Afinitor/Aromasin
Comments
-
Suecolo2, now I understand! Yes, at this point, one wonders just how much of a problem high cholesterol is compared with stage IV BC! But I also know that afinitor can cause or worsen the cholesterol level, so I think it's a case of "damned if you do, damned if you don't".
0 -
Linda n-3, I was taking 10 mg of Afinitor prior to my getting approval for TDM1. TDM1 is for Her2nu+. The onc thought that with both of the drugs, I could stay on the 7.5.
I am aware that in the approval of Afinitor it was said to be for women who for ER/PR+ and Her2nu-. I love my onc because he is always willing to step outside of the box. He believes that the Afinitor works whether you are Her2nu+ or - and that one has nothing to do with the other. Luckily the insurance approved it. I am also taking Aromisin.
I believe that the 7.5 has only been available in the past few months. I would discuss with your onc if you could try the 7.5 before jumping to the 10. When I started on Afinitor the 7.5 was not available, so I started on 5 and then jumped right to 10. I have found with Afinitor that you do get somewhat used to it and the SE's do become more manageable. I would recommend definitely taking before bed. Some women have reported headaches and nausea which you can sleep through. The only SE I've had are some gastro issues. Of course that is annoying also, but I've had worse on other drugs.
Good luck with the Afinitor. It's not as difficult as some drugs I've taken. Also, you don't lose your hair.
0 -
Pearlady, thanks for the info. I have often wondered if one of the drugs for Her2+ is also good for others as well - mine was considered Her2- but it was actually very slightly positive on one of the pathology reports. I do take the afinitor at night along with letrozole (instead of aromasin) and have been amazed at how few SEs I have had. I have tried to follow advice given here as well as my MO has given me good advice for minimizing SEs (lots of fluids, exercise like crazy, small frequent meals, rinse mouth frequently, etc.). SO MUCH EASIER than tamoxifen, chemo, and other meds I have been on over the past 2.5 years! I just hope it works - since starting the afinitor, I have not developed any new nodules, and I wonder how long it takes for them to shrink if they are going to.
0 -
I have never taken a sleeping pill in my life. The last 5 nites I cannot get to sleep. It has to be the Afinitor. I go to bed at 10:30. I try to not look at the clock but I then see it is 11:30, 12:30. I guess at some point I go to sleep. I stayed up reading until 11:30 last night and the clock showed 12:30, 1:30. I have been on this med for almost 3 months. I tend to wake up often but always go back to sleep easily. I wake up at 7 am, get up and have milk and a banana and go back to bed and quickly fall asleep for two hours. Any one else experiencing this?
0 -
suecolo2, I have always been a poor sleeper, now have resorted to occasional sleeping pill. I still wake up 2-3 times a night, usually soaked from hot flash. Still, these hot flashes are much less overwhelming than those that I had on tamoxifen. Sleep ... well, it is a wonderful goal ... maybe some day it will get easier, but the physiology of aging suggests that it will continue to be elusive.
I have a rash on my neck today that is itching, little bumps, but have not noticed them anywhere else on my body as of now. I think I read somewhere back that afinitor can cause a rash, but I don't know if this could be related, or maybe related to being out in my garden earlier today. I am not allergic to anything that I know of there.0 -
I was originally dx Stage III ILC w/ 9+ nodes (mammogram missd a 5.5 cm tumor and ar 43 I was told I was fine, too young, no family hx, so I called a surgeon myself) 10 years later and 2 noonths after losin my mom, I found out I was Stage IV and it came back to my brachial Plexus. I have no use of my arm, the nerve paiin is unreal and started finitor and Arimidex about 5 months ago. The tumor was 9.1 and after trying new shots for er/pr+ even though it's inoperable, the way it acted my onco thought it was metastatic bc. I had a MRI 6 weeks after the loading dise, it grew to 11.4. I never heard of such a thing. I gad a bad reaction to Doxil after that and theb came the A/A. It shrunk to 9.5 after 3 months and will have a MRI the 20th of this month to see what's going on now. Do ya'll's onco' expect it to quit shrinking it if it's shrunk it some so far or are you being told it could quit qorking as fast as it started working. His hope is for it to shrink it to a small size and keep me stable for years, even though with Stage IV it will show up simewhere else, just when and where is the question. I had to go on trigliceride med because of mine going so high, one of the side affects
0 -
I have a question for ladies who are her2 positive. Did you have any problems getting insurance approval for Afinitor? My insurance has denied my request for Afinitor. I am appealing right now and will find out the appeal decision tomorrow. They have said it is because I am her2 positive. My onc believes that this drug will be useful for me as I have PI3k mutation and Afinitor targets that pathway. Any tips for me to get this through ins or get any assistance as it is an expensive drug. Thanks.
0 -
formygirls i am so sorry i have missed all that has been going on with you lately. i am so sorry about the progression. i am praying that you get the approval foe affinitor soon. you deserve a break
0 -
Thankyou Barb.
Wanted to update all that my ins approved Afinitor today on appeal. I am excited to start this today and hope it will live up to the promise! I start today on 5 mg daily Afinitor with Xeloda, Herceptin and tykerb. Really want this to work.0 -
Formygirls, so happy that this was approved! Hope that this works for you for a long time.
0 -
Linda I don't have many side effects from the Afinitor either pther than some gastro issues, but nothing like what I had previously on Herceptin/Perjeta. The one thing that I also noticed that you mention is eating small meals, but more frequently. Once I learned to deal with that, it's gotten much easier. I find that having yogurt and banannas first thing in the motning and before I go to bed at night has helped very much. Glad that you're dealing with it so well. Let's just hope that it works for all of us for a very long time.
0 -
Formygirls....I love A/A. Hope you do too!
0 -
formygirls i am so glad you got the approval, i pray this is the break you have been waiting for
0 -
Just wanted you to know that I am able to sleep again at night. I switched my A/A pill from bed time to early in the morning. I had been taken it at bed time for 3 months.
0 -
I started with Afinitor last night, only 5mg, and have already had two nose bleeds. The first one started an hour after taking the Afinitor and lasted about 10 mins. Anyone else have nose bleeds on Afinitor? I also had Herceptin, Zometa, Xeloda and tykerb yesterday but I have had all of them before. Thanks! I googled this and came across some anecdotal stuff but not much.
0 -
I have had a few nosebleeds since I've started A/A. Not bad or gushing, more like seeping that takes a while to stop.
Leah
0 -
Since I started Afinitor 3 months ago, I cannot believe how much mucus I continually blow from my nostrils, especially when I first wake up. The musuc always contains some thick blood, thin blood, mixed with clear mucus. I have not had straight nose bleeds though even though I am always blowing my nose very hard to get the stuff out. I just find myself going through a lot of kleenex.
0 -
I wanted to share that I have been on A/A for over 3 months now and never had one mouth sore UNTIL I went on vacation, of course, Murphy's law...started feeling them on my tongue on Tues, by Thurs had a fever of 101 and a mouthful of sores, I went to the pharmacy, pharmacist recommended rinsing mouth with peroxide, followed with mylanta liquid swish, also to swish often with Biotene, also my oncologist recommended swishing/swallowing Aloe juice, and called in for me litocaine gel to put on the sores, did all of that for 3 days and came home late last night with my face still swollen, couldn't swallow or talk without hurting so this morning went to Urgent Care and Dr. said the mouth ulcers were infected and prescribed amoxicillian 500 mg 3 x day, pink magic mouthwash and a Triamcinolone Acetonide 1% creme to put on the sores. I knew with Afinitor to expect the side effect of mouth sores but didn't expect this! I'm just glad to get the meds that have already started working a little. I did stop taking the Afinitor thinking it might help the sores go away (without talking to my onc) but I will return to taking it. I am now on the 10 mg dose. I was taking 5mg and 10mg every other day during vacation (and for the last month) and was told to start the 10mg dose when I got home. I hope I don't get more and that these go away with the Amoxicillian. Wish me luck!
0 -
I wish you tons of luck. I cannot believe that one medication could have brought on such serious side effects after taking it for over 3 months. Even a fever from infected ulcers. I truly feel for you and hope from all the different meds you are taking that these ulcers heal up quickly. How are you feeling now? You must have been so worried and then to have it happen on vacation. I felt terrible on our vacation a month ago and now wonder if maybe the stress of packing, flying, etc., brought on more side effects. For me it was just total fatigue but no mouth sores. I was like you and cut back my Afinitor and even skipped a few pills on vacation without telling my doctor, but I still felt terrible. Let us know how your ulcers are healing. Are you able to eat? Just sorry this had to happen the way it did to you.
0 -
Thanks, I am on a liquid diet now, can't eat still, it hurts! Now have had 2 days of amox and it doesn't feel better yet. Poor me
Thanks for asking. The vacation was wonderful it was with Little Pink Houses of Hope in St John, I just wish I wouldn't of had that happen, but it was still best trip ever! I hope everyone can take advantage of the wonderful organization!0 -
chefmiche, I sure hope you are doing better each day! I have been nearly fanatic about mouth care except for some days when I am extremely busy and forget to rinse frequently, but I am sipping water all day long. I wonder if, on vacation, there was a change in your mouth care routine? I am asking because I am going up to 10 mg this week, and am planning a trip with my mom in 3 weeks and sure don't want to deal with this issue then! And I know it is so hard to do ANYTHING routine when traveling.
I continue to experience lots of anxiety related to new meds, new treatments, etc. Just developed LE this week, so now have that to deal with on top of the meds issues, and zometa kicked my butt this week as well for a couple days. But I am feeling better except for the swollen arm, and see the LE specialist tomorrow, so maybe get that under control soon.
So I am doing the best I can to take one day at a time, but as my t-shirt says, sometimes they come at me all at once!0 -
Hello A/A ladies:
I'm stage IV having used Avastin/Taxol which induced a five year remission, which was maintained by taking Femara. Then new mets. Tried Aromasin and Falsodex with no luck, then Xeloda with an almost 2 year positive response. Then to Navelbine which was seemingly working upon first PET after three months, but now at six months the Navelbine isn't doing the job stopping the bone mets. I have mets throughout my spine, ribs, hips and femurs. (Had Liver mets but the Xeloda simply smashed them into submission, and they are not back.) So, my options now are Doxil, Abraxane, or Affinitor/Aromasin or with another hormone type treatment (maybe back to my old buddy femara). I've eliminated the Doxil as a candidate due to serious potential for heart damage. I was leaning toward the Abraxane since I did have taxol before (with the Avastin) and did well with that. Then, I remembered that my 23 and Me Avastin study results showed I had a chk 2 variant, which is a protein kinase which plays a role in the mtor pathway. I have mentioned this to my oncologist in the past but am not sure he rememebers that. So, tomorrow I go in to choose between the Abraxane and the A/A treatment. I have a lot of GI problems (really bad reflux) which made the Xeloda hard for me but I got through it. The Navelbine started to give me GI pain just before I went off it. Taking an oral treatment worries me because of my crappy stomach, but the Affinitor somewhat appeals, even though the Arimasin never showed any promise, because of this genetic variant I have in the mtor pathway. Maybe shutting that down will work. However, the more I read about the Affinitor the more it sounds to me like the side effects can be pretty bad. I did go back and read about the potential respiratory issues. I notuced a lot of peiople having other SEs like low RBCs and even a few high sugar issues. The lungs and the sugar issues worry me because my lungs, while they have no mets, are probably in bad shape from years of smoking. Diabetes is in my family, and I have had Graves disease, which is also an autoimmune mediated disease (like diabetes in some cases). All and all the Abraxane sounds like I might tolerate it better, and after all it could have been the taxol in the Avastin/Taxol combo that helped in part with my long remission before.
So now, I am torn. I need to discuss the Affinitor with my onc in the context of knowing I have the Chk 2 variant. I was wondering, since so many of you must have participated in the clinical trial for Affinitor, if that trial involved doing a genetic profile and if so, were any of you advised you had the chk 2 varient? If so, what were your results and SEs using the Affinitor. I don't give a crap about losing my hair. What I am concerned about are GI side effects, the mouth sores which sound very common, and the respiratory issues. I don't anticipate I would have these problems with Abraxane because I had the taxol before and tolerated it very well, with only fatigue and hair loss as an SE. (I am so used to the bone pain, joint aches and pain, which I have had from the beginning and take methadone for, that I simply assume whatever I will be on will cause that.) Abraxane is just taxol packaged with a nice little delivery mechanism that delivers the drug more effectively with less SEs.
Any comments, info would be appreciated. Of course, I know everyone's experience is different, I've been dancing this dance since 2005. (I am so lucky to have come so far with so little serious SEs, I realize this the more I read about everyone else's experiences.)
Thanks.
DG0 -
Chefmiche,
Well, I have just joined the AA bunch after consulting with my oncologist. I have not started taking it yet as waiting for insurance to OK it. However, I have been Stage IV for seven years and on various treatments, so I am no newbie. I read your last post and for all it is worth, I would suggest that perhaps going back up to the 10 mg upon your return after the mouth sores and infection is a bit premature. Have you spoken to your onc since you went to Urgent Care and were given the antibiotics and rinses? In my humble opinion it might be wise to stay on a lower dose of the Affinitor a bit to give the mouth tissue a bit of a boost in shedding the dead cells and generating the new ones so the ulcers heal faster and do not become reinfected. Of course your oncologist needs to make this determination depending on where you are in your BC disease process.
One thing I do know, which I was reminded of today during my discussion with my onc is that the whole point of treatment is not only to give you as much time as possible (for newer better drugs to be developed down the road) but to maintain a good quality of life whilst doing so. A balance has to be struck and you sound just miserable you poor thing! I would have no doubt that the stress of travel contributed to that sudden eruption of ulcers! Our bodies are exquisitely designed things and there is so much doctors can't yet tell us is fact via research but is simple common sense! If you are a reader and interested, there is a field of medicine called psychoneuroimmunology....now that is a mouthful for you! Anyway, this science is about how our minds and bodies interact with our immune systems.....it is all one big loop! Interesting stuff if you have a mind to look into it.
Anyway, I hope you feel better soon and do encourage you to discuss keeping the dose down for a bit right now if you have not already with your oncoloigist. What my oncologist emphasized to me today, since I was very concerned about the potential SE's of the AA combo, is that he can help manage them not only with additional medicines but with Affinitor dose reductions and increases depending on the SEs.
The Aloe Vera Gel is a great idea. Not only should it ease your pain a bit it WILL help heal your ulcers. An added bonus us that when you swallow it, it helps speed motility in your GI tract (helps the food be digested more easily). Of course it tastes nasty, I know. There is a product called George's Aloe Versa JUICE which is the gel diluted in distilled water which somehow does not taste like anything but water. I have used it in the past for my GI problems, which I had even before cancer. See if your local health food store has it, run its ingredients by your onc, and give that a try as a swish and swallow if he approves as an alternative.
Yikes, this does not sound like it is going to be much fun.
DG0 -
Now a question for myself.....what's all this talk on the old thread about taking the affinitor coated in something about? Is that meant to help with preventing GI problems? I already have really bad acid reflux, had a surgery for it before I even had BC. I am going to start Aloe Versa JUICE myself (after running it by my onc, forgot to today). Are there any other tricks I should know about to help prevent and manage GI problems? These are always my biggest concern when it comes to SEs.....well I know there are worse things, but those just happen and are difficult to predict or prevent.
Thanks for your suggestions.
DG0 -
Dragongirl I had heard from the original thread to put Afinitor pill in marshmellow creme to prevent the mouth sores, and it did work for 3 months until last week. Which was prob a combo of things that caused it. One of the mouthsores did turn into an absess (according to my dentist) that I am seeing an oral surgeon on Monday if it hasn't gone away on it's own.
I had a MRI of my hip done on tuesday because on my 3 month scans after starting A/A combo the PET lit up on my right hip where I had previously had surgery to remove a tumor that had caused a fracture and replaced with cement and bone graft and even though my onc had suspected the area lit up from previous surgery she called me today with results that I do have a new tumor on my iliac bone. So I will stop the A/A and move to Xeloda.
0 -
Saw my doctor today. I have had several bone mets of my vertebre and pelvic area for several years that three different hormone meds kept sleeping until March. PET scan shows a mixed response although I only have one new bone met in the femoral shaft. She no longer wants me to continue with Afinitor as she has heard of lung problems. The PET scan shows either inflammatory or infectious process of both lungs. I have been coughing ever since starting this, but it was like a dry cough. I am relieved as the past 1.5 months have been so difficult as my stomach is sick all the time. I have lost 15 lbs. due to no interest in food. She did say this is not common with this med. Many months ago she suggested going to MD Anderson when my hormone meds no longer worked. I have an appointment set up for June 10. I feel this is the right time for a second opinion. I wish all the rest of you the best of luck with Afinitor
0 -
Hi Sue,
I've been watching this thread wondering how people are faring on Afinitor and hoping the best--i know we are all individuals and what works for some doesnt work for others--i may be back on it, depending)--as you may or may not remember, I also have had lung issues on afinitor(so doc and i decided it was best to take me off just in case)--and now residual shortness of breath that is supposedly due to my lung problem-scarring, etc.
I was a little nervous about my right lung being "questionable" on recent scan(after afinitor) when it was never brought up in prior scans... activity was always only in the left lung. guess i'll wait till next scan and see if it cleared. i had 2-3 bouts of pneumonia on afinitor--then a thoracentesis that did not relieve my shortness of breath(it always had in the past)--so am now on faslodex and also just started arimidex. too soon to know if it's working but my estradiol has been spiking --we're looking for the cause.
Now using oxygen at night--helps with a more restful sleep so cant complain. Pulmonologist wanted me to see a surgeon--so i went, but surgeon said my left lung was too damaged and he didnt think he could do anything to help. Of course i can always get a second opinion, but in the meantime i'll just live with it and hope that current treatment can get me NED so the symptoms wont be so taxing.
Wishing you the best on your upcoming treatment. Wishing all the best with their treatment too
love to all.0 -
Chocolates a,
I had a few MRI's that showed some questionable stuff in my lungs a few years ago, but it whatever it was resolved itself and it was not cancer. I think the term they used was ateclastasis? Basically it is shadows that appear after some sort of inflammatory episode in your lungs. Here's hoping that your images clear up once you have more time to recover!
DG0 -
Chefmiche,
Sorry to hear about your progression. The good news is that it is only in the bones! I know that sounds weird, but bone mets can be managed more easily than organ mets. I am just riddled with the bone mets myself but get along pretty well with some good pain management. I can't run any races or climb any mountains but manage to do pretty basic day to day physical activity, just being careful not to fall and break anything. I've been on Zometa for years and that has seemed to help. I was very lucky with the Xeloda, got almost two years out of it. I found the worst SE was the hand foot syndrome, so get some good hand cream from the doc (mine gave me Ammonium Lactate), use it religiously, use dish gloves so as not to subject your hands to too muchwater, aMD so on. Be sure to report it to your doc if it gets bad so he can give you a dose reduction if necessary. i had a few reductions and the Xeloda still worked for quite a while.
Thanks for the tip.
Good luck!
DG0 -
Thank you for your tips DG, my onc recommended Utter cream, I hope it will work!
0
