enough oxygen to the brain because his HGB and HCT are quite low.  This is the cause of the fainting.  Drawing blood removes some additional oxygen capacity, and is just the trigger of the event. 

 

This will improve over time (many months, not weeks) as his blood counts recover.  The blood making process is distorted by CML, and the TKI drugs help the body bring it back into equilibrium, but only over time.  Meanwhile, he should be very aware of his low oxygen capacity in association with activities such as driving and any activity where fainting could endanger himself and others.

[kat73]

LouiseS - One thought on the high glucose:  I once surprisingly got a high number, was scared to pieces, saw my PC who ordered the A1C test which showed absolutely nothing was wrong.  The answer came out on further questioning:  I had, unwittingly, eaten lunch about 15 minutes before the blood draw.  That was it!  Normally, you won't show this spike if you give your body more time, like an hour.  So, I learned not to grab a sandwich just BEFORE my appointment!

[LouiseS]

Thank you everyone. So helpful and makes it so much less scary. Yes Kat 73 he had breakfast just before the blood test!

[LouiseS]

kat73. I laughed when someone commented they had to look up your comment 'chuffed' on another thread. I have had many a puzzled face when I use that phrase as well And it's such a great word, esp for good news!

[kat73]

There's another thread??!!?  I'm (computer) illiterate . . .

[kat73]

Sorry, Louise, what a dolt I am.  Didn't mean to be flippant, and I'm so glad about the glucose!  I know what threads are.  I guess I just missed the comment someone made about looking up the word, "chuffed."  I have noticed that so many of the friends I found here long ago seem to have disappeared, and I know the LLS started a "rival" forum - or tried to - and I wonder if there has been an exodus to it.  Your comment made me wonder if it was from that other site, since I guess people visit them both.  The other one seemed to be too modern for me - all facebooky and sort of silo'd by subject threads.  It's probably for people who check a lot of blogs and forums, so they want to just zero in on their own question area, maybe.  This is the only place I check on my computer every day - no facebook, twitter, linked in, nothing.  Don't have time!

[LouiseS]

No worries at all Kat! I am also chuffed you made it back to a good place so quickly I really like this forum. It's been so helpful to a newbie. I hope your friends aren't frequenting as often because they are feeling well and so forget to check in.