New CML - fatigue and low hemoglobin

AF -

It is vital when starting Dasatinib (Sprycel) for the first time - especially at full 100 mg dose - that your blood counts are monitored weekly in order to "catch" myelosuppression.

Key blood counts are absolute numbers of:

1. Neutrophils

2. red blood cells

3. platelets

In addition, levels of hemoglobin and hematocrit also are very important (anemia).

As you are new to CML, your body has to adjust to the Leukemia burden. Leukemic cells are dying off in large numbers (which is why your white counts have come down dramatically). This is good and shows the drug is working. But your normal blood system is suppressed. It has been suppressed both by the disease and now by the drug. It will take time to recover. But it will recover.

What you need to do is monitor and adjust accordingly. 

Adjustment can be either drug dose lowering or temporary stopping in order to let your blood system recover a bit from the drug suppression. Many patients bodies will adjust to a new normal. Blood counts which are sufficient for living healthy, but somewhat lower than the general population. A few patients (myself included) react strongly to Sprycel with severe myelosuppression. It's too early to know if you are one of them, but you need to be vigilant.

Do not let your neutrophils fall below 0.7 (or 700 depending on scale used). Drug should be stopped if that occurs (verify with your doctor).

What's being counted     What's normal     What's concerning
White blood cells           3,500 to 10,500     Below 1,000
Hemoglobin    13.5 to 17.5 for men    12 to 15.5 for women   Below 8
Platelets 150,000 to 450,000              Below 20,0

In some cases drug dose lowering may be sufficient to get you through this adjustment period. For others, drug breaks are necessary. I had both.

In the mean time, you can do a few things to help your body during this period. Eat iron rich foods and supplement if you need to keep your iron levels sufficient to help you overcome anemia.

Take a magnesium supplement (I take magnesium taurate) to help avoid muscle cramping that can be a nasty side effect of tyrosine kinase inhibitors.

Drink plenty of water so that dead leukemic cells are recycled and eliminated efficiently.

It will take several months for your system to re-adjust. Make sure you talk with your doctor about dose reduction as a method to manage side effects and myelosuppression. If your doctor refuses to drop dose get another doctor. Dose reduction both as an ongoing therapy as well as a tool for managing myelosuppression is now well accepted. 

Finally - take a look at the NCCN guidelines for CML:

https://www.nccn.org/patients/guidelines/cml/index.html

Although U.S. based, much of what it reports is useful for all patients having CML since we are all human and live on the planet earth.

All the best

Same thing happened to me but worse. After a few weeks on Sprycel
I could, with help get out of bed. But my leukemia numbers were dropping
so fast and I was checked every week. After two months all the leukemia
was out of my blood. My body had to deal with those dead blood cells.
Everything went haywire. My blood was dying. I was sick.
Three months later I was “almost back to normal”.
Drink plenty of liquids. I did a lot of fruit juice.

You got to go through the initiation. Sick first, better later.
 

Romo

I was diagnosed in October 17 with WBC of 330 - I am at the severe end of Chronic.  I've been on Dasatinib 100 since early November, and my WBC dropped back to 5.7 within weeks.  

However my platelets dropped to 80.  I was tested weekly until Xmas, and at the last test they had risen to 105.  I do feel tired, but I drink loads of water and crave chocolate - which I give in to !!  It seems to help to get a sugar rush every now and then.

My body still shows signs of a massive spleen but I am thankful that a routine blood test picked up this disease.  I wonder, sometimes, what would have happened if I hadn't had a test - especially with my WBC being so incredibly high.

Hello there,

You're definitely not alone in your early days' struggles with the undesirable effects of your new diagnosis and TKI treatment.

As Scubas has explained, it will take a good several months from diagnosis for your blood tallies to normalize. Now that your bone marrow become less crowded it can now begin to crank up normal myeloid blood cells to fill out the missing numbers.

But in the meantime, to address your low hemoglobin and mend your energy levels, you can help your bone marrow producing healthy mature red blood cells by opting for iron, B12 and folate rich food groups. It is equally important to remember that anemia can arise from simply not having enough of these vitamin and mineral levels in the body.

Hence, to isolate your low hemoglobin issue from a possible myelosuppressive condition inherent to dasatinib therapy, i'd suggest speaking to your doctor to get tested to find other underlying cause for your anemia.

Then again, as with all things new, TKI therapy included, maybe all that was needed is a little time for your body to adjust. But as to how much time is needed, only you can decide primarily for yourself basing your evaluation on how much of your quality of life has been affected by your treatment.

Personally, my own blood counts were like Korean horror films at the start of treatment. Particularly my neutrophils count. Merely a week into nilotinib regimen i was told to stay home for a week because my doctor fear that i might not survive the simplest strain of a flu virus. Though my platelets were just below the normal range it deemed clinically safe as long as i don't decide to take up fencing as a new hobbie. As for my hemoglobin, the count hit its lowest at 68 within a week also on nilotinib. Alarmed, my hematologist suggest that i check into the hospital for a blood transfusion to temporarily treat my anemia. But to that i politely refused because i had my own concerns with the associated pathological risks it involved. Next, my doctor opted that i get treated with an iron infusion which again i declined due to the possible side effects.

But the difference in our situations is that, at the time when my hemoglobin suffered, i never had the fatigue or fare badly in my daily activities. From memory, it was a week and half after my diagnosis and treatment commencement, i was back on board meetings without any problems at all.

For me, it did help that i took quickly to dietary change to overcome my anemia. For example i religiously turned to iron-food, such as leafy asian greens, b12 from ocean-caught fatty fish (greasy mackerels and sardines) and folate from lentil and spinach soup. Suffice to say that the forced dietary change show much improvement in my overall blood results, particularly my hemoglobin which continued to climb and to my latest blood test completed three days ago, persisted at 140.

Back to your situation, considering how very new you are in your diagnosis (not that I'm that far off in my own journey!), i would suggest to give your bone marrow another month or two to do what it must. And importantly, try to keep an open dialogue with your treating doctor about your overall concerns relative to your current treatment. Also be assured that part of the tki therapy's assessment of its efficacy and safety profiles is in ensuring that the patients' intolerability of the drug is kept to minimal. Besides, given the various TKIs currently available to treat CML, there bound to be one from the mix that will be slightly better for you then the rest.
I wish you the best of health in your journey with CML.

Best Regards,
Ellie.

Hi AJ 

My husband was diagnosed beginning of Sept 2017. He is also on 100 mg Sprycel.  The first month is very hard , dealing with the shock of diagnosis,realizing how ill you are ( and feeling immediately worse on hearing you have leukemia) , relieved to hear you can take a TKI but then terrified when you read possible side effects. Plus you feel totally exhausted.

Four months on my husband is feeling so much better and I think that is the case for many. It does take longer for your red blood cells to respond and have space to grow and give you back some energy. In his case that was a good 2 months. My husband takes his Sprycel at about 7 when he returns from work and just before dinner. He drinks a lot of water every day  ( at least one gallon). He avoids fatty foods. He didn’t have much of an appetite for the first few weeks. Now it’s bigger. He just started taking Curcumin which has helped his skin and puffy eyes. He has more energy than the 6 months prior to diagnosis.

He has found it helps him not to think about CML so I am the one who has done all the reading on CML and thankfully found  this forum and the one operated by the Leukemia Lymphoma Society. I think someone does need to be up to speed so that you can advocate for yourself at meetings with doctors, dosage reductions and to mitigate side effects. But it’s good not to think about CML all the time as well. 

It’s very early days. It will get better.

Take care, Louise 

Looks like you have been getting great advice.  When my husband Tim was first diagnosed in September 2017 (age 46) his hemoglobin was 112 (140 being bottom end of normal).  He has been on Imatinib 400mg since then and his hemoglobin went down to 99 and just sat there for the longest time.  He then started on Iron tablets 3 times a day and within a month he was at 144 and feeling better, more energy and not pasty looking anymore.  He has been off the iron for a month now and next week we get blood tests to see if it has remained up on its own. 

The fatigue has been very bad but by what I read with everyone here and on the facebook forum, it is unfortunately very normal but it will get better.  My husband can have some good days and then it hits him like a ton of bricks.  we have learned to go with it and not fight it.  We were also encouraged to take the Imatinib just before bedtime so a lot of symptons happen during the night and for him, it has worked like a treat.  Work with your  specialist and see what will work for you.  My husband too was in bed for the fist 2 months but thankfully he runs a computer IT business from home, so he just ran it from bed!  He puts in maybe 6-7 hour days now, actually sitting in the office and seems to be coping with that.  Actally, today was really bad for him and he commented that he was obviously feeling better if he noticed the rough day more.  It will improve,  your body needs time.  It is massively dumping the junk out of your system and the body needs time to produce the good cells again.  Keep asking questions, we sure did.  Take care.  Michelle

Hello
I would like to know what kind of curcumin supplement you took please? I have low blood count as well.
Thanks