Afinitor/Aromasin

@marcials1

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.🧡

@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

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.

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.

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.

@rstogether

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.

@ailurophile

I’m so sorry you’re going through this.

I’ve been on this medication since December of last year, and I’ve had several interruptions and dose adjustments due to elevated liver enzymes and pneumonia.

As for high blood sugar, it is one of the side effects of the medication. It happened to me during the first month after starting it. I remember my doctor told me we would just monitor it, and if it reached a high level, he would prescribe a mild medication to control it—but I didn’t end up needing it.

The biggest issue for me was the elevated liver enzymes.

I’m sorry I don’t have enough information about this, but perhaps you could ask your oncologist to prescribe something to lower your blood sugar until your body stabilizes and adjusts to the medication.

May I ask what dose you are taking?

@ailurophile

Hi

Hi my dear,

I just wanted to check in with you and see how you’re doing on Afinitor so far. How are things going with you? Have you noticed any side effects, or is everything manageable?

I really hope you’re feeling okay with the treatment and that things are going smoothly for you.🙏🏻🙏🏻🧡

@ailurophile

I hope things are going well for you, and that you’re able to get through the issues with blood sugar and cholesterol while on these medications—and that this is only a temporary phase, with things returning to normal once your body adjusts.

Afinitor also caused an increase in my blood sugar, but not to the point where I needed medication. My main issue is cholesterol—I already had high LDL before starting the drug, and it has made it worse. Even my triglycerides have increased, although that was never a problem for me before.

I’m currently taking a cholesterol medication that my doctor had previously stopped when I started Afinitor due to elevated liver enzymes. I’ve now resumed it, and I’ll be doing a blood test in a few days to check where my liver enzymes stand this time.

I’m on the 5 mg dose now. I had several interruptions in taking the medication due to elevated liver enzymes and delays in getting the drug, but I restarted it about ten days ago.

The side effects are now less severe than before—perhaps my body has started to adjust—except for swelling in my ankles and pain in the bones of my legs, which limits my movement and prevents me from doing any exercise.

Also, the phlegm is really bothering me. It comes out of my mouth throughout the night and every morning, and now it has become mixed with blood. I will definitely mention this to my doctor at my next visit. I believe it may be related to my long-standing chronic sinusitis, especially since I’ve also been experiencing nosebleeds since starting this medication. It feels like the phlegm is coming from the back of my throat or pharynx.

Take care, and wishing you well 🧡🧡