Dedicated to the memory of Mike Oliver

2009 Update

  

Pre February (written by Michelle)

I can’t believe that it has been a few years since I’ve updated this site.  It’s amazing how the time flies…Thank goodness for my partner in crime, Joy, on keeping this going.  
During this time, we have been blessed to meet the POEMS group that Alan Suher organized.  Recently, he published a web site that provides great information and contacts for POEMS patients.  It’s amazing, considering that there was nothing like this available when I was frantically searching for answers almost 6 years ago.  You will find that the Links page has been updated with his web site link.   Thanks again, Alan!  
A lot has happened in our family since the last posting.  As with everyone else, we have had happiness and sadness.  
Dad is now 54 years old.  
Dad has been blessed with grandchildren: Mikey (2), Troy (2), and Shyann (1).  
Krystle graduated college and is a Radiology Tech.  She will begin nursing school this summer and we are all so proud of her. Sadly, we lost Grandma Betty, dad’s mom early this year.  We miss her dearly and feel it especially during this time.

 

February

Note: Mike had a routine 6 month check in October 2008.  After reviewing the results, a concern was raised that the POEMS may be back.

  • 25 – Had multiple tests today to see if POEMS is back.  For documentation purposes, the tests are: MET bone survey + long bones, CT scan of chest, abdomen, and pelvis with oral and intravenous contrast, and bone marrow biopsy.
  • Instead of only publishing today’s blood cell counts, I thought it would be beneficial to provide that with history.  Keep in mind that the December numbers were during the stem cell transplant timeframe.
 

 

Hgb

Hct

RBC

MCV

MCH

MCHC

RDW

WBC

Platelet

MPV

 

2/25/09

12.7

38.2

5.15

74.2

24.7

33.2

18.7

4.5

213

6.5

 

10/2/08

11.5

34.4

4.49

76.6

25.7

33.5

17.4

4.5

171

6.6

 

12/28/03

 

 

 

 

 

 

 

10.8

28

 

 

12/26/03

9.8

 

 

 

 

 

 

.7

26

 

 

12/23/03

10.7

 

 

 

 

 

 

.1

6

 

 

12/21/03

9.7

 

 

 

 

 

 

.3

37

 

 

12/19/03

10.2

 

 

 

 

 

 

2.1

111

 

 

12/12/03

12.6

 

 

 

 

 

 

6.7

427

 

 

10/8/03

15.5

46.3

6.04

76.6

25.6

33.5

16.6

7.3

415

6.3

 

Key:

 

Defined as…

Normal range…

Hgb

Hemoglobin – transport molecule for oxygen

Males: 14 – 18

Females: 12 - 16

Hct

Hematocrit – to proportion of blood volume that is occupied by red blood cells

Males: 42 – 54

Females: 38 – 46

RBC

Red Blood Cells – carries oxygen

4.2 – 5.9

MCV

Mean Cell Volume – a measure of the average red cell volume that is reported as part of a standard complete blood count

86 – 98

MCH

Mean Cell Hemoglobin – a measure of the concentration of hemoglobin in a given volume of packed red blood cells

27 – 32

MCHC

Mean Cell Hemoglobin Concentration (see MCH)

32 – 36%

RDW

Red Cell Distribution Width

11 – 15

WBC

White Blood Cells – infection fighting cells

4.3 - 10.8

Platelets

Platelets

150 - 400

MPV

Mean Platelet Volume – measurement of the average size of platelets

 

(derived from Wikipedia List of Medical Abbreviations and Mayo Clinic Jacksonville)

 

March

  • 11 – Test results in-POEMS confirmed.  The treatment expected is a combination of revlimid and a steroid called dexamethasone for a period of 6 to 12 months.
    Note:
    Dexamethasone is a potent synthetic member of the glucocorticoid class of steroid hormones. It acts as an anti-inflammatory and immunosuppressant. Its potency is about 20-30 times that of hydrocortisone and 4-5 times of prednisone.
  • 16 – Met with cardiologist for consult on fluid in lungs and next steps  
  • 23 – Lab work then first ever thoracentesis procedure.  This was done on the left lung; 1 liter plus was removed.  For those who may have to face this, Mike was thrilled to report that it was nowhere near as traumatic as he feared.  It was a very simple, relatively painless, and quick procedure.  Expect soreness for a day or so after.   

 

April

  • 9 - More issues with breathing and lungs; a 2nd thoracentesis was performed on the left side. A liter and 3 ounces was removed.

  • 10 - A 3rd thoracentesis on the right side; a liter removed.

  • 17 - Oncology appointment to discuss treatment.

  • 27 - START TREATMENT! We are hoping for the fairly immediate gains in neuropathy and fluid reduction. 

Revlimid

Daily (3 weeks on; 1 week off)

Decadron

Weekly (3 weeks on; 1 week off)

Labs

Weekly

Oncology Check-ins

Every 4 weeks

Pentamidine Breathing Treatment - A machine called a nebulizer turns the medicine into a fine spray that you breathe into your lungs. You will need to use the nebulizer for about 35 to 40 minutes, or until the medicine in the dose chamber is gone.   This is to prevent pneumonia.

Monthly

Capex Shampoo – May be needed to treat a common side affect of dry, itchy scalp.

As needed

 

June

Note: Mike was in his second round of Revlimid treatment when we hit a bump in the road.

  • 12 – Mike went into ER due to extreme weakness.  (see table for counts)  Several tests were run; Mike was determined to be neutropenic (no immune system).  Mike was admitted into hospital in a reverse isolation room.  Chest x-ray negative.  Mike received 2 pints of blood.
  • 13 – A team consisting of internal medicine, hematology/oncology, and pulmonary was formed to determine what caused the extreme drop in Mike’s counts and difficulty in breathing.  Nuclear Med Lung Scan was negative.
  • 14 – CAT Scan with contrast of lungs to check for clot came back negative.
  • 15 – Echo performed to assess damage to the heart; not material changes were found.  Pulmonary became primary focus, specifically pulmonary hypertension.
  • 16 – Cleared by pulmonary.  Revlimid was the cause.  Mike goes home.
  • Decisions made:
      • Discontinue Revlimid
      • Continue current Decadron schedule
      • Follow up with oncology in 2-3 weeks to determine next steps
  • Below are the counts leading up to and through Mike’s hospitalization.

 

 

Hgb

Hct

RBC

MCV

MCH

MCHC

RDW

WBC

Platelet

MPV

 

4/30/09

10.8

32.0

4.27

75.1

25.4

33.8

17.3

4.7

175

7.5

 

5/6/09

11.6

35.5

4.65

76.4

25.0

32.7

18.1

6.1

162

8.7

 

5/13/09

10.8

32.6

4.25

76.7

25.5

33.2

18.8

4.2

98

8.6

 

5/20/09

10.6

31.1

4.04

77.0

26.2

34.0

19.9

3.8

132

8.8

 

5/27/09

10.3

29.9

3.84

77.9

26.8

34.3

21.3

4.3

112

7.3

 

6/3/09

9.9

28.7

3.70

77.5

26.8

34.5

21.8

2.8

67

8.6

 

6/10/09

9.8

28.3

3.60

78.6

27.3

34.8

22.4

2.8

49

8.9

 

6/12/09

8.4

25.1

 

 

 

 

 

1.8

43

 

 

6/15/09

10.1

 

 

 

 

 

 

2.0

65

 

 

6/16/09

10.4

 

 

 

 

 

 

1.6

83

 

  •  22 – Mike moved to a new oncologist, Dr. Abubakr.  He will work with us to form a new team of doctors to handle his case.  We are looking forward to working with him.
    Mike will continue 40 mg of decadron, 400 mg of bactrum (antibiotic), and will reduce to 20 mg of lasix through July 22.  On July 22, he will do labs and we will determine the next steps.
     

 

Hgb

Hct

RBC

MCV

MCH

MCHC

RDW

WBC

Platelet

MPV

 

10.5

32.6

3.9

83.6

26.9

32.2

21.5

2.22

133

8.8

 

July

  • 22 – Went to Dr. Abubakr for labs and a follow up appointment and received EXCELLENT news!  Mike is back in “remission”!  His hemoglobin dropped and he needs to get an aranesp shot to boost red cell production.

Note: Aranesp is a man-made form of a protein that helps your body produce red blood cells. The amount of this protein in your body may be reduced when you have kidney failure or use certain medications. When fewer red blood cells are produced, you can develop a condition called anemia.
Aranesp is used to treat anemia (a lack of red blood cells in the body).

  • 27 – Mike had his first aranesp shot.  There is a choice of either arm or stomach for the location; it burns when it is administered.  For the first time, there is a 30 minute waiting period to ensure there is no negative reaction.  Mike accepted the shot with no issues; we are hoping for fast results and increased energy!

     

    Hgb

    Hct

    RBC

    MCV

    MCH

    MCHC

    RDW

    WBC

    Platelet

    MPV

    9.4

    29.2

    3.39

    86.1

    27.7

    32.2

    19.7

    4.11

    160

    8.7