Afinitor/Aromasin
Comments
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Hi, ladies, I was on the A/A site, but it seems there is more activity on this page so I will check in here, too.
I was on Faslodex for 2 years and it was a magic bullet - dropped my CMs to almost nothing, but when I went in for my yearly PET scan in January, it showed a slight progression of the cancer in my lymph nodes. Onc put me on Aremidex in addition to the faslodex injections, but showed more, mild progression at the 3 month PET scan. Very worrisome to say the least. Now I've added 10mgs Afinitor plus Aremidex (instead of Aromasin which gave me the big D!) plus faslodex. I told him I would do the Faslodex until my next PET scan in 3 months, but if it showed a stabilization, I wanted to stop and see if I could do as well with just the A/A combo. I don't mind doing the work, but I want to pick up the pay check and if I am resistant to faslodex, I see no need to take it. There is no easy decision, but he said it was my decision. I have been on A/A for two weeks and have had slight tongue and mouth discomfort with a tinny taste, but that is all. I rinse with Biotene 3 or 4 times a day.
I agree with the earlier posts, it is important to post how well we are doing on the drugs to encourage others to try it, if recommended, without unfounded fear.
It was really a bummer to get the SE report from the nurse practitioner, but scariest was the lung problems. We just got a transfer to Denver and the high altitude there isn't good for lung problems, but the drug specialist said it would not cause the lung SE. As was mentioned earlier, just be sure and get to my doctor if I noticed any changes in my breathing.
I was surprised to hear about diabetes - that was never mentioned - so I will be sure and ask my onc for twice yearly glycemic blood tests. And to give up grapefruit! At least it wasn't wine.
Thanks for all the posts - I wish you all the best as we all go about our lives and enjoy the smallest pleasures everyday.
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HI there. I am new to this board but have spent the last few days reading and reading. To give my cancer background in summary - I was diagnosed in dec 2004 with stage 2 breast cancer - ER+/PR-/Her 2+. Had dose dense AC followed by 12 weeks of taxotere and a year of herceptin. Had a bilateral mastectomy and reconstruction. Ended my treatment in january of 2006 and was in full remission. I was 30 years old at the time. In oct 2008 found a lump in the breast skin that my onc thinks must have been a cell left behind from the mastectomy that had taken almost 3 years to grow large enough to feel. Had that removed and followed up with 6 weeks of radiation. All was good again until August of 2011 when I started to experience severe pain in my chest. I thought I had injured myself at the gym. Turned out to be the cancer having returned and having moved into my liver, bones, lymph nodes and lung. I was in pretty rough shape. I did 9 months of weekly carboplatinum, abraxane and herceptin and at the 6 month mark was found to be back in complete remission. Did the final 3 months as a precaution. At the end of the 9 months I started a maintenance plan of herceptin every 3 weeks, tykerb & letrozole daily and xgeva and lupron shots every four weeks. Everything had been going along nicely until mid may when my annual brain MRI showed 10 brain mets. My onc believes the cancer had penetrated into the brain back in august 2011 but they were too small to see. Due to none of my meds crossing the brain/blood barrier they were virtually left untreated until now. I just finished 15 FBR treatments two weeks ago (which was how I found this board - wanted to read up on what to expect from FBR as it really scared me!). I was expecting to feel better after the radiation ended but the last two weeks have been horrible. I also started afinitor the day my radiation ended as that corsses into the brain which I was very happy about and eager to add to my arsenol. But almost immediately I developed severe ear infections. I couls barely hear which i think was part from the radiation but the infection i blame on the afinitor. The pain was severe. Then as the antibiotics started to heal my ears my throat became so sore I could barely eat or even drink water. I went back to my ear specialist for a check up and asked her about my throst since it has been 10 days of getting worse and she found that I had the mouth sores. Only a few on the actual gums but a ton at the entrance to my throat. My onc had suggested putting the afinitor in a marshmellow and swallowing which I have been doing but that obviously isnt enough. I added a gel tablet as well but it doesn't seem to be helping either. I saw my onc today and he gave me a steroid mouth rinse. not sure if it is the biotene mentioned here a lot but I am hoping so. I know you can only do FBR once so I am worried about leaving my brain untreated so I really want the afinitor to be part of my long term maintenance plan but these mouth sores are so painful!! I could deal with it if I knew it was short term but if its for the rest of my life I don't think I can. Does the mouth rinse seem to work well for those using it?? And for those of you that stopped the drug and let the sores heal did they return pretty quickly upon starting again? I am nervous to drop the dose but if that is the only option....... Then again if the sores happen even at the lower dose I will have to give up this med. I am very lucky that i am cancer free in every other part of my body and hopefully after this FBR I will be totally clean but I worry if the maintenance plan isn't complete. Does anyone have any suggestions for helping with the mouth sores or maybe another drug that works like afinitor? Thank you all for all of your insight and for opening yourself up to others facing similar situations. Together we become a very strong voice showing that we won't lie down to this disease!!
Thank you
Wendi
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I had shingles when I was 24 and then 43. You have to be over 60 for insurance to pay for shingles.
My questions is, can Afinitor kill if you have lung mets? I am ER+ and have been through alll the hormonal drugs except aromasin. presently on Taxol having a hard time.
DJ
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wdearsman,
I have been on 10 mg afinitor for about four months now. I had a severe problem with mouth sores after the first two weeks. I read an article about probiotics for thrush, particularly acidophilus. I started taking a probiotic recommended by my pharmacist and after a few days everything cleared up. I am still taking it. I checked with my onc who said she hadn't heard of this "treatment" but since it was working it was OK. I think it's worth a try. I hope you find something that works for you, as I couldn't eat or even talk for a week because of the pain.
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Hi Wendi/c-j-k and welcome to this A/A site. I am sorry that your journey has been so painful recently (Wendi) but this is the site that will offer you hope and suggestions. Before I began A/A I was receiving Faslodex and Xgeva shots with success - 2 years. Since April I was also drinking a natural nutritional product made with Moringa Oleifere (tree). My energy level and over all strength was fantastic. So when I met with my oc in late April to dicuss all my scans I really thought that I was going to hear fantastic news. However, I had increase size on bone and a new met on liver. When I said that it didn't make sense since I had been able to cut back pain meds and no longer needed ritilan, he told me to trust my body. I increase my drink to 2x a day of which he was supportive. He is from India where Moringa is grown and used. I too developed throat sores after almost a week on Afinitor. I got the "magic mouthwash" (like medicine used for thrush) which immediately gave me relief but also I had read on this site about wrapping pill in marshmellow creme. The next day I began the marshmellow process and haven't had to use the "magic mouthwash" nor have I had any more mouth sores. I'm now on my 2nd month of A/A treatment. I don't know if it was successfu because I caught it early or if it was because of the combination with the Moringa. I would continue with the marshmellow or gel capsules even while you are trying to rid the throat sores. My energy and strength has returned. My latest blood test showed a decrease in white blood cells and Vitamin D and an increase in sugar. My oc only wanted me to bring up my Vitamin D. Go next week to oc to check about blood tests that I get every 2 weeks. So I will see and let you know. If you want to check out Moringa, just search info about the tree. I use the product formulated by Zija. I also have info on my website: http://tfeddersen.myzija.com Look under products, SuperMix or SmartMix. Let me know if you have any questions. I'm not doing this to sell the product but to offer a support for the journey we are on. My sister is drinking Moringa that she gets whole sale at a much lower cost for her knees. She mixes hers in a smoothie.
Best wishes,
Terry
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I am new to this thread. I just saw my onc this past Friday, and my bone scan showed progression, so she is taking me off of the faslodex, and is wanting to put me on afinitor and aromasin, but wants to continue my herceptin. She is doing some research on it, but the afinitor scares me. Sounds like lots of side effects. Does anyone else take the combination of these three drugs? I'm also on xgeva every month.
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Granna,
It's important to remember that your experience will be unique to you. While it is good to be aware of potential side effects, you just have to evaluate tour options for therapy as best you can, and don't assume you will get all the side effects.
If it helps you at all, I have been on A/A for almost three months and the worst side effect I have is tiredness (as with other aromatase inhibitors). I had a slightly low WBC last week but I'm back up to normal. Have a few mouth sores now and then but nothing to write home about. Banking soda rinse seems to do the trick.
So, try not to freak out! Put one foot in front of the other. As always, if the side effects are too difficult, you can always change treatments. If you were just on falsodex, if your doc is taking a traditional approach in terms of exhausting all hormone type treatments before chemo, you have lots of options ahead of you. This one is hard for some and not for others (as is the case, you will find, with any treatment option.)
Good luck and try not to stress!
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Granna,
My bad as I see you are HER2+, which puts a different spin on the order of treatments you may be receiving. I am HER2- so I know less about those treatments. Having said that, my advice about your response being unique to you still holds, and it looks like you seem to do well with armomatase inhibitors from your treatment history, so this is certainly a really good option for you...the double punch with Aromasin and Affinitor.
Don't put the horse before the cart...stay in today!
DG0 -
On the marsh mellow thing.....
I asked my doc about that and he said that mouth sores are not caused by the pill (affinitor) coming into contact with oral tissue. He said they are caused by systemic factors related to the destruction of cells caused by chemo, or lowered immune system making one vulnerable to viruses and infections (like thrush). Having said that, I have seen multiple reports here that coating the Affintor seems to help, so....why not? Even if it his a placebo effect, who cares?
Now I have not had need to try this, but I wonder if eating yogurt frequently would help with the mouth sores for some? If that "magic mouthwash" is made to treat thrush (yeast infection) then why wouldn't yogurt help prevent mouth/GI sores? Yogurt has the good bacteria in itthat also resides in our GI tracts, this replenishing it if that bacteria level is disturbed by the chemo. I used it after rads when I had viral thrush and it did help!
Just a suggestion which should be harmless, I would think, but ask tour doctor...
DG0 -
Just Luke the probiotics mentioned by someone else above!
DG0 -
Someone (sorry I don't remember who) posted that her pharmacist told her that the Afinitor can cause mouth sores 2 ways - one systemic, as Dragongirl's onc explained, and the other by contact since it's extremely caustic. That's probably why coating the pills helps some people and not others. It seems to help me - I put it in a gelatin capsule.
A few weeks ago I said I'd been sick for a long time, constant fevers, chills, feeling awful. I thought it was the
Afinitor and planned to talk to my onc about it. The night before my appt with him (talk about timing!) an abcess around my TE burst (do NOT ask for details; it was disgusting) and I had to have the TE removed and am left with a large open wound that I'm told could take months to heal. There were no other symptoms of this but as soon as it burst I started to feel better. TMs have stabilized so I think the A/A is doing its job. Phew.Leah
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Thanks DragonGirl. You've made me feel better. I trust my onc, but was a little bummed from the last bone scan. I had one in February that showed slight activity and she took me off Femara which I had been on since the beginning, and now off the faslodex. Oh, my onc said to take the afinitor with cool whip. Guess ill try that if she puts me on it.
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I'm starting Afinitor/Aromasin as soon as my insurance approves it and I get the meds from the specialty pharmacy. I was expecting this and have found this topic to be very useful. I guess I'll try to scope out the gelatin capsules as I don't have any sort of a sweet tooth. Marshmallow creme sounds disgusting!
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Hi everyone,
My mom is Stage 4 Metastatic Breast Cancer. She has had mostly bone mets, but recently a scan showed activity in liver. She started on Aromasin 25mg and Afinitor 5mg. She was managing it well, so doc increased Afinitor to 7.5mg. 2 weeks after the increase, her lab report showed increase in tumor markers by 18 pts.
She has a couple of painful mouthsores but she manages with baking soda solution. Recently she has had a lot of fatigue and feels really down. Doesn't enjoy eating much but she forces herself to eat.
She doesn't really have an dental pain but one of her tooth is almost black, I don't know if it's fake tooth or real but I scheduled a dentist appt for her for a full check-up. Just want to make sure oral care is taken care of.
Any other suggestions. Thank you ladies.0 -
Tfedders, I was very excited about moringa, and did extensive research on it. I checked with my oncologist's office to get the go ahead. Her nurse said she would not allow me to take it because of the antioxidants in it can compete with the chemo. I didn't get to talk with her directly as she wasn't in. I was really disappointed, because the moringa sounds great. Any suggestions?
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Hi all, new to this thread and haven't been on this site in a while. I just started A/A this month. My onc. Started me with 2.5 mg of Afinitor each day for the first week. Then I add 2.5 each week ( currently on my third day of 7.5mg) until we reach the full 10mg. Dose. I have not had to much trouble. I take it at 8:30 each night on an empty stomach mostly. I did have mouth sores at first, but since the I got the magic mouthwash none.
I'm feeling really good right now. I'm able to do a lot more than I have in a long time. Also, my femur is finally healing. I do take a monthly Xgeva shot. Over all I'm very happy with this med combo. I am a bit worried about how my live is going to handle it. When I was on taxol it trashed my liver for a good six months after I stopped. Oh well, we shall see.0 -
Well I finally got the afintor today. Started it. I put the pill in marshmallow creme and swallowed it and followed with lots of water. Please pray that this works. I am so nervous.
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I just started on aromasin 3 weeks ago, and afinator 2 week ago approx. l had severe pain in left hip and it was difficult to walk. Improved some with Motrin but still painful to walk at times. Saw onc today ,continue A/A, and he is recommending radiation to hip to decrease pain. Not sure what to think. Was really not ready to do radiation. Any one else had problems like this? Also got magic mouth wash and pain meds if needed. Any input would be appreciated.
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Hello ladies,
I've been on Afinitor + Aromasin + Xgeva for fifteen months. I think I was maybe the third woman on the boards to start on it. My onc nurse says I've tolerated it longer and better than any other patient in their practice, for which I am very thankful. I just had a questionable PET scan after over a year of being stable on this combo, so I may not be on it much longer.
I also don't post on the boards much anymore, but I wanted to pop in and toss out some helpful tips I've learned along the way about taking Afinitor-- maybe it will help some of you.
My mouth sores are under control now, but at the beginning they were almost a dealbreaker. I had 17 by the end of the first week on Afinitor, and could barely walk because the vibration from my footsteps made my swollen, inflamed mouth hurt unbearably. I had to go off Afinitor until they healed. I lived on nothing but fresh cream of celery soup and plain Greek yogurt for over two weeks. I was terrified to start taking it again after that short break, but we dropped the dose from 10mg to 5mg, then snuck back up to 7.5 (where I've remained). The mouth sores have been manageble since then -- never more than three small ones at a time, and often none. However, I've had a lot of weird trouble with my complexion.
Mouthwash -- be aware that there's a "Magic" mouthwash and a "Miracle" mouthwash. One has Mylanta and Benadryl in it, and the other has steroids. You want the one with steroids! The other one is a nasty waste of time, IMO. I keep spare bottles of the good stuff in my fridge at all times and I can tell you it works. DO NOT SWALLOW IT. My onc did not tell me that, and the pharmacist even put on the label "swish and swallow or spit" or something to that effect, so I was swallowing it figuring that it must work systemically. WELL. My dentist came unglued when he found out I wasn't swishing and SPITTING. I seem to recall that he said it's really hard on the BONES. Umm, no thanks, my bones have enough troubles. FYI, my dentist also tipped me off that I can call him for a prescription for it anytime I can't reach my onc -- he prescribes it regularly.
Biotene mouthwash is dandy stuff to have on hand when you have mouthsores, but I think of it as a comfort measure, NOT as a cure. There have been a few times when I could not brush all my teeth because of sores, and it was terrific to have Biotene and a WaterPik to get my mouth clean.
Be picky about your toothbrush and paste! Anything with big chemicals and especially sulfates really tears up my gums now. I use some Tom's of Maine varieties that have no sulfates and no flouride. I also use the smallest, softest toothbrush brush I can find. A baby toothbrush is a good thing to have on hand to use around sores.
I believe probiotic supplements and/or high quality yogurt with active cultures can do pretty much the same thing as the mouthwash, but I am better off using them as routine maintenance and not as crisis measures. In other words, if I have a flare of sores, I go for the mouthwash pronto to heal them up quickly (so I can get back to great cancer-fighting nutrition and living a good life!), but I try to routinely keep probiotics and yogurt going. When I forget them, the mouth sores do get worse.
Swallowing the pill...well, I started with marshmallow creme but I had trouble swallowing it. I used butter for a while instead, which worked better for me. But after so many months, I got tired of messing with so many steps, and found my own way to take them: I get a big gulp of water in my mouth, tilt my head back so far that I'm looking straight up at the ceiling, drop the Afinitor directly from the foil blister into the pool of water in the back of my throat, and quickly swallow. Works like a charm. I never touch the pill and it never touches me.
I need more sleep on this drug combo. Nine hours is good, but even so there's usually one night each week when I saw logs for longer than that. Sleep helps everything.
Hope some of this helps someone!
~lulubee
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Great information, lulubee. What is the name of the mouthwash with the steroid? I just got approved for this combo and should start in the next couple of weeks. I really appreciate the tips and that's great you've been on it so long. Happy Fourth everyone!
Granna0 -
Thank u for all the great info. I will try them out.
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Leah, I was the one who talked with the pharmacist about the local and systemic effects. My MO said it is mostly the systemic effects that lead to mouth sores and other GI symptoms because the afinitor targets a metabolic pathway of rapidly growing cells, such as cancer cells, and also mouth and GI cells, as well as skin (that annoying migrating rash).
Anyone also getting zometa here? I am on it every 2 months, had 3rd one yesterday, have been nearly comatose today until the last hour have felt a little better. I can't believe it has been 5 months on afinitor, 6 months on letrozole (instead of aromasin). No regression of tumor but no progression either! If it wasn't for the LE set-back, I would be in great shape right now!0 -
Just wondering, anyone having respiratory issues with this combo. I have +nodes in the sternum area. I was having this issue before I started this treatment.....kinda like having an asthma attack......but when I started the treatment it went away. Today it happened three times. I've been on the treatment now for three weeks. I'm hoping this is not an indication that its not working.....sigh.
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SassyAlice, I don't have respiratory issues but make sure your doc knows that you do since it can signal a serious SE. Since you had it before the tx it's not likely an SE, and 3 weeks is early to see effects of the drug.
Leah
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Hi Everyone - I know most of us have had issues with mouthsores and Affinator, but I'm getting pretty miserable from this vicious circle. Has anyone found anything that works, other than what has already been mentioned here? I have tried 4 or 5 different mouthwashes, baking soda rinse, saltwater rinse, probiotics, eating lots of yogurt, etc. My onc gave me lidocaine for the pain and it only lasts about 20 mins. I also put the pill in a gel capsule to take it (tried the marshmallow), And I'm only on 5 mg. instead of 10 mg. The only thing that takes the mouthsores away is stopping Affinator. They eventually disappear after about 5 days. And then I start again for about 20 days and get the mouthsores again. Anyone have any other ideas?
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Karen I can't remember where I know this information but if you put Sauerkraut on the mouth sores it clears them up and keeps them away if you eat the sauerkraut. A small amount like a tablespoon per day should keep them away.
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So my mom went to the dentist and discovered she has very large cavities. The dentist said she needs root canals and may be even extractions. One of her tooth has been black for about a year so that's definitely a cavity. I wonder if the tumor markers went up because if this large cavity issue. The dentist didn't say that my mom had an infection, but she said it can definitely turn into an infection if it's taken care of properly.
What do you all think? Anything similar happen to you?0 -
Thanks Anne - I'm willing to try anything at this point, and I am German, so I do like sauerkraut. Seeing my onc. on Thursday, I have a feeling I'll switch to something else. I'm so done with Affinator. Especially now that I'm getting reflux and earaches too.
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Karen,
My onc prescribed a steroidal gum paste which helps with my mouth sores. Nothing else worked for me.0 -
Thanks for all the updates and tips. I have been on the A+A+Faslodex for a month and I am really pleased with the benefits. I found out from last week's blood test that my TM dropped significantly! Yippee! I had a few tongue sores the first week, but now nothing. I was in the sun (always with sunblock) for a day of touring and my face did turn red with peeling afterwards. Nothing I read said anything about sun sensitivity until I read Linda's post about A affecting fast growing cells, like skin. So I will take extra precautions about sun protection. I also appreciate the comment about not touching the pills. I don't see the pill as "chemo", but it has toxic ingredients so I will take more precaution when handling them. I did get little stabs of pain on my skull which my onc said was something I can't begin to pronounce and it is not worrisome.
I asked the specialty pharmacist about the warning of taking it the same way every day, either on a full or empty stomach because I'm not as regular with that routine. I take it at 9:00pm so if there are any side effects, like fatigue, it won't affect my daily routine. I take it 2 hours before I go to bed so I can tell if I need to do anything to counteract other SE before I go to sleep. To make a short story long, he said the food would interact with the way the drug got into my system so it was important to take it either with food or 2 hours after eating to get a consistent absorbtion of the medication. I decided I would take it at 10:00pm to make sure I have an empty stomach. Does anyone take this combo first thing in the morning before eating? The thought of A+A in a really, empty stomach makes me nervous, but it is not founded by facts.
Thanks for all the postings and tips; this has been my personal experience and I am pleased with it so far. Sending many loving, positive thoughts!
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