Posted on: Jan 8, 2012 06:25 PM, edited Jan 8, 2012 06:25 PM by Chickadee
And so it begins. This thread is for those who will be using Afinitor. Myself, I will use it in combo with Aromasin, but I believe there was at least one who will be combining it with Herceptin. Whatever your combination please share your SE's, challenges, and, YES, the hoped for PROGRESSION FREE INTERVALS we all yearn for.
I decided to take mine on a full stomach after dinner. Chocolate brownie for dessert! I also took a Promethezine and my Aciphex. I believe that I will go back to Aciphex in the a.m. but since I forgot it this morning, I took it just now. I want to stay ahead of any nausea that might occur. I have my Biotene mouthwash, along with all the other suggested mouth sore remedies just in case. Have to give up my Sonicare toothbrush I'm sure as it is pretty harsh.
First appt. with Oncologist is in 2 weeks. I took a fasting blood test Friday morning.
I'm still on Fentanyl patches and 2 Oxycodones in the morning for continued back spasms. That will still have to be addressed at some point. Maybe cyberknife if it turns out to be a lesion that just won't quit pinching me. I do love those Oxycodone naps. They are blissful.
So here we go. 2012 gonna be a new adventure and I'm demanding a good one.
Posts 841 - 870 (1,108 total)
Nov 21, 2012 08:44 PM Frapp wrote:
Good luck to you Susan. I hope this treatment is good to you.
Nov 21, 2012 10:59 PM SyrMom wrote:
Well, not sure yet, but may be joining this forum as I've had progression on faslodex. I'm interested, justjudie, about what you said regarding your lung issues on Affinitor. Did you have any respiratory issues before starting this drug? That's one side effect that concerns me, quite frankly.
Good luck to you on the serolimus.
Nov 22, 2012 02:22 AM justjudie wrote:
Thank you, SyrMom. No, I had nice healthy lungs and no respiratory issues ever. The lung side effect from Everolimus is called pneumonitis, drug induced. Apparently a number of different chemos can cause lung problems. It starts with a nagging cough and can get very bad wirh severe shortness of breath. I was so sick. An X Ray showed long streaky areas in my lungs. I had to be on full time oxygen for several weeks. The worst part was no one could tell me if this lung damage would be permanent or not! But I was fortunate. Once I stopped the drug, little by little, my lungs kept improving. I was seeing a pulmonologist during this time too. I think I have full capacity in my lungs now. No more shortness of breath.
Yes, it is a scary possible side effect, but as with all these drugs, most people dont get them. But anyone on Affinitor should definitely be aware of it, and be alert about coughing and
shortness of breath. If you read way back in this thread you'll see others had problems with this too. chickadee for one. Feel free to PM me if you have any questions.
Nov 22, 2012 10:33 PM raro wrote:
Family5, my onc explained to me that after 2 years, you no longer need the injections, you're automatically in menopause. I had the shots for 2 years and then stopped, and am still in menopause.
Okay, I have to ask a Really Gross Question...if some of the side effects of this combo are mouth sores, could it also cause...the "other end" isses?!
I'm talking about hemorrhoids. Ick. I've had them most of my life, but lately they have been horrible. Had a thrombosed one (extremely painful) and they have itched like crazy. Does anyone else have this problem?! They have never bled before but are now. (Sorry if you're eating pumkin pie while reading this...) I've tried all the usual things (witch hazel, Prep. H, etc.) and they don't seem to be doing much good this time. It's pretty stupid to have to interrupt teaching my class at work so I can go to the bathroom so often!
Nov 24, 2012 12:13 AM LuAnnH wrote:
I do get some bleeding hemoraids but nothing too serious, but it mainly when I am constipated. I try to keep everything running smoothly with stool softners or miralex to avoid that issue.
Regarding the stopping of the zoledax injections, I have never heard of automatically being in menopause after a certain amount of years on these drugs. I would not be comfortable with that and would get another opinion on that. The majority of AI's are for post menopausal women because they work with the fake estrogen your body produces or they can clog the hormone recpetors. These drugs are not able to compensate for larger amounts of estrogen your ovaries can still be releasing when you stop using the zoladex. Is there any reason you have not opted for an ooph? Being hormone postive you really want to block any and all estrogen you can possibly block. I have met women that were still producing large amounts of estrogen even using the zoladex injections and ended up with the ooph to stop those buggers from supplying the cancer with a food source. The can do a blood test to check your estradol (I think that is how you spell it) levels. These lets them know how active you ovaries are.
I'm curious to see what others think about stopping the zoladex injections after 2 years with the thought you are automatically in menopause after 2 years on the drugs. Just doesn't sound right to me.
Nov 26, 2012 03:17 PM SophieJean wrote:
I'm in agreement with your post LuAnn, I know Zoladex is used in some adjuvant settings for two years after treatment but even in this situation there are some experts who believe that is too short a time. To my knowledge Zoladex is considered fully reversible in this setting and not thought to alter a woman's menopausal timing much. There is some controversy about how "post" menopausal one should be before using an AI - some argue it should be six months to a year (of no periods). Estradol is a better than none alternative to ooph but the sensitivity and reliably of testing has been challenged in research.
Course if one's onc is confident one is in menopause there might be other good reasons. Anyone have other info on Zoladex that would be helpful?
Nov 26, 2012 03:22 PM Sheff wrote:
Hi, I am sorry to jump the queue so to speak, but this is a very long thread that encompansses several conversations.
What I would like to know, is are any of you ladies having good or hopefully great responses from affinator? This thing was really trumpeted as the next big thing at last years SABC, but I haven't heard much in terms of solid real world results since.
Nov 26, 2012 06:42 PM LuAnnH wrote:
I have been on afinitor since July and have had very good results with minimal s/e. I was just scanned and everything was looking good or better than my previous scan in april so I would say this is a good result. Personally anything that can extend my life another 6 months is a bonus!
Nov 26, 2012 07:00 PM CareBear1 wrote:
I have been on Afinitor/Aromasin combo for one year this week. Just had a ct scan last week and mets remain stable. The only side effects I have had are occasional mouth sores.
Nov 27, 2012 01:29 AM BettyeE wrote:
I have been on A+A for 13 months. I can't believe it has been this long. My last scan was in Aug. I have extensive bone mets and a lot of them showed healing and the others were stable. I had three tumors in my liver and at the last scan I only had one and it was smaller! I have had no SE's to speak of. I am having a lot of pain in my joints and it feels like a nerve problem in my back and legs. I think the pain is a SE of the ARIMEDIX. I changed to FEMERA last month and maybe..maybe the pain is better. I will go back to MDA in Feb. for scans.. I am a little worried about the nerve pain. Have any of you ladies had nerve like pain? If so, what caused the pain?
I would appreciate any response.
Overall I think the A+A was a good decision. I just hope it is not over.
Nov 27, 2012 09:43 AM LuAnnH wrote:
what do you mean by nerve pain? I had terrible back degeneration on arimidex and it caused alot of permanet damage. I have a pain pump implanted to take care of that pain which was a huge relief. So if you can kind of explain what you mean I might be able to make some suggestions.
Nov 27, 2012 10:00 AM Sheff wrote:
BettyE, may I ask, had you had a response to anti-hormonals in the past? While I am ER+ I have had zero response to both Tamoxifen and Femara and my onc thinks because of this Affinitor wouldn't be the best for me because its real purpose to to re-start a response to anti-hormals to cancer cells that have become immune, whereas mine appear to have never been reponsive from the get go.
Nov 27, 2012 08:24 PM raro wrote:
Sheff, that's too bad that you're not responsive to the hormonals. I have been on aromasin and afinitor for about 5 months, and my tumor markers went from the high 200s down to zero. The one liver met I had is gone, and the bone mets (extensive) are stable.
Maybe my onc thought that after 2 years I was in menopause because I was so close already? (I'm 46) I haven't had any periods since we stopped the Lupron shots in April, so I seem to be in true menopause. If I thought an ooph would help, I would do it, but I don't think in my case it would make much difference.
Nov 28, 2012 07:15 AM HeyJude wrote:
I am also on Affinitor/Aromasin. Started in September after hormones stopped working (after only 7 months!) and the first six weeks were pure hell; the onco started me on a full 10 mg dose and it kicked my **s. The mouth sores escalated to the point where I could not even speak, let alone eat. Two weeks on liquids only and lost 12 pounds. Awful stomach upset and general fatigue. Went off for two weeks and then started back on HALF DOSE in late October: 10 mg every other day with Aromasin every day. I feel awesome and even started going back to hot yoga again. Going for my scan next week to see how it's going. I HAVE MY FINGERS AND TOES CROSSED that it's working - because I have literally no limitations other than not being able to drink wine (boo - it tastes like vinegar) and I have to eat in small portions. So my size 4s are back out of the closet.
A note of caution: do NOT drink coffee. In some women it will progress the sores. And whether it's urban legend or not - I wrap the Affinitor in Marshmallow Fluff so it doesn't touch my mouth or throat.
A note of goodness: grapefruit is said to help support the drug and help make it more effective. Eat up!
Nov 28, 2012 09:01 AM lynne248 wrote:
HeyJude - - My doctor (and the supporting documents with afinitor) both say NOT to have grapefruit as it amplifies the drug and could be considered overdosing. I'll double check with my onc today (as I have an appointment), but thought I would mention it to you.
I would LOVE to eat grapefruit again!
Nov 29, 2012 05:00 PM family5 wrote:
So I finally got my Afinitor/Aromasin from the pharmacy yesterday...thought I would start tonight (as I have next five days off from work). I also go to onc tom for monthly zometa. Need to double check on stopping zoladex...after reading posts I am very concerned. Suggested an ooph before( i was 38 when i started this journey), but onc said no reason for another surgery. I did very well on Arimidex and Zoladex for two years...(although of course I wish it was longer)...just hoping I handle this new combo well...the reading material they send is quite frightening! I will keep you posted on the zoladex situation. Wish me luck:)
PS- I will def be using marshmellow cream...i looked into the empty gelcaps at GNC and was told they are no longer allowed to sell them :(
Nov 29, 2012 05:55 PM Lisa821 wrote:
Has anyone had tooth pain on Afinitor? I have been to my dentist twice thinking I had a cavity. He could not find one and thought I might be grinding my teeth. He shaved them down but I still have pain. Its on the upper and lower tooth. My onc thinks perhaps I have a mouth sore near a nerve and told me to take the pill in a marshmellow (tried it and I choked -- how do you do that?). I have been on the Afinitor for 4 months with no side effects. I am now starting the marshmellow creme!
Nov 30, 2012 07:53 AM raro wrote:
Lisa, I've had tooth pain also. The dentist said meds often affect teeth. I found that while I no longer grind my teeth, I do clench my jaw, and that causes teeth to be sensitive. You might want to try one of those mouth guards they sell in the drugstore. I cut off the ends of mine because it made me gag. The dentist is currently trying to get my insurance to cover a custom-made teeth guard because they're thinner and won't cause gagging as much.
Nov 30, 2012 10:27 AM LuAnnH wrote:
I have teeth issues but didn't really associate it with afinitor. I am going to get dentures as soon as I can afford the oral surgery for teeth removal. My teeth started crumbling from dry mouth issues about 1.5 years ago and now I barely have enough to eat.
For those of you trying to buy the gelcaps you can order them on amazon for about four dollars. Someone mailed me their gelcaps when afinitor didn't work for them. I'd be happy to share some if someine wants any, just PM me
Nov 30, 2012 11:19 AM Lynn1 wrote:
This discussion about tooth pain is very interesting to me. I have been a teeth-clencher (not grinding) for a while, but mostly I was doing it during the day. Lately, I have been doing it at night and my jaw and teeth/gums are soooo sore. It never occurred to me it could be from the Afintor. I just assumed I was stressing out more and taking it out on my teeth! I did get a guard from the store. It has helped some, but not totally. It hurts all the time now - I'm afraid I might have cracked a tooth or something, but I'm trying to avoid the dentist ($$$) if I can. I'll keep watching here to see if there is any more information on this.
About the gel caps......I don't know if they have these where you live, but "The Vitamin Shoppe" is another retail store that is similar to GNC. That is where I got mine at. They also have a website so you could order online, but I'm not sure if they would be cheaper on Amazon or not.
Update on me: I saw the onc today and overall things are going pretty good. I'm not having too much trouble with this - the se's are minimal right now. I've been on it for about a month now so it may be too early to say, but so far, so good. I have had this nagging little cough lately - for about the last week or so. I do have allergies though and have had a little bit of runny nose too so I'm hoping that's all it is. I did mention it to my doc today and we're going to do a chest x-ray next week just to make sure everything is ok.
My platelets and white cells are holding steady so that's good. My red cells and hemoglobin continue to drop though. Red cells are at 2.92, and hemoglobin is at 8.9. He said that is not low enough to tranfuse though. I almost wish for a transfusion! With Christmas coming and all, I could use some energy. I hate being so tired ALL the time.
I also found out today that I am the only breast cancer patient my doctor sees that is on Afinitor. I am the proverbial guinea pig!! ;-) He said he does have another patient on it for kidney cancer though. Still, I was amazed that so few are on this. I feel sorta like a pioneer - LOL!!
Nov 30, 2012 07:30 PM Frapp wrote:
Lynn, so glad to hear the afinitormismworking for you. Keep an eye on that cough.
Nov 30, 2012 08:30 PM family5 wrote:
So was told today i was in complete meno after being on zoladex for two years. Onc said he would check hormone levels in couple months. Tonight is second dose of Afinitor/Aromasin...so far so good (probably too early to say this). How soon do symptoms usually show up anyway?