Afinitor/Aromasin
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I have decreased the number of rinses as well. If you take according to directions, you will run out in 2 weeks time. Just had to order an interim prescription to hold me over until my med delivery. Plan to use a couple times a day just to be safe, lol.
Kathy
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bay witch- I had to fight a bit to get a months worth. I think just because it is 5 bottles which seems like a lot. It’s a special order at my pharmacy so I would have had to go in every 12 days and pay a new co-pay - they finally just gave me 5 bottles of it. I will keep tapering over next few days and then maybe off it since it will be 2 months.
How’s everyone else doing
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I am only on this med for 3 weeks, so I will continue for a bit. Haven't had any problems yet, but not interested in tempting fate. I think my script said to use for the first 8 weeks.
Kathy
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Hi ladies ... 4 weeks in and just started getting tiny red bumps all over my shoulders and neck. No itching, fortunately. Anyone else experiencing this??
Kathy
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Baywitch- I’ve had several weird rashes. Most don’t last very long. I currently have an itchy one on both sides of my neck- like an allergic reaction. I used steroid cream and the itching is gone, rash remains yesterday half of my pinky went numb and I noticed a sudden bruise the numbness lasted about 30 minutes- bruise is fading Strange mysteries
How’s it going otherwise?
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Nkb ... otherwise feeling pretty good. It's really the only SE I have experienced so far other than some fatigue. It doesn't itch, but I am aware of it, almost like a sunburn. Took a Benadryl and hoping that takes care of it. Are you doing OK otherwise? It looks like you haven't been on this one long either. Hoping for a good run - Kisqali lasted me 18 months.
Kathy
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Baywitch- I am starting month 3 on AA. I was on Ibrance and Faslodex for 18 months. The aromasin causes some joint aches and I have fatigue also - otherwise I feel pretty good.
I hope it works! I will probably have a PET in another month or two. The first month the TMs went down. The cholesterol went up a little- will check that again next cycle. Your labs ok
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Nkb ... haven't had any yet since starting. Early next month will be my first ones. TMs went up last time quite a bit, but I was off all meds for a few weeks during the transition to Afinitor. We'll see ...
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Charlotte 45, Baywitch, mason- how are you doing?
There seems to be a second afinitor thread which I posted my great PET results! Also TMs down 40%! Have been taking it 4 months. I Feel good.
Wondering how everyone else is doing?
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Congrats nkb!!! I'm thrilled that A/A is working for you!!! Tumor markers down 40% is an amazing result!!
I'm considering A/A as a future treatment due to my PTEN and PIK3CA somatic mutations. However, I also have an ESR1 mutation which means that the Aromasin side of the treatment will likely not work and I progressed quickly on Faslodex/Ibrance, so Faslodex might not work.
Your awesome news brought a big smile to my face. Thanks for sharing!
Theresa
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Nkb- thanks for posting, it is very good news to hear that AA can work well after I-F: do you know which mutations are prevalent in the cancer? Pi3K, ESR1, etc? Hope it works for a long long time
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Theresa45 and Curious- I don't know what mutations I have. I did Arimidex for 4 1/2 years and when I progressed to bone mets was put on Fulvestrant and Ibrance which worked for 18 cycles. When I went to the specialist at UCSF and asked about doing a foundation 1 test or other test she said that she didn't care what the report said she would still recommend AA. So, I didn't do it yet. I could very well have a ESR1 mutation, probably have a Pi3K, but, I don't know. I would do it if I progressed again. I am still bone and bone marrow only so it would be on blood. Theresa maybe oral faslodex will do the trick when it is available. I was skeptical about an AI with my two previous treatments- but, something is working.
I made it past the 4 months and hoping to get past the 7 months median!- the PET said all areas stable, regressed or resolved!
Curious- I am going to send those quilt pictures to you soon. (and order more fabric!)
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Nkb - Thanks for sharing your experience. I'm so happy that A/A is working for you and has been tolerable too! It's good to know that A/A can work even after progressing on Arimidex and Faslodex. I'm currently on a Phase 1 trial of one of the oral SERDs (G1 Therapeutics G1T48). I've only been on the trial for 2 weeks, but I have a visible met (bump) on my sternum that seems to be progressing. Ugh! I will be scanned after 8 weeks on the trial. I hope that A/A continues to work for you with minimal side effects! On one of the OncLive broadcasts, an oncologist (Joyce) mentioned that, in her experience, treatment with Afinitor can re-sensitize cancers to hormone therapy. So, if a Guardant 360 blood test reveals a PIK3CA mutation, then Piqray + hormone therapy may be an option for you. Theresa
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theresa- I hope no more progresssion. we need these treatments to work longer.It was probably Joyce O’Shawnessy- she is on a lot of those podcasts. Super smart woman- yes, that is what I heard about the afinitor also in regards to the AI.
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Nkb - Thanks for the well wishes. The oncologist was Joyce O'Shawnessy.
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Help! Just looking for some guidance as I am basically clueless. Recent Guardant360 blood test results:
Alteration % of DNA or Amplification Associated FDA approved therapies Clinical Trial Availability
ESR1 D538G 0.04% Fulvestrant Yes
TP53 A159P 2.5% None Yes
TP53A151G 2.4% None Yes
The list goes on with other TP53 letters/numbers but all are at or below 0.2%. I asked onc what the super low percentage on the ESR1 meant and she said she didn't know but had reached out to the company to ask. She is tentatively recommending a trial of oral Fulvestrant and Femara/Ibrance or Aleseritib/Faslodex (not sure if spelling is correct.
First line treatment was Faslodex and Ibrance for about 38 cycles. Some progression in ribs so she switched to Affinitor/Aromasin. Been on that regimen since late October 2018. Recent scan indicated mild abdominal ascites, but this problem is worsening daily and I have an US scheduled for August 1st. As of now, I am still considered bone only mets.
Looking for any info on the Guardant blood test as well as your thoughts about my abdominal ascites/tenderness/pain. This is also from the CT report:
Abdomen / Pelvis: Physiologic FDG activity is identified in the
genitourinary tract and bowel. Small foci of air in the right pericolic
gutter is favored to represent intraluminal gas. There are thickened loops
of small bowel in the lower abdomen (image 177), concerning for enteritis.
No metabolically active abdominal or pelvic lymphadenopathy. No
intraperitoneal masses. Small volume ascites is new from prior. Anasarca.I take Lasix daily for fluid buildup but no relief in the abdomen......
TIA for your feedback and hope everyone has a great day!
MM
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I’m starting my second year on AA. Other than fatigue I’m doing well. Last June I was given 2 months to live! We are thrilled with the results. I’ve been stable all year - brain, lungs, bones and liver! And my TMs are down from 250 to 45
I have recently got a very bad rash on my face. Have tried betaderm and hydrocortisone but it’s not helping -big red splotches. Has anyone else had that? I use mild soap and moisturizer.
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Eljaywest- How exciting and uplifting your news is! Your TMs are wonderful. I didn't know that it was in your brain and liver and lungs also- so wonderful that it is working all those places.
I don't know about the bad rash you are experiencing. I have had random weird rashes, some on face and different other areas- I am starting to use more moisturizers prophylactically and my skin is happier. I also don't really put soap on my skin except my face. Too drying. hopefully others will chime in.
Have you tried Zyrtec? SusanSF mentioned that she saw an oncology dermatologist who said it worked better for drug related rashes than other allergy pills. SusanSF got a bad rash to alpelisib which is similar to Afinitor just works further down the same pathway and just got approved here in the USA under the trade name Piqray.
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Thanks Nkb. I’ll try that and let you know if it helped.
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how’s everybody doing? This is such a quiet thread- makes me feel like I am the only person on this drug!
Eljaywest- how is your rash?
Masons mama? Baywitch?
I am doing well. Just finished month 6 and I feel good. My TMS continue to go down, more slowly now, but, right direction! I feel better on AA than I/F- my HGB is almost normal and I notice my exercise tolerance is better now. My hair is much thicker, neuropathy way better, leg cramps gone. No more weird rashes. My ANC is still low, if I gets much lower, I will have to take a break or lower the dose probably.
Hope to hear how everyone is doing on this combo.
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I am on month 4 of the AA protocol. Tolerating it very well! I was a sobbing mess after the pharmacist ran through the side effects with me. Although I had my share of diarrhea, it has stabilized in the last month. I will say my cholesterol is like a burger eating truck driver, 240. I am an athletic vegetarian and always had low cholesterol prior to this. Appetite is not so good but I am holding my weight.
My last blood draw was terrific, and my tumor markers are slowly heading in the right direction. I do have something similar to hives on both forearms after I run, and the occasional mouth sore, but I am far less fatigued than with the I/F protocol. I have also been on Metformin for almost 4 months, I asked my oncologist to put me on it after reading about the PIK3 mutation. In addition, I began the Care Oncology protocol including a statin, and alternating Mebendazole and Doxycycline monthly, about 6 weeks ago.
I am just a year into this. It was, and remains roller-coaster-ish, but for the most part I am living my life as I did before the recurrence. I think there is reason to hope...
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Nkb- Hi, how are you? I'm actually doing great at this time! Still on Affinitor 5mg. No longer on Aromasin due to mutation. Literally no side effects at all for me. Thank you Jesus!
Hope everyone else is doing okay. Have a blessed week!
Angie (masonsmawmaw)
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Masonsmawmaw/Angie- fabulous news! I’m so glad it is working for you! So, I guess that you are on Faslodex instead? I did that for 18 months with the Ibrance.
Let’s hope we get a long run on this
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Nkb...yes I am back on Faslodex. That was one of my original treatments; I got about 39 months out of Faslodex/Ibrance before I had a little bit of progression. I really don't seem to eligible for any trials due to a heart condition caused by red devil in 2001. So I'm hoping for a long, long run on the Affinitor/Faslodex.
Are you also on Aromasin? Have you lost weight on your regimen? I am still down 40 pounds from when I started A/A last October!
Take care and be well
Angie
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Angie- losing weight ?-No! I saw all these reports of weight loss before I started the AA so I piled on the treats and gained 2 pounds before I started. I did not lose them- gained more with trips with kids and eating out. I had to go on a regimen of exercise before breakfast and fewer calories to get back down. I don't really have the same appetite- but, DH does the cooking and gets rather worried if I don't eat the salmon or the other healthy stuff. I have a weight that is my line in the sand weight - I keep making sure I get back to it, I feel better and clothes fit better. My blood sugar is creeping up a little- barely normal now, so want to keep weight down. Cholesterol went up also on this med, on the edge of normal. Not sure that I want to take a statin even though it is supposed to be anti-cancer- my MO doesn't buy that theory and it would be more side effects to deal with.
Could you afford to lose the 40#? That seems like a lot. Many of my friends have gained a pound or two a year for 10 years and so losing a little weight is ok for them. My MO says that side effects to this drug are all over the place, some people have few (me and you) and some people can not tolerate it at any dose.
I am on the Aromasin, I did arimidex for 4.5 years before the progression- so got Faslodex with the Ibrance, now on AA- supposedly the Afinitor makes you sensitive to AI meds again. I do appreciate not having the shots in the butt. My side effects are different with Aromasin than Faslodex- had a lot of hip pain with the Faslodex- like my hip was going to give way when I climbed stairs. but, knees ok. with the Aromasin the hip pain is gone, but, knees are more unhappy. I allow myself to take Motrin once per day for that. so nice.
One great thing- I have a lot more hair on AA than I/F.
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I am joining the AA group tomorrow. Pharmacy called that my insurance approved and they also got assistance from a foundation grant for me, that I do not have to pay $1600+ copay! Will pick up Afinitor later today.
I am really not eager to start AA, heard too many bad SE reports. Onc has suggested several times in the past 3 years whenever we changed TX, but I resisted each time. I have several travel plans and could not be tied down on IV chemo chair, I have to accept it. Onc assured me the SEs are not that terrible, Nkb also PM me to ease my fear. I had no SE on the previous treatment on Xeloda, and I hope my luck will continue.
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Nkb-my weight is now 115# and I am 5' 6" tall. I kind of look like a stick to be honest, no fat anywhere but plenty of loose skin on my arms and legs...ugggh. My weight loss started at the time I went on the A/A combo and it has leveled off but I haven't been able to gain any back. Appetite did recover for the most part, but I still can't eat very much at all. And, with my diabetes, I still have to take insulin which I wasn't on before, and like you, cholesterol has gone up. No statins for me...heard too many negative things about them. I'm so glad to hear that you are doing fairly well and yes, it is lovely to have hair!!
Cling-don't be surprised if you do start having bad SE's. I really thought I was going to have to throw in the towel at the beginning of treatment. The side effects were truly horrendous for a while, but if you hang it there, it will get better.
Scans at the end of October so I'm praying for good results since I don't know what would be next.....
Take care my friends!
Angie
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masonsmawmaw and cling- I do think that if you have diabetes or blood sugar issues that this medicine has more side effects especially with the weight loss.
Masonsmawmaw- that is pretty thin! I am glad that you are not losing any more weight. good luck in October with the scans
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Got my medicine from pharmacy, I almost fainted, it cost $22,700+! Thanks for the specialty pharmacist help, I got a grant so no copay!
I do have diabetes. Yesterday, my PCP on three months recheck was so happy to see my A1c dropped from 7.6 to 6.2. I told her that the new treatment on AA may spoil my next report, and it will not be my fault!
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cling- wow- $22,000 per month? My insurance says it is $17,300! Luckily there is co- pay assistance around! Hopefully with a careful diet and exercise you will be able to keep your HGBa1c in good shape !
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