Hydroxyurea adventure: The first six weeks

Yes, those are almonds in my pill holder. It's not a good idea to
put the HU in with your other meds in case of capsule breakage,
so the almond reminds me to take the HU. I got some paper pill
cups in a package of 500 to help avoid handling the caps. I just
shake one from the bottle into the cup and take with lots of water.
I also keep the HU in a separate sealed bag. That way, the pills
can't escape if I forget to put the bottle cap on tight.

Readers who follow Got Essential Thrombocytosis on the FB page (link at right) may recall that I started hydroxyurea (HU) February 2. I'm doing just fine.

But because there is sometimes a lot of fear about "chemo," and HU is still the first line of treatment for most ET patients around the world, I thought it might be helpful to capture my own experiences on it in real time.

Remember that your experiences may not be like mine. If there's anything this disease teaches us, it's that nothing is "typical."

January 12: My cardiology nurse (I have a heart valve problem not related to ET), asked how I was doing on the hydroxyurea. What? I thought Dr. Blood wanted me on hydroxyurea only if my spleen showed enlargement back in November. It didn't, so I assumed that even though my platelets had moved to about 750, I was still stable. Emailing Dr. Blood.

January 19: Dr. Blood called today and said, yes, she wants me on HU and to await instructions from Oncolology Nurse S. "We don't just call that in to your local pharmacy any more," Doc said. She said Nurse S would answer all my questions.

In one way I am kind of relieved to be going on the HU, sick of waiting for the inevitable shoe to drop or, worse, get a clot, which means blood thinners and who knows what else.

But I am also concerned about how HU will affect me. Most people who take HU say there’s an initial adjustment period. That means I will probably be tired and may have nausea/diarrhea, flu-like symptoms, or hair loss, which, even though I'm not really vain, bothers me. There is also the specter of long-term HU use causing leukemia. Why can't the researchers nail that down?

My husband is upset about this, says he’ll be with me every step of the way, and he never says things like that. It’s worse for him than me because he can’t really do anything. Plus his blood pressure has been really high, and I worry that he’s going to have a heart attack. So I told him if he wanted to do something for me, go get a check up.

Ha, ha. What good is having cancer if you can’t use it for leverage. (UPDATE: Still no check-up appointment for husband. Grrr.)

January 19: Nurse S hasn't called all week, so I called her. She said she doesn’t handle "something like HU because it's not really chemo." I told her Dr. Blood said the HU had to go through her. She was busy and said Nurse C would call me.

Meantime, due for a platelet check so off to the lab: 751. LDH elevated at 260, but not over 300, which it has been in the past. I guess the upward platelet trend is what is worrying Doc. But who knows? Always a guessing game with these people.

While I was getting blood check, Nurse C left a message saying she had called in my HU to Rite Aid, go get it tomorrow, and call if I have questions. Well, yes, I have questions. Question #1 is why is this going to Rite Aid when Doc said they don't dispense it that way anymore??? But it's Friday after 5 p.m., so hoping the pharmacist will be able to help me.

Meantime, I spent a sleepless night worrying about the cost of the meds, and what side effects I should report, whether I will need more frequent monitoring and etc. I had to remind myself that this is just a road bump, that it will even out, other people go through this, stop whining.

Trying to stay rational and positive.

January 29: Picked up the pills yesterday. 500 mg every day. Not going to start these until Thursday, when my work week ends. I asked the pharmacist to run through side effects that should be reported. He dithered on his computer, and said, “Oh, boy, I don’t want to scare you.”

I told him I didn't scare easily, so he went over the package insert and offered helpful pill-handling instructions. Also said not to take the Compazine included with the HU (huh?) unless I felt nauseated. I said Dr. Blood said there would be no side effects. He said, "Hmm." At least he was trying to be helpful. And I was glad to have the Compazine in case.

I guess the good news is that the two prescriptions only cost $11 with insurance. So that’s a big load off my mind. (The HU is only $33 out of pocket, so if I had to pay for that without insurance, I could.) Yay, that. 

Meantime, I have the Black History Month display for school to finish this week and some students to do reports for. I'm not satisfied the display, so it's 1 p.m., and I'm still gluing and and cutting in my pajamas. 

Later: I got my Black History Month stuff done and will roll that over tomorrow. I put out a query for advice on the HU to the U-M nurse line and on my FB page. People are coming through with some really good ideas. I owe lots of Hail Marys to lots of people. I am truly touched! I feel I am going to come through this OK (as opposed to just saying I’m going to be OK).

February 3: U-M Cancer Answers sent info re symptom reporting. They're good and usually get back to you in 24 hours. Why do I have to dig for answers to things all the time? Took my first dose last night. Felt a little spacy, but it wasn't unpleasant. Some mild acid reflux. No nausea. Slept fine. I did feel quite groggy for most of today. Mostly watched movies, did five minutes on my exercise bike to clear my head.

February 5: Emailed Nurse C and told her I was fine so far and asked if I should get blood checks more frequently. I usually get them every three months. She replied quickly and said get them every month now. Hope she called the order into the lab, otherwise, my insurance won't pay. A little tired, but I'm tired a lot anyway, so really any fallout from the HU is pretty negligible.

February 12: Certainly feel able to go to work, but glad I took the week off in case things didn't go very well. I told my work partner why I would be gone. She was really welcoming when I returned, and that was nice. Continue to feel OK. I want to say my brain fog and energy are even up a bit. Is it too early to tell that? Or is it just that I'm so relieved that I'm doing OK that it's given my spirits a boost?

March 2: Had first blood check since taking the HU. Platelets are down 100 points. Is that enough? I thought that stuff was supposed to work in 10 days. Where did I even get that idea? Something I read? In the insert? No. LDH is back in the normal range. Hope that is good news. However, something called RDW is running high now. Emailing Nurse C.

March 4: Nurse C responded, "Fabulous you are headed in the right direction, continue on the same dose of hyddroxuria and we will continue to monitor your labs. Everything else looks good too." Good news, but poor spelling and punctuation never gives me a lot of confidence. RDW means "red cell distribution width." As near as I can figure, this means that we have a lot of red blood cells running through our circulatory system (duh), and many of them may be quite large. I will write more about this, but, like the LDH, RDW seems to be an indicator that, yup, we have lots of platelets, and some of them are quite large.

March 5: Picked up my HU refill. Mr. Pharmacist was there. "I've been thinking about you," he said. "How are you doing?" I told him I was doing just fine and thanked him for helping me. "How long will you have to take this?" he asked.

Probably forever, dude. But I'm going to be OK.

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