ET & HU

[Smoothie2020]

Hi everyone. I’m new to the community and have found so much good info here. My issue is I’ve had a trace of blood in my phlegm some mornings and told my hematologist/oncologist about it and he just said let him know if it gets worse. I was confused because that side effect is listed as “ report to dr immediately”. Has anyone else had this happen? I’ve been taking HU for about 18 months.

[Bridie123]

Hi there, I would point it out to your haemotoligist that it is on the list of contraindications and that you are concerned. My concerns were about pains etc, in my legs, my haemotoligist was very dismissive saying she had never heard of anyone experiencing this and they give out hydroxycarbonide like sweets!

I pointed out that it is on the list of sideaffects and would like to see a neurologist and having done so ,it has been confirmed I have pheriferal neophathy.

Sincerely hope that yours turns out to be nothing, but keep pushing if it keeps happening.

🤗

[Jamesxyz in reply to Bridie123]

Hi,

Just curious, wher did you read that leg pain was a side effect of Hydrea?

Thanks

[hunter5582 in reply to Jamesxyz]

Here is one source. See Peripheral Neuropathy under Serious Reactions.

online.epocrates.com/drugs/...

[Mazcd Partner MPNVoice]

hello Smoothie2020, so sorry that you are experiencing this, have you also reported this to your GP, it might a good idea to contact your GP as well to ask for advice about this, it is always best to get any symptoms checked out as they may not always be related to your MPN or your MPN medication. Best wishes, Maz

[Smoothie2020 in reply to Mazcd]

Yes I did tell my GP and was sent for chest X-ray. All was clear.

[Mazcd Partner MPNVoice in reply to Smoothie2020]

Best to speak to your haematologist again about this. Best wishes, Maz

[hunter5582]

Blood in exudate can have a number of causes. You are correct to be concerned. Suggest that since your chest x-ray was clear, consultation with a otolaryngologist would be in order, This could be a number of things, including a respiratory infection. These would need to be ruled out in order to figure out whether this is a HU adverse effect.

You are correct that is could be a HU adverse effect, but it needs proper assessment to determine this. Suggest it is time to be assertive in getting to the bottom of this symptom.

All the best moving forward.

[ja66ck]

Hi, I have the same issue, but I beleive that mine issue is more weather related as it seems to only occurs during the cold weather months when the air is dry. I also seem to have allergy issues for the same reasons. I do believe that these issues may be exacerbated by my MPN. I have PV and have been on Hydroxyurea going on 3 years. The issues described have been occurring prior to my Hydroxyurea usage. I have an appointment with my MPN specialist tomorrow to go over my Bone Marrow test results and will discuss with her to get her input.

[Smoothie2020]

I am so glad I joined this group. I had never heard of MPN doctor. I have one in my area and I’m going to set up an appointment with him.

My hematologist wanted to do bone marrow and I had actually scheduled, but my mom died a week before and my life was turned upside down. I didn’t have it done before my dr appointment so he drew blood to test for the genes and I came back Jak2 positive. Since I’ve found an MPN I’ll talk to him about having it done.