How long before side effects from Hydrea start?

Hi Lori,
Thank you for your advice. I am very nervous about the new appt but I need someone to be kind this time and have some sympathy for his patients, my PCP says this guy is a great listener and I have read so many great reviews on him. My dx with only labs no BX as ET. My platelets varied at the highest 700 then would be normal then would be 500 etc. I have a lot of inflammation in my body from CKD since I was a child and he dismissed that plus systemic osteoarthritis.
Like I said in my other posts he will not let anyone second guess him. I was on 500mg m-f, then I talked him down to 4 days a wk etc until it reached one day a wk and my side effects were never letting up and he care less. The HU worked instantly but I was sick as a dog and still am as I came off of it and I never felt that way even before the HU. So I hope this new Dr will be more thorough and make sure what is going on. Thanks for everyone that has answered. Take care to all. Janet

My husband was diagnosed with primary myelofibrosis 1 month ago. The doctor hasn’t stated him on a treatment yet. His platelets are extremely low, he has had 6 platelet transfusions. It is a very scary journey. If anyone has any experience with this please comment. We go back to the doctor Wednesday and hopefully he will began treatments.

What were your bad side effects? I don’t think I read the specifics. Blood cancers suck!

Welcome to Connect, @dax1million. Myelofibrosis is one of several conditions that is associated with MPNs…myeloproliferative neoplasms. That’s a mouthful for group of blood conditions where the bone marrow is producing too many of a particular type of blood cell whether red/white/platelets.
Primary myelofibrosis or MF, is the condition where the bone marrow itself is impacted. Myelofibrosis is caused by the buildup of fibrous tissue in the bone marrow. The fibers become thick and affect the bone marrow's ability to make healthy blood cells. In your husband’s case, he is no longer able to make enough platelets.

This is all so new to both of you so I’m very glad you joined Connect. We have several members with MF and all are happy to answer questions you might have. There’s also a great deal of information in the conversations. You may have to skim over some that aren’t relevant but most are helpful, some with links to MF articles.

Let’s get you into the discussion group for Myelofibrosis.
Here are several links for you to peruse. Some are older conversations but you can reverse the order by switching to from ‘oldest to newest’ to bring up more current discussions.
Myelofibrosis https://connect.mayoclinic.org/discussion/myelofibrosis-24a025/
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What are treatments for myelofibrosis?https://connect.mayoclinic.org/discussion/mylofibrosis-1/

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This is a list of all the MF discussions:
https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=Myelofibrosis#discussion-listview
It’s only been a month since your husband’s diagnosis so I’m sure you have a ton of questions. I see there’s a doctor’s appt coming up Wednesday. It may help to bring a little notepad or make notes on your phone of questions you and your husband would like to ask the doctor so you don’t miss anything you wanted to talk about! Appointments can get off track quickly. ☺️

I’m sure you’ll both learn more about this blood condition and treatment at the appointment. If you don’t mind sharing, would you please let me know what you find out?

Hydroxyurea tends to lower blood cells, so it's unlikely to help with low platelets. JAK inhibitors may help with that. Myelofibrosis can present with either hyperproduction of blood cells or hypoproduction, for unknown reasons; basic to both presentations is that the blood cells are not being produced properly for what the body needs. Ron

Ouside of losing about a fourth of my hair and the occasional stomach ache - no other side effects.

I took hydroxiurea for a long time but it did not help much
I did not lose any hair
Good luck to you

Lori, our appt yesterday was not very good. The Doctor said he could see some leukemia cells and seemed not wanting to suggest anything. So he has started him on Vidaza for 7 days then off for a month to see how he reacts to chemotherapy. His platelets are still very low, having 2 platelet infusions a week. We know this isn’t curable, but encouraging him for hope and more time.
Dax1million

Hi @dax1million. Try not to be too discouraged after yesterday’s appointment. I know, that’s easier said than done. Just hearing the words that your husband has leukemic cells was unsettling. But realistically your husband was only very recently diagnosed with MF and hadn’t been on any treatment. So it wouldn’t be unusual to have leukemia cells present.
He’s now starting a round of Vidaza which is a very effective drug for killing cancer cells. Sometimes that medication is paired with another. But this first application will allow the doctor to evaluate the effectiveness of reducing the cancer cells and see how your husband tolerates the medication.
He may still have platelet infusions for a while yet and possibly a red blood transfusion. Chemotherapy can reduce the over all amounts of blood cells, along with the cancer cells, within a few weeks after the last treatment. Then the healthy cells regenerate and the numbers start climbing again. That’s a fairly standard reaction to a cycle of chemotherapy.

So hang in there! Both of you! This is all new and uncertain but you’ll get through one day at a time. I think you could use a little encouragement. So I’d like to introduce you to a couple of members who have been taking Vidaza and Venetoclax for a few years and remain in remission from AML. Please meet @lindagi and @dancouclanel4
Both have shared their positive and encouraging experiences, along with others in this discussion:

AML successful treatment
https://connect.mayoclinic.org/discussion/aml-successful-treatment/
This medication has been really successful for so many people who are not candidates for a bone marrow transplant.

We’ve been chatting in the support group with members talking about Hydroxyurea experiences. Since your husband isn’t taking HU, let’s get you over to a more suitable discussion. Here are a couple of options of current conversations.

What are treatments for Myelofibrosis?https://connect.mayoclinic.org/discussion/mylofibrosis-1/
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Myelofibrosis:
https://connect.mayoclinic.org/discussion/myelofibrosis-24a025/
Feel free to post in either of those two discussions where you’ll meet other members with MF.
When is your husband’s first treatment?

You'll never meet us, Dax1million, but all of us are keeping you and your husband in our hearts and prayers.