Afinitor/Aromasin
Comments
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hi @norah2024
I’m so sorry you are going thru this. I went off the affinator a few times for various reasons, and didn’t see any changes in markers or disease progression. I hope this is the same for you.How frustrating not to be able to find the dose you need. I was on the 10mg the whole year I was taking it.
Good luck - hope those liver enzymes snap back.
Rebecca
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You’re always incredibly helpful with your information and encouragement.
I felt much more at ease when you told me that your oncologist says that stopping for this period doesn’t have an effect.
I’ve coordinated with some friends to bring the medication, hopefully this Sunday or Monday.
I hope everything goes smoothly.
As for my own oncologist, it’s hard to reach him he rarely answers my calls, and the nurse doesn’t convey the information to him in the way I need.I don’t have any health insurance, so I cover all the expenses myself after my husband’s retirement.
Sometimes I get the medication from neighboring countries because it’s much cheaper, so whenever the doctor changes the dose or the medication, I face difficulties getting it on time.I hope your root canal procedure goes smoothly. I’ve had this done before, and it does take some time and patience, but the outcome is usually good.
During my visit on Tuesday, I had a long discussion and some debate with the doctor. He clarified a few things for me regarding the current treatment and the available options at this time. I’ll try to write about this in detail another time when I have the chance.
I’m also currently looking into other people’s experiences with online medical consultations.
You can referto my thread:
Thank you for always replying to my messages 🙏🏻🤗I truly feel reassured every time I receive an email saying that you’ve responded.🧡
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Thank you Rebecca, for your reply. I truly appreciate it.
I also hope that my liver enzymes go down again so I can return to the higher dose, because I don’t know what the next step would be if the liver enzymes continue to rise.
I had been feeling reassured since I haven’t experienced significant side effects so far, and because the tumour markers which had kept rising when I was previously on Kisqali , finally started to go down.
However, the elevation in liver enzymes has been quite troubling for me, and changing the dose or the medication itself is always anxiety provoking until things stabilize and I get used to the treatment each time.
I had imagined that I would stay on this medication for a longer period.
🧡🤗
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@norah2024 can you call you call your pharmacy? Even the specialty pharmacy should have a pharmacist you can talk to and ask if you can cut the 10mg pills in half, or not. In the mean time, I'm hoping the little 5mg buggers come out of hiding
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I don’t know whether cutting the 10 mg pill in half is correct or not, because I have read a lot online saying that it should not be split, as this may reduce the effectiveness of the medication or cause side effects due to splitting it.
I also forgot to ask the hospital pharmacy about this during my visit to my doctor last Tuesday.
I have coordinated with some friends in a neighboring country, and they will send me the required dose next week, and I hope it won’t be delayed any longer than that.
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This is an update on my condition.
I finally received the 5 mg dose of Afinitor after being off the medication for one week due to a delay in receiving it. I will take the medication for two weeks and then have blood tests and liver enzyme tests to monitor the situation.
I have changed the time I take the medication from 10:30 a.m. to 8:00 p.m., together with Exemestane.
I am now experiencing side effects, and I am not sure whether they are due to anxiety about how my body will respond to the medication or whether they are late side effects.
I am experiencing, especially at night after taking the medication, severe anxiety and mild diarrhea, which also occurs in the morning, but I have not taken any medication to stop it so far.
I am also experiencing pain on the left side of my face, in the temple area extending to the ear and sometimes to the neck. This pain lasted throughout last night and continues this morning. I cannot take a pain reliever because I am afraid it might affect my liver.
I will have blood tests in two weeks, and based on the results it will be decided whether I will continue this medication or if the doctor will suggest another treatment. This uncertainty is what is causing me severe anxiety.
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this is an update
I started the 5 mg dose three days ago
I have been struggling with persistent loss of appetite and nausea since switching to Afinitor. Initially it was manageable, but over time I have become almost unable to eat, and even foods I previously tolerated are no longer acceptable.
I have tried several approaches, including gargling before meals and eating small, frequent portions, but the nausea prevents me from continuing. I am currently unable to tolerate any cooked food and rely only on fruits and some raw vegetables. Bread, milk, and yogurt are no longer options for me.
What concerns me is that these symptoms are occurring on a daily basis, without the periods of improvement I used to experience during chemotherapy. This has made me increasingly worried about continued weight loss.
Does anyone have experience with nutritional supplements, IV fluids, or practical methods to stimulate appetite or reduce nausea?
Any advice or shared experiences would be greatly appreciated.
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Hi @norah2024 I am going to reply to your earlier message first. I get anxiety also but I am somehow able to talk myself out of it most of the time. I don’t know if the anxiety is causing the side effects but of course does not help. I had pain on the right side of my face a few times but think it is due to dental issues. Do you have any dental issues you need looked at? Also I have super sensitive sinuses. Do you have any sinus issues?
I now take Naproxin for pain relief (Alieve) because I cannot have headaches and pain ruling my days. I hate to take additional l meds but I will to feel better if I have to.
Do you have any relief since you sent this first message?
I very rarely have any nausea issues. And my side affects all started after a month+ into the medication. Have you called the pharmacist at Affinitor? They may be able to help with food suggestions. Also maybe a nausea medicine to at least get you through this part. I would ask your oncologist about that. I have to be very careful with supplements - they do not agree with me. But we are all different. Be careful with that.Do you have other symptoms and/or have some subsided? I’m sorry I don’t have more info for you. Let me know how you are doing. Thinking about you.
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Thank you for your message.
I do indeed suffer from chronic sinusitis, but on the side opposite to the headache.
I also have dental problems, but I am postponing treatment because I am on Xgeva and I am afraid of developing osteonecrosis.
As for side effects, loss of appetite is currently the only one I am experiencing; the other side effects have either resolved or significantly improved.
However, this is the strongest and most difficult side effect for me.
Today I am feeling better and I am able to eat some fruits, rice, and soft bread, which I consider a significant improvement.
And about the headache its improved now .
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Update on my condition:
After the doctor reduced the dose from 10 mg to 5 mg, I’ve been experiencing new side effects every day. One ends and another begins.
I’ve suffered a lot since starting the lower dose, even though I thought it would be easier on my body.
I’m currently experiencing a cough — a persistent cough that sometimes stops for no clear reason, then starts again without any obvious trigger. I don’t know whether this is a side effect of the medication or due to the weather and high humidity.
The cough starts when I move or walk, which is why I stay seated most of the time. I only walk to the bathroom, and when I do, the cough starts and doesn’t settle until I return to bed.
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have you checked with your doctor on this breathing situation? I have the same symptoms, and I have pleural effusion. It’s fluid lining the wall outside your lung.
I’m having this drained every week or so, but when it’s bad, I can’t breathe well at all.
Have it checked out. I’m sorry you are going thru all this.
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No, I haven’t discussed this with my doctor yet, because my appointment with him is in six days, and it will be after I have the blood tests and enzyme tests done to assess how well the medication is working.
I don’t know if this matter is urgent enough for me to see him before my scheduled appointment.0
