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Jul 28, 2017 Latest post:
Sep 20, 2018
Dear Friends and Family,
Thank you so much for visiting our CaringBridge site. We also want to thank all of you for the love, care and concern over the past couple of years but most specifically since September of 2016. Below is the story of the journey so far and we went into great detail about the diagnosis because it is such a rare combination of diseases that Duane has. The reality is that the rarity and combination of the diseases is very concerning and we will keep you posted as much as we can. So here is the story....
Approximately 2 1/2 years ago Duane was to see his general practitioner for a routine physical. The doctor noticed an increase in his red blood cell indices and sent him to a hematologist/oncologist as a precaution. The hematologist/oncologist diagnosed him with polycythemia rubra vera, which is a condition where there are too many red blood cells circulating in the blood system. Too many red blood cells are abnormal and can cause clots which could lead to heart attack or stroke, therefore treatment was warranted. The first treatment choice was an oral medication called Hydroxyurea, which was taken only a short time because it caused a severe decrease in the circulating white blood cells (dropped to less than 1,000, with normal range at approximately 5,000-10,000) and platelets (dropped to less than 20,000, with normal range at approximately 150,000-400,000). Your white blood cells are needed to fight infections and the platetlets are responsible to clot your blood, which if left this low could cause one to bleed to death at the incident of a small cut, etc. Next plan of attack was to do a therapeutic phlebotomy (removal of a pint of blood) on a monthly basis to eradicate the increased red blood cells, which actually worked quite nicely for about a year. Although there is no cure for polycythemia rubra vera, it is managable.
In September of 2016, however, on another routine exam, there was noted to be a slight amount of blood in the urine which warranted a cystoscopy of the bladder. There was a tumor removed which the pathologist identified as a mastocytoma. After the mastocytoma was discovered the hematologist/oncologist ordered a bone marrow biopsy which demonstrated a disease called systemic mastocytosis. This disease is an extremely rare disease (1 in 10,000) and it is a disease of the bone marrow whereby there are abnormal cells, called "mast cells", being manufactured in the blood which are destroying all normal blood cells. At that time we decided to seek advice from a hematologist/oncologist at Mayo Clinic who is now working closely with a hematologist/oncologist in Rice Lake, to provide treatment.
To further complicate the problem was another discovered diagnosis called myelodysplastic syndrome, which is also a blood disease whereby there are abnormal white cells called "blast" cells circulating and also destroying the good blood cells. The current regimen of treatment is to the treat the MDS (myelodysplatic syndrome) as this is the most severe of the two disorders. Treatment consists of a Chemo-cancer drug, called Azacitidine, which is administered subcutaneously in the abdomen for 7 days in a row every month to destroy those "bad" blood cells. The plan is to receive 4 rounds of this treatment and then reassess with the Mayo specialist. Duane just finished his 2nd round the first part of June. He actually feels much better after he has the treatment, and his blood tests are improving slightly.
To further explain what these diseases are doing to his blood cells here are some of his blood count numbers...when he was first diagnosed with the polycythemia rubra vera his hemoglobin (these cells carry oxygen to all of your organs) level was between 17 and 18...recently it has been as low as 8.7 (normal range for a healthy male is 14-17). When your hemoglobin falls too low you become extremely tired, fatigued and confused, as your brain and other organs are not receiving adequate oxygen to function. Consequently, when you receive chemotherapy it wreaks havoc on your white blood cell count, sharply decreasing it. If the white cell count becomes too low, infections can develop and on Sunday, July 2nd we made a trip to the ER and Duane was diagnosed with pneumonia, which he is now being treated for. Two days later, on July 4th, another visit was made to the ER and he was diagnosed with severe dehydration. This past Sunday I had to call the ambulance because he became extremely nauseous, diaphoretic, fainted and was vomiting. We spent another four hours in the ER and the only diagnosis the doctor could establish was severe dehydration, which is common while on chemotherapy.
Duane has another 2 rounds of chemo - one in July and and one in August. The doctors will then be able to test the affects of the chemo and give a plan of action going forward. The diseases have been very taxing on the family and especially on Duane. As you all know, he loves to be constantly busy, working always and has a hard time relaxing but these diseases have really hindered his lifestyle. We are hopeful that although there is no cure for these diseases, we are able to find a manageable course of action so he can return to his normal lifestyle.
Again thank you so much for your concern, prayers, and thoughts. We welcome the positive feedback and will keep you posted.