How were you diagnosed? Is the wait normal?

[MaryM]

I am a stage 2 breast cancer patient and I finished chemo in December of 2005 and radiation in March of 2006. I have been extremely fatigued since chemo. My internist found that I was hypothyroid as of last summer and that helped a little. But the exhaustion is worse than ever. I used to be able to exercise, but now, seriously, I can barely make it thru the day. I don’t work, but I do have a young child as well as a teenager. My husband helps a lot.

When I saw my oncologist in March, she remarked how well I looked, but asked me not to lose any more weight. Then my husband told her I was exhausted all the time and frequently sick. She looked at my blood counts a little more closely and then said that if they didn’t improve by Sept., she would do a bone marrow biopsy to see if I had MDS.

My questions for this forum are mainly about how you were diagnosed? Is this normal to wait 6 months? Should I press to do it sooner? I am not excited about doing a biopsy if I don’t need it, but I so want to feel better. You know sometimes I might worry about how long I have left, especially when I have a five year old daughter to raise, but most of all I want to have the energy to enjoy whatever time I have left–which could be a lot or not. But living always tired, not wanting to get up in the morning, not being able to drive into town because I’ll be too tired to drive back, not being able to read to my daughter–this is a QOL issue.

I am going to give you my most recent blood counts
wbc 3.5 L
rbc 3.66 L
hgb 12.7
hct 36
MCV 101. H
MCH 34.7 H
MCHC 35.
Platelets 180.
MPV 10.
RDW-SD 52.8 H
Neutro auto 50

My oncologists tell me I’m not anemic because my hgb and hct in low normal. But they also say there is something wrong with my counts–that they should have rebounded from the chemo and that I shouldn’t be so tired. Actually my counts were better after my chemo than now and they seem to progressively get worse.

Does anyone have any advice? I am most curious what led to different people’s diagnosis?

Thanks,
Mary
Abs neut 1.75

[eve]

hi mary

can’t give you any advice – can just tell you of my dad’s experience

my dad was monitored for about 2 years before he was given a diagnosis of mds – at first he was just labeled anemic and given procrit shots – then finally after a bmb they put a name to his disorder and said that he had mds

initally the only blood line that was affected were his platelets and then the hgb started to dip and he needed txs – he was then in the clinical trial for what is now called vidaza – it worked by keeping his need to txs further apart

wishing you good luck

eve

[Jack_dup1]

Hi Mary,
I had a routine physical and the family Doc. noticed Plt were 70 and Whites 3.2, she immediately sent me to a hematologist/oncologist, they did a BMB that day and diagnosed me three days later with CMML.
That was four years ago.
Jack

[riley]

Hi Mary,

My father’s first symptom was fatigue in July 2003. In November 2003, he became ill with what seemed to be a recurrent stomach virus. All of his counts were normal in November 2003 and early January 2004. He did not have abnormal counts until late January 2004.

He was losing weight quickly (50 pounds in the first 50 days of 2004), so in January his doctor sent him to a GI specialist, an infectious disease specialist, and an oncologist.

He had a BMB on January 20, 2004, and was diganosed with MDS on February 3. A second opinion gave him a prognosis of 3 weeks. A third opinion at Mayo resulted in a second BMB and diagnosis of a unique MDS that they had never seen before and couldn’t find any record of anyone having any where in the world. They strongly disagreed with the 3-week prognosis and gave us 9 treatment options.

My father opted to return to Atlanta and receive treatment at Emory. He had a third BMB so his Emory hem/onc could run his own tests and feel confident in the treatment plan that he was going to recommend. He confirmed a diagnosis of a unique MDS.

My father received two rounds of very strong chemos, ones that are typically used to treat leukemia. He achieved partial remission and lived 17+ months past his initial diagnosis — long enough to meet his first grandchild and love her through the first year of her life.

Nicole

[jaxem]

hi, mary

my wife had breast surgery with prophylactic chemo (adriamycin or doxorubicin) & radiation following. after 5 years, her 6 month blood tests started dropping slowly which prompted her oncologist to advise my wife to see a hematologist. she had no symptoms of tiredness and/or sickness like you. it’s rare but secondary mds/leukemia may develop after 5 years, not one or two. your levels aren’t that bad. i would think that you should see a hematologist soon to see what’s going on with your blood & to give you some anxiety relief.

good luck to you in quickly resolving this problem.

[Author]

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