Afinitor/Aromasin
Comments
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@norah2024 about your post on 12/10: I’ll update you anytime! And be sure to update me or all of us!
My PET on 12/11 ended up being the most positive since I started this metastatic process back in February of 2024! I saw my results on the patient portal and then confirmed with oncologist yesterday. For the first time some lesions are shrinking. Now if I could reduce some nasty Affinitor/Exemestane side effects I would be a happy camper.
To answer your question I usually see my PET, MRI, CT results on my patient portal in 24-48 hours. It is so easy to log in and see results vs waiting to talk to oncologist. Sometimes a little scary not knowing what I’ll see there but all in all it is much better than the anxiety of waiting!About your post on 12/13: I take my meds together in the morning after light breakfast. I know we need to take the Exemestane after a meal. I also read that we can take Afinitor either with or without food but once we do it one way then stick to it. So I take Affinitor & Exemestane together (with seizure meds I take) around 9:00 a.m. I think once we establish what works for us we just need to be diligent and remember! Not a strong suit for me so my reminder goes off on my phone!
Did you get a prescription for the mouth rinse to combat the mouth sores? I like to stick to warm water & salt but use the rinse if I have to. I have felt mild nausea here & there but mostly I’m hungry all the time. Are you getting full blood work i.e. liver enzymes, white & red blood cells, tumor markers, etc. with your cholesterol and blood sugar? I was so uncomfortable starting this med but I am ok with it now. Not thrilled don’t get me wrong. Worst side effect for me is really bad headaches. And my live enzymes did start climbing according to my bloodwork yesterday. And my tumor markers are going up vs down so don’t know what that is about. It is a let down but I’ll wait another month and just be happy that the PET looks good!
‘Keep your positivity up! I know it is hard for sure. I really do. But it’s a big part of our battle. I’m not going to let my bloodwork get me down and rather concentrate on the positive PET results! I hope you enjoy your holidays. Just put this crap out of the forefront for now! 🎁💝0 -
thank you for your reply and update, I really need it 🙏🏻🙏🏻
For me, I usually receive the CD of the scan immediately after the PET.I get the official report and results after 4 business days.
Yes, I did get a mouth rinse, called Magic Mouthwash.
It is a pharmacy-compounded medication with the following ingredients:
- Maalax Plus 25%
- Lidocaine viscous 16.6%
- Nystatin 12.5%
- Chlorpheniramine 45.8%
The instructions were to use 10 ml each time, 2–3 times daily, and it remains effective for two weeks after opening.
I used it as prescribed on the first 3 days, but since I didn’t develop mouth sores and it caused numbness in my tongue and throat, I adjusted the dose to 7.5 ml twice daily, then reduced it to once daily, along with frequent tooth brushing.
Regarding blood work, I haven’t done it yet since it has only been 6 days since starting the medication.
My appointment is next Tuesday for blood tests, including cholesterol and blood sugar.
Tumor markers will be checked after one month (I did a baseline marker test right before starting the new medication so the comparison would make sense; my CA 15-3 was around 300 at that test).
The only thing I’m struggling with right now is significant pain in my lower shoulder that radiates into my chest muscle, right around the mastectomy site.The pain is present every day, and I feel it strongly whenever I get up from a chair or out of bed.
I plan to tell my doctor about it at my visit next Tuesday.
I’m not sure whether this is related to lymphedema, since my arm and underarm are also painful, or if it’s more of a muscle spasm, as I experienced similar chest muscle pain after my pneumonia episode back in October.
I’m really happy to hear that your PET scan results were encouraging — that’s such a meaningful win, and it truly matters.
I hope the side effects ease with time and that things continue moving in the right direction for you.
I’ll do my best to stay positive as well, one step at a time.
Wishing you calmer days, steady progress, and as much peace and light as possible through the holidays 🤍
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Hi Norah,
I don’t know how I feel about the mouth rinse. I’m like you I ended up reducing the amount and maybe 2-3 times a day. I took it until it ran out the first time now I try to put it off unless I feel really aggressive sores coming on. It is sort of vague on how long we are supposed to take it. I asked. My oncologist yesterday and she said I can take it every day as long as I want. Well I do not want! So I’ll put that aside for now.
I had the pain in my “wing” under shoulder blade in the back for awhile but it went away. Also had under arm pain on the side where I had masectomy. Was wondering if lymph node but nothing was found. Also have pain or rather uncomfortable feeling where breast tumors used to be. I was told it could be phantom pain people feel sometimes. Like if some one loses a limb they still feel like there is pain in the limb that is no longer there. Freaky and unsettling.Definitely something to follow up on. Let me know how all goes next week. Thinking lots of positive thoughts for you 🙏
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