Afinitor/Aromasin
Comments
-
HI Wallaby,
I started with Afinitor/Aromasin 6 days ago.
So far, I've experienced dry mouth, headaches, nausea (more like a queasy-ness) and our old friend, fatigue!
I've also noticed some skin problems. Haha, thought I was done with acne 20 years ago!
No GI tract trouble as yet.
What was the feedback from your MO?
Kind regards,
Janine
0 -
Well I will be starting A/A next week. I am just finishing up with radiation before we start. I have a PTEN mutation per F1 and this combination was the only drug recommendation so we will give it a try. My philosophy is nothing ventured, nothing gained. Am I a bit scared? You betcha. But like FDR once proclaimed..." We have nothing to fear but fear its self". I like that statement. While every treatment has its SE and dangers, I just have to step through that door and maybe, just maybe, this comb will work for me.
0 -
Is anyone using a co-pay assistance program?
0 -
I have used both PAN Foundation and Patient Advocate Foundation for copays
0 -
Hi NO1, I have been on the A/A combination for.almost six weeks. My side effects have not been bad. Little bit of rash, fatigue, some bone pain (which of course I immediately label as progression). I have achy knees like I did on Femara and some night hot flashes. My bloodwork looked good last week. Markers were higher but I have heard that is not uncommon. I also have the PTEN mutation as well. Praying this works for both of us. I've raced through every treatment so far and could use some good news.
Take care,
Mary
0 -
Hi Mary. I was able to find copay assistance so thank you for your help in that space. I too hope we catch a tide of good luck with this treatment. I am glad to hear your S/E have been manageable. That gives me hope.
0 -
Hi Janine! Yes, I have the dry mouth and I had a couple of bad mouth sores, one on the inside of my lower jaw and one on my tongue (try to eat without involving your tongue!), but I eventually vanquished them. I had fatigue already coming off of Ibrance/Letrozole/Faslodex. I don't have the headaches as long as I make sure to keep hydrated. I have rosacea already so some skin problems are from that and as long as I take my Minocycline, I can keep them controlled. I am finally starting to recover from the gastroenteritis. I came home from the hospital on the 27th and started to feel somewhat better. The next weekend I had another bout of it and as of yesterday (6/6) I am starting to feel human again. My MO looked at the tests from the hospital (all negative) and said it was gastro. I had the hospital run the CA 27.29 test for tumor markers because I missed my blood draw while in the hospital. The good thing there is that the increase in the markers, which were jumping up 30-40 points a month, only increased by 5 points from last month. My MO was happy with that. Now that I am back on my regular Affinitor schedule, we will see what the blood test next week shows. I usually see her once a month but she wanted to recheck me in two weeks to verify the tests. I think when any patient who is immune compromised gets something like gastroenteritis, it is doubly hard to overcome it. But, onward and upward! Good luck to you!
0 -
Came across this this morning on Facebook. It's very interesting information and I hope it's the beginning of the development of a possible treatment: https://www.sciencedaily.com/releases/2018/06/1806...
Wallaby
0 -
How is everyone on this protocol doing? I have my 1st blood work done today since starting A/A.
0 -
Good afternoon NO1-2NV! This thread is pretty quiet compared to the bone mets thread. Sometimes I think I'm the only one who reads it! I'm on Afinitor but taking it 2 days on, 1 day off. My MO thought it would help with the SEs. So far I have had mouth sores (gone), bumps on my scalp (still there), a rash on the right side of my chest, under my arm, and FATIGUE. My MO said she thought the fatigue was from the Ibrance, which I was on before the Afinitor but it's still there so she's going to test me for Iron, B-12 and Ferritin levels. If my next blood results on 7/13 don't show a drop in my tumor markers, my MO is going to move me to Xeloda. I see you've already been on Xeloda. Any insight into SEs with Xeloda would be helpful! All in all, when I read the stories of some of the ladies on here I tell myself I'd better shut up and quit whining because, as my MO said last month, "You're pretty healthy, all things considered!". Good luck on the results from your blood work!
0 -
Hey Wallaby! My MO started me out on 5 mg of Afinitor to allow my body to adjust and we will increase it over time. I too have the bumps on my head and I am tired. I do get hit with bouts of nausea from time to time. I have also found that if I eat sweets/carbs I don't feel so well shortly after. I ate a PB and J sandwich the other day and shortly there after felt awful.
Xeloda had some similar side effects. The one that is really different is the hand and foot syndrome. You are going to want to be sure to slather on the cream and keep applying it. I think I tried 15 different brands. Gold Bond Softening worked well after shower. Utter cream mid day, and plan old Vaseline with coco butter at night. I have heard all sorts of different results from different people so you may have to try different things until you find what works for you. Just remember...hot water is not your friend! Rubber gloves for doing dishes.
0 -
Hi NO1-2NV! I haven't really had a problem with nausea no matter which drug I've been on this time around. I do have a prescription for Zofran which seems to work well when I have had to use it before. I've been trying to eat protein and veggies, along with some carbs, to boost my energy. I get SOB (LOL..shortness of breath) when I go up the stairs or walk longer distances. The shortness of breath is not as bad as when I was first diagnosed (had a pleural effusion) but it's really getting old.
I have really dry skin all over from being hypothyroid, even though I have been on medication for years. It seems I can't put on enough of various creams and lotions to keep up with the dryness! I was just thinking the other day that I should be using rubber gloves when I'm doing dishes or cleaning.
I'll know if I'm going to be switched to Xeloda after my MO appointment on the 18th. I guess the SEs can't be too much worse than those I've already gone through!
I am also getting Zometa as an infusion once a month. Have you had that also?
Have a great weekend!
Cindy
0 -
Great. Can you share what strength affinitor you take? Thank you.
0 -
Good afternoon ladies!
I was on a 5mg per day dose of Affinitor, and after 8 weeks, was doing so well my onco suggested us doubling the dose to 10mg. I didn't feel comfortable with that decision, and we decided to stay on 5mg.
Unfortunately, I was hit with one of Affinitor's less common SE's, pneumonitis. :-(
I noticed a little dry cough appearing around week 9, and notified my onco immediately. CT confirmed very early stage pneumonitis. I stopped Affinitor immediately, and went on a 2 week course of cortisone, to try and get my lungs to heal. All was going fine until I finished the cortisone course. The cough was back, and back I went for another CT, which confirmed that the pneumonitis didn't get better, in fact it got slighty worse.
I'm now on a 2 month cortisone regiment (urgh), and according to my onco, I will not be able to go back on Affinitor.
Good luck to all of you with your treatment. I'll see you guys on another thread sometime!
xx
Janine
0 -
My 38 month run on Faslodex/Ibrance is coming to an end (new lesions on ribs). MO is recommending A/A...seems like a lot of you have had trouble with mouth sores...so not looking forward to that possible SE! Is there anything else that I should be aware of? I literally had no SE from the F/I regimen...
Thanks in advance!
0 -
masons maw, I will be starting afinitor combo next week. Ibrance/letrozole just failed me. Let me know how you will be doing. Keep in touch on this thread and good luck. Nancy0 -
Hi Masonsmawma and Nancylm,
How are you doing after a couple months on this combo? Looks like I will be joining you soon as I have progression in bone and my 1st liver lesion after 40+ cycles of Fas and Ibrance. Looking forward to biopsy next week (NOT!)
This forum seems quiet, usually a good sign for a tx I'm thinking. (The Fas thread is pretty quiet too.)
Any wisdom on what or what not to do would be helpful. And were you offered any other tx after AI/Ibrance failure? This will be my 3rd line tx.
Thanks!
Jo
0 -
Hi there,
I was on Ibrance/Faslodex for 17 months and couldn’t believe how easy it was! Had to lower from 125 to 100 due to low ANC count, but that was it! Lost a tiny amount of hair in shower. Had to move on due to a pleural effusion that didn’t dry up, and no real change in tumor markers. But basically had 17 months of stability.
Now on Afinitor and Aromasin for 3 months . Markers falling, pleural effusion drying up and having catheter removed. Started on 5 mg to avoid possible pneumonitis which can be a side effect. Hospitalized in 2013 with bad case of pneumonitis from IV Taxol chemo, so had that concern. No problem as of 3 months.
I was so afraid to start this regimen due to negative comments about it. Honestly, I am very pleasantly surprised. I DO recommenced a prescription mouthwash from your onc and USE it four times daily whether you have mouth sores or not. I foolishly decided that my mouth was fine and didn’t use it much and them BAM.. a painful case of tongue and mouth sores! My throat felt like I had swallowed a red hot charcoal briquette!
Stopped the Afinitor for a week but felt good by day 4. Now I know to stay ahead of it. I have had a few scalp bumps/rash but I use a gentle shampoo and a soft hair brush. I hope this info helps you to feel confident . I also bought clear, soft, plastic capsule holders that I put each Afinitor pill in. Purchased at drugstore . Some people use a mini marshmallow and stick the pill in that. It’s supposed to prevent mouth sores by the pill not touching the mouth, but I also read that mouth sores are caused by a systemic reaction, not the pill touching the inside of the mouth. Use a soft toothbrush and plain sensodyne toothpaste. Don’t brush your tongue. I did and was sorry!
I am ER/PR positive and HER2 negative with IDC stage 3 in 2012, then stage 4 in 2016. Losing very little hair in shower. Appetite isn’t great but I lost some weight I needed to lose.
I wish you good health with your treatment choice.Hope it’s easy breezy😁
Best regards,
Deb
0 -
Hi all-
I am about one month into my A/A combo and so far, so good. No SE at all, but am starting the 10mg Afinitor today as opposed the the 5mg that onc started me out on. I haven't started swishing with the special mouthwash yet, but my onc insisted that I start as she feels that mouth sores are on the horizon. Amazingly, I lost 10 pounds in 28 days which I assume must be attributable to the new regimen (loss of appetite). Not complaining as I could afford to lose a few pounds, but just don't want this to be an ongoing issue. The only other totally weird thing is this: I was told, and read in the literature that high blood sugar was a potential side effect of one of the drugs. I am a diabetic and have had regular high blood sugar for many years. Now suddenly, I am waking up some mornings all shaky and out of sorts; check my blood sugar and it's around 65! I'm completely mystified by this?!? Have an appointment with my endocronologist next week so will see what her thoughts are.....
Take care ladies and stay in touch with any new updates. I will be excited to hear that you all are having great results!!
MM
0 -
Thank you so much for your replies! It's good to hear that this is a tolerable tx from people who are currently on it.
Deb, Absolutely wonderful to hear A/A seems to be working for you! "Pleural effusion drying up and having catheter removed" sounds like a (good) dream come true. Hope you get another nice long run on this tx. Thanks for the tips regarding mouth sores and NOT brushing tongue. I always brush my tongue too.
MM, You are in early days on this tx, but sounds like it's going well so far. I take it blood sugar of 65 is a good, but unexpected result? Hope it stays good and doesn't bounce up and down so it's hard to control. Fingers crossed!
I started Aromasin (generic version, but still can't spell that, ha ha!) today and paperwork is in progress for Afinitor. Tomorrow is liver biopsy. A bit nervous about this but hoping it's no big deal.
0 -
SIDE EFFECTS OF AFINITOR/AROMOSIN COMBO OR STOMACH FLU? I started this combo last week. One day four (Saturday night) I began to have nausea and diarrhea that kept getting worse and fever that went to 102 and then down to 100 and normal on Tue. I stopped taking on Monday and happened to have doc's appointment on Tue and my heart rate was 140 so I ended up getting IV fluids and anti nausea that causes constipation and I'm off meds until next week. I still feel rough with stomach cramps and finding it tough to eat. No appetite. Anyone get this severity of side effects or is it possibly stomach flu. Doc wasn't sure.
0 -
I’m 2 months on A/A and I have had several Side effects. First my face was red and swollen. A couple of weeks later my entire face peeled. I used ice packs for swelling. Then more ses....nausea, watery itchy eyes and fatigue (always fatigue with each treatment). The good news now is that nausea is gone and my eyes are 50% better. I’ve lost a few pound, as I was not interested in any food whatsoeve, and i could not taste anything. MO suggested lemon drops and that solved that problem. I don’t have a scan appt. but will ask about that next appt
0 -
I will probably be joining this thread next week. For the past two years I've posted a lot on Liver mets thread, Ibrance thread, local treatment for liver mets thread and my husband, my cancer, etc thread.
I found out on Monday that I have progression in my liver. I'll know more next week after PET tomorrow, MO appt on Monday. My MO has indicated that my second line treatment will be AA. I'll let you know on Monday.💞
0 -
Newbies, listen to ladybug and always use the dexamethasone mouth wash, from the beginning and consistently. Make sure your pharmacy gives you an alcohol-free one. That is important to avoid mouth irritation, and alcohol-free is what the trial specified. The trial proved its efficacy and made this mouth wash a new standard of care.
0 -
Nancylm, sounds like you had a rough start on this tx. Hope se's continue to get better. Looks like you and I have had the same treatments but opposite reactions in that Arimidex lasted a long time for you and Fas/Ibrance worked longest for me. Thank you for posting and fingers crossed that next scan shows A/A is working for you.
Hi Grannax2, So sorry to hear you have had progression. Were letrozole and Ibrance your 1st line tx? I would encourage you to ask about Faslodex if you haven't had it already. Hope PET results help with tx choices. Hang in there! Progression and tx change is tough.
Hi Shetland, thanks for chiming in about consistently using the mouthwash. So happy to see Xeloda has gotten you back to nead! Keep on!
0 -
Hi, jobur! Hi Grannax!
0 -
WOW...lots of old friends on this site. I may be about to start AA (after failing recently after 23 mo on Ibrance/Faslodex) soon...to be determined. I wanted to check out what you all were saying and what site might be helpful. The mouthwash thing seems really helpful. What about the Magic Mouthwash Pat Mc suggests on the Ibrance site? Has anyone tried that? She also advocates a particular yogurt (will have to check on that brand) as being very helpful for mouth sores. Trying to prepare!
0 -
Hi ladies. Yes I am definitely going to be posting here. My PET showed progression in my lung, chest and liver. Ugh. Clearly time to move onto new TX. I'm supposed to start on December 31. She want the IF to be out of my system. Also, we are trying to get a liver BX scheduled for tomorrow or Friday. If the results show that my tumor has morphed into something else besides ERPR+HER2-, then I might have different choices of TX.
0 -
Hi, Joyner! You want to prevent mouth sores from developing, and that is what the dexamethasone rinse is for. Using the dexa rinse from day one, I did not get mouth sores from Afinitor. Here is a link to an article about the 2016 SWISH study:
https://www.onclive.com/web-exclusives/steroid-mou...
The Magic Mouthwash is a treatment for mouth sores. For me the MM gave temporary relief from Ibrance mouth sores.
0 -
Hi Shetland. My doc did not tell me about the mouthwash, I will make sure I get it before I start AA on December 31. What a way to start the New year. Ugh.
I am scheduled to have my liver BX for next Thursday. But my IR is not sure he will be able to see them well enough to be able to get the core BX. I decided it's worth a try. I have nothing to lose and a lot to gain if he is successful. He is using ultrasound to guide him. If he cannot visualize them then I just go home. If he can they will sedate me and do the BX The tissue will be sent for Genomic testing as well as pathology to see if it has changed from ERPR+ HER 2- to something else, like HER2+.
I am hopeful that whatever the results are they will give me more treatment options.💞
0
