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MDS Myelodysplastic syndromes

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Old Thu Jul 19, 2018, 07:02 PM
cdseibold cdseibold is offline
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MDS and Arimidex (Anastrozole)

I have been on watch and weight for 6 years with my intermediate mds.
I had a mastectomy for breast cancer in March and put on arimidex.
It is an anti-estrogen type drug; I had been on tamoxofin a decade ago with no problems.
In the two months I have become more and more tired all the time. Now I need to nap and nap and am too exhausted to do the simple household chores.
My internist ordered a CBC and my numbers are in the dumper all of a sudden. White, red and platelets have shifted down.
My hematologist and I agreed for me to stop the arimidex. I am praying that it is a big part of the problem. My hematologist does not believe it is a high probability to be the culprit.
I am probably looking at a bone marrow biopsy in the next month. Golly my favorite test.

My Dr ordered a new test that I don't seem to have before. Reticulocyte. It is a measure of immature red blood cells. Normal is under 1% and I am at 9. But
googling has only confused me. Articles suggest that MDS patients have low numbers and high is very unusual for MDS. That sure sounds backwards.
Any thoughts on this type of test.

He also tested my thyroid level and folic acid level which were normal. Ruling out other possible causes of fatigue.

I am the sole caretaker of my disabled husband and adopted son with mental health issues. So very concerned about their care if I am unable to continue doing. Yes i have hired some help for house and outdoors.

Thanks for any input.

Carol
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Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
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Old Thu Jul 19, 2018, 08:37 PM
Neil Cuadra Neil Cuadra is offline
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Carol,

I'm sorry that you have to deal with this, but I'm glad that your MDS has been stable for so long.

Anemia is one of the possible side effects of ARIMIDEX, but I don't know that pancytopenia (having all three blood lines low) would be a likely result. Still, ARIMIDEX is a primary suspect since it's new to your regimen and you've already ruled out some other possible causes.

From what I've read, increased reticulocytes with MDS isn't common but isn't unheard of. For example, slow maturation of the immature red cells could be causing a buildup. The clues in your bone marrow are the likely key, so enduring a bone marrow biopsy should give you some answers.

Good luck to you, your husband, and your son.
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Old Sat Jul 21, 2018, 04:20 AM
cdseibold cdseibold is offline
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Arimidex

Found some papers on side effects of Arimidex. 100 plus reports of pancylopenia. So I do think it is a possible culprit. Only time will tell.

Yes I agreed to a new bone marrow biopsy on Tuesday. Oh joy. My hematologist did agree to have the samples split and half to Mayo and half to Sanford lab. Also the genetic testing will not be by FISH but my better kerotyping (sp?) Not looking forward to test but definitely results. Praying that there are no blasts found.

Appreciate your feedback.

Carol
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Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
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Old Fri Jul 27, 2018, 02:28 PM
cdseibold cdseibold is offline
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Good news

It has been almost 2 weeks since I stopped the arimidex. My white counts have returned to my usual levels just as the edge of the lower limit. My platelets have doubled from 44 to 88. Red levels are hanging low and no improvement, but I do feel much better and am not sleeping all day everyday.

I had a bone marrow biopsy done this week. Very excited that my blasts remain at 2 % or less. Wow, not AML, which has been my concern

Carol
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Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
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Old Fri Jul 27, 2018, 10:25 PM
Diana H Diana H is offline
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Smile Arimidex

Thanks Neil and Carol share the information. ARIMIDEX can affect all three blood counts, very interesting!
Glad your counts are up.
Lifespan of RBC is about 100 days, it may take longer for your red to come up.
Wish you great health and energy!
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Female, age 66, dx MDS RAEB with 15-20% blasts 9/2017. Blood counts have normalized after 3 rounds of Vidaza. Finished six cycles of Vidaza. No treatment since March 10, 2018. Currently monthly CBC, will resume Vidaza when blood counts are low.
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Old Tue Jul 31, 2018, 02:49 PM
cdseibold cdseibold is offline
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Red blood counts

Oh boy if it takes 3 months to get back to my usual level summer will done and winter will be starting. That is a little discouraging. But much better than AML.
Need to have patience.

Thanks for input.
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Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
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Old Sat Aug 11, 2018, 06:14 PM
cdseibold cdseibold is offline
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Update

Red and white blood counts have moved up and I feel so much better. I was able to walk to barn and around the house without falling on my face on the bed.
FYI I did file a serious side effect report with the FDA on line. Not too hard to do. So keep that in mind if you have side effect problems.

Happy weekend.
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Carol, age 75, diagnosed with MDS 9/2012, on wait and watch, recently had blood values drop probably due to Arimixdex, values coming back, but still serious fatigue, recent bone marrow text showed only 2% blasts
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