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How long before side effects from Hydrea start?
Blood Cancers & Disorders | Last Active: 3 days ago | Replies (63)Comment receiving replies
This med didn't do much toy hair but has destroyed my life in every other way. I started on it last January and felt like I had as dying a little bit each week. I stopped the med abruptly 3 weeks ago ER my PCP and an appt with a new hemo/oncologist for this Monday. The other DR??? Never even called or sent a letter inquiring where I have been since I truly believe he is a quack. I don't know if I am going through withdrawals or what because I am so sick I can't explain since stopping the poison and I never felt that way before being on HU. The Dr never cared how I felt and stressed I would be on it for life. My PCP said no Dr should act that way and if you need to be on something for life it is the Drs resp to make you comfortable and find an alternative med not insist you be kept on something making you sick. I have even had normal platelets at times before HU and this Dr said it didn't matter. He never did a BMB and just went by the blood labs. I studied this med because I worked as a phlebotomist, lab and EKGs in the hospital and it seemed to irritate him if a asked questions. He said to another patient I was told that no one questions him! Hope you don't get to bad of symptoms and all does work out for you.
Replies to "This med didn't do much toy hair but has destroyed my life in every other way...."
What were your bad side effects? I don’t think I read the specifics. Blood cancers suck!
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Good morning, @jello13577 Reading back through some of your previous posts, I see that you’re scheduled for an appointment with a new oncologist this month. You certainly got off to a rocky start with your previous doctor so I truly hope you have a much better experience.
I’m sorry to hear you had such an extreme reaction to the HU over the past year and that your doctor wasn’t responsive to your needing to change your treatment plan. We all react differently to meds and fortunately there are alternatives to HU.
Well, hopefully you can put all of that behind you with the new doctor. I had a similiar experience with one of my providers and was fortunately was able to make a change. While I really wanted to throw my previous doctor under the bus, I knew the new appointment wasn’t the place to do that.
We have limited time with our doctors. So if I may offer some suggestions, have a little notebook or make notes on your phone of what you want to discuss. It will help the appointment stay on task.
It’s ok to touch briefly on what has happened with the HU experience and your previous doctor’s dismissivness. That’s basically why you are seeking new counsel. The new doctor can’t change the past or what’s happened. But they can help you move forward. So try to be open and allow the new doctor to ask questions and take direction of the appointment from that point on.
You have every right to ask questions and seek clairification. You’re also rightfully gun-shy of treatments from your past experince so don’t be shy about talking through suggestions of any new meds being offered.
If you’re interested, there’s a helpful discussion in the forum with tips from other members on “How to get off to the best start with a new specialist”.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
Janet, what was your original diagnosis?