MDS Diagnosis?

[barathke]

My father, a Vietnam Veteran (100% disability) exposed to Agent Orange (documented) has been on Hospice care for approximately 1 year and 7 months due to cancer of unknown primary. His health has slowly degraded from 2010 until present with numerous amounts of hospital visits in between. He has been on ongoing dialysis patient for a long period of time. We personally believe the end is near unfortunately.

We reviewed released pathology reports and noticed one mentions “Please correlate clinically and rule out myeloproliferative/myelodysplastic
syndrome if warranted” in Diagnostic comment on 6/22/11. I researched this and if I understand this correctly, this pathology report has indications of early stages of MDS.
——————————————————————————————————————————————
(NOTE)
Patient Name: XXXXXXX
MR#: XXXXXXX
Location: GAS
Date Reported: 6/22/2011
Specimen # XXXXXXX

Clinical History
None Given

Source:
Peripheral Smear

Gross Description
Auto Blood Count [Adult Normal Ranges] WBC 4.2 [3.5 – 10.5] K/UL, RBC 2.81
[3.90 – 5.03] M/UL, Hemoglobin 9.3 [12.0 – 15.5] GM/DL, Hematocrit 27.2 [34.9
– 44.5]%, MCV 97.0 [81.6 – 98.3] FL, MCH 33.2 [27.0 – 31.0] PG, MCHC 34.3
[33.0 – 37.0] GM/DL, RDW 15.6 [11.9 -15.5]%, Platelet count 88 [150.0 – 450.0]
K/UL,

Manual Differential (200 cell count) [Adult Normal Ranges] Seg. neutrophils 56
[42 – 75]%, Bands 2 [0 – 3]%, Lymphocytes 31 [16 – 52]%, Monocytes 10 [1 –
11%]%, Eosinophils 1 [0 – 7]%,

Microscopic Description
In addition to the above, teardrop cells and red cell fragments are identified
and a rare blast is seen.

Final Diagnosis
Peripheral blood, smear review:
Moderate macrocytic anemia and moderate thrombocytosis with several
hyposegmented neutrophils and morphologically unremarkable platelets.

XX/6/22/2011

Diagnosis Comment
Please correlate clinically and rule out myeloproliferative/myelodysplastic
syndrome if warranted.

***Electronically Signed Out***
XXXXXXXXXXXXXXXXXX

XXXXXXXXXXXXXXXXXX
XXXXXXXXXXXXXXXXXX
XXXXXXXXXXXXXXXXXX
XXXXXXXXXXXXXXXXXX

CPT Code(s)
A: XXXXXXX
——————————————————————————————————————————————

From our researching thus far and personal experiences, we have never heard anything about MDS or any other blood related disease and/or cancer. We have also inquired about blood related disease and/or cancer to doctors and nurses on many occasions and was told cancer originated from gallbladder or surrounding area.

I am no means a doctor or medical professional, but I believe my father was misdiagnosed with fibrillary glomerulonephritis and was put into dialysis “business”. The cancer was never detected on multiple different types of scans due to it being a blood and bone marrow disease. Blood continually flows through kidneys causing them to shut down. The symptoms of MDS fit my father’s situation more than any other medical issue that has occurred. His WCB (white cell blood) count was also climbing rapidly from 8/12 through 3/13; we were in out and out the hospital multiple times during those dates.

Here past medical history as of 2/22/12:
——————————————————————————————————————————————
PAST MEDICAL HISTORY
End-stage renal disease, diagnosed in December 2010 with fibrillary glomerulonephritis and global sclerosis.
History of hypertension with admission for hypertensive urgency in September of last year.
History of acute heart failure at the admission for hypertensive urgency. BNP 5000.
Chronic low back pain status post laminectomy, on chronic narcotics.
Chronic anemia.
Chronic thrombocytopenia.
Chronic hepatitis C. Attempted to do treatment with gastroenterology, however, not successful for resolution
of hepatitis C.
Hearing loss.
Posttraumatic stress disorder related to Vietnam War. Was exposed to Agent Orange.
Hypothyroidism secondary to hepatitis C.
Anxiety and depression.
——————————————————————————————————————————————

Our family has always felt there were many unanswered questions regarding my father’s health. My mother and I (son) are the primary caregivers for John with Hospice support when additional assistance help is needed.

Thank you for taking the time to read this.

Any answers or comments to these questions would be greatly appreciated:

What are your thoughts about my father’s situation?

In his poor health, would doing a biopsy from his hip to remove bone marrow be hard on him? My father would like to determine why he has been ill for the last 3 years and we never received clear answers beyond – Cancer of Unknown Primary.

Would an autopsy help determine if MDS was a contributing factor in to his poor health? Percentage? Also would MDS show up if it progressed to AML?

Thank you in advance.

[MDSF Expert]

Dear Baratheke,

We are sorry to hear about the struggle your father has faced over the past 18 months. It is always difficult to have a loved one, particularly a parent suffer. We do appreciate his service to our country.

Based on the available information it is not possible to determine the cause of the abnormalities in his peripheral blood. There are many potential causes of low blood counts, including renal failure or other autoimmune disorders. Agent Orange has been suspected as a potential contributing factor to a number of cancers, we do not currently have specific data about the link between Agent Orange and MDS.

The diagnosis of MDS requires a bone marrow sample. The procedure can be done with little pain if adequate local anesthesia is provided. Bone Marrow sampling at autopsy may not reflect the true status of the bone marrow due to rather fragile cells that must be put on slides and stained very quickly to avoid degradation. It is sometimes possible to gain additional diagnostic information from special studies on the peripheral blood. You may want to discuss this with your father and his health care team.

We wish you and your family the best

[sidd yadav]

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[Sharon Hains]

DO NOT LET THE DOCTORS GIVE YOUR DAD A BONE BIOPSY UNLESS IS HE IN A SURGICAL SETTING AND KNOCKED OUT. IT IS A VERY PAINFUL PROCEDURE, AND CONSIDERING HIS CURRENT HEALTH, IT WOULD BE CRUEL TO PUT HIM THROUGH IT WHILE AWAKE.

[rar]

I have had 4 bone marrow biopsies. If they give local anesthetics and they use an electric drill it is not as painful as a bee sting.

A BMB is the primary tool to diagnosis of MDS.

I was pre Vietnam, I had benzene exposure and MDSREAB2. It took the VA a year to deny my disability claim. It will take an estimated 2.5 years to see my notice of disagreement.

I don’t understand what your questions are.

Ray

[Author]

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