8 replies to this topic

[shaynalee]

Hubby's blood tests came back, and the meds are making him anemic. He's been supplementing with iron pills, but apparently its not enough. The onc never gave us any guidance on dosage or anything though, he's very vague. Now he wants my husband to have an iv iron infusion, and my husband really does not want to.

Has anyond else dealt with this and been able to fix it without the iv? What brand/type works best and how much?

[Trey]

Being anemic and being low on iron stores are two different things.  Low iron does not cause our low hemoglobin -- it is low red blood cell counts (red blood cells contain the hemoglobin, which contains iron, which helps carry oxygen through the body).  I would not have an iron infusion without having an iron stores test since too much iron is not good for you.  Even then I probably would stick to iron pills. 

 

What are his blood counts?  Most of us had some level of low blood counts during the first year or more.

[shaynalee]

Trey, his numbers are:

Rbc 3.99 (^ from last time)
Hemoglobin 12.4 (^)
Iron 35
Iron % saturation 10
Iron binding capacity 344

He was on a chewable iron that was only 20 mg, because he was in normal range before. Just started 65 mg tablet of ferrous sulfate yesterday.

Also important to mention that he has crohns disease, so the infusion would be a concern for stomach related side effects

[RichCML]

Interesting to me to hear your husband has Chohn's. I have had Ulcerative Colitis for 15+ years prior to being diagnosed with CML. (UC is a sister disease to Chrohn's, for those unfamiliar.)

Chrohn's and UC are both autoimmune disorders. Also I was and still am treating my UC with Azathioprine, an immuno suppressant that has been linked to Lymphomas, particularly in males. I wonder if there's correlation with CML and either the disease of or treatment of inflammatory bowel diseases.

[shaynalee]

Rich, that is interesting to hear that you have UC. He was never on that drug, only a mild corticosteroid called budesonide. We wonder if him developing cml is a combination of the crohns and exposure to benzene

[Trey]

S,

His numbers are just "CML normal".  He does not even need iron pills, but taking small ones is fine.  I would certainly avoid IV iron at his levels.

[shaynalee]

Trey, we definitely need to do something about his iron because since they've tanked, his exhaustion is really bad. He is not in a position to to take time off of work, so he can't even rest (he works for family, and because he doesn't look sick, they act like they think it's all an exaggeration). Is there a specific reason you suggest not doing the iv iron? I tried to do some research but just found a list of possible side effects. Any input from others is always appreciated

[Trey]

Nearly every one of us has major fatigue during the first year.  Some for much longer.

 

There are several types of anemia.  Iron deficiency anemia is just one of them.  We suffer with chronic disease anemia.

 

The reason I personally would not do an iron IV at his levels is simply that low iron is not the real problem.  The real problem is his low RBC.  Low RBC = low HGB (which is inside the RBCs).  So low RBC means less oxygen gets distributed throughout the body.  The red blood cells cannot carry more than a certain amount of iron or oxygen.  They are just short-handed.  And his iron is just not that low. 

 

He can try the iron IV and see if it might make him feel a little better for a short time.  It may work as a short boost, but it will not solve the issue.  The RBC needs to climb, and that just takes time.  The family needs to be told that he is short on ________ blood cells, and he can't do any______thing about it, so he will be ________ tired.  (Add expletives, if required).

 

By the way, a major symptom of having too much iron is also fatigue.  Just pointing that out.

 

Eating more chocolate might make him feel better, too.  I would rather eat more chocolate.  But maybe that's just me.  Not minimizing his issue.  We all went through it.

Edited by Trey, 25 May 2015 - 07:56 PM.

[rct]

Trey, we definitely need to do something about his iron because since they've tanked, his exhaustion is really bad. He is not in a position to to take time off of work, so he can't even rest (he works for family, and because he doesn't look sick, they act like they think it's all an exaggeration).

 

Of course, you have your hair, how can you have cancer?

 

It's the whole world, not just his family.  Good luck with the counts.  They have been a decade long struggle for my Mrs.

 

rct