~ Living with POEMS ~

Dedicated to the memory of Mike Oliver

Background

Mike was 49 years old at the time of diagnosis. The diagnosis of POEMS syndrome was almost 9 months in the making and was difficult to obtain.

December 2002

The weirdness truly begins here. Mike starts to notice that he is tired and dizzy. We notice that he is lying around more and is not as energetic as usual.

He tells us for the first time that his “bones” hurt.

February 2003

By this time, we know that something is wrong. We talk with several people at Mayo and determines that Mike should see a nephrologist.

25 - Mike has a visit to the hospital for high blood pressure and headache.
25 – Had a heart cath.
26 – Had an EKG.
27 – Mike had an upper GI to determine the cause for the nausea and an MRI of the brain (with and without contrast).
27 – Had an MRA of the head and neck.
27 – Had a CAT scan of the head.
27 - Had to cancel the first appointment with the nephrologist at Mayo because he was in the hospital.

March 2003

Mike is driving less frequently and is feeling more tired. His dizziness is increasing and his blood pressure is high.

Mike goes into the hospital and undergoes the following:

1 – Liver ultrasound – Mike discovers that he has an enlarged spleen;
3 – CAT scan of the abdomen and pelvis (we learn that Mike has lesions on his pelvis); and
7 – Nuclear med body scan.
19 - Another visit to the emergency room for stroke level blood pressure.
23 – Stress test.
25 – Finally gets in to see the nephrologist. He adds to the blood pressure medicine.
27 - A vascular test;
28 - Blood test; and
31 - PET scan.

April 2003

Mike is leaving the house less frequently and is very uncomfortable. We are beginning to wonder what is wrong and why he is not getting better.

3 – One of many appointments to the neurologist.
4 – One of many visits to the lab for blood work.
7 – The neurologist orders a special test that is sent to Rochester for review.
21 - Mike turns 49! He receives two new pair of jeans to accommodate his shrinking waistline.
23 – Mike sees an ear, nose, and throat specialist and undergoes several tests (including one to check for vertigo).

May 2003

10 – We have a birthday party for Mike’s mom, Betty, who turns 75. See the photo page for a picture of dad and Gidget, his beloved dog. He has lost approximately 25 pounds and his face is thinning out.
29 – Mike is diagnosed with acoustic neuroma. It is a very small tumor in his right ear on a nerve very close to his brain. The doctors told us that this could explain his dizziness and nausea. We are all shocked and do not know what to think. The doctor told us that he would need to come back in approximately 6 months to determine if it grew or changed. We digest this information…

June 2003

Mike is not getting any better. His blood pressure is hovering at stroke level, his migraines are terrible, and his nausea and dizziness are causing him extreme discomfort.

· 6 – Mike has a mild heart attack and is admitted to the hospital.

· 7 – Mike has a heart cath.

· 9 – Mike’s oldest daughter, Michelle, turns 29!

· 10 – Mike’s youngest daughter, Krystle, turns 18!

· 24 – Mike goes to the emergency room for high blood pressure and chest pains. They determine that he had another mild heart attack and he has another heart cath.

July 2003

Mike has lost more weight, close to 40 pounds. He rarely leaves his bed and the neuropathy in his feet and legs is getting worse. He describes it as a stabbing pain.

It is getting very hard on us because we see him getting worse and we feel like we are not close to knowing what is wrong.

3 – Michelle goes with Mike to see an endocrinologist at Mayo. We discuss his blood sugar levels and current medication, glucophage. The endocrinologist determines that we need to change his medication to actos. We wonder if the diabetes is the reason for his condition.
10 – Mike goes to a urology appointment for further investigation. The urologist shocks us with the news that his heart is operating at 35% capacity and that he may need to have a heart transplant. (Luckily, we find out later that this is not needed)
15 – Mike visits the cardiologist and nephrologist for further follow up and investigation. The nephrologist decides that Mike should see an oncologist to review his case.
30 – Mike has his first oncology appointment. The doctor walks in and shocks him with the news that he believes he knows what is wrong with him. We hear about POEMS syndrome for the very first time and obtain initial information on what it is.

August 2003

Mike is down more weight, close to 60 pounds.

1 – Mike goes to have a bone marrow biopsy to confirm POEMS syndrome. In addition, Mike sees the eye doctor at Mayo for his annual exam. He tells the eye doctor to check him for papilledema, a swelling of the optic nerve, which is another indication of POEMS. The doctor confirms that he has papilledema. We are one step closer to determining the cause of the problem.
11 – Betty and Michelle go with Mike to learn of the results of the bone marrow biopsy. We are convinced that we will receive an answer to the question that has been haunting us for so long. Unfortunately, this was not to be. The bone marrow biopsy came back inconclusive. We were crushed and wondered how much longer we have to go through this.
20 – Mike goes to the hospital to take care of all of his pre-op needs.
21 – Mike goes into the hospital to get a lymph node biopsy. It is a very emotional day for our family. We are all there and anxiously await information.
26 – Mike is finally diagnosed with POEMS. We are so relieved to just know something. Now, we finally have a name to this thing. The oncologist gives us a run down of what to expect: intravenous chemo every three weeks and prednisone (a steroid) every day. This would occur two to three times and then he would go for a stem cell transplant some time in October.

Notes

The information above has been provided to give you an idea of what Mike went through to determine what was wrong with him. As you can see, it was very difficult and we had many “road blocks” along the way. Mike was told, among other things, that he had hypertension, high blood pressure, out of control diabetes, a bad heart, cancer, bone cancer, that he was just depressed, and that there were just no answers to his problems.

However, we decided that we were going to find out what was wrong and try to help him get better. We were persistent and had the help of several dedicated doctors. We hope this will encourage you to keep the faith and continue your search for answers.