Back on The Hydrea – Ed’s PV Journey


Hi everyone! Yesterday was Ed's follow up with his MPN (a doctor that specializes in Myeloproliferative neoplasms (MPNs), which are also known as myeloproliferative disorders). 

Good news and not so good news

Unfortunately, this was the very first time that I had to sit in the car while Ed went into an actual appointment. We were both very put off by this. I typically ask all of the questions and handle the paperwork. He was a trooper though. He made it through lab work and the doctor's appointment and was able to keep me updated via text the entire way.

I know, you would think these were my appointments and not Ed's, right? I do take them very personally. His health is of the utmost importance to me.

Let's get to it

A few weeks ago, he had his phlebotomy, during that time, all of his blood levels were elevated. Yesterday, some of the levels remained elevated, however, he did not need the phlebotomy.

Due to the fact that his RBC and WBC (red and white blood count) remained higher than they should be, his MPN made the decision, along with Ed, to place him back on Hydrea.


For those that are unaware of what Hydrea is, Hydrea is also known as hydroxyurea.

Hydrea belongs to a class of drugs called antimetabolites. It is a chemotherapy drug.

It works by slowing or stopping the growth of cancer cells in the body, and by helping to prevent the formation of abnormal red blood cells. It can bring the numbers of white blood cells and monocytes down to normal.

Hydrea is used to treat polycythemia vera (a disorder of the bone marrow) by reducing the red blood cell mass, in Ed's case.

Hydrea is also used to treat psoriasis, chronic myelogenous leukemia (a cancer of the white blood cells), ovarian cancer, melanoma (a form of skin cancer), and certain head and neck cancers.

Hydrea has shown to benefit people with sickle cell anemia (an inherited blood disorder) by reducing the frequency of painful sickle cell crisis episodes and the need for blood transfusions. (https://www.everydayhealth.com/drugs/hydroxyurea)

There are risks involved, the same as with any type of "chemotherapy" drug.


  • Nausea, vomiting, or diarrhea
  • Loss of appetite
  • Constipation
  • Weight gain
  • Sores in the mouth or throat
  • Pale skin
  • Rash
  • Mild dizziness
  • Headache
  • Hair loss
  • Darkening of the skin or nails
  • Fever, sore throat, cough, congestion, or other signs of infection
  • Unusual bruising or bleeding
  • Vomit that's bloody or looks like coffee grounds
  • Bloody or black, tarry stools

Less Common Side Effects

  • Fast heartbeat
  • Shortness of breath
  • Extreme tiredness or weakness
  • Ongoing pain that begins in the stomach but may spread to the back
  • Itching, pain, redness, swelling, blisters, or sores on the skin
  • Yellowing of the skin or eyes
  • Pain in the upper right part of the stomach
  • Flu-like symptoms
  • Numbness, burning, or tingling in the hands or feet
  • Painful or difficult urination
  • Seizures
  • Hallucinations
  • Confusion
  • Severe headache
  • Severe or persistent diarrhea, nausea, loss of appetite, or vomiting
  • Signs of a severe allergic reaction (may include hives, rash, itching, chest tightness, or swelling of the face, lips, tongue, or throat)

We have to carefully handle the medication also. We have to ensure that the medication is taken at the same time daily, wash hands before and after, the Hydrea cannot be placed in with other medications.

When Ed was first diagnosed with Polycythemia Vera, he was on Hydrea and receiving the phlebotomies almost weekly. Luckily, he has spent over a year without Hydrea and over a year without a phlebotomy, until a few weeks ago.

Our hopes and his MPN hopes are that the Hydrea will place Ed back into a position where his body can stabilize and he will not be so fatigued. The ultimate goal is to live a long and happy life.

There you have Ed's most recent update on his MPN appointment and a glimpse into his recent health. He will go back in a couple months.

If you have questions about Polycythemia Vera or you are interested in learning more about PV, please do not hesitate to comment or check out some of our links below.

Thanks for staying involved




do not fear

Colorful Chaos The Journey

Not everything is always in black and white. Join us on our journey as we battle incurable invisible illnesses. We are seeking mental freedom as we prepare to unwind and unravel amongst nature. We raise awareness for Polycythemia Vera and Invisible Illnesses such as Mental Health, Rheumatoid Arthritis, Fibromyalgia, Diabetes, along with a variety of other “silent” struggles that we may deal with along the way. We are not going to let these illnesses hold us down. During our journey we need support. The support of each other, family, friends, followers, readers, and fellow, adventures! Enjoy our photography and stories. You can support us through PayPal and our Esty Shop!

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