Afinitor/Aromasin
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Hi All,
Starting radiation to my pelvis tomorrow; we'll be treating 2 areas. Oddly, my tumor markers took a turn for the better after 2 months of rising, 27.29 dropped 30 points (20%), CEA and 15. are both stable. Hoping that we can stop the progression in my pelvis and I can get a little more time on the AA protocol. Current plan is if the next TM's have dropped or are stable, no change. If they rise, we are going to try Afinitor and Faslodex before moving on to Piqray. Fingers crossed, this protocol has been so manageable.
Listened to an interesting podcast on BC this morning. Really helped me understand what is happening when the drugs stop working. Highly recommend - Investigating Breast Cancer, episode 40, The underlying biology of drug resistance with Dr. Sarat Chandarlapaty of MSK. He is the head of laboratory of the Human Oncology and Pathogenesis Program. It is worth a listen.
Wishing all a good week ahead!
Stacey
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Hi ladies. This may be my next treatment I will find out July 16th. Before I have to make that decision in her office I wanted to be armed and ready to know what I am dealing with. Can you all give me some information about this drug. How does it work? Side Effects? Anything else I need to know. I am unable to figure out how to update my profile so I will tell you I am currently on my 3rd line of treatment in just over 1 years.
Failed Ibrance/Letrozole/Faslodex
Failed: Xeloda
Now looks like Doxil Fail.
PS: I did hear Diarreah...I tend to be consitpated...so this may be good for me.
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Stacey- hope the pelvis radiation helps you stay on this line longer! That's my plan. Whack-a-mole with local treatment. I just finished day 2 of SBRT to the lung.
NicoleRod- I had mild constipation before Afinitor but now I have mushy small diameter stools. 🤪Sorry. It has caused my magnesium to be chronically slightly low. I tried the supplements but that gave me true D so now I am getting weekly magnesium infusions -small price to pay to stay on this line which is working!
My ANC dipped low a few times so I had to get the filgrastin shot but that seems to have leveled out. phosphorus also dipped low once but took the short term meds and it is fine now. Some liver enzymes are off but improving. Cholesterol spiked so I started Lipitor 10 mg which is also supposed to help against cancer. Blood sugar is some higher but I don't need metformin.
Afinitor for me has been a piece of cake compared to Xeloda and doxil. I had horrible hand/foot with both.
Hint from a nurse-I swallow the pill wrapped up in small rainbow marshmallows with lots of water. No mouth sores for me.
I'm glad to hear some people have gotten quite a long ride from Afinitor.
Dee
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Dee...Afinitor is a pill and putting it in your mouth can give sores? Really?
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NicoleRod
All I know is she recommends it to her Afinitor patients to try.
Dee
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Nicole- it's a pill, the mouth sores are not due to the pill touching your mouth! You need to use a steroid mouthwash the first 2 months to prevent the sores- I had no sores and used it for 2 months.. My mild constipation didn't really change. My first cycle I got low ANC and had to take a week off- it never returned. With any new drug I think the first month or two are harder. This treatment was my easiest also and it worked for 10 months.
No leg cramps, neuropathy better, hair very thick and luscious, my anemia resolved, which was nice for exercise endurance. My blood sugar went up mildly, but, never got abnormal, I don't have diabetes. My cholesterol increased quite a bit, but, never enough to take statins. I took it with Exemestane. But, I have seen several people on BCO who had lots of side effects. My MO was shocked when I told her it was easier than Ibrance. Before they started using the mouthwash the mouth sores were a deal breaker for many people and MOs. Hope Rugo did the study on the mouthwash prevention if you want to investigate that.
Alabama Dee- so glad that you are doing so well on Afinitor still!!
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NKb I got BAD mouth sores from Ibrance and very low Neutrophils...I never understood why they didn't just give a neulesta shot on ibrance for the white blood count? Will they give that with Afinitor? Were you saying that the bad side effects were from the Exemestane or the Afinitor or both?
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Nicole- I think that those who had problems got them from afinitor. They now understand the mechanism for the mouth sores caused by afinitor and can block that pathway with the steroid mouthwash which you seem to only need for 2 months. You can lower the dose also. I just wanted to mention that it seems that many people have few side effects with this medication- but, others have more problems- especially diabetics I think. It seems to vary with individuals.
I never got Neulasta for my low ANC with ibrance- seems controversial with ibrance with most MOs not using it. I only had low ANC with the first cycle of afintor- took a week off and it normalized and stayed normal.
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Nkb thanks!
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I am still on AA. Two months ago CT showed Stable on my peritoneal Mets, but some spots on my liver, a follow up MRI confirms few tiny spots all under 1 cm. Onc called and told me to switch to chemo or go to a trial. I argued with her that I was feeling well and wanted quality of live more than everything ! We compromised to continue on AA, and see what next scan shows. Two days ago met with Onc to discuss new scans. Surprise, peritoneal portion is still stable, and one spot on liver decreased from 0.9 cm to 0.4, and other spots on MRI are not seen. So continue AA treatment! Onc admitted that she was glad that she listened to her patient! I am glad that I followed my body’s reaction. Also we discussed the news on recent study on Xgeva, she agreed to reduced my monthly Xgeva shots( been on for 6 years) to quarterly. Not all good news from the visit, I had swollen eye lids for two months, will have to get another.CT of orbit to see if cancer spread to eye region. But I like to continue on AA which is a relatively easy treatment for me!
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Cling...I had my MO stop Xegeva/Zometa...I only got it 3 times and stopped..since I don't or (didn't) have Extensive Bone Mets..I felt the CONS out weighed the Pros with that drug. I am scanning Monday and Tuesday results Thursday Affinitor maybe next for me....
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cling
Great news about listening to yourself. Staying on Afinitor/ Faslodex as long as possible is my goal. It is an mostly easy ride for me too.
Hope the eyelid thing is not cancer. Let us know what you find out.
Dee
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Cling how are you? Any news about your eyelid?
Anyone experience ongoing and frequent flatulence on Afinitor? I finally started taking Imodium for the frequent loose stools and got some relief in that area, but the F problem is just driving me nuts. 🤪
Dee
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Hi Dee: the CTs on my head, orbit and neck are all fine. Still no answer to my swollen eye lids. Eye doctor assured me my eyes are fine, no infection or other problem. So, I guess I have to blame on cancer caused edema! Onc is concerned but I told her since the swollen condition is not hurting or hampering my vision, I will just live with swollen eye lids!
I also had loose stool and frequent diarrhea for the past 3 1/2 months. It is very inconvenient when the urges come, but I prefer diarrhea to constipation. So, I live with the condition without getting Imodium.
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cling-good news! I have hooded eyelids and noticed they have looked worse on A. Maybe it’s a side effect.
Because the D affects my magnesium I need to get it under control better. Imodium helped me get back to once/day. Hopefully I will have better mag absorption and not need the infusions.
Dee
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Such timely answers!
I started my A:A combo today. I only lasted on piqray for less than a month due to rash from head to toe and mouth. Otherwise got a couple years each from ibrance and xeloda.
Not a fan of marshmallows but might have to do that. I heard oil Pulling is helpful. So I should be swishing with that mouthwash now?
Was also told by a nurse friend that Fiji water has electrolytes. Not a fan of sports drinks. Also another friend swears by magnesium spray (Amazon). I take the tabs.
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Zillsnot4me- use the mouthwash for 8 weeks- no need for marshmallows- (tho I love them personally) it is not caused by the medicine touching the
inside of your mouth. Good Luck!
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zillsnit4me-
Hoping AA gives you good results for a long time. My WBC is chronically low (Neutropenia) but ANC only dipped below 1 a few times. I give myself the filgrastin shots when that happens, as ordered by my MO.
The marshmallow thing is only anecdotal from a research nurse who sees lots of patients on A. My MO had not heard of the steroid mouthwash. Fortunately I did not need it. Please use it! I had access to “ magic mouthwash” which is not the same.
I get my scans in 2 weeks. Trying to live in the moment and not succumb to scanziety. I really want A to work a long time since it is the first treatment that has given shrinkage. MO warned me she has never seen anyone on it for more than 2 years.
Anyone out there on A longer than 2 years and still getting control of tumors?
Dee
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Thanks everyone.
I did start the mouthwash. Too tired and onery to use it last night. I did try the marshmallow trick too. I understand the sores come from the inside but hoping to trick my body or . Is the yucky taste in your mouth from the pill? The mouthwash?
Otherwise doing ok. A little itchy and a little dry. But my hands and parts of my feet are finally clearing up from xeloda. Just need to stay on top of my fluid intake.
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AlabamaDee- there was someone who got 3 years from AA- I don't remember who- maybe she will check in- it was her first treatment though- so that may
make a difference. I hope it works a good long time for you!
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thanks NKB. That’s good news.
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I tried the marshmallow trick. I’m one pill away from finishing my first cycle. I haven’t had any bad or multiple mouth sores since. Just the occasional one from eating something spicy like pizza or salsa. Guess this will be the bland diet drug
However I’ve had these sore pimple like things pop up on my scalp. Nothing in them. And feel huge but I can’t see, only feel them. Thought maybe it was leftovers from piqray, heat/humidity. Nope Facebook group confirmed it’s Afinitor.How did your scans go Dee?
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Zilsnot4me
Glad the marshmallow thing works.😉
I don’t do Facebook so I didn’t even know pimples on the scalp were A thing. I had a few in my hair on Afinitor. They went away.
Was hopping for shrinkage but, scans showed very mild progression- 1 in the lung and 1 in the liver grew mm. I will stay on this treatment for 3 more months. I wondered if the one in the lung gets large enough to biopsy, I can get a PDL1 on it and check for more mutations for further treatment. Then they can SBRT whack it.
I'm glad to continue current treatment(On month7) and that I have local options too.
Dee
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anyone here have nasty headaches on A? I've been having them almost everyday for a month. Some days just annoying and others require Tylenol and rest. Just had a brain scan in June- all clear.
TIA
Dee
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My run with AA has ended, almost 11 months! Three months ago, I started having swollen eye lids, and some nodules started appearing on my neck and other part of body. A recent visit with Onc, she thought the swollen eye conditions was lymphatic fluid cumulated from blocked nodules. So a surgical biopsy was done, the path report showed that those nodules are lobular breast cancer mets to skin. Depending on insurance approval, I most likely will move to Abraxane.
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Dee,
I get periodic headaches from Afinitor. One thing I find that helps is extra hydration. Drink as much as you can when you take it and throughout the day.
I am still on AA. I had my pelvis spot treated/radiated. Tumor markers all dropped, 2 of them by a large amount. I am about 16 months on the protocol. Next I will have to go to Piqray. This freaks me out but if it is miserable, we will have to try something else.
I take it as a win if there has only been a very small amount of growth. Slowing it down is a good thing.
Stay well hydrated, if you look at the material that comes with the drug, it actually recommends this.
Take care,
stacey
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cling- I am so sorry about your report. Glad you know why the eyelids are swollen. Hoping you get good results on abraxane.
Stacey- thanks for the advice about hydration. I have been drinking so much I get up 3 times at night! I am hoping it’s more hypoglycemic. Eating give a little relief.
Bran scan on Monday.
Dee
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after stopping AA on 8/21/20 , I waited 8/27 to start first 1,8,15 then off for a week to restart. I have been IN ER/hospital . Finally reached agreement to be discharged on Monday to palliative and hospice care. I accept the end is here now Bye and Thanks to my breascer.org friends For the past 10 years suppor. You keep fighting on
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Cling
😢😢😢😢
I am so sorry for your condition. Sending prayers that you have peace and live each day fully.
De
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Cling! I am so sorry about your recent hospitalization. Hospice can be very supportive- I wish you serenity and many good days left.
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