Afinitor/Aromasin
Comments
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Stacey I apologize if I was not a clear and implied that P13K had an effect on Ibrance or Afinitor. I meant to communicate that having the P13K mutation could mean you might not have a fantastic home-run on Ibrance or Afinitor which some people are getting. They're all targeted therapies but each is a different target. Afinitor being the mTor and Piqray being the P13K. If you have P13K mutation then Piqray, being a P13K targeted therapy is likely going to work for you. My MO says that my continual partial responses are attributed to not hitting just the right pathway. I hope to get more answers when I see her next week and further when I see the new MO at Dana Farber later this month. I'm still not fully decided on this or going over to Xeloda first. Piqray was zoomed through to FDA approval but I know very few people who have an easy time with SE's. Jobur is managing Piqray after Afinitor nicely as are a few others on that thread who used to be on this one... Still - that's what we heard about Afinitor too. If you look back at the beinning so f this thread there are some very negative reviews and people fearful of trying Afinitor I have SE's (this week I'm having fatigue, a little swelling, my blood sugar is high and goodness knows what my platelets are PLUS I still struggle with varying amounts of D every day all day. Immodium helps a lot but if I stop taking immodium the D comes back.) but I'm a person who thinks that SE's usually wear off or come and go. I have a friend here who is in week five of Afinotr and can't seem to manage nausea. What's crappy to me is that I don' tfeel very awesome on A/A and I'm just hoping I get a break between A/A and my next treatment. I can't tell if it's Afinitor causing me to feel a little crapola or if it's just all the stress I'm under right now with other issues, still recovering from pneumonia or WHAT!
Anyway I have hip MRI tomorrow and Thursday I'm off to nuclear bone scan and CT scans as I complete week 12 of A/A. Again I will be shocked if I'm stable but if I am i will be very happy. If not, I have a very big decision to make.
Wish me luck!
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Moomala-
I think that you are right about the side effects of treatments. My MO says that people with side effects talk more about them so that's what we hear. she also told me that before the mouth wash prophylaxis the first two months was discovered, she had stopped using AA- now with that she uses it much more. I do hear AA mentioned a lot as the drug of choice after failure with Ibrance. it does seem like Piqray has a lot of side effects- but, it may be the same things with those people piping up. the blood sugar problems are greater with piqray and some hair loss. I never get D- so can't comment on that. I don't get nausea, occasional loss of appetite, I use ginger for the nausea I get from Zometa.
good luck with the scans!
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Moomala,
After reading your post I did some research and now have a better understanding regarding the P13K effect on these drugs. I didn't have anything close to great response on I/F and appear to be holding stable on the A/A, but my TM's have never taken a nose dive!
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6325472/ This is the article I read, although science heavy, I have more clarity, for better or worse. I also have the FGFR2 mutation that doesn't seem like a good thing...
I had a really rough time mentally last week, I do well for a good stretch of time but when the blues come, it's dark and difficult. It's of course the sadness around what I will miss in my children's lives. How do we work around this?
My last bloodwork looked good, TM's down a bit, so stable for now. I did start the Xgeva, some nausea the day of the shot but nothing else in terms of SE's I can see or feel. Struggling with the rash and the swelling in my right breast. Having a mammogram and ultrasound to rule out anything awful. I think it's the lymphatic system overwhelmed by this rash.
Anyway, let's get you a stable scan and a work around to make the Afinitor a better option for you. The decision to Piqray or not is for another day!
Thank you for your on-going support. I am fortunate to have this board as an outlet.
Best
Stacey
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I am so sure I have progression just from comments made by docs since my scans last week. I'll see MO thursday for the final word. But this morning in my portal my CA 27.29 was down from 230 to 195. This ought to be interesting. I don't typically put a whole lot of stock into tumor markers but now that I have a little more history my TM's went down like this in month 2 through 4 on Ibrance and then crept back up. We shall see. I won't be sad to leave A/A but I could also stay on it too and put up with it.
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Moomala and Stacy- I posted here several hours ago- I guess that it went into cyberspace instead. Moomala- hopefully your TMs going down is good sign! If so, then a lower dose could be the ticket to feeling better.
I have been profoundly tired the last two weeks, got my TMs back today and they have skyrocketed! I guess that I am at the end for AA- I am on month 11. I will have a scan in a week or so and then see my MO feb 4. I am so disappointed- this has been an easy treatment for me and I fear that Xeloda is next which scares me with the HFS.
Hope everyone is having a good day today -
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Are we sitting down? My scans were stable!!! So I guess this stuff works after all! Yahoo! I have a couple of small "issues"...one tiny new spot on my pelvis that RO is going to radiate. Pathologic fractures in the top of my femur, my hip, my acetabular, my S1 and S2. (no wonder my back hurts)
I also have to see a thoracic surgeon because one of my lung tumors is looking questionable not breast cancer. But that tumor also is stable so I'm just going with stable.My first stable scan! I like it!
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NKB,
I sit here typing with tears in my eyes. I am so sorry to hear this news, and, in general truly angry that any of us have to ride this roller-coaster. I too find A/A a very manageable regime, (much easier than the I/F combo though I bombed out fast on that one) and fear what's next. I don't know what you know about your tumor mutations but there are other targeted therapies that may be an option. In any event, every time we have to change it is bone-chilling scary.
Please let us know how the scan and MO visits go.
Moomala, look forward to hearing your update.
As for me. At present, my biggest issue seems to be this breast swelling and the on-going rash saga. I have schedule a mammogram and ultrasound to rule out anything really fun! TM's drawn again the 31st, no scan planned until early March.
I will close with the cheer I often lead on the elevator on the way to the 3rd floor at Tower Oncology - Fuck Cancer!
-Stacey
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Dont' get too disappointed yet NKB - you just never know. Still, you did have a pretty good run with A/A right? As much as this possibility sucks you beat the PFS data by a couple months? I have to think that changing treatment at any stage has to stink. I was in the realtime support group today where we have a number of quite young women (late thirties) who are terrified of Ibrance failing. I guess all of us feel that way about whatever we're on, especially once you get used to it.
But I'm all about waiting for scans. Let us know when exactly yours are ok?
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Yay moomala! So happy your scan is good.
stacy- thank you for your thoughts. I hope the rash and breast symptoms are cancer dying type reaction. (FC is definitely one of my mantras also-;).)
I did feel really bad the day I got the results, but, honestly, I’ve been worried for awhile, because I knew I was at the end of the median PFS stats, so waiting for the other shoe to drop while hoping for a reprieve. I took an Ativan and slept 10 hours and felt better yesterday. I am quite sure my bone Mets have progressed and I am just hopeful that the Mets haven’t gone anywhere else. my scan is on the 30th and MO appt the 4th.Will be staying on AA until the 4th probably and will be reading this thread for quite awhile. It has been so nice to have support from others on the same treatment.
Hugs!
50sLynn- how are you doing
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Moomala, WOOHOO for stable scans. I am doing the happy dance for you. Now I hope you start feeling better and building up your strength after all you’ve been through. Another WOOHOO for your first stable scan
Nkb, I am doing pretty well. I feel SO much better since I was switched from Aromasin to Femara. It is amazing how hard Aromasin hit me. I might already have mentioned that my TMs went up more than 1000 points last month. They are now over 3000. My liver numbers also continue to rise. I had scans yesterday, but I don’t have results yet. It was my husband’s birthday, so I treated him to a half day at the hospital along with breakfast in the cafeteria. Who could ask for more, right? Anyway, as always, I have made up my own explanation for what has happened. I decided that the liver numbers are rising as a side effect of Afinitor. I also decided that my TMs rose as a result of my reaction to Aromasin. I think it caused a tumor flare-like reaction with accompanying TM increase. This explanation will hold me until I get results. It helps me cope. I hope next week’s scan resilts are better for you than you expect.
Stacey, it must be frustrating to have to wait until March for your tests/scans. I find that the waiting, wondering, worrying get to me after a while.
Hugs and prayers from, Lynne
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Hi Yall!
I'm coming up on month 16 of Affinitor/Faslodex (was on Aromasin for a little while until mutation showed no benefit). Had scans on Wednesday......drum roll please.... STABLE, STABLE STABLE! ABSOLUTELY NO NEW AREAS OF CONCERN! I would have bet the farm that I had progression due to increased back and leg pain, but thankfully, I was wrong. I AM SO BLESSED TO BE BLESSED!
Happy to hear of your stable scans too Moomala!
50'sgirl....I like your way of thinking!
Nkb....praying for better results for you.
SB....thoughts are with you.
Until later,
Angie
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Angie, You deserve a double WOOHOO and an extra long happy dance. WOOHOO for 16 months and another WOOHOO for being stable. I love reading good news. I hope we keep the trend going.
Hugs and prayers from, lynn
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I just wanted to share some positive news. I’ve been on AA since July 2018 and am doing great. I do still get mouth sores sometimes. I just had a brain MRI and it was stable. I was worried as I was feeling a bit wonky. Unsteady on my feet. my TMs are up. They were down to 45 last summer but are now up to 400. However my oncologist doesn’t seem at all concerned with that. So my husband and I have booked a Danube River cruise for April! I’ve always wanted to do that. Btw, in July 2018 I was given two months to live so for me AA are wonder drugs!
I’ll be having a body CT in February so fingers crossed.
Hugs and prayers to everyone!
Li
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Dear Afinitor Board:
We are so fortunate to have one another for support. There is strength in numbers! Let's all press on.
Hope everyone is in for good weather and a lovely weekend ahead!
Stacey
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So much good news! Yes- take the trip!
50sgirl- you are one thoughtful gift giver!0 -
Lin, Thank you for posting about the good results you have had with A/A. I love to read good news. I do hope you go on that cruise. It sounds fantastic. What a wonderful opportunity. I will think good thoughts for your February scans.
Stacey, You are so right about the support we have here. The A/A group is relatively small, but it is filled with special people. I know I can come here when I feel down.
I haven’t talked to my MO yet, but my scan results are posted to the patient portal. I guess mixed results would be an accurate assessment, but I like to concentrate on the positive. As you probably know, I was most concerned with the liver mets. All my liver mets have shrunk and there are no new mets seen there. YAY! Some are much smaller and others are only slightly smaller, but I am happy with that. Bone mets are unchanged. Of course all three reports say that I have mets in every bone structure, but oh well. Now for the other side of the coin. I have had a few tiny spots in my spleen for a while. This time those spots increased in both size and number and now look like metastatic disease. I have had one gall stone with no wall thickening for 4 1/2 years. Now I have many gallstones with wall thickening and an enlarged common bile duct. Finally, the left atrium of my heart is quite enlarged. This is new. All-in-all, I am focused on the bones and liver. I am going away next week, so I am not scheduled to meet with MO until the 18th (after I return). I figure that he will call me on Monday if the results show anything overly concerning. Otherwise, HAWAII, HERE I COME!!!!!
Hugs and prayers from, Lynne
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thanks NH and Nkb. have fun in Hawaii Lynne! Which island?
I must correct my numbers. TMs went from 77 to 117! Not 400! See why I thought my brain scan might be bad. Sometimes my braindoesn’t work that well! 🤪
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Lynne- a complicated results scan! The liver being better sounds fantastic.
I love Hawaii! Good timing for someone in NH as well.
my scan is on Thur but, results never go on the portal- so will wait for my Appointment. TMs don’t go on the portal either.Hugs
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Has anyone developed a cough while on AA and if so how long before it cleared up?
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Leee, I have not had an issue with coughing, but I think that the duration would depend on the cause. There can be serious reasons for the cough as well as some inconsequential ones. Have you discussed it with your MO? Do you know what is causing the cough? Is it something that needs to be treated? I hope you improve soon. Don’t let it get out of hand.
Hugs and prayers from, Lynne
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I have been thinking about my scans results, and I think the comment about the enlarged left atrium is a mistake. Here are my reasons: 1. The comment is on the abdomens CT report. The heart is in the chest. 2. The chest CT reports says that the heart is of normal size and contours. 3. The atrium comment is only is details section and not in summary. 4. If my left atrium was really 5.4 cm, I would have symptoms, but I have none. I think the radiologist pulled up the report form on his computer and forgot to clear out that field. It is a serious stupid mistake, of course. All the other issues report fit into my history, so I think the rest is okay. I will talk to MO tomorrow I hope
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Lynne,
ALOHA!!!! So jealous...
I did just plan a summer trip to Montana/Yellowstone with my kids (25 & 27). Really looking forward to it, have never been.
Full steam ahead!
Stacey
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50sgirl , I saw that you are on Femara now. Any side effects with this drug? Is this manageable?
My MO said that the PET scan shows mixed results but overall no new lesions in the liver. So she said that I could take a chemo break and started me on Femara. Previoulsly, I was on CMF which was really hard. MY QOL had gone down drastically.
I am happy to be off the chemo treatments but worry about the progression with the liver mets with in the next three months on Femara. My next scan is in mid-April.
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50’sgirl-
I had a clear chest X-ray of lungs and went off the AA because MO said it was from the Afinitor. I also had progression in the liver on the PET so didn’t go back on the AA. I’ll definitely mention it to MO again.
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S3K5, I have only been on Femara for a month, but I am not having any SEs. Aromasin gave me terrible SEs, so this is a nice change. I have heard that some people get achy joints from Femara, but exercise such as walking can help. I hope you have a good experience with it and that it beats back those liver mets.
Leee, I hope you find some relief from that cough soon.
For those of you who asked, I am going to Oahu. I prefer Maui, but my dh likes Oahu. A definite consideration was cost. We are Disney Vacation Club members. We will be staying at the Aulani Disney resort and can use our vacation points rather than money. it is a nice resort in a quiet area.Hugs and prayers from, Lynne
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Lynne, thanks for your response. Hope Femara works for you too.
At present I have to regain my energy that was lost during my CMF chemo. That regimen was hard for me. So I am happy to get a break. Hopefully, I can get back to normal soon. I will try to walk and exercise to keep the SEs minimal.
Have a wonderful trip!
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I had a second opinion done at Dana Farber in Boston yesterday. Oh wow I really loved i there and the oncologist was such a warm, connected person.
She agreed that my stability warrants staying on A/A now, even though I have a small progression on my pelvis. This will be radiated soon. She mapped out the next steps and convinced me that A/A is working and that I have slow growing cancer that took 24 years to come back. But A/A is currently working. Next steps for her would be Piqray and Fulvestrant. Then Xeloda and then IV chemo. Clinical trials are always available as well. I knew all this from the boards here but it's also very nice to have the doctor sketch that out with a paper and pencil. But that at ANY time medications can be changed if I ask. She recommended lowering my dosage of Afinitor to control the diarhhea that is making my potassium levels sink. She also talked to me about the back pain and said that this is critical to take care of asap just for QOL.
I am really thinking today about the difference between her and my MO here. She gave me a lot of love and hope. My MO here is really great and I feel confidence in her but she doesn't often address QOL. Or she downplays it. Maybe she just really wants me to stay on 10mg of Afinitor I don't know but the doc at Dana Farber was all about the dosage change.
She also address my lung tumor but she has not seen the scans so she couldn't really comment until today or tomorrow when she's had a chance to look at them. She did say that since this tumor (whether it's breast cancer or primary lung cancer, which is what the last radiologist is suggesting,) ihas been stable for ten months and why go in and create more problems with a very serious thoracic surgery when we can just leave it alone. If it becomes active we can think about thoracic surgery then. I am relieved by this idea. But again, she hasn't seen the scan so I'm still a little anxious that she will change her mind on this.
Best of all, Dana Farber Research Institue has it's own version of Foundation One testing. And it's free. I was so excited and grateful about this. The timing is perfect since the test will take a few months and I will be now be on A/A for a few months.
All of this definitely perked me up after months of crappy event after crappy event and getting a bit depressed about it.
NKB have you had the PI3K mutation test yet? She said even she has just a few patients on it but they're tolerating. Mostly the problems she's seen that they are having trouble with is glucose levels. The Piqray page on facebook is pretty scary with side effects so I'm staying away from that group, knowing that I will probably give Piqray a try when I'm done with A/A
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Moom-
This sounds good! The UCSF doc I saw last year said that she was very quick to lower the dose of afinitor for side effects if needed. I think it is great that you are staying on it for a few more months - so you have the PIK3 mutation or you are being tested for it now? Lung cancer is being treated with immune drugs now- so if your lung progresses and doesn’t look like breast cancer Mets, it could be interesting to biopsy but, stable to me always means don’t look for trouble
I have not had the PI3K or ESR1 tests yet- I will talk to my MO about doing them. Though piqray sounds really scary. I really don’t want Xeloda either and those seem like the next choices. Not too crazy about the idea of faslodex shots again- would love an oral SERD to be approved. I have the scan in 2 days. My TMs went up 3000 points- so I know I have a progression- at this point I am just hoping that it is still only in my bones. Painted my toenails red today to prepare myself.
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Well- I have to say good bye to Afinitor- I have a progression- luckily it still only in my bones. I got a good run and felt quite good most of that 11 months. Hoping you all get that much time or more.
I will keep watching this site to see how you all are doing.
Hugs
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Nkb, I am sorry that you have progression, but you are right, it is good that it is still only in your bones. Do you know what your next treatment will be? I hope that you dofind time to check in here so we know how you are doing. Thank you for all the support you have provided.
Hugs and prayers from, Lynne
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