low reticulocytes?

[marymac]

Hello,
I am a 3 yr breast cancer survivor with some questions. My counts have been off since I finished chemo with some things like MCV getting worse. However, as my oncologist points out, they are stable. Low, but stable. I get my blood checked every 3 months; usually, my doc just orders a cbc. Last time, she checked my reticulocytes as well. I have incredible fatigue--much worse than my rbc would indicate. If I were working, I would have to quit. As it is, I feel I can't take care of my children and home. So, I'd like to know if there's a reason for this fatigue or am I just giving in? My doc has been mentioning MDS for the last year and a half, but she said in March that if I had MDS, my counts wouldn't stay stable--they would drop dramatically. Is this true?

My onc in on vacation until mid-Aug and the nurse is unable to answer my questions. Would someone tell me if my most recent counts, particularly the reticulocyte , is anything to be concerned about? Should I change doctors?

Here are some numbers:
reticulocyte 0.2
Abs retic .0076
rbc 3.69
hgb 12.3
hct 36.8
MCV 100.8

My wbc is up for the first time in 2 1/2 yrs to the normal at 4.7. However, my abs lymph is up to 1.83. In Feb. my wbc was at 3.0 and my abs neut was 1.21. My onc said not to worry and I didn't. But I developed shingles a month later.

Thanks for any advice anyone can give--
Connie

[Dick S]

Originally Posted by marymac

Hello,
I am a 3 yr breast cancer survivor with some questions. My counts have been off since I finished chemo with some things like MCV getting worse. However, as my oncologist points out, they are stable. Low, but stable. I get my blood checked every 3 months; usually, my doc just orders a cbc. Last time, she checked my reticulocytes as well. I have incredible fatigue--much worse than my rbc would indicate. If I were working, I would have to quit. As it is, I feel I can't take care of my children and home. So, I'd like to know if there's a reason for this fatigue or am I just giving in? My doc has been mentioning MDS for the last year and a half, but she said in March that if I had MDS, my counts wouldn't stay stable--they would drop dramatically. Is this true?

My onc in on vacation until mid-Aug and the nurse is unable to answer my questions. Would someone tell me if my most recent counts, particularly the reticulocyte , is anything to be concerned about? Should I change doctors?

Here are some numbers:
reticulocyte 0.2
Abs retic .0076
rbc 3.69
hgb 12.3
hct 36.8
MCV 100.8

My wbc is up for the first time in 2 1/2 yrs to the normal at 4.7. However, my abs lymph is up to 1.83. In Feb. my wbc was at 3.0 and my abs neut was 1.21. My onc said not to worry and I didn't. But I developed shingles a month later.

Thanks for any advice anyone can give--
Connie

You're not alone as I have the same incredible fatigue problem and my Dr. and Onc. both say I shoud not have this problem.....................but I do. And as yet, no medication if any kind.

As of last CBC:
WBC...3.7
HGB....10.9
MCV...102.5
Abs Neut...0.88
Hematocrit...36.5
Don't have a reticulocyte reading.

Hang in there, I do.

[Zoe's Life]

Connie,

Your retic is low, as is your abs retic, though I don't come up with the same figure--I have abs retic as 0.19, which is barely below normal. Retics are reticulocytes. Basically, they are baby red blood cells. The bone marrow releases red blood cells which are not fully matured. They are larger than mature cells. The retic count tells how well your bone marrow is producing new red blood cells. Try http://www.mdcalc.com/absretic for a calculator. The absolute retic number is important in anemia. Under normal circumstances, the body responds to anemia by producing more rbc's. So while the retic may look normal (0.5-1.5), if the body is working to compensate for the anemia, the abs retic should be 2 or above. I used 39 for normal hct as that is mid way on the range for normal hct. You might check your lab work, it should have a range, plug the middle number in for normal hct.

You should have ranges for all your other counts also. Here are the values my hematologist uses:

rbc 3.8-5.1
hgb 11.7-15.5
hct 35-45
mcv 81-100--mine has been up to 112, but is in the normal range currently

I think your abs lymphs are OK, my range is 1-4.8

It must be frustrating to not be able to talk to the oncologist. Is this the oncologist who took you through your breast cancer? Do you feel comfortable with her? Is there another oncologist in the practice you can speak with? I wouldn't be too worried at this point. Though I am sure it would ease your mind to speak with someone.

Why has she suspected MDS? One other thing to look at is what were your counts like before cancer? What is a baseline for you?

Hope my rambling helps.

Zoe

[Marlene]

I would also find out if they checked your B12, folate, b6, iron and copper serum level lately. All can effect your blood production. Your B12 should be at least 500. Many will tell you it's ok if it's between 200 and 500 but that is based on out-of-date information. It needs to be above 500 especially in the presence of symptoms like yours. And it is so easy to correct a low B12 level through oral supplementation. Always ask them for the specific results so you can judge for yourself if you think you need to bring up those levels.

Chemotherapy depletes nutrients and will disrute your body's balance. John too had shingles and his nutritionist said that it is tied to insufficient levels of the "b" vitamins. So we added in a B complex and extra methyl-colbamine form of B12. B vitamins are needed for healthy nerves and blood.

Zoe makes a good point about what your counts were before chemo. It would be good to have a baseline of everything when you were "healthy", when you were diagnosed with cancer and then what it is now. Unfortuately, docs never check vitamin status when we're healthy and not even when were ill. So what's optimal/normal for you when healthy may be well above a "low normal" test result when you're not healthy. IMO, I think this is one area overlooked by docs these days.

Marlene

[marymac]

Thanks to all of you who replied. Both of my oncologists believe my counts should have rebounded by now. My medical onc first mentioned MDS and made it sound like a little cold or infection, nothing really to worry about. When I started finding out about it through other sources and since have had a friend die from it in my cancer support group, I became alarmed. Now, I am really not as worried--it seems my counts are stable or slightly improving. However, the fatigue is unmanageable. I am a 54 yr old woman with a young family and I just can't cope. Well, I can cope,but I've learned to rest frequently and spend my energy wisely.

Zoe, are you saying the lab made a mistake with my reticulocyte values? The report I have clearly states 0.2 for reticulocytes and abs retic at .0076. It also references them as low. Because my onc is away right now, I was only able to talk to her assistant, who told me the doctor notes that said she was ordering the retic count because my MCV was consistently high. The assistant said she would be doing a bmb if the reticulocytes were high. But she is brand new at the job, and frankly, I don't believe she understands. I do wish I could talk to my onc, but I was hoping that in lieu of that, perhaps someone could tell me if the low reticu. values perhaps show why I am constantly exhausted even if my hgb and hct are ok? When I google low reticu, I seem to keep reading that my bone marrow is failing to make rbcs? But why would the other hct/hgb be just low normal?

Marlene, my internist checked all of those last year, and I was so healthy, it blows my mind. My B12 was off the charts for high. She refuses to investigate it any further because she believes it's in the realm of oncology/hematology.

My oncologist has compared my right before treatment counts with what followed, and I was normal.

I have been fearing getting the bmb done because it really looks painful. She wants to do it in the office--she says it feels like getting a tooth drilled. And that I will just feel a little prick. In one way, I want to know, because I'd like to have an excuse for the fatigue and inability to function in everyday life; on the other hand, I think that as long as my symptoms seem so mild other than frequent infections and debilitating fatigue--why worry?

Marlene, is your husband's mds a result of prior chemo? Zoe, is yours? One more thing my onc said several months ago is that I could just be one of the 5% of people who never bounce back from chemo--that my counts are permanently low. But the other things like MCV,RDW-SD and MCH concern her.

Thanks for listening to my rambles...
Connie

[Marlene]

John had Aplastic Anemia, not MDS. But he went through some intense chemo and lot of drugs which took a toll on his body. Fatigue was major. What's interesting is that before treatment when his HGB was 5.5 he was not fatigued. And he did really well with just red cell transfusion with regards to fatigue. But after chemo, things were different. I have two friends who recently finished chemo/radiation for breast cancer and fatigue is problem for them. Both have normal blood counts. So something else is at work here.

Last December, John started acupuncture. It has made a big difference in his stamina and fatigue level. He then added some nutrients to improve his mitochondria funtion (helping his cells to convert glucose to engergy). Again, a major difference for him. We kept thinking that his fatigue would ease as his red cells came up but there was no difference when his HGB was 10 or 11.

On the nutrient check....did your GP check your homocystine and MMA levels? That would be the only way to really verify that your body is using the B12. Also, if you were supplementing with B12, then it will be high. Most people take the cyno form of B12 and may not convert it to
the active form. Assessing B12 via serum is the least accurate test.

Regarding the bone marrow biopsy. Since you are already nervous about it, demand sedation. John will never get another without it. Everyone is different and some feel nothing, while for others, it's not so pleasant. The thing is, you don't know until you get one. For him, the second part of the procedure was bad for him...the marrow aspiration. There's a recent thread on BMB biopsies and you'll see the varied responses.

Marlene

[Dick S]

Originally Posted by Marlene

Regarding the bone marrow biopsy. Since you are already nervous about it, demand sedation. John will never get another without it. Everyone is different and some feel nothing, while for others, it's not so pleasant. The thing is, you don't know until you get one. For him, the second part of the procedure was bad for him...the marrow aspiration. There's a recent thread on BMB biopsies and you'll see the varied responses.

Marlene

As regards to the BMB, with a local, I didn't mind the liquid marrow aspiration (two of them) too much they only last 3 or 4 seconds each, but when they do the bone core that just flat hurts more and last about 18-20 seconds. It's about all you can take, trust me.

[Zoe's Life]

Connie,

I don't want to say the lab is wrong. I am not a medical professional. I must be honest and say I don't really understand. Your hgb and hct seem to me to be in the normal range, but maybe your lab uses different ranges. Maybe your H and H were higher before cancer and they expect them to rebound to previous levels. Your MCV is a tad high, and even by my calculations your retic is low. For some reason I am just not coming up with the same numbers, but they are trained medical professionals, and I am not. If I were in your shoes, I would be asking questions so I could understand better. But that is because I am obsessed with understanding what is happening to my body.

For what it is worth, the aspiration is the hardest part for me. Drilling through the bone was not too bad.

Zoe