Afinitor/Aromasin
Comments
-
FYI In the SWISH trial most patients (95%) used the mouthwash 3 to 4 times a day. Also, the trial specified an alcohol-free dexa solution, so check yours and switch pharmacies if they can't get you an alcohol-free brand. Novartis recommends against mouth washes that contain alcohol or thyme if you take Afinitor, I presume because they are irritating to the mouth. I also think that sugar- and dye-free are best because we leave this stuff on our mouth. The patients in the trial were told not eat for an hour after rinsing with the dexa They were instructed to swish for two minutes. By the way, if you get a white lesion that is different from the usual mouth ulcer, have your doctor, nurse, or dentist take a look; two of the 85 patients in the trial got oral candidiasis (a fungal infection aka thrush). I believe both dexa and afinitor could lower immunity and make a person more susceptible to this. As yangtan points out, we are supposed to have a glass of water with our Afinitor pill, as instructed by Novartis. I asked the specialty pharmacist whether it is true that we should wrap the pill. He said he saw a nurse advisor article that did recommend it, but he could not access it to give me the citation. The article mentioned honey or cream cheese.
Personally, I like thick, crystallized honey as it coats the pill and presumably my throat. I wrap the pill in it. For swishing I make sure to get good coverage but I don't swish for the whole two minutes. Sometimes I use it 3 times per day, but if I feel a sore threatening, I go back to 4 times per day. One report I read (sorry I can't find it right now) said it was ok for patients to adjust the dexa rinse regimen as desired to find what works best for them.
Yangtan, herb gardening and whale watching both sound wonderful and healing. Lalady, a little nephew and a cruise are such happy things. And Robin, have fun in Vegas. It's great to hear how everyone finds things to enjoy.
0 -
good info, thanks
0 -
Shetland, trips are what keep me sane through all this!!
Robin
0 -
Hi ladies, I will be joining this thread with the A/A combo after hearing progression after about 9 months on Arimidex and Ibrance. Am a little nervous about the SE's but ready to roll and can always cut back. Luckily I am heading into 7 weeks of summer vacation soon so can lie low and just "deal" (I hope.) I pray we all get a very long stint with this drug...
0 -
Welcome Artist - several ladies you know from the Ibrance board are here. What dose are you planning? I'm on 5mg daily plus letrozale. Have a blistered tongue that seems mouthwash resistant. I take mine with strawberry yoghurt each morning. Hope your SE's are mild. I am still working.
0 -
Welcome Artist, I am on day 17 of the AA combo with no side effects other than the usual fatigue. I have been using the steroid mouthwash and so far no mouth sores here. I actually feel pretty good and will be leaving for Vegas next Friday for a 10 day trip. My MO did blood work on day 7 of this combo and my TM's were down 9 points! I hope that was the result of this combo!! I also wrap my pill with either a tiny bit of bread or a spoonful of ice-cream. I hope we all get a long run on this combo!!
Robin
0 -
Hi, there, Artist! How nice to see you. It looks like we're having a little Ibrance reunion here, along with the other very nice ladies who are on Afinitor. I, too, was nervous about side effects, but I actually feel better on Afinitor + Faslodex than I did on Ibrance + letrozole. More stamina. Lalady, will you increase the dose after your tongue heals? Robin, even if it is just nine points, it is nine points in the right direction. I am trying not to wish the days away waiting for my next blood test.
0 -
SP - I had chest pains yesterday and had to sit down. Felt like my lungs were being squeezed like an accordian. ugh Debated calling my onc, and decided to take one day off the meds. I feel better today - as I have to walk around the LA zoo for their annual party.
I will see onc on Wednesday. I liked Ibrance better - easier to swallow and no chest pain. But my hair is coming back with wild curls. Robin - down 9 points is great!0 -
Uh oh. I hope the lung thing is not Afinitor. Maybe send your onc a quick email? Does your hospital have a 24/7 triage clinic where they could check your lungs? The fact that you feel better today is good, but still, when someone says chest pains... A spot of lung inflammation showed on my PET, but no symptoms.
0 -
SP - the lung pressure is Afinitor - shortness of breath and chest pain are listed SE's. My hospital is too far away for checking my lungs - especially on a weekend. The package said to stay off the meds a day or two, if pain comes back tomorrow, then I guess it's back to UCLA. My regular appt is Wednesday. lol I have one pimple on the side of my nose - another lovely SE. Am I a teenager again? Mouthsore diminished, but may be due to day off. The zoo was lovely!
0 -
Lalady, are you feeling better today? Glad the zoo was nice, even though it was such a hot day. We drive by everyday and I'm obsessed with the matija poppies at the entrance!
0 -
Hi Girl - LA Zoo Beastly Ball was awesome - Slash (who is a big donor and supports the reptile area) played with Jack Black singing. I'm pleased to report I'm better today and mouth sore is gone. I will start meds tomorrow and see onc on Wed. I miss Ibrance.
0 -
Thanks for the welcome ladies!
lalady, How scary! That is the SE that scares me the most. I had a terrible episode on the higher dose of Ibrance that brought me to the ER once. I agree with Shetland to be very careful not to wait too long to report anything like that to your Onc.
Not crazy about the acne or mouth sores idea either but what are you gonna do? I'm not sure what dose she put me in for. Still waiting for insurance on the Afinitor. I was sort of hoping she would start me low and work up. But maybe we need to bombard the buggers fast?
Robin wow! 10 days in Vegas? I just got back from a weekend there and was exhausted! We did a lot of walking for sure. Have to admit it was a bit of a whirlwind trying to see everything we wanted to see....But we had a blast, stayed in a very posh hotel and saw John Fogerty in concert. However, on our last day Sunday I woke up feel a little queasy. As we were eating breakfast at the outdoor cafe it built up until I had to dash to the restroom and throw up. Not sure WHAT caused that. Maybe antibiotic and vitamins on an empty stomach. Or too much good food? Anyway it was scary as I haven't thrown up in years.....
9 points DOWN is the key word there Robin!
Shetland it's hard not to think ahead on the next check up but I agree with you. I try and savor each day and not hear that psychological tick tock. Are your lungs still feeling OK?
I have not been to a zoo in so long.... I love the zoo! Need to plan a trip and get some amusement and amazement!
Best to all!
0 -
i have to say, no problems with mouth sores, i use the special mouthwash and supliment with salt water rinse, onco suggested
Thought i was starting a sore yesterday so did double the salt water and today is fine
0 -
I went back on my once a day mouthwash rinse, supplemented by swishing with glutamine twice a day and no mouth sores to report. I even pinched my lip with a pen last night (don't ask) and it didn't turn into anything.
Hoping everyone has a good day today!
0 -
Lalady, well, having that mouth sore go away is a good thing. I had one mouth sore at the beginning of Afinitor, but once it got better it did not come back. I wonder if taking Afinitor every other day would be a possibility, since you are already on the lowest dose. Isn't is a strange life when you say you miss Ibrance? I tried Aromasin for a very short time after Taxol, and I'll never forget my onc talking about taking me off it. I was resisting, and she said, "You are telling me you felt better on chemo!" (We went to Ibrance and letrozole at that point.)
Artist, I started on 5 mg. I was ready to increase after a week, and only trust in my onc kept me on 5 mg for three weeks. Then I got permission to go to 7.5 for a week, and finally to 10. But look at Lalady who may have started developing pneumonitis. It's good she started on a low dose. Yes, my lungs feel fine. I have been very lucky with this drug, and surprised since I am a lightweight, i.e. it usually just takes a little of any drug for me to have effects from it.
Girl, do I have to take those pens away?
0 -
I miss Ibrance . . . . And Xeloda. Actually, each has its benefits and drawbacks. I am looking forward to my hands and feet healing now that I am off Xeloda - and getting manis and pedis again.
As for A/A, Aromasin tends to make exercise easier for me - it is known to have a slight benefit to muscle tone/decrease in body fat due to its mild androgenic properties. When I was on Aromasin/Faslodex/Ibrance, I was running 4 miles/3 times a week with ease (I had never previously run 4 miles on a regular, maintenance basis - only when I was training for half marathons). Once I started Xeloda, running became a bit harder. Running 2 miles is now my "long run", and it isn't easy like it should be, with a rare 3 mile run here and there. I am hoping the exercise benefit returns on A/A!
My MO started me on 10mg. I developed 1 mouth sore right inside my mouth immediately and the area behind my lower lip is a bit tender and swollen. I also have a few mini sores on the back of my throat. However, it is not so bad. They hurt the worst the first day or two and are now a minor discomfort. I did feel chest tightness for a few days but it seems to have subsided on its own.
0 -
Artist, Glad you had a good time in Vegas, minus the puking incident. I love Vegas and go there twice a year!! I love the pools, shows, bands, and of course the gambling!! I am staying at the Mandalay Bay, one of my favorites. They have a wave pool, lazy river and 4 other pools to relax by. I saw the Michael Jackson One show last year and it was just awesome. I do agree 3 days is not enough to do everything there is to do. And I'm sure most people would say 10 days is too much! But the main purpose of my trip is to relax and enjoy life and not think about my reality.
Today marks my 21st day on AA. I will get my tumor markers back tomorrow and I pray they are still dropping. Still no mouth sores or bad side effects here. I actually feel better and feel like I have more energy. Go figure!? My MO started me on 10mg and so far so good!!
Praying we all get a good run on this combo!!
Robin
0 -
I am feeling better hearing that most of you are doing OK on this combo, as back on the thread about a trial with this combo and Ribociclib added a few were coming down with pneumonitis like lalady and also think it's the Afinitor. I am nervous to start but anxious to get going as well.
JFL, Did you consult your MO about the chest tightness or just ride it out? After that episode on Ibrance I get kind of freaked out over shortness of breath.
Robin, Yes I can see spending 10 days there to use relax by the fabulous pools, maybe get a massage! I could of used more relaxing time. I think we just tried to cram too much onto one weekend.
0 -
Artist, I didn't mention the tightness to my MO because I am traveling. I am walking around all day sightseeing and running with no issue so I figure it must be okay.
0 -
JFL, I guess I just asked because the past few years I have had so many instances of doctors treating me like a hypochondriac, only to find out there was a BIG problem. I had great trepidation about being on a med that may have me questioning when to call.....
0 -
Hello ladies - checking in after yesterday's UCLA bloodwork was the best it's been in months, but likely due to removal of Ibrance which tanks WBC and RBC. In any event, I am remaining on Afinitor@ 5mg and will get checked one week before my Baltic cruise at the end of June. Hoping for TMs to come down. Also promised to come in for EKG if I have shortness of breath again. No pneumonia or infection at all - temp was 98. whew! Also asked if onc had ladies on this combo for over a year and he said yes, so that is encouraging. But no doubt about it, this is a HARD med for many due to SEs which can be more severe than Ibrance or faslodex. Have a lovely weekend everyone! SP keep dancing! JFL - enjoy your trip! Artist - have your meds arrived? ps I now just gulp the pill down with cold coffee.
0 -
I had my blood work done on Tuesday and all looked great. But my 9 point drop I had the first week on this combo has turned in the other direction. Tumor marker went up 10 points. I have been on 10mg for 3 weeks!! This is not how I wanted to start my vacation tomorrow!! I am really upset about this and I pray it is tumor flare.
Robin
0 -
Robin, three weeks is not very long, though I completely understand wanting to see immediate results because that is what I wanted, too. I asked my onc how long a tumor flare could last, and she said she has seen up to six months. I am in my fourth month of Afinitor & Faslodex. For the first three months my TMs continued upward, and my onc said she was willing to wait one more month because my scan had lower uptake even though some lesions appeared larger (sometimes that happens before they shrink). I felt might it not be working for those three months because of mild liver pains, but at the moment I am more hopeful and feel it may have started working because I have not been feeling those pains lately. It is like my onc and I are playing a game of chicken with cancer, staying calm and holding our course.
0 -
Robin and SP -rooting for you. My TM went from 91 to 95 (prior to starting Afinitor), now we are hoping it goes down. Next bloodwork in June. Let's stay positive ladies! Happy weekend to all! Sp keep dancing, I'll send a Mr Tiny pic soon.
0 -
lalady, My meds have arrived but I have to go for a tutorial session with my center first. I'm sort of glad as the last few days I've felt very bloated and constipated!! Not sure if it's the Amoxicillin, Aromosin or the Norco i took for dental work. Hope it's one of them but have cut out any fibers food and a guzzling water to see if that helps. It is extremely uncomfortable, pain in lower back, hip and groin. Yipes.....Wish I was on summer vacation already to start the Afinitor.
0 -
I have been feeling some liver pangs and pain, which I also hope like some of you with your initial symptoms, is tumor flare. I get pain when meds are working as well as when they stop working so I have no idea. However, I don't recall having these liver twitches before. Really hoping that is shrinkage. I haven't been on this long but have responded right away to my first two lines of treatment (despite climbing tumor markers and liver enzymes during initial flare periods, in both cases, everything was inactive by first PET scan). My cancer knows two speeds - zero and 100mph. Nothing in-between. Really hoping same situation here. However, feeling scared . . . . I can't afford to wait it out very long if this is not working.
Robin and Shetland, I am also rooting for you! And you too, Lalady! Your cruise is just around the corner.
Artist, good luck with your upcoming start.
0 -
Artist - what gives with a tutorial? Just cut open the meds from the silver foil and chug it down asap. lol JFL - please drink lots of fluids today. That will help flush out any lingering toxins in your liver. Are you on 10mg? I recommend getting an IV of Vitamin C (the same as Z gets), it has helped me a lot. I now can chug A-fireball down with coffee. Lol on my first few weeks fumbling with yoghurt. I had another pimple yesterday, so we know Afinitor is working, just hoping its working on my T8 bone met. I had a light massage on Saturday, and had my toes painted red white and blue stripes to honor our vets. :0
0 -
Thanks JFL, I hope it's the zero speed. The constant fear we face can be exhausting.
Ya lalady! I was thinking the same thing. She knows I read up on all the new TX yet I'm like 9 days out without my meds. Hope tomorrow or I will have to raise a stink.
I am still experiencing severe constipation and back pain. Sent my DH to get a laxative finally. Tried Miralax but so far nothing. Miserable all this 3 day weekend I was so looking forward to......blah. Hopefully you all did something fun!
0 -
The fun thing I did was some home decluttering and organizing. Artist, Norco can cause constipation. I believe it was Colace the nurse recommended when I took Norco after my lumpectomy. (Turns out three days of patience was all I needed, though.) Water and exercise should help, too. So is the tutorial like a pre-Afinitor education thing? Lalady, ha, I think I agree with you. Just take it.
JFL, how long until your scan? I get TMs this coming week.
Does anyone have taste changes on Afinitor? I suspect Afintor because it does things to the mouth, but I've been talking to the Fanny Pack and some of them think it could be Faslodex. I'm just curious to know which of the three drugs is probably doing this to me (Fas, Af, or dexa rinse). Things generally taste a bit off, sort of bitter.
0
