Afinitor/Aromasin
Comments
-
Granax2 - I had pretty similar se's to what you describe in December when I started the exemestane/Aromasin, achy all over, especially back and shoulders, and the fatigue seemed to start almost immediately. I was surprised that plain old Tylenol helped, but it did. Can't say these se's have entirely disappeared, but they have definitely improved over the last month. Hope your burning back and shoulder blades feel better soon.
Shetland - I must stick up for my mo here. She is not a liar, but she is an eternal optimist. She only said most of her patients have not had mouth sores, not that mouth sore aren't a known se. I am an eternal skeptic, and doesn't Novartis make the mouthwash too? Don't get me wrong, I'm sure plenty of people get those miserable mouth sores, but I'm ok with mo's wait and see approach.
MM - Hope you are able to get those se's under control soon. 20 lbs is a lot to lose in 2 months, especially over the holidays when most of us put on a few pounds. Fingers crossed the Marisol helps your appetite. I'm with you on hating those damn blister packs, but I saw in the instructions for Afinitor that you are supposed to leave them in there until you take it. Now I know why, thanks!
HLB - Glad to hear abraxane is doable for you.
I'm only on day 5 of Afinitor, but the only difference I have noticed so far is I seem to wake up with a headache every day. I do not normally ever get headaches.
Also, my mo has ordered weekly labs for the first month to monitor WBC, liver, and kidney function. From what I gleaned from the Afinitor site, it only says this and other blood work should be monitored. Nothing about weekly labs.
0 -
I'm defying AA, I'm not doing the mouthwash, yet.😨 So far, so good. My painful lower back back went back to normal, whatever normal is for 71 year old ladies. Ha. My shoulders just feel tired.
I'm usually a rule follower but steroids do strange things to me. Every time I reach for the bottle I think but what if I do absorb it and turn into a monster? I think I'm just going to wait. I promise, everyone in my family knows that dexamethasone and I are a mix no one likes.
So, except for the SE at the beginning and some ongoing fatigue, I think I'm doing well for week one. Check that off my list.
0 -
Ladies; best of luck for those of you electing not to do the mouthwash. I was of the same mind...just hated to add another "drug" to the long list that I'm already on. And, honestly, I'm afraid of anything having to do with steroids. My onc assured me that as long as I don't swallow it, I won't have any issues related to steroid use. My sores didn't start until probably around the 8 week mark so unfortunately, I'm swishing 2 to 3 times daily now. The actual sores on the lining of my mouth and jaw aren't that bad, it's the rawness of my tongue that is most bothersome. Doesn't really feel like sores per se, but everything, and I mean EVERYTHING, burns and stings when it hits my tongue. Taste buds are also affected. So here's hoping that the mouthwash does it thing!
Praying for all of us that this combo works and that the SE's continue to diminish. Have a wonderful day!
0 -
I am now a veteran of A/A combo. I got 19 months from the A/A treatment and was with tumor markers in the normal range for more than a year. I am now on Xeloda which is working quite well and all numbers are again in the normal range. I want to contribute some information from my experience of being on A/A in case it could help. First of all, I got pneumonitis from Afinitor in the first three months of taking Afinitor. Since I did not have symptoms and Afinitor brought down the markers drastically into the normal range already, my MO decided to push on. This situation remained unchanged until Afinitor stopped working after a 19 month course. In the end, my pneumonitis led to loosing 50% of lung function. However and happily, the Afinitor induced pneumonitis is reversible. In couple of months after stopping Afinitor, scan showed the pneumonitis was gone, and my breathing test showed my lung function became normal. Secondly, I did not use the mouth rinse regularly. I did get mouth sours now and then. I would use the mouth rinse only when I had mourth sours. The most important message here is if my MO had have changed the treatment at the first sign of pneumonitis, I would have only gotten three months from Afinitor. Instead, I have not only gained 16 months more of good life, but also come out without pneumonitis in the lungs after all. Good luck, Laydies!
0 -
Xavo. That's very good news for those of us in the beginning stages of AA. I had heard that pneumonitis induced by A was permanent. It was my worst fear of taking this combo. Now I can check that off my worry list.Did you lose your appetite? I have.
0 -
Grannax2, I did loose my appetite mainly due to the taste change. I lost more than 30 pounds in the first two months on Afinitor. It might have very little to do with eating, for I did not eat less although nothing was tasty to me then. Afinitor affects food absortion somehow. Loosing weight perhaps would not happen to everyone, though. Due to the pneumonitis, my MO reduced the doses of Afinitor from 10 to 7.5 and then to 5 in 9 months. I sticked to 5 through the rest months.
0 -
I don't know if I've lost much yet. But, the weird taste changes have definitely caused me to eat much less than my normal. I have weight to lose so it will be OK but I'm not getting enough nutrition for sure. I guess that just goes to show that there's a way to combat all the possible SE of AA. I'm glad you're doing well. Are you on your third TX? Where are your mets?
0 -
Grannax2, I could only wish Xeloda was my third line. No, it's my fifth. I know I should update my profile but could not help being lazy. My first line treatment was letrozole alone for my bone only disease. It lasted for 18 months. Then 7 small mets popped up in my liver. I thus switched my care to Dana Farber. My Dana Farber MO started my second line treatment with Faslodex/Ibrance which did not show efficacy after three months. My MO probably did not want to risk loosing control over the liver mets which actually did not have much progression. She started me on A/A. A/A gave me more than 15 months of normal markers and blood numbers in the 19 month course. After A/A, my MO let me try Tamoxifen, thinking since I did not do it with my triple negative type of cancer from the initial diagnosis, it might hit the cancer that now is ER positive. Tamoxifen did not work. I might well become hormonal treatment resistant. In August 2018 I started Xeloda. I am now doing rather well in terms of all numbers are good. My CA 15-3 was 18 from the last blood work. It's been in normal range since September. The last CT scan showed the liver mets are still there, although small, no more than 1 cm. I never have had a Pet scan. I haven't have much side effects from Xeloda, which is lucky particularly in the sense that I am allowed to be on the largest doses for my weight to have the biggest power possible to hit the cancer. I hope A/A work great for you and the side effects would not be in the way. My best wishes to all ladies here.
0 -
My profile is not even done. I tried at the beginning but it was too complicated to list all my TX over the past 26 years of four DX.Someday, I'll try again.
I did have genomic testing done about one year ago. I am hormone resistant ESR1 but that has had no impact, on my TX. My MO is ordering it again on my December BX. Of course it takes about two months. We did the new BX on my new mets mainly to see if my ERPR+HER 2- has changed. Sounds like yours changed from TN to ER+? I hoping mine might change to HER+ therefore giving me more options for TX.
My past TX include all the big guns chemo available at each DX. Plus I've had every hormone therapy out there. It's no surprise that my cancer has figured a way around it. My MO explained that Ibrance could not be prescribed without including a AI no matter what my genomic testing said because of FDA requiring it. She said Faslodex is basically just another hormone TX. Now I'm faced with the same problem knowing that Aromasin is not helping at all but I still have to take it. Frustrating.
But I can't fight the FDA. I can fight liver mets. I did have y90 because my liver mets did not respond to I/L. They did respond for 20 months to y90. So, here I am with progression in all three areas lung, chest and liver. My DX of MBC was two years ago so this is just my second line. Xeloda may be my next TX I hope it works for you. If you want to know anything more about y90 I can tell you my experience. If the time comes and I am eligible, I will do it again.💞
0 -
Xavo - Thanks so much for posting your experience. It's great to hear you got 19 months out of this tx, and the pneumonitis was temporary.
A couple of questions if you don't mind, did you have se's in the beginning that improved or went away during the 19 months? And what kind of scans do you normally have?
I wish I could recommend retrying Fas/Ibrance, as I don't think 3 months is quite enough to see results, but it does seem it is not all that effective on liver mets. Hope Xeloda lets you float on my favorite river (DeNial) for a good long while.
Jo
0 -
MM - One week down the hatch for me, and I am becoming a believer in that mouthwash. My gums have felt strange and burn the last couple days and today my gums bled when I brushed my teeth. Do you have any idea how much the mouthwash costs before insurance? I am leery of it pushing me into the donut hole in Part D if it is too pricey.
Hope the mouthwash is truly magic and helps soon! How is the D?
0 -
Jobur, I did have many side effects at the beginning. I had hair thinning, pneumonitis, mouth sores, finger nail chipping, taste going off, higher blood sugar, higher blood pressure, and might be more there. The side effects did become less bothering over time, except the pneumonitis. The hair thinning stopped after several months, and grew even thicker later. I got very painful mouth sores immediacy after taking Afinitor. At first, the mouth sores come an go frequent. Over time, it became less and less frequently. As for what scans I have had, they have been bone scans and CT scans. I never had pet scan.
0 -
Jobur- Sorry, I'm not sure of the cost of the mouthwash before insurance. I had zero copay on it, so I didn't even bother looking at the price on the label. Going to pick up my prescription for Marisol today...hope it helps with the appetite. Down 2 more pounds this morning, so a total of 22 pounds since the end of October. I'm afraid that even if the appetite stimulant works, I will still be severely limited as to what I can eat/drink until I get these mouth sores under control. I am barely able to brush my teeth...any recommendations for a tooth paste that is not too minty and kind of bland? The big D is still hit or miss at this time.
Xavo- what are signs/symptoms of the pneumonitis?
Grannax- you are such a warrior! Can't wait to see pics from your next modeling gig!
I am still blessed to be bone only mets so extra prayers go out to all of you who have had to tackle progression in other areas.
Take care friends,
MM
0 -
masonsmawmaw, in me case, the symptoms of pneumonitis included a lot of night sweats, sore throat, hard to do really deep breathing. I did not have short breath, nor constant coughing. My lungs sounded clear to my MO and my primary, I had normal energy also.
0 -
Xavo -Thanks again for stopping back to share your experiences. I really appreciate it!
MM - I was about to ask the same question about the toothpaste. I thought of Sensodyne, but it's more for sensitive teeth. Tom's makes an "all natural" toothpaste, whatever that means. I don't blame you for not looking at the cost of the mouthwash, I'd do the same thing. In fact, I have zero idea as to where that damn donut hole is. While on Ibrance I never gave it a thought, I was in and out of the hole in January. Hope that mouthwash takes care of your poor mouth so you are able to eat again.
Grannax, I am so sorry to hear you have been through the ringer with chemo, etc. Did you get results from you bx yet? I was hoping for a change to HER2+ also, but only change was I am now ER-. I also found it so interesting when you told me the location of your bx. Mine was under my right rib cage. The liver sure is a big organ. So what is y90? And are you a model? Pics please!
Had my 1 week blood work done today and DALP and ALT have doubled and are now outside the normal range. They will recheck next week. Mouth is better today. Cold and headaches are gone, but thanks to them I may finally be drinking a healthy amount of water, ha ha!
0 -
jobur. First, nope I'm not a real model. I'm a retired hairdresser, seriously, over thirty years at my job. I'm short, overweight and shy in front of a lot of people. I never once even dreamed of being a model. But, a very persuasive women offered me an opportunity and I reluctantly accepted. Suzanne Lindley is the co founder of say Yes to Hope. Her non profit organization focuses on treatments for liver tumors. From the interventional radiologist, IR, who did the radioembolization on my liver mets, she got my name.
I don't know the whole story, but somehow she connected with an Internationally known fashion designer, Samina Mogul. They decided together to promote awareness of stage IV patients who have had a treatment called SIR Spheres y90 to treat their liver tumors. Many cancers metastasize to the liver. Suzanne is a 13 year survivor of colon cancer that had spread to her liver. It's called SMGlobal Catwalk and includes survivor models, like me. To date, there have been numerous Fashion Shows in Dallas and NYC. I was in the recent Dallas show and will be in the February 16 Show in NYC. My only qualification is that I had liver mets treated by SIR Spheres. I actually got to model with other survivors at a real fashion show. Samina's gowns are exquisite, so the real models were there wearing her collection. It was quite out of my comfort zone.
You can see my video with pics of me modeling here on the "Would you share your Stage IV story with us?" Thread. In "Vicki's story" you will hear my story and explanation of the y90 procedures I had in April and May of 2017. If you watch it, you will have most of your questions answered. Even though I recently have been DX with progression, I would still do y90 again if I'm a candidate in the future. It really worked for me for about 18 months.
I don't know if you are a candidate, if you are interested, but it's a very effective TX for stubborn liver mets.💞
0 -
Hello AA ladies!!
I've been on Faslodex since May in conjunction with Verzenio but unfortunately it's not working so I'll be moving on.
One of the few options I have left is Ainitor/Aromisin but going through this thread is very discouraging in terms of side effects.. lately I've noticed that a few people seem to be having trouble with the Aromisin part of the drug and opt to take Faslodex with Afinitor instead.
I wonder how many of you are doing that and how are you managing the SEs??
Thank you all!!
0 -
Ok, jobur, I apologize to your onc. I had an attitude that day, didn't I? I think I was feeling defensive on behalf of some of our bco sisters whose oncs don't believe them about their side effects.
I seem to recall that there are several generic manufacturers of the dexa rinse. I looked into it because I needed to make sure I was getting an alcohol-free one as specified by the SWISH trial.
I used a mild children's tooth paste from the natural foods store.
0 -
how do I see this video? I’m terrified just found out xeloda didn’t work on my liver mets after 5 rounds. I’m interested in y90. I don’t have any other mets anywhere.0
-
Rt Chicago. Go to the thread that's called " Would you share your Stage IV story with us? It's about the fourth from the top on this page (page 1). The mods wrote a post and call it "Vicki's story" Tap on that and you can see my video.
Or you can ask me anything about y90. It's actually called radioembolization. It's done by a Interventional Radiologist (IR). Mine was done with SIR Spheres using yitrium 90. It's done similarly to an angiogram. The IR inserts a needle into the femoral artery and then the y90 resin goes through the blood supply to each tumor and kills the tumor. It usually takes three procedures, the first one is called mapping. The IR maps his plan by looking at all the tumors and cutting off some of the blood supply. Then he calculates how much yitrium he needs. If you have tumors in both lobes, you will have two more procedures separated by a month.
You can also Google this info and there are videos on line. Sometimes your MO will refer you to an IR to be evaluated. Sometimes, you will need to research IR in your area to see if any have experience with this procedure. It has really helped many ladies here and worldwide. Still not all docs are familiar with it. My liver tumors were inactive for 18 months after my y90's. I call that success. 💞
0 -
Hello All-
Finally spoke with my onc about the mouth/tongue sores and she has advised me to hold Affinitor for one week. She is also prescribing magic mouthwash and told me to use Biotene toothpaste. I know this sounds super nasty, but the past few days I have only managed to brush my teeth with water, so I hope the Biotene will be less harsh than regular toothpaste.
Xavo's comments about pneumonitis had/has me just a bit concerned. I have attributed the weight loss/lack of appetite solely to the Affinitor. Now, I'm wondering since I've had a sore throat for about a week. Maybe it's just the sores that are also in the throat??? I googled the symptoms for the pneumonitis which included, weight loss/lack of appetite, cough, etc. I really seem to have all of them to some degree, even the night sweats, although they are mild and I them before I started the A/A combo. I will just mention all of the to the onc at my next appt on the 29th, which is when I also have scans to see how A/A is doing.
I definitely don't want to call it quits on my 2nd line treatment too quick so I'm praying that I can get these S/E's under some degree of control.
Do any of you have recommendations on what would be the most nutritional drink for a diabetic? I want to get some form of nutrition but have to watch those blood sugars especially since mine are up from the new meds.
Thoughts and prayers to all of you for good results and less side effects....
MM (Angie)
0 -
Grannax- you still doing ok in terms of no side effects? I sure hope so!
0 -
Just to clarify about the mouthwash....I haven't tried the magic mouthwash yet. I have been on dexamethason (a steroidal mouthwash) and it has not helped one iota!!
0 -
Nouazy. I'm only 12 days into AA. So far I've had no appetite and am eating very little as food tastes horrible. I have not had mouth sores. I have fatigue that is more random and worse than Ibrance but not as consistent. No symptoms of pneumonitis. So I think I'm doing OK.
But I am on aromasin. I've been on AI so long, even though I have ESR1, that I it's become a way of life. It's the Afinitor that I am having SE from.
Masonsmawmaw. As you can see I am having some SE but not the mouth sores. I have not been taking the mouthwash. After your post, I'm wondering if I ever will. I sure hope I don't get them, they sound terrible. How much weight have you lost?
0 -
masonsmawmaw I'm drinking the special K one. I like it, I'm also diabetic. I'll have labs on Monday to see how BS is doing. I was stable but I know this drug can cause BS to rise. Sounds like your MO needs to order some tests for you. I've heard pneumonitis doesn't show up very well on just a chest x Ray but that will be the first test. I don't think you should wait till your appointment, call her today and tell her your symptoms, especially the cough.💞
0 -
Grannax- As of today I have lost 23 pounds since the end of October when I started A/A. My "normal" weight is usually around 155. There is just very little that I can eat or drink due to the sores and raw tongue. I do have an appetite stimulant but it won't do my any good if I can't get a handle on the sores. I will definitely try the Special K....thanks for the info on that! And will try to talk to doc about my concerns with the pneumonitis.... Hoping that the week of off Affinitor might help too.
0 -
Yes, I bet the week off will help, smart MO. I hope you hear from your doc soon about your symptoms of pneumonitis.
0 -
I've been so tired all day, seems like I can't stay awake. 💞
0 -
Grannax, is this a side effect of Afinitor or maybe you have reached the nadir of this drug? Your post sounded sad and not like you. We all deserve the right to down days..but it must be hard on you as you are very active in life. I predict your body will adjust or maybe you need a dose reduction..?
I monitor this thread as it could possibly be a future drug for me.
0 -
sandibeach. The fatigue I feel on AA is different than ibrance was. It just hits me, then I'm down. With I it was more in general, this is sporadic . But when down its more severe. I've been on it 13 days. When would Nadar at hit?
0
