1. < Blood Cancers & Disorders

After 3 months on hydroxyurea, I am going to ask to switch to Besremi

Posted by eferret @eferret, Oct 5 5:09pm

I was diagnosed with PV in March. When my hematocrit leveled off at around 44 after 10 weeks of phlebotomy, my hematologist put me on hydroxyurea because my white cell count was very high.
I started hydroxyurea on July 3. I don't think it is working very well for me. My hematocrit is now over 47, and my white cell count is still high at 18.
I suspect the main reason it is not working is that my JAK2 burden is 91.3 which is very high, and hydroxyurea does not impact JAK2 burden.

Recently the NCCN approved Besremi as a first-line treatment for PV:
https://www.targetedonc.com/view/nccn-guidelines-add-ropeginterferon-alfa-for-first-line-polycythemia-vera
In recent studies Besremi actually reduced the JAK2 burden every month it was used, and after a few years, some people were able to discontinue PV treatments altogether. Studies have also shown that a high JAK2 burden > 50% can lead to a higher risk of myelofibrosis and venous thrombosis.

Maybe this is all pie in the sky, but what I have read about Besremi sounds good to me.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

janetbender | @janetbender | Oct 6 9:00am

I take 500 mg daily hydroxyurea for ET (CALR variant) - it took me 8 months to adjust. I tried taking it different times of day and settled on mid-afternoon.
Fatigue is the worst side effect for me.
Good luck.

REPLY
1 reply
preacherswife1977 | @preacherswife1977 | Oct 6 4:34pm

I am on Besrimi. I have had 4 injections. I get them every other week. When I had my blood work on 8/12 platelets were over a million. 9/4 they were down to 918. I go tomorrow for another blood draw. My first 2 injections were 100 mcg, My second 2 were 150 mcg. I suspect he will increase them tomorrow to 200 mcg depending on where the platelets are. As of today I have had no side effects to the Besrimi to which I am thankful. I did have reactions to HU and anagralide.

This is a very expensive medication that comes from a specialty pharmacy. I was fortunate enough to get at no cost, otherwise I could not have gotten the medication.

Wishing you the very best.

REPLY
2 replies
eferret | @eferret | Oct 6 5:51pm
In reply to @preacherswife1977 "I am on Besrimi. I have had 4 injections. I get them every other week. When..." + (show)
@preacherswife1977

I am on Besrimi. I have had 4 injections. I get them every other week. When I had my blood work on 8/12 platelets were over a million. 9/4 they were down to 918. I go tomorrow for another blood draw. My first 2 injections were 100 mcg, My second 2 were 150 mcg. I suspect he will increase them tomorrow to 200 mcg depending on where the platelets are. As of today I have had no side effects to the Besrimi to which I am thankful. I did have reactions to HU and anagralide.

This is a very expensive medication that comes from a specialty pharmacy. I was fortunate enough to get at no cost, otherwise I could not have gotten the medication.

Wishing you the very best.

Jump to this post

Thanks for your encouragement. I have an appointment with a hematologist on Wednesday and asked the guys in my bsf group and at church to remember me in their prayers.

REPLY
1 reply
thicksotropic | @thicksotropic | Oct 7 5:33am
In reply to @janetbender "I take 500 mg daily hydroxyurea for ET (CALR variant) - it took me 8 months..." + (show)
@janetbender

I take 500 mg daily hydroxyurea for ET (CALR variant) - it took me 8 months to adjust. I tried taking it different times of day and settled on mid-afternoon.
Fatigue is the worst side effect for me.
Good luck.

Jump to this post

I too found it better to take hydra later in the afternoon , it also helps with any heart burn.

REPLY
preacherswife1977 | @preacherswife1977 | Oct 8 9:06am
In reply to @eferret "Thanks for your encouragement. I have an appointment with a hematologist on Wednesday and asked the..." + (show)
@eferret

Thanks for your encouragement. I have an appointment with a hematologist on Wednesday and asked the guys in my bsf group and at church to remember me in their prayers.

Jump to this post

I went for a blood draw yesterday. Platelets were down from 918 to 875. I haven't heard from dr yet to see if he is going to raise it 50 or not. When is your appointment?

REPLY
1 reply
janem411 | @janem411 | Oct 8 12:24pm
In reply to @preacherswife1977 "I am on Besrimi. I have had 4 injections. I get them every other week. When..." + (show)
@preacherswife1977

I am on Besrimi. I have had 4 injections. I get them every other week. When I had my blood work on 8/12 platelets were over a million. 9/4 they were down to 918. I go tomorrow for another blood draw. My first 2 injections were 100 mcg, My second 2 were 150 mcg. I suspect he will increase them tomorrow to 200 mcg depending on where the platelets are. As of today I have had no side effects to the Besrimi to which I am thankful. I did have reactions to HU and anagralide.

This is a very expensive medication that comes from a specialty pharmacy. I was fortunate enough to get at no cost, otherwise I could not have gotten the medication.

Wishing you the very best.

Jump to this post

My first doses of Besremi arrived today. I’ve quite nervous re side effects, so I was heartened to see you haven’t had any. I’m too am deeply grateful to have access to this medication, and so hope it works as hoped.

REPLY
3 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Oct 8 12:45pm
In reply to @janem411 "My first doses of Besremi arrived today. I’ve quite nervous re side effects, so I was..." + (show)
@janem411

My first doses of Besremi arrived today. I’ve quite nervous re side effects, so I was heartened to see you haven’t had any. I’m too am deeply grateful to have access to this medication, and so hope it works as hoped.

Jump to this post

Hi @janem411. That first day with a new med is always a little stress inducing, isn’t it? I’ve had my share of those moments too and each time, my hesitancy turned out to be for nothing. Wishing you all the best. ☺️
Besremi is an injectable medication isn’t it? Did you receive instructions on how to self administer or will be receiving them in a clinic?

REPLY
eferret | @eferret | Oct 8 4:26pm
In reply to @preacherswife1977 "I went for a blood draw yesterday. Platelets were down from 918 to 875. I haven't..." + (show)
@preacherswife1977

I went for a blood draw yesterday. Platelets were down from 918 to 875. I haven't heard from dr yet to see if he is going to raise it 50 or not. When is your appointment?

Jump to this post

Tomorrow (October 9)
in the afternoon.

REPLY
preacherswife1977 | @preacherswife1977 | Oct 9 12:00pm
In reply to @janem411 "My first doses of Besremi arrived today. I’ve quite nervous re side effects, so I was..." + (show)
@janem411

My first doses of Besremi arrived today. I’ve quite nervous re side effects, so I was heartened to see you haven’t had any. I’m too am deeply grateful to have access to this medication, and so hope it works as hoped.

Jump to this post

I have had no side effects at all from the medication. I am thinking it could be because I was started off at a very low dose and is increased by 50 every month, Just heard from my hematologist and he did increase mine by 50 so now I will be up to 200. Wishing you the best. Praying for you as well,

REPLY
1 reply
preacherswife1977 | @preacherswife1977 | Oct 9 12:02pm
In reply to @janem411 "My first doses of Besremi arrived today. I’ve quite nervous re side effects, so I was..." + (show)
@janem411

My first doses of Besremi arrived today. I’ve quite nervous re side effects, so I was heartened to see you haven’t had any. I’m too am deeply grateful to have access to this medication, and so hope it works as hoped.

Jump to this post

for my first injection I went to the office and they showed my husband and I how to administer the injection, We do them at home now every 2 weeks

REPLY
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