oserdu: Hi everyone , I’m on a trial in... - SHARE Metastatic ...

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oserdu

Ppppopp profile image
22 Replies

Hi everyone , I’m on a trial in the Uk with Oserdu.

Started off with nausea, loss of appetite, random vomiting.

2 months in Im getting abdominal pain and feeling very tired.

Anyone similar? X

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Ppppopp profile image
Ppppopp
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22 Replies
bikebabe profile image
bikebabe

hi there - not on it but curious to know if you’re on it because you had progression or as a new first line hormone therapy as am told I can’t enrol on trials unless there is progression but lobular doesn’t really show on scans. I find the Letrozole is very hard on my tendons/muscles.

Ppppopp profile image
Ppppopp in reply to bikebabe

Hey! Yes I had progression after my first line treatment. Was on letrozole for 5 years.

bikebabe profile image
bikebabe in reply to Ppppopp

5 years is a pretty good run. Was it ok for you in terms of side effects?

Ppppopp profile image
Ppppopp in reply to bikebabe

yes! I was also on Ibrance. How long have you been on it?

I probably had side effects in the beginning, but don’t really remember.

I lived very well in those 5 years ! Snowboarding, surfing…….. it will get better if you are suffering.

bikebabe profile image
bikebabe in reply to Ppppopp

26 cycles so far. I’m impressed by the surging snowboarding! Maybe I’m setting my sights too low!

Ppppopp profile image
Ppppopp in reply to bikebabe

I know we are all different. I’m pretty young in breast cancer terms too. Don’t be hard on yourself. If you can get through the day you have done well!!

KMBL_ profile image
KMBL_

I’m in my fourth month. To help with the vomiting, if you can take Prilosec, that helped me. I had really bad GERD, and it’s helped. Also, make sure to take it with a high fat meal, and I take mine in the middle of the meal, not after. I hope this helps.

Ppppopp profile image
Ppppopp in reply to KMBL_

Thanks! It’s crazy the doctors say low fat meal. I’ve been taking it with yogurt.

Vomiting is just random sometimes. I’ll just be sitting in the car and need to open the door🤦‍♀️

Ppppopp profile image
Ppppopp in reply to KMBL_

Oh, do you mind me asking what dosage you take? Mine seems to be and odd dose 200 mg.

NShaft profile image
NShaft in reply to Ppppopp

Are you taking Orserdu with something else in the trial? I am in the states taking 345 mg as a mono therapy.

Ppppopp profile image
Ppppopp in reply to NShaft

I am. I’m taking it with palbiciclib( not sure I spelt that right.

I m hoping they are giving me the correct does. It’s odd because the website says it comes in 345 or 86 but mine is 100.

NShaft profile image
NShaft in reply to Ppppopp

It makes sense you would be taking a lower dose when combining it with something else. I hope you get great results!

Ppppopp profile image
Ppppopp in reply to NShaft

Thank you so much? You too!

KMBL_ profile image
KMBL_ in reply to Ppppopp

Definitely a high fat meal for absorption, and try a Prilosec before eating or drinking in the morning. I’m taking the normal dose of 345 mgs.

Ppppopp profile image
Ppppopp in reply to KMBL_

High fat totally makes sense. Thank you so much for advice!

KMBL_ profile image
KMBL_ in reply to Ppppopp

I agree, unless you’re in a trial, Orserdu is given as a monotherapy alone. I’ve never heard of 100. You’re sure it’s not Letrozole?

Ppppopp profile image
Ppppopp in reply to KMBL_

Triple checked! I’m getting it right from the makers streamline

KMBL_ profile image
KMBL_ in reply to KMBL_

Thank you. I had never heard of 100s. Please keep me posted how you’re doing.

Andersl profile image
Andersl

Just to add to the replies you've already received...I'm not on the same drug as you but I have found that since being on chemo (5 years) I've become more sensitive to dairy products. They make me feel nauseous. Perhaps try cutting down on dairy products to see if it helps?

X

Ppppopp profile image
Ppppopp in reply to Andersl

Thank you Yes! I can’t drink tea with milk anymore.

NPmary profile image
NPmary

I was on orserdu for 1 and 1/2 months. I had all of those same symptoms. Started taking zofran 1/2 hour before taking orserdu for nausea - it helped greatly, vomitted once when l had taken zofran but it worked very well all the other times l took it. Nothing much helped with abdominal pain, gas bloating BM problems. I experimented with eating less. Good luck the fatigue is real too. When l talked to the orserdu nurse she said the side effects might lessen in time. I am not on the med anymore because of progression.Good luck to you. 🌺♥️🌺

Ppppopp profile image
Ppppopp in reply to NPmary

Thank you so much!!💕💕