recently on Orserdu. Weird things happening.
legs and feet very numb. And I have hands , feet and legs turning off color in warm shower. Feel completely off. Did great on Ibrance/Fulvesyrant.
But not sure if we are too focused on cancer and missing a possible underlying cause. Anyone?
I just had a cousin pass away with MBC, he had it for five years.They changing his medication. I’ve been on Ibrance and anastrozole for three years, my cancer is stable, but in a lot of pain due to fracture vertebrae. I just don’t understand if someone is on a med that is working, why do they switch? Makes no sense to me. I’m grateful for my 36 months as they say I’ve got 42. Hope you find some relief. Hugs!!
Sharon
It could be neuropathy. The most common symptom is tingling and numbness but there’s different forms of neuropathy and different symptoms.
mayoclinic.org/diseases-con...
If autonomic nerves are affected, symptoms might include: Heat intolerance.
Mention it to your clinic and see what they think.
One possibility could be that your lymphatic system is clogged up and needs to be opened up and moving again. It would be worth a visit to a therapist who specializes in lymphatic drainage/massage. It is a very soothing and comfortable process which can relieve pain and swelling particularly in our extremities.
Hoping you feel better soon.
Can you get the dosage lowered? I started out with middle dosage and when I did good on it for several months my Dr increased it to the highest dosage.
A lot of people here get neuropathy and hand - foot syndrome on our meds. Neither of these is listed as a side effect of Oserdu, though. Maybe it is an allergic reaction? Better let your oncologist know.
Hi Elle713,
I have been on Orserdu for 5 weeks and have not had any side effects like you are describing. Mine are more intestinal, hot flashes and some tiredness. Your symptoms do not seem to be on the list of Orsedu side effects, but each individual is different.
I hope you can get some answers from your Dr. I would make sure your Doc is aware of the sensations you are describing. It does sound more like a circulatory issue or neuropathy.
💕
I went from Orserdu to TRUQAP. The highest dose (200) gave me diarrhea 24/7. Went to 160 and I am tolerating it better. I still have some diarrhea My cancer numbers are stable. We’ll see how they are this week as I get tested every week.
This is a new drug. Approved in November 2022. Anyone on this? I have two mutations that it targets. Hopefully it works great. Best to all my warrior friends. Reenie
I hope you reached out to your medical team about this. How are you now?
So kind of you. Yes - I’m now down a rabbit hole of specialists. Had MD run alot of out of the box bloods - all negative. Going to vascular doctor today.
Hi, It seems if you tell Onc one problem it blows up to see a bunch of specialists. I have been to 5 this last two weeks and all but 1 wants tests. I am 80 years old and so tired of going to Doctors. Yes I am a little depressed about it. Anyone feel like me?
Hi Granny YES I feel just like you. Depressed and so tired of doctors. That is all I have done. So… I’ve decided to take a pause and break and keep my symptoms to myself for a while and just accept that most of them are from the toxins building from the drugs and radiation and stress!!!! The vascular surgeon I was sent to today said he was not concerned. I’ve wasted 3 weeks stressing about this appt.
Best of luck with it all. I experienced a tiny bit of that on my feet at their worst, so I know it's disturbing but Iuckily for me I knew mine was from hand foot syndrome, and the Xeloda dose. I hope you get some answers very soon
A Check in, November 4,
Day 3 on Xeloda
Rocky start onto Cape- hoping to leave as planned for NZ in just 3 weeks-Need Help
sick of medicine attacking me 
