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#1 MsLaLa

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Posted 22 September 2015 - 11:26 PM

I'm wondering if I should be taking iron pills for my anemia? Dr said once I start the Sprycel and my WBC count gets better then that should correct my anemia. Anyone on iron pills, just curious?
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#2 Billie Murawski

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Posted 22 September 2015 - 11:43 PM

Hi Ms LaLa, When I went on Sprycel I had a lot of trouble with anemia, I had to get several rounds of iron infusions, I couldn't take the iron pills. My iron is okay now but I have been eating a lot better. I guess these meds all affect us differently.  Billie



#3 hannibellemo

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Posted 23 September 2015 - 01:13 PM

MsLaLa,

 

I thought I remembered Trey saying something that for those of us with drug induced anemia, iron supplementation may not be the way to go. So, I looked it up and have pasted the portion dealing with this subject from his blog below:

 

Anemia
 
CML drugs do a good job suppressing leukemic cells, but for most of us our blood cell counts can go too low, especially after a month or so on the drug. That causes many of us to live on the low end of normal or below normal for WBCs, RBCs, hemaglobin (HGB), hematocrit (HCT) and sometimes platelets (PLT). The result is a type of drug induced anemia.  
Many of us with CML have for the longer term what is called Anemia of Chronic Disease, which shows up as low hemoglobin (HGB) and low RBCs, but most of us do not have low amounts of iron in the body. Docs will often look at a person with low HGB, especially women, and jump to the conclusion that they need more iron. For most of us with CML that is not the case, and too much iron can be harmful (which is why multivitamins with iron must be kept away from small children due to iron overdose concerns). 
The reason that our HGB is low is often because our red blood count (RBC) tends to be low. Red blood cells can only hold a certain amount of iron (HGB), so adding more iron to the body will not make the HGB rise under these conditions. A quick way to check this for yourself is to look at your RBC, and if it is low, your HGB will likely be low as well. Also, we take an iron supplement every time we take Gleevec, since the rust colored coating is indeed rust (iron oxide).
So the need for more iron for those of us with CML should be determined by more than HGB levels. If it were me, I would ask the doc to perform a Serum Transferrin Receptor test (also called Serum Iron test) for body iron levels before proceeding with an IV iron infusion. This is because iron can be toxic at high levels, so I am just urging a bit of extra caution. I realize it is difficult to try to tell a doc how to treat us, but they are only human. And although it may seem odd, fatigue can be a symptom of too much iron:
http://www.irondisor...TooMuchIron.asp
Here is some additional info on this issue to discuss with your doc, if you wish:
"ACD [Anemia of Chronic Disease] is seen in a wide range of chronic malignant, autoimmune, leukemic, inflammatory, and infectious disease conditions ... Supplementation with iron for those with ACD is not warranted until the underlying cause of disease is cured. Harmful pathogen are nourished by iron and cancer cells require iron to grow and proliferate."
http://www.irondisor...ders/Anemia.asp
http://www.irondisor...-Deficiency.asp
http://adam.about.co...ts/000057_6.htm
[Note warnings about who should receive iron infusion injections.]
Overview of low iron causes:
http://en.wikipedia....iron_metabolism
 
So it sounds like your onc agrees with this information.  :) 

Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#4 gerry

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Posted 23 September 2015 - 07:27 PM

I'm wondering if I should be taking iron pills for my anemia? Dr said once I start the Sprycel and my WBC count gets better then that should correct my anemia. Anyone on iron pills, just curious?

 

May depend on why you are anemic - when I had my initial BMB I had no iron stored in my bones due to heavy periods. My doc put me on iron supplements, which I have stopped taking since I no longer have periods. I now have too much iron, but have only stopped taking supplements about a month before I had the test.



#5 RayT

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Posted 23 September 2015 - 07:37 PM

I've been on Gleevec for 18 months now and also have anemia. Hematocrit usually runs in the mid 20s. During a hospitalization last month my oncologist informed me that not only am I anemic, I'm also iron deficient. He's put me on 325mg ferrous sulfate 2x/day. I wouldn't take iron supplements unless your doc has specifically identified an iron deficiency.

#6 tiredblood

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Posted 23 September 2015 - 08:15 PM

I'm wondering if I should be taking iron pills for my anemia? Dr said once I start the Sprycel and my WBC count gets better then that should correct my anemia. Anyone on iron pills, just curious?

I agree with your doctor.  I can't imagine taking iron pills while on a TKI.  I find the TKI to be constipating enough by itself.  I guess if your levels were low enough to not be adequately perfusing your body, then you may need some supplementation.



#7 MsLaLa

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Posted 23 September 2015 - 08:49 PM

I have an appt. with my dr tomorrow, I'm going to ask once more just to be sure. I'm always tired.
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#8 scuba

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Posted 23 September 2015 - 09:32 PM

I'm wondering if I should be taking iron pills for my anemia? Dr said once I start the Sprycel and my WBC count gets better then that should correct my anemia. Anyone on iron pills, just curious?

 

The only way to know if you are low on iron is if you are low on iron. Have a blood test that shows your Ferritin level:

 

Normal Results

Normal value range is:

  • Male: 12-300 ng/mL (nanograms per millilter)
  • Female: 12-150 ng/mL

The lower the ferritin level, even within the "normal" range, the more likely it is that the patient does not have enough iron.from: "https://www.nlm.nih....cle/003490.htm"

In my own case, my ferritin level was 30 ng/ml  when I first tested - and I was anemic (low rbc, hemoglobin, hematocrit). I have since been taking 18 to 36 mg Ferrous iron per day, in the morning on an empty stomach with 500mg vitamin C. My Ferritin level after a month rose to 60 ng/ml. I can now run better and faster than I did before taking the iron. Also, my hemoglobin and hematocrit are normal. My RBC is close to normal.

 

Supplementation is good when you know your levels through testing. Without testing, you're guessing. Don't guess. Know. 

 


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#9 Billie Murawski

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Posted 24 September 2015 - 02:56 AM

I can never remember the name of my dx, it's called iron deficient anemia and my lowest no was 3 and now I'm at 8 I haven't had an infusion since around last December. I having those toxins put in my body but I had no choice. The iron pills made me very sick. 3 weeks after my dx when I was on 400mg of Gleevac I had to have 2 transfusions. That was when I knew nothing about cml and I was to sick to ask. I'm so thankful for this board.  Now they check my ferritin level every couple months.  



#10 Antilogical

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Posted 24 September 2015 - 02:23 PM

My Ferritin plummeted to 6 at the end of last year for no good reason.  RBC, Hgb & MCV were also low.  I had 2 iron infusions earlier this year, and the Ferritin is back up to 20.  I'm taking a supplement now, and I'll find out how effective it is in another 6 weeks.


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#11 chriskuo

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Posted 24 September 2015 - 03:57 PM

Iron deficiency is not the main reason for anemia among CML patients, although it is higher among menstruating females than among others.

 

It is important to get the anemia diagnosed properly.



#12 R0f03l

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Posted 24 September 2015 - 06:52 PM

I'm wondering if I should be taking iron pills for my anemia? Dr said once I start the Sprycel and my WBC count gets better then that should correct my anemia. Anyone on iron pills, just curious?

 

Already tried to meet this need with food and not supplement?
 
I at the beginning of treatment with Gleevec I had anemia and provide back this lack with everyday foods, such as beans mo lunch and dinner, brown sugar in desserts, beet juice with cabbage and orange flesh that contains iron.
 
Me homemade food could solve this problem. You do not have time to cook?


#13 Gail's

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Posted 24 September 2015 - 08:06 PM

My ferritin is 5. I've been reading and with a normal red blood cell count, normal hematocrit and hemoglobin level, they consider this an absorption problem. All my counts are normal except ferritin. I think it might be the fact that I've had colon disease for years and had a large section of my colon removed a few years ago. The answer seems to be high dose iron supplements in the hopes that with so much available, even a sick gut will absorb enough. I'm afraid to take the huge dose because of GI issues from gleevec and my gut issues. So I looked up and found a couple of products that have high levels of bio available heme iron. Supposed to be gentler.

I eat well, cook most of my own food, but if absorption is the problem, it's not enough. Oh, and my pharmacist looked it up and said take it on an empty stomach with vitamin c separate from my gleevec. It does interfere with absorption of gleevec which seems weird since, as Trey has said, the gleevec tablets have an iron coating. Pharmacist said it's just a minuscule amount of iron in the coating.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#14 R0f03l

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Posted 25 September 2015 - 07:45 PM

My ferritin is 5. I've been reading and with a normal red blood cell count, normal hematocrit and hemoglobin level, they consider this an absorption problem. All my counts are normal except ferritin. I think it might be the fact that I've had colon disease for years and had a large section of my colon removed a few years ago. The answer seems to be high dose iron supplements in the hopes that with so much available, even a sick gut will absorb enough. I'm afraid to take the huge dose because of GI issues from gleevec and my gut issues. So I looked up and found a couple of products that have high levels of bio available heme iron. Supposed to be gentler.

I eat well, cook most of my own food, but if absorption is the problem, it's not enough. Oh, and my pharmacist looked it up and said take it on an empty stomach with vitamin c separate from my gleevec. It does interfere with absorption of gleevec which seems weird since, as Trey has said, the gleevec tablets have an iron coating. Pharmacist said it's just a minuscule amount of iron in the coating.

 

 

Gail What is the problem you in the gut and what is the disease of the colon? This problem was due to Gleevec?



#15 Gail's

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Posted 27 September 2015 - 03:27 PM

No,, R0f031, the colon issue was diverticulitis that started a long time before I had cml. Ironically, the infections caused with flare ups actually cause higher white blood cell counts, so I took antibiotics frequently to treat supposed infections when it was actually increasing because of cml. I had about a foot of my colon removed in a sigmoidectomy about 5 years before the cml diagnosis.

Needless to say, I'm really not surprised that the worst of my gleevec side effects are vomiting and diarrhea. Just blessed with a cranky gut, I guess.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#16 R0f03l

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Posted 28 September 2015 - 08:24 PM

No,, R0f031, the colon issue was diverticulitis that started a long time before I had cml. Ironically, the infections caused with flare ups actually cause higher white blood cell counts, so I took antibiotics frequently to treat supposed infections when it was actually increasing because of cml. I had about a foot of my colon removed in a sigmoidectomy about 5 years before the cml diagnosis.

Needless to say, I'm really not surprised that the worst of my gleevec side effects are vomiting and diarrhea. Just blessed with a cranky gut, I guess.

 

oh yes I did.
 
If you need anything, I'm at your disposal .
 
Hugs





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