Afinitor/Aromasin
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I have taken 10 days AA meds now. No adverse reaction, except my weight is decreasing rapidly. Almost 8 lbs in 10 days. Blood sugar is going up a bit. Got to watch what I eat. Hope everyone on this thread is doing fine.
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maybe I spoke too early about no SE on Afinitor! I have had some strange pain on the left side around waist area for 7 days. Two days ago my hubby noticed some little bumps in the pain area. Had difficulty sleep at night. Don’t even know which specialty doctor to go to except ER during the weekend. Finally this morning at 9, I called my Onc office and got to see the PA at 10. She took a look, said it’s shingles! Onc came and.confirmed it. It must be a rare SE of Afinitor! I had hepatitis B 40 years ago, now I am worried about the reactivation of hep B, which is one of the possible SE of Afinitor!
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cling- wow , you lost a lot of weight. Hopefully that has slowed down. Seems like weight loss happens to diabetics a lot I am glad that your blood sugar is still well controlled
Shingles is a total bummer! I hope that your case is mild. Shingles can happen to anyone- I got both of the new shingles shots last year while on Ibrance since I was really worried I would get it. I have many friends who got shingles who don’t have cancer and are not on meds.
I hope that the hep B stays quiet.
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Nkb I am so happy that this drug combo has been a winner for you! After all the negative things we heard when starting A/A it is wonderful to hear a success story. Hope you get many months, maybe even years on this tx.
Angie (MM) I was even more thrilled to hear things are going better for you, as you had such a tough time in the beginning. Have you been able to put any weight back on? Very best wishes for your upcoming scan.
Hoping the rest of you on A/A have few se's and a great response! I was not sorry to move on when it didn't work for me, but everyone is different. I am now on Piqray and fulvestrant and feeling good, so don't forget there are more options should this tx fail. (Hopefully only after a good long run on A/A)
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Jobur- nice to hear from you! I wasn’t sure if AA had stopped working for you. When did you start the Piqray? Had you ever been on faslodex before? Are you feeling as good on Piqray as AA? What about hair loss, blood sugar and cholesterol?
I hope that it works a good long time!
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Nkb - I started Piqray in July. Previously had a good long run (3 1/2 years) on Fas with Ibrance, so I'm hopeful it may work again with this new drug. I've been fortunate as far as se's so far, no hair loss and glucose has stayed just slightly above normal. Docs have not checked cholesterol since early this year when it was quite high, probably still is. I feel better on Piqray and Fas than I did on A/A. The achy muscles from aromasin got me down and after 6 mos on Afinitor sex became terribly painful. I'm a pretty happy camper on my current combo. Thanks for asking!
BTW, I read a post of yours a while back, I think it was on the "what you wish your friends knew" thread where you wrote about helping a friend understand how to help her friend with a stage 4 cancer dx. I was so impressed by your kindness and empathy, especially considering she doesn't know you have MBC. Wouldn't it be nice if we all had someone (like you) who understood all that a stage 4 dx means to explain to our friends and family what is and isn't helpful. Much easier and better than having to explain for ourselves.
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Jobur- I am glad that the piqray is so tolerable for you. I am going to ask my MO when I see her if she has used it yet. the UCSF second opinion doc said that definitely you can use it after Afinitor. but, did you have a test for the PIK3 mutation?
About kindness- when I was younger I didn't value it- now I do and so appreciate it when people are nice and helpful. I am trying to mindfully go out of my way to be kind and it feels really good. thanks for saying you noticed it.
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Hi Nkb - Yes, I had a biopsy and genomic testing done when I got my 1st liver met last December and I do have the PI3K mutation, at least in that lesion. Piqray was not on the market yet, so I did A/A.
I think kindness is the greatest wisdom. I try to be nice and friendly to everyone too and it seems to be contagious. There is a cashier at a local store who would never give you more than an ornery look. I made a point of always saying please and thank you and wishing her a nice day. After many months, she now says thank you and have a nice day too! Big victory for kindness, ha ha!
Edited to add It's much easier to be nice now that I am retired and not always in a hurry.
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Hi, how is everyone on AA doing? I started AA on 9/27/19 with great fear of SEs. Up to now , I am doing fine without any noticeable SE. however I have lost 13.5 lbs. Four days after got on AA, I developed Shingles. Of course, I blame that on AA. I probably suffered more by Shingles than AA or any other chemo I have gone thru!
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Hi Cling! I have been on A/A for one week tomorrow. So far so good. I have a bit of a weird taste in my mouth and some of my food tastes weird. Like fruit and some vegetables taste watery and maybe even a little dirty. But not all the time. Seems to come and go. As long as I can still taste chocolate...that's important right?
Shingles omg! I don't think that's a common side effect but how uncomfortable for you! I hope that is all resolved by now.
Doing your swish? My pharmacist said to do it three times a day, but I'm following the Swish trial recommendation of four times a day. I was only given two bottles of rinse. Based on so far, it's going to be a bottle a week. Hope they're planning to send me more!
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Hi Cling and Moomala!
I am glad that you are both doing well and shingles is gone. I used the mouth wash four times per day, I did go through it quicker than the pharmacist figured and had to fight to get more (now have tons left over) I would let them know that you are running out. if you get really low, you could consider one teaspoon four times per day instead of two until you get your refill.
One new side effect I have is very thin bendy fingernails. they split easily and catch on things. I usually have strong nails. I have cut them very short and painted them with diamond strength sally Hanson nail hardener about 20 coats and I think I am getting a handle on it. minor- but, terribly bothersome to snag on everything.
My cholesterol has risen 100 points, my MO is not too worried since all these drugs are rather short term. I will talk with my friend a cardiologist- my MO said that I can get a statin from my primary if I want to. will see. my blood sugar and weight are unchanged. My hair is lusciously thick! I am not anemic anymore, ANC is still on the low side, but, haven't had to stop the medicine. I have completed 8 months.
A new problem I have is a terrible tooth ache. I don't worry about that as much as the treatments for tooth aches are problematic due to the Zometa and Afinitor can cause slow healing. I see the endodontist on Friday and will see what he says. it's always something.
otherwise living as well as I can, taking extra care to visit the kids often, indulge my passions and doing exercise.
take care
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Moomala, I got a bottle of mouth wash and was instructed by the nurse to use it 4 times a day. I asked if I should start using it or until mouth sores develop? However she knows me well (I never had mouth sores during 9+ years of various cancer treatments), and said you can wait until you have it. So up to now, I only use it occasionally (Like once in 4-5 days) as a preventative measurement.
Nkb, I read in your posts that early in your AA treatment, you had some weird rashes. How were those rashes? I think my Shingles rashes are healed, but I still get one or two bumps pop up at different part of arms, legs or neck. They are itchy! I don’t know if they are AA rash or heat rash, because I am currently visiting my son in the hot Hawaii?
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I am on Zometa too NKB and I am so glad I had a whole bunch of dental work done in the years prior to dx. I do worry about down the road though. I'm pretty meticulous with my teeth after all the $$ I spent on dental work, but anything can happen. Keep us posted on that and I hope it resolves very soon. Toothaches are really intrusive.
I'm a pianist and piano teacher, and keep my fingernails very short at all times but I think I will pick up a bit of the nail hardener or something. That's a good suggestion. Thanks for that.
I surely do HOPE that my hair stops falling out. I only had a two week break between Ibrance and Afinitor. Ibrance was causing a ton of hair loss for me and this first week on Afinitor it seems to have accelerated! Ack!Cling I have a case of anxiety that makes me go on the hunt for things that could happen and things I should do to avoid them. My sisters all laugh at me and say "what? I never even read the inserts that come with my medications" I'm a total rule follower. So when the pharm said three times a day I went and looked up the protocol and it said four times a day so that's what I did. I may not even need to be doing it that much. It's just me being anxious I guess. I'm happy to hear you don't have trouble with mouth sores much. That eases my mind a lot.
I'm still so new at the whole thing - I was just diagnosed in April and only got a partial response to ibrance/letrozole. I wish other threads (especially this one!)were as active as the Ibrance thread. I go through this one sometimes so I can read the positives. MO says this combo gets a bad rep but it's working really well for a lot of her patients. She even has a few who started on A/A and were taken of Afinitor due to one thing or another but had gotten enough effect that they are doing well on Aromasin only. That was pretty encouraging to hear.
Cling how wonderful to be in Hawaii!!! I so would love to go back there some time. It's really a giant trip from where I live in New York but I was in Maui in 2015 and I am feeling the urge to go back again. So may things I'd like to do - I have unstable bone mets and unstable compression fractures in my spine so really travel isn't in the cards for this year but as SOON as I can get myself into asome sense of stability I'm hoping to take a trip or two.
Love seeing this thread on the front page!
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Here are the pertinent results from my recent PET/CT:
Osseous: Redemonstration of multifocal sclerotic lesions including lesion
in the right ischium with SUV max of 1.4, previously 1.5 (image 227).
Increased FDG avidity of posterior left iliac sclerotic lesion with SUV max
of 3.7, previously 2.6. Redemonstration of T7 vertebral body lesion with
SUV max of 2.3, previously 2.4. Redemonstration of bilateral rib fractures
with mild adjacent FDG avidity, likely reactive.I have decided to stay the course at this time. My MO desperately wants me to start back on Xgeva, but no way am I going down that road again. I have already developed ONJ and had a substantial surgery due to very bad bone loss in the jaw. Just recently, the same area in my mouth/teeth has been feeling very weird and tender. Going to make an appointment with the oral surgeon today to have him take a look at it. Guess I probably need to have my cholesterol checked too since I normally run a bit high as it is. Otherwise all is pretty good. One year down on Affinitor!
I'm in your pockets if you have scans coming up soon!
Angie
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Angie that's good to hear. I have not had a PET, only CT and nuclear bone scan but I think we like sclerotic lesions don't we? My mets are sclerotic and osseous. I have several compression fractures in the spine. Super encouraging to know that you were able to tough out that first bit of rough A/A for these results. I was so disappointed to have that first treatment failure after just a few months on Ibrance. Trying really hard to make friends with A/A but mentally getting dx in April and then the first progression in August followed by a second progression and treatment change in October knocked the stuffing outta me.
Pharmacist called me yesterday and literally...she thought two bottles was going to last me a month. So she talked to me and said 'no really three times a day swish is fine'. I'll still do four but I'll do a bit less on the last swish of the day to compromise. She ordered another two bottles for me which will be delivered in a week. I mentioned my insomnia and she said that if I'm swallowing any of that swish, it could be causing the insomnia.
I was at the office today for a radiation oncology check up and have already lost four pounds the first week. WHAT?!?!?! I am eating full meals plus Halloween candy! Hopefully that's a fluke! I go back in next week for medical oncology and zometa and we shall see. I don't have too much weight to lose.
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l love Hawaii!
Masonsmawmaw- that sounds pretty stable! Yay!!
Moomala- I would definitely do the mouthwash 4 x per day- decrease the dose if you need to if you are running out. The mouth sores was the main reason people had to stop this treatment and with the mouthwash now- MOs and researchers are very on board that this is the Med to take when you fail ibrance. They will be using more piqray if you have the pik 3 mutation- if you can get the circulating DNA to do the test ( if you are bone only) then to can switch to afinitor or to piqray if you started with afinitor.
Are you on aromasin or faslodex with the afinitor. I am not sure which one ( Ibrance or faslodex) caused my hair thinning- but, it had thinned by 50%- now it is back. My MO was surprised.
My tooth pain is from an infection underneath an old root canal. I am now on antibiotics and Motrin - then will need another root canal. I am in terrible pain. Off the afinitor while onthe antibiotics. My MO is out of the office til Monday- I talked to her partner.
My rashes were varied and just showed up and left after a few days. All were small red type rashes. The one that worried me was early on like a bruise on my lip- my MO wasn’t worried.
Take care!!
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NKB Hi! Let's go to Hawaii! Thanks for the support on the mouthwash. I don't know why the pharmacist was so insistent on three times a day. I'm certainly bucking their system. Really not sure why they are arguing with me about it. I'm on Aromasin and was on letrozole before with Ibrance. Definitely the Ibrance thinning the hair according to MO. They said it'd slow down after awhile. Luckily I had plenty of hair to start with. The thinning is not very noticeable. Losing hair doesn't really bug me that much. I'm more bothered by the height I lost from these compression fractures in my spine. And the four pounds I've lost on top of the 15 I lost earlier this year when I was so upset over my diagnosis. I now have to get some new clothing I'm not swimming in.
Damn on that infection. Toothaches are the pits. Feel better fast!
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Just thought I would add my story for those who will investigate affinitor in the future. After reading several bad experiences here, I was terrified to go on this combo, but my MO eventually convinced me. I was pleasantly surprised by my experience. I had basically no side effects ... no weight loss, no issues with food taste and only minor mouth sores. I took 5mg for one month and then went up to 10mg. I swished 4x a day at the beginning and decreased to 1-2x a day over a few months.
As for the results, they weren't as good as I hoped given how easy the drug was for me. I was on it for 5 months. It seemed to hold my liver mets stable for a few months, but my last scan showed definite progression.
FYI - I have also tried Alpelisib in the past and I only lasted 2 weeks due to terrible reaction. So, you can never guess how you will react!
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Thanks Sary! I really appreciate that perspective. And I'm sorry that you couldn't continue with the combination when it was not so bad for you. I had just a weak response with Ibrance/Letro for my first five months. After that it's hard to have confidence in the next treatment PLUS wonder about what sort of side-effects you might get - it looks as though more MO's are moving to A/A after I/L and I'm sure those of us who talking about being on it are going to be more helpful to those contemplating it. I read somewhere expected PFS on A/A is a little over 7 months so i don't have my hopes up after the big Ibrance disappointment tbh. Trying to change that mindset a little bit - glass feeling half-empty. There are several ladies on this thread who are WELL over 7 months. Have you decided on a treatment option now?
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I'm moving on to Capecitabine (Xeloda). My liver mets showed up about a year and a half ago and in that time I have quickly blown through the remaining hormone/targeted therapy combos. I'm hoping that this change in approach will be effective.
I hope you get much more than 7 months on A/A!
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Moomala- when I mentioned to the specialist at UCSF that the PFS was only 7 months- she said "I would be thrilled if you could get 7 months of PFS". I/L only works in 45-65 % of people, people forget that I think. I read that PFS for Xeloda is 4 months. What I wonder is if these months are including the people that it worked 0 months in?
Sary- good luck with your new medications! There is lots of good advice on that thread.
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Hi everyone, I will be starting A/A soon since Taxol has failed me, and I experienced further progression in my liver mets. I have read some of your recent posts and hope to read through several back pages soon. I was nervous about A/A because it seems to have a bad reputation, but some of you have posted encouraging comments, and I am hoping for the best. As you can see in my history, I have been through several lines of treatment already. I am grateful that my MO is willing to recommend anti-hormonal even after IV chemo.
So here I am, 4 1/2 years after my mbc diagnosis, still going strong. It is impossible to know how our bodies and disease will react to different treatments, and I wish you all good responses with minimal SEs.
Hugs and prayers from, Lynne
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Welcome 50’s girl. Wishing you a great run with AA. Be sure to use the mouthwash the first two months since mouth sores was the side effect that earned afinitor such a bad reputation.
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Hi NKB,
I think the PFS numbers are traditional stats in that they represent the median, 50% do worse and 50% do better.
I met with my MO on Friday, she stated that the 5 months I have been on A/A may not be long enough to see the full benefit of the drugs. "They take a long time to work." In any event, I seem to be stable TM wise but am headed into CT this Wednesday and Bone Scan next Monday. I have a few odds and ends that make me wonder if I am truly stable, I guess I will know by the end of the week.
Stacey
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I wasn’t warned of mouth sores and am dealing with a mouth full of painful canker sores.
It’s absolutely miserable and I can’t eat or drink much at all.
What rinse and remedies do you use?0 -
Leee- I’m sending you a picture Of what I was given. I did 2 teaspoons swish for 2 minutes 4 times per day for 2 months then stopped it. No sores. The study was done by Hope Rugo at UCSF I think. You need this!
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That's the rinse I'm prescribed too Nkb. I'm on Day 12 and the rinse seems to be keeping mouth sores at bay. I really thought that the rinse was standard protocol with A/A. It's curious that we are still seeing patients on this thread who aren't being prescribed. I'm really sorry Leee that this wasn't gone over with you. I'm sure your MO will prescribe it for you and it should help pretty quickly.
SbAaronson I hope your CT jives with the TMs. This was my exact issue on Ibrance/Letrozole. My TM's were dropping but the scans showed differently. The NP's kept telling me that the TMs looked so good I wasn't going to have any trouble on my next scan. The MO said that Ibrance/Letrozole take a long time to work so let's give this another couple of months. But. At five months the bone scan showed uptake (btw again my CT was completely stable but bone scan was not) I hope you get good news after your scans. It's nice to be able to 1. Feel well on the treatment 2. Labs look good - even the TMs. But the bottom line is those scans and that's defo not the fun part! I felt like the MO was going to have to PRY Ibrance out of my hands - it was that easy for me at the highest dosage and for quite awhile I felt well on it - like my old self. But if I'm realistic the first few weeks on Ibrance I had some mild SE 's too and my body got used to it. Feeling more hopeful about AA when I remember that.
Hi Lynne, Welcome to A/A! This thread seems to be waking up a little which is great. I think as more and more MO's transition from Ibrance failure to A/A we will see more people posting here which is great given how the early days of this drug seems to have generated some really scary posts from patients. I don't know how to say glad you're here without sounding wrong (because none of us should be here!) but it is nice to have another A/A person here and nice to see YOU! I'm on Day 12 A/A and I have had mild SE's. I can tell my body is getting used to a new drug. I've had a little heartburn this last two weeks, a little insomnia, some hot flashes, I would say Little D not Big D, here and there a weird taste in my mouth and sometimes foods taste a little weird. Nothing constant. I'm expecting all this to work through in the next six weeks or so.
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I'm curious....who else has experienced substantial weight loss? Moomala, I see that you lost 4 pounds the first week...any further weight loss for you? I'm still down a total of 40 pounds since starting Affinitor last October and I can't really figure out the reason. Initially, I know the pounds were coming off due to mouth sores and lack of appetite, but those SE's have for the most part disappeared. I had extra weight to spare, so that part didn't really bother me, but with my weight now at 115 (I'm 5'6"), I really look like a sack of bones and I'm concerned that if I get really "sick" I could lose more weight which I don't think I can spare. Does anyone know if weight loss is a documented SE of Affinitor? I'm only on 5mg and have no real worrisome SE's, so I don't know what else I can do. MO had given me a script for some kind of marijuana related pill that was supposed to increase my appetite, but it made me high instead, so I don't take it. Any suggestions to help gain/maintain weight will be very much appreciated!
In your pockets for upcoming scans, labs etc.
Angie (masonsmawmaw)
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HI Moomala,
I had a mixed response on the Ibrance/Faslodex protocol. Felt pretty good on it. Given all the big success stories I have heard,it was a big disappointment to give up on the Ibrance after only 6 months. I was terrified of Afinitor after hearing the pharmacist go through the potential SE's but I have done really well on it so far and would really appreciate getting a significant amount of time on it. Thanks for your good scan vibes, I am most concerned with the hiccuping thing I have going, they don't last long, sometimes just one hiccup but it is pretty much a daily occurrence. I also have some pain in my pelvic bones that seems to come and go, I am a runner, this may just be that, but it needs to be chased down... Fingers Crossed!
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I get a lone hiccup or hiccup episode too here and there SBAaronson but for me I think it's because the compression fractures I had have put some pressure on my diaphragm. I notice that I can get a lone hiccup if I bend over so I think that's gotta be what it is. I lost a couple inches of my height and a lot of that was in my torso.
It would be nice to get a good long period of stability wouldn't it? DH and I are making some travel plans but the idea of having to change treatments feels like it puts a damper on that. I get that disappointment you felt about Ibrance. It took me a couple of weeks to work through that funk. I think I cried as much then as when I was first diagnosed. You and I are having a similiar 2019 and I can't say I'm loving it. I do , however feel pretty much okay on the treatments so far and once I'm past this first 6-8- weeks on A/A I think I'll feel less anxious.
Oh I miss running! So. Much. I have pretty good mobility right now but I'm super limited in what I'm allowed to do at for workouts due to fracture risk. That really stinks.
Angie, I am not sure if I've lost more weight. I'll find out Thursday when I go in for labs and Zometa. I really do not have much weight to lose so I hope not. I've been a big big fan of leftover Halloween candy this week. Otherwise my step would be to continue with the MJ related pills for appetite. If the high is bothering you, can you reduce the dose? It's interesting that you've never been able to gain the weight back. Is your appetite still low? I guess I was surprised that I'd lost weight becuase I was eating so much that week!
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