Afinitor/Aromasin
Comments
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Spoke to my onc today. Confirmed hydrogen peroxide is a NO NO for mouth sores. Got my first one today....baking soda swish and Biotene suggested. Moving to alternating daily 5mg/10mg tomorrow. Crossing my fingers and toes. pearlady....thanks for posting...1.5 years on the Aromasin/Affinitor is very encouraging!
For my girls,
How ya doing?
DG0 -
Hope everyone is having a good day today and is as well as can be expected.
I've now been on A/A for 2 weeks and the SEs are building. I take my tablets after my evening meal and for the last two days have had flu-like symptoms an hour or two after taking them; shivery, achey and exhausted... This lasts until I go to bed, but I'm fine again when I get up the next day. So I was just wondering if anyone else has had anything similar and, if so, did it resolve itself with time, or do you still get this with each dose you take?
Look after yourselves, you A/A-ers (Absolutely Adorable?!!)0 -
I usually am just a lurker but I really wanted to join in on this tread. I have been on Afinitor since March 2013. I can't swallow a pill so my doctor told me I could crush it but it would probably lead to mouth sores. She suggested I put it in yogurt. I have to say I have only had one mouth sore. I started out with taking 10 mg every day for about a month, but my liver enzymes jumped up to 600. I had a rash all over my face and my eyes were swollen shut. When I went to the doctor she had my CTC tested and it fell from 196 to 17 just in the 1st month. She suggested we drop the dose to 10 mg every other day. That got rid of the rash and swollen eyes but then my red blood cells and platlets started to drop. My red blood cells fell all the way to 5.3 and then I had to have a transfusion. I then dropped my dose to 2.5 to see if my body could handle the smallest dose. I have read through everyone's post and I haven't seen anyone who has had this problem. Any advise would be great!
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Forymygirls, Hope you are feeling better. I got some magic mouthwash which helped for last night. I tried the suggestion about wrapping marshmellow cream around the pill and swallowing with water. I haven't needed the mouthwash at all today. I also gave myself a treat today and got a massage!
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Formygirlsgirls I hope u will be feeling better soon. Let us know. We care
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Frame,
Welcome you silly voyeur!
I have only just started A/A myself, so I can't speak to your question other than to say your doctor's approach sounds appropriate and logical. I would guess it might take some time for your crit and everything else to normalize, but then perhaps you can use the low dose or increase more slowly.
Good luck!
DG0 -
Last night I had the shivers and aches again and a temperature of 101 to go with it... So I called the trials unit today and I've been advised to skip today's dose and go and get my bloods done tomorrow, so that they can check what's going on. I hope this doesn't mean I'm going to struggle to stay on this treatment...! It's only been 2 weeks!!!
Have a good day, everybody!0 -
Just back from my cancer centre. My bloods are fine, so I'm going to try again tonight and see what happens. I'm hoping that my body just needs a little time to adjust to the new poison...!
The trials nurse did mention that everyone at my cancer centre who started this trial before me has had to reduce their dose, though, which is quite interesting!! So I'm just wondering how many of you are still on 10mg every day and how long you've been taking this dose? Hope you don't mind my asking.0 -
When I first started last August, I got the fever and chills thing. I stopped after only 2 days at my dr.'s suggestion and waited until the symptoms were gone. Then I started it again...and no side effects! I've been on 10 mg since then.
Long-term side effects...well, that's another story. The one that pisses me off the most is the diabetes. I used to have no issues with blood sugar. Now I'm diabetic. I wouldn't mind taking pills, etc., but I REALLY hate that suddenly I am ridiculously slow to heal. I can't get rid of this nasty cold...I used to heal really fast, but not anymore. Sigh.
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Thank you everyone for your support. I wanted to give an update. I spent forever in the ER but so far tests have shown nothing. I still continue to have low grade fever and hope it is not due to liver mets as I used to get daily low grade fever when first diagnosed. My onc called in a topical steroidal paste for my mouth sores and that is the first thing that has given me relief. I was able to eat breakfast today. Otherwise, I am just super tired and struggle to get out of bed. Onc just said it is a combination of all the treatments I have been on and the combination I am on Xeloda, Afinitor, tykerb and Herceptin. I also have a horrible acne like rash all over my face. Do not know which medicine is causing that. Onc has said if mouth sores get worse, she will stop Xeloda but I cannot stop Afinitor.
Angel falls,
I am on a 5mg daily dose.0 -
Thanks for the input, Raro. I just had a day off and took today's dose about two hours ago. So far, so good... Sorry to hear that you're having to live with diabetes now. Like we don't have enough to deal with! Do you know if it's reversible? So if you change tx in the future (and I hope you won't have to do that for a looooooooong time), will this resolve?
Thanks for sharing, formygirls. I'm sorry to hear you're struggling with so many side effects and really hope you can get some relief and some idea as to what's causing the fever. Hopefully it isn't what you fear but something which can be easily treated... Great news about the relief for your sores, though - hope you had a real treat for breakfast!0 -
Angelfalls, I started the A/A combo 2 months ago with 10mg and I'm still at that dosage. I'm wondering if I'm tolerating the high dosage since I'm not after a lot of chemos. The only time I had chemo was following my original Stage III dx and that was over 4 years ago. I was dx Stage IV (bone mets) 3 years ago and was stable on Femara until recently.
My main SE is loss of appetite - I've lost 10 pounds in 2 months, really not good. It was compounded by a recent bad virus/high fever that lingered though is pretty much gone now. Raro, like you I'm just not healing well now (probably also from the Afinitor, which can mess up your immune system).
I've recently started the small-frequent-meals thing to try to get more nutrition into me. Onc said to continue that but also to consider Ensure. I hope it works, since the SEs of this are tolerable.
Leah
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Just checking in, wishing you all better days. I saw my MO yesterday, labs mostly good except white blood cells low, but not dangerously low. I have been on 10 mg afinitor for 3 weeks, titrated up from 2.5 for 10 days, then 5 mg for 2 weeks, so have been on it for total of 6 weeks. I have just developed a little rash, I asked if it goes away, she said "it migrates!" - so I guess I can have it one area for a while, then a different area - doesn't seem to bother me right now, hope that continues. Will see her again in a month, labs and zometa infusion. No scans (hooray) as she is following the tumors clinically by whether they get larger or smaller. I am good with that because unless I have other symptoms that indicate progression, we aren't going to do anything different for now, so scans would be a waste of time and money and anxiety.
Appetite not so good, lost more weight since last visit. Nothing tastes good, well, there are a FEW things that taste OK. I treated myself to a facial today, and the aesthetician (is that what they call these ladies?) told me she likes the soft tofu with added flavoring, like fruit or chocolate for dessert. I know there is some debate about the soy, but I have read a lot of literature on that, and it seems that if you eat in moderation it's OK, just not do soy supplements. So if that gets a little protein in me, that may be helpful, not sure it would be any worse than all the dairy sources that probably have hormones in them... and I am getting really tired of Greek yogurt. I am a vegetarian, keep thinking of eating meat again but that thought just makes me litterally gag, so I will do the best I can. DH is NOT a vegetarian, makes life around here interesting! LOL
Fatigue and pain continue to be challenging, but I had them BEFORE starting the AI and afinitor (I am on letrozole) and MO said to exercise! Well, I was doing well, but then got LE and that has limited me simply because I just don't have enough time or energy to take care of my arm AND the rest of my body! But it is getting under control, and I have started walking again, so maybe pain will decrease. Also Ritalin (methylphenidate) helps with the fatigue when it gets really bad. Warm/hot shower or bath helps pain some. I am considering a heating pad, but wonder how that will work with the hot flashes...
I checked with my pharmacist, and he says afinitor causes mouth sores by 2 mechanisms: locally AND systemically, much like other chemos. He told me that it should NOT be crushed, but COULD be dissolved in liquid if you cannot swallow the pill. He said putting the pill in a marshmallow or other food probably doesn't do all that much to help, but to try it if I wanted to. Main thing is to wash it down with LOTS of water - at least 8 oz, and I usually do 12 oz. And I sip on water all day long, at least 9 glasses of water, keeping my mouth rinsed as I do. So far, just burning tip of tongue and burning lips, but no overt sores.
Formygirls, you are on so many meds right now, it is probably difficult to sort out which SEs are coming from which meds, and I am so sorry you are having to deal with all of them. Hoping for some moments of peace each day for you. Each day will have at least one moment of joy, even with the SEs, but it is tough to see them sometimes. I will keep you in my heart and prayers, along with all the rest of you on this thread and BCO.0 -
HI Ladies, I'm not on Affinitor myself but watching it closer because it will certainly be a next step for me. This info is just out from MedScape - I've pruned it down but essentially its saying that there have been Affinitor deaths not reported in the early trials and that medical issues MUST be closely monitired. Hope this helps some as you chat with your oncologists.NEW YORK (Reuters Health) May 20 - The risk of fatal adverse events
(FAEs) is slightly but significantly elevated in patients treated with
mammalian target of rapamycin (mTOR) inhibitors, a new meta-analysis
shows.
"As this class of drugs gains greater clinical use, practitioners must be aware
of the risks associated with their use and provide rigorous continuous
monitoring, especially since the initial recognition of serious adverse events
can occur several years after a drug receives FDA approval," The leading reported causes of deaths were sepsis or
infection (15.7%). Acute renal failure accounted for 5.7% of deaths, while 3%
were attributed to cardiac arrest or myocardial infarction.In this study, the large percentage of reported FAEs that were not assigned
a specific cause raise concern, [This means that many of the MTOR studies reviewed reported deaths but not the causes of deaths].....the causes of FAEs that were reported did not correspond
well with the "well-described and understood side effect profile of mTOR
inhibitors." [This suggests that there is new information in causes of deaths that hasn't yet been included in drug cautions and side-effect profiling]
The lack of information on cause of death limits the ability of physicians to act
on the findings, Dr. Gartrell said, but the results underscore the importance of
carefully following patients treated with relatively new drugs....Bottom line is be vigilant about your health on this drug and don't brush off non-typical side effects. The % of deaths by infection is really a heads-up.
For those of you with Medscape accounts the link is:http://www.medscape.com/viewarticle/804419?nlid=31403_330&src=wnl_edit_medn_honc&spon=7
Best Sophie
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Thanks for sharing this info, Sophie. I read somewhere (may even have been on these boards!), that fatalities run at around 3% with Afinitor compared to 1% for most other chemos. So you are right to say we need to be especially vigilant with SEs.
My post-dose fever seems to have resolved, but my onc wants to see me on Tuesday for an extra check-up and has referred me for lung function tests as she feels we need to rule out pneumonitis. The trials nurse who called told me that even if I do have pneumonitis, I wouldn't have to leave the trial, as Novartis has given them a special protocol for this... Not sure how comfortable I'd feel with that, especially after having read some of the experiences others on these boards have had with pneumonitis. So I'm a little surprised that there's no mention of respiratory problems in the causes of death in the above. And if only around 25% of deaths are accounted for in the causes mentioned, what caused the other 75%?
Thanks for your input, Leah. Your theory about tolerating this tx better if you've had fewer previous chemos is an interesting one; I've gone through Xeloda, Taxol, Aromasin & now added in the Afinitor in the last 16 months and have been in tx continuously for the last 10 years, since initial dx, so you may be onto something! My body's just screaming out for the break we can't give it yet!!
Linda, Keep on keeping on! Nice to have a break from the scanxiety for a while!
Hope you can all enjoy the weekend. Sending hugs.0 -
I started on 10mg in November 2011 and am still on that dose. I have only had one week off due to my CBC dropping too low.
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Angelfalls, Yes, thats the troublesome thing about this study review. Their results say that more women have died from things not on the Onc's radar than the things that were on the radar.
Affintor has been used in other cancers and they have good protocals for managing the pneumonitis if identified early with drug breaks and dosage reductions. The monitoring profile is pretty tight - its much the same as the monitoring for Xeloda hand/foot and disgestive issues and is based on seeing the lungs make full recovery. I think the problem was that pneumontis wasn't caught by breast cancer oncs quick enough - it was fairly well known in the other cancer usages. Having studies that do not report what women died from sure doesn't help either....
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Wow, CareBear! That is such an inspiration to me and I'm sure to many others. I hope to follow you down that long and happy path and really hope that you get many more years out of this drug.
Thanks for sharing even more of your knowledge on this subject, Sophie - knowledge is most definitely power!0 -
Hi guys,
I woke up with a rash on my neck today, with an itchy scalp too. By this evening it had sort of spread to my face...little red welts. Truth be told I was glad to see it spread because I was having worries I had bedbugs (having had a friend stay at my house a few weeks ago because someone in her building got them and they were spraying...she was chemically sensitive). Just wondering, to confirm this is the Affinitor causing the rash, anyone else get it on their neck and face ever?
Thanks
DG0 -
I have a rash which started out on my neck and has now spread to my hands, forearms, groin, hips, tummy, thighs, but not my face... Yet!!
I would definitely say Afinitor rash and not bedbugs.0 -
Angelfalls,
Yup, chemo rash for sure. I found a bug on my bed which freaked me out because I had a friend over who lived in a building with a bedbug problem. After hours of googling I identified the bug.....a spider beetle, which looks a bit like a bedbug nymph but not so much once you compare them! PHEW! I captured and froze it for a professional opinion but am 99.9% sure I am correct.
The rash has disapppated a bit, still a bit itchy but not bad. My MO has me taking the Affinitor 5mg/10mg alternating days....such a good approach I think, to start out. Had a few mouth sores but they are under control so far. Of course I started all the bedbug eradication precautions, vacuuming, washing clothes, inspecting my mattress and box spring (no signs) and covering them with those enclosures. Probably a good idea to have since I live in a apartment anyway, there is a resurgence of bedbugs everywhere! So, I am exhausted, but surprised I was able to do so much physical labor! Fell on my ass going down the stairs to put out garbage but no damage that I can feel other than a pulled neck muscle.
It's been a hell of a week. Argh!
DG0 -
I maybe starting this combo. I need some advise. I am on femera and faslodex but I don't think it's doing it's job any more. I heard something about marshmallows and tucking the pill in there to help prevent sores. If anyone could give me some good advise would be great....
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Stellaratovsky, sorry to hear you may be having to switch meds - it is always challenging to just almost get used to one protocol, then have to change and go through a whole new set of SEs all over again. I posted above, in a very long post, so will just put the short version here, and wish you well.
I checked with my pharmacist, and he says afinitor causes mouth sores by 2 mechanisms: locally AND systemically, much like other chemos. He told me that it should NOT be crushed, but COULD be dissolved in liquid if you cannot swallow the pill. He said putting the pill in a marshmallow or other food probably doesn't do all that much to help, but to try it if I wanted to. Main thing is to wash it down with LOTS of water - at least 8 oz, and I usually do 12 oz. And I sip on water all day long, at least 9 glasses of water, keeping my mouth rinsed as I do. So far, just burning tip of tongue and burning lips, but no overt sores.
The other thing is to keep rinsing your mouth frequently, salt water or sodium bicarb water, or salt/sodium bicarb water. Main thing is keep the mouth clean, keep the saliva flowing!0 -
Thank u Linda this is overwelming. It is bad enough my back and hip kills me know to worry about mouth sores it's just to much to handle. How much pain can a person handle before just throwing your hands in the air. I have no choice but to fight I have boys that still need me. I am sorry to rant I am just overwhelmed with all of this.
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Stella, I hear you on just how much pain we can endure. I feel like a boxer getting hit down, time after time, then I get up to get pounded down again, and then I ask "gee, if I just take a dive, will they quit knocking me down????" Right now the letrozole and afinitor seem to be the least of my worries - LE is the second worst thing that has happened to me during this nearly 3 year journey so far; the first was the chemo-induced peripheral neuropathy. Both plague me because I am one of those who is constantly on the move, using my hands for nearly all my work; the only thing worse would be losing my legs and mobility. So for now, a little rash and a sore tongue and dry mouth are almost tolerable, it's just that so many things attack all at once, hard to keep balance, hard to keep positive attitude some days.
This is truly overwhelming, and you have to learn to be kind to yourself and not expect yourself to act or be or do things the way you did before you got sucker-punched with this diagnosis. Using the 24-hour rule is helpful: take a deep breath, acknowledge how you feel, your emotions. You feel the way you feel, and no one can change that (and if anyone tries that with me it is at their own risk of bodily damage!), so be kind and forgiving to yourself, just for a day. The one truth is that everything changes. And so tomorrow will be different than today. It will still have its ups and downs, but it will be different. You will find many joys and moments of grace IF YOU LOOK for them. If you don't look for them, you will likely miss them.
How old are your boys? I am sure they will give you many of those golden moments, but look quick because there are just as likely going to be a few less than pleasant surprises as this is part of raising children! (I don't have children, but I observe 10 nieces & nephews as well as friends' children and grandchildren - lots of love and laughter, also a few temper tantrums and a bit of spoiling - all rolled into helping these young people become responsible adults. So your goal to fight this disease so that you can help your boys is top priority. Everything you do should be oriented toward that goal. If something doesn't contribute to that goal, skip it. Set a couple of goals for just yourself as well - for example, set a goal to laugh a big belly laugh at least once a day, or to watch 30 minutes of a TV program you like, or something that brings you joy. I have a goal to surround myself with beauty and joy, and if there is something someone wants me to do that doesn't bring beauty and joy, I don't do it. You need to be true to yourself.
How does this fit in with all the pain and aggravation and suffering of this miserable disease? Well, much of it is truly temporary, even though it feels almost permanent, so if you can take deep yoga breaths and get your brain to quit telling you stories about how horrible this disease is and things will never be good again - if you can get your brain slowed down to recognize that your sons are cracking up over some joke they heard at school or are excited about playing on the team or are having trouble with math - then you bring yourself into the present moment, not allowing your brain to fear the future. Can you just say to yourself "gee, I have a rash, it itches a little but not much, so I need to tend to helping Jr. with his math homework right now" or some version of that. Have you done any mindfulness-based training for anxiety or depression or pain? If not, I can recommend some helpful resources; if you HAVE, I can encourage you to get back to the practice. I fall off the wagon all the time, end up suffering and grasping and wanting other, then realize I cannot change the past, don't know what the future brings, so I may as well try to enjoy the NOW. (Sometimes easier said than done!)
Sorry to be so long-winded, but you sound like you need as much love and support and nonjudgmental friends as you can get, so here we are. Sharing experiences, knowledge, support, and love. May you have moments of peace tonight.0 -
Thank Linda I really needed that . My boys are 16 and 7 and they are amazing. My oldest refuses to believe I am sick and my youngest does not get it yet. We try to keep our home life as normal as possible for them. I want them to have normal childhoods. It's not there fault that there mom is damage goods. I would not even know how to break it to my little guy he is so attached to me and very sensitive. My husband and I just came back with the kids from Disney world yesterday. As much pain as I had I walked the whole park and even went on a few rides to make my boys happy. I am paying for it today. But it all was worth it. I just hope that the new Meds are kind to me....
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Carebear it was so comforting to read that you have been on Afinitor for a couple of years. I just increased from 7.5 to 10 mg on Wednesday. So far, the only se was throat sores that have ended by using the marshmellow creme. I am very fortunate to turn 61 today! My son graduates from high school on Saturday and is ready for his next adventure in college at Bowling Green.
Stella, when I had 50 lymph nodes removed and 45 were cancerous in 2007 my son was in the 7th grade. I wasn't sure that I would see the end of 7th grade let alone high school graduation. As a single parent we had to have the discussion of "ifs". That year was a little tough for him (he got b's instead of a's on report card). We always talk openly about where I am with treatment. This last change to Afinitor/Aromasin set me back for a minute and I asked him how he was with the news. He said he figured it was just what I had to do. He has seen me at some physical lows and mental exhaustions. This may have caused him to mature sooner, but he shows empathy towards others, knows the importance of living life to the best of his ability and knows that we can talk about anything ... including death. We do a lot of laughing, take trips, and do all the things that families do. I believe that a normal life is discussing and problem-solving together as a family. When he didn't make the basketball team my heart broke for him. He was sad as well but bounced back and became interested in choir. Resilency is powerful for all of us to have. We can keep bouncing back!
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Tfedders, thank you.. What is marshmellow cream. I want to be prepared...
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Stella, I am concerned that you think of yourself as "damaged goods." I have often felt that way about myself, in fact, most of my life because I had a difficult-to-correct congenital heart defect, multiple surgeries, and now this. But I am learning to love myself because that is necessary in order to love others to the fullest. I have always loved others more than myself, but there was something lacking, and I am pretty sure it was because I thought so poorly of myself. With a lot of help from those who love me and who I love, along with some training in mindfulness and some intense studies in theology, I am beginning a journey to actually appreciate who I am, what I am, and even what I can become, DESPITE the challenges that my body has given me. I am keeping you in my heart tonight, please know that you are NOT damaged goods, it's just your body is giving you a lot of challenges right now, and that YOU ARE STRONG, BRAVE, LOVING, CREATIVE, and any other positive adjective you want to add in here to describe yourself! Hugs.
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tfedders, I see that you are fairly new to BCO - welcome!
Am not posting too much due to LE in dominant hand (sucks big time), afinitor rash not too bad under the bandages, but thinking of all of you and wishing you the best.0
