13 replies to this topic

[stpaddy]

My husband has been experiencing worsening fatigue over the last couple of months and recent CBC shows RBC of 4.44 (Hemoglobin is 138) which is the lowest since he started 400 mg Gleevec a year ago.  We are thinking that this might be the explanation.  His fatigue had been slowly improving before this setback.

 

His other numbers are:

Platelets 436

Neutrophils 3.0

Lymphocytes 1.7

Monocytes 0.6

Eosinophils 0.4

Basophils 0.1

 

B12 is high at 1171.  He takes a multi, a B50 complex  and Vit D.

 

eGFR 75

Alanine Aminotransferase 15

 

We have tried to think of all the other possible culprits when it comes to fatigue....his thyroid is good and is monitored by an endocrinologist.  He is going to try to step up exercise (hard to do but will try!).  Iron level and vit D doesn't seem to have been tested in the CBC so we could ask for that.  He had a cold during the last month and a colonoscopy (sedation took awhile to get over) but otherwise we can't think of anything that has changed. 

 

His RBC was 5.08 last August but since then has been decreasing (4.88 in Oct 2016 and 4.70 in Jan 2017).

 

He doesn't want to switch from Gleevec at this point unless he has to as it has been very effective...maybe a dose reduction?  Any ideas?

 

[Red Cross Kirk]

Tell your husband that his response to Gleevec is impressive, the CML is nearly undetectable!

 

I was also feeling fatigued a couple of years ago.  I've found that getting out and doing something enjoyable is the best medicine.  For me, hiking several miles in the forest is rejuvenating.  I may be a little sore the next day, but it's worth it.

 

My labs have always been on the low side for red cell count (3.99 - 4.35 M/cu mm), hematocrit (37.5 - 41.6 %) and hemoglobin (12.7 - 13.8 g/dL).

 

A dose reduction might help.  It sure reduced my cramps and eliminated the subconjunctival hemorrhages.

[jmoorhou]

I don't know if you have read Trey's log, but it explains Gleevec lowers red blood cell counts as well as white counts, it also lowers hemocrit and hemoglobin.  Exercise is best solution.

[kat73]

The fatigue comes with the territory with all the TKI's it seems.  Exercise never worked for me.  RBC's not necessarily the culprit, and your husband's numbers (HCT and HGB as well) are not very low at all.  I went down the anemia road, thyroid road, etc.  Nothing.  It's just a side effect from the TKI hitting healthy cells and affecting their energy-producing functions.  Watch out for depression; it can follow on chronic fatigue.

[Buzzm1]

stpaddy, your husband is due to test again this month; hoping his very low PCR level readings continue.  Lowering his dosage to 300mg may help to reduce his fatigue without compromising his progress.  This can be achieved by alternating a full dose (400mg) and half dose (200mg).  What is your oncologist's response to the fatigue issue? and has there been any discussion of a dosage reduction?  

[survenant]

Correction of Low Vitamin D Improves Fatigue: Effect of Correction of Low Vitamin D in Fatigue Study (EViDiF Study)

 

See also  Fatigue in CML

[jjg]

I know he doesn't want to switch but when I switched from G to T my energy tripled and that was just in the first year, I definitely feel better than that now. I went from struggling to work 3-4 days a week to now on T working fulltime then going home to a toddler. Admittedly I was on a high dose of G and nausea contributed greatly to the fatigue.

[stpaddy]

Thx so much for the replies.

 

Buzzm1, we will get the next PCR results in 2 weeks and will ask the onc about dose reduction.  So far we haven't had any discussion with him about dose reduction as the fatigue wasn't as severe as what it seems to have become lately.  Previously the onc has not had many suggestions beyond exercise, rest, nutrition etc.

 

Survenant, thx for the info, we'll ask to have Vit D tested as well as iron.

 

My husband is 56 and had no other health issues prior to diagnosis - we are really hoping that we'll be able to improve his energy levels.

[Trey]

Sometimes we just need to work our way through the fatigue during the first couple years and get to dosage reduction after PCRU for a while.  That is one of the better solutions.  Exercise is a good idea.  Hard to get started.

 

His RBC is not low enough to cause extreme fatigue.  Of course, it would help if it was higher, but mine has never been above 4.5 since diagnosis and I have had plenty of energy after the first couple years, and then even more after dosage reduction.  Now on low dose (20mg) Sprycel no fatigue issues at all.

[trailcml]

I had an overall sense/feeling of fatigue for 2 years in spite of light or heavy exercise while on Gleevec 400mg. It wasn't until I reduced my dose to 300mg that the fatigue is barely noticeable. It's still there but very manageable. I echo the other comments that the dose reduction worked out well for me. I noticed the change almost immediately. My RBC is at 4.33 and only slightly up from my last CBC test.

[missjoy]

Sometimes we just need to work our way through the fatigue during the first couple years and get to dosage reduction after PCRU for a while.  That is one of the better solutions.  Exercise is a good idea.  Hard to get started.
 
His RBC is not low enough to cause extreme fatigue.  Of course, it would help if it was higher, but mine has never been above 4.5 since diagnosis and I have had plenty of energy after the first couple years, and then even more after dosage reduction.  Now on low dose (20mg) Sprycel no fatigue issues at all.

Hi Trey ,

You mentioned "get to dose reduction after PCRU for a while. "What about if the PCRU has been in and out with low level positive blips? Would you recommend to stay on full dose or lower dose?

Thanks !

[Trey]

If someone hangs around low levels but not PCRU they can experiment with dose reduction if the side effects are bad enough.  But if they can tolerate the TKI drug well I would wait for a while after continuous  PCRU to drive the leukemic levels down even further.  PCRU is not zero.  So there is something below zero which cannot be measured.  And getting to near absolute zero would have curative advantages, if they exist.

[missjoy]

Thanks Trey ! It is a good advice and makes sense to me. Have a great Easter!

[beno]

I am just over a year on Sprycel and still fight the fatigue.  I've found moderate exercise to help the most.  If I lay around, it doesn't get better, but if I push myself too hard on the exercise, it gets even worse.  For me, 30 minutes medium intensity exercise or an hour walking seem to be the sweet spot.