Afinitor/Aromasin
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Yes, my blood pressure is rising and heart rate too. Seems to be the Affinitor as this has never been an issue in the past. I am going back in 2 weeks for another check and may need to start blood pressure meds if still rising.
I have been experiencing awful headaches, as well. Nauseating, at times. 3 Aleve seems to do wonders. Prednisone definitely works too, but I've taken 3 courses over the last several months for other issues and need to give it a break. The weight gain from that has been very unpleasant! I do find that the Aleve or even prednisone relieves so much of the inflammation that seems to be in overdrive throughout my body. I wish I could pinpoint what is causing it, Afinitor, Aromasin, or even the radiation that I had recently. MO seems to think it's the Aromasin that is being made more effective by the Afinitor. For now, I'm taking 2 Aleve twice a day for inflammation, along with the Vicodin for the bone pain. Seems to be helping. I slept for 9 hours last night. That hasn't happened in forever! 6 hours max has been the routine for quite some time because of pain. I'm encouraged that the ramp up in pain over the last couple of months may not be the cancer itself, but wide spread inflammation. Anyone doing massage or acupuncture to relive pain and inflammation?
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Interesting to see what effects this combo has on folks. I too have had some whopper headaches.. percocet headaches that last darn near the whole day. I keep thinking it's allergies but it might be migraines. Don't know. They are intense relentless headaches got to say.
The drugs jack up my BP. Lately I have had issues with on and off runs of what I think are afib. They don't last that long. I had one last night sudden fluttering, shimmy sensation - heart racing. I used my BP cuff to check and got 94/65 heart rate 146. Makes a person woosey.. these sudden drops in BP and heart rate nearly 150. Heart rate too weird to count. I usually feel like coughing and sometimes that resets and I get back to my normal 100 heart rate. I definitely think it's the drugs.
I have decided that I will drop the afinitor and just take the aromasin until I see the onc on the 20th. I want to know if aromasin would be enough on it's own to keep the bone mets stable. I'll know if my hemoglobin drops that it isn't working. You can't go by aches and pains and fatigue because the aromasin causes those too. We are just SOL.. cancer sucks. The last time I really felt "good" was December 2006. That's pathetic. My kid graduates from high school tomorrow and that's another check off my bucket list!! Guess that's good.
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Romansma, I have had a massage every week or two for almost four years. It helps me tremendously. In the last month the masseuse included Reikki which is just the "laying on of hands." Scipts in San Diego is teaching some of their RNs to do Reikki.
I also have a personal trainer who comes to my house. We do a lot of stretching and weights. It's amazing how much better I feel by the time she leaves. So far I don't have the bone mets pain that you do.
I've been off Affinitor for two weeks, but I still have that overwhelming feeling of fatigue. I'm hoping that this isn't the new normal. I'll start Faslodex on Monday.
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Hi, jnh,
I have been on the A/A combo since mid-January and on blood pressure meds for over a decade. For most of that time I was on a combo of ACE inhibitor & beta blocker. I research breast cancer news on the internet most every evening. Last year, I read about research on ACE inhibitors and their long-term use having a link to a much higher rate of breast cancer in women. I showed the research article to my PCP, and he took that part of my blood pressure med out of my regimen and increased my beta blocker dose to its maximum. I went on a very low carb, anti-cancer diet when I started A/A and lost 25 lbs (I really needed to), and my blood pressure dropped beautifully. As time went on, I added more carbs back to my diet and stopped losing weight. I had lost 2 dress sizes by then, started having the A/A nosebleed side effect, and my blood pressure was rising substantially. A friend of mine retired and a group of us snapped some photos. I was shocked to see how swollen my face looked compared to other people in the pictures. I went back to doing research and discovered what I had was probably angioedema, a possible side effect of A/A that can come on even a few months after starting treatment. But guess what! I also discovered that beta blockers mixed with A/A can compound the problem and make it a serious issue, especially if the airways decide to swell. As it turns out, beta blockers should not be taken while on Afinitor. Last week, my PCP took me off the beta blocker and moved me on to another anti-hypertensive. The nosebleeds stopped immediately . Also, with the bloodwork he did, we discovered that my triglycerides had gone through the roof, once again thanks to Afinitor. I'm back on my very low carb diet and if after a month they have not come down substantially, I have to go on a statin. Thanks once again to research, I've discovered that there are some popular statins that cannot be taken with Afinitor. I'll be informing my PCP about that, too.
Bottom line, everyone, doctors are unaware of these drug interactions because Afinitor is so new, so we have to do the legwork for them to protect ourselves.
Best of luck to all of us!
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Thanks for the heads up. My face looks swollen, but I attributed it to the steroids. I've also had nosebleeds off and on. It's a powerful drug.
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Good Morning Ladies (from east coast USA) - I had my PET/CT yesterday and saw my Onc afterwards to review results. After 11 months on this stuff, I'm done. The tumors in the liver have come back a little and are just playing around - same place, same size as a year ago, etc. But the S/E are just awful - can't walk well with edema in ankles and legs, lymphedema came back in right arm and is h-u-g-e, etc. So I have surgery scheduled in two weeks with a liver oncologist/surgeon to have the buggers cut out or burned out. We'll see what happens then.
Anyway, I have 3 weeks of Afinitor left and will gladly mail to anyone with a huge co-pay who I could help out. Just PM me your address and I'll mail them out this weekend. That would be about $7,000 if I threw them away and I just can't do that!
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More questions about Afinitor. Day three on Afinitor and so far it has been smooth. The only problem other than fatigue is leg cramps at night. I have been up each night walking around until they go away. If you have had an issue with this, did you find anything to prevent them. I take calcium with D because I also get Xgeva monthly. I admit I am pushing way to hard; we just sold our home, need to move in six weeks but don't know where we're going and have looked at six places yesterday and today besides working a garage sale yesterday and today. If I sit down, I go to sleep. Any advice appreciated.
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My advice would be to get some help! I don't know about the leg cramps, but this drug combo is powerful and just because we aren't hooked up to an IV and don't lose our hair doesn't mean we can do all the things we used to do. Be gentle on yourself and get some rest. What you are doing would be over the top for a healthy person.
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hi RoseValley, congratulations on your child's graduation! I just made it out to West Virginia to see my brother graduate from college! So I understand the check on the bucket list! I also am on Afinator and exemestane. My MO just took me off the afinator (THANK YOU JESUS) because the SE's were worrisome. I hear you about not knowing what's going on with our bodies! No one can tell what's "normal" anymore. Don't know if the chemo pill is causing the SE's or is it the cancer or is it some other medical problem that might need to be diagnosed! I mean it's so dang frustrating. I was put on the Afinator for new mets to the lung while in Femara and Xgeva for my already known mets to all different bones. My body only made it 3 months on afinator before the dr said to come off for a few weeks until we can figure out what's happening. I too like you have been getting palpitations in the heart. Irregular heart rates, shortness of breath, water retention, rapid weight gain, & serious fatigue! Dr thought maybe a blood clot, but cheat CT & ultrasound was negative thankfully, so now next week I start her investigation...trying to find out if these are SE's from the 10mg afinator or a heart problem or my small lung tumors doing something.
so anxious. I'm waiting for my routine two month PET next Monday, along with an echo cardio gram, then Wednesday labs, a lung function test and consult again w a lung onc. And then I WAIT for all the results...find out June 28th. Going to see if she puts me back on the Afinator or am I starting something new. That scares me if I lost a treatment option only 3 months in...as much as I dislike that pill, I don't want to lose that option. Has your MO mentioned anything about screening for your heart symptoms or not yet? Also that pill gave my GIANT cystic acne on my face and back. Loaded! Yuck! And I also got the itchy feeling all over my skin and mostly scalp. So I agree also with Romansma...it's strong medicine...just because our hair doesn't fall out doesn't mean it's not chemo! And man does it affect the quality if life. I wish us all continued strength, courage and hope for the sweet sound of good news!!
Xo
Ps..I don't post often, it feels safe here to know you all are really listening and you really "get it"
Unlike friends who mean well and family members who can't understand the strange feeling to not feel like ourselves anymore. I may look the same (well minus the severe cystic acne, head ticks from trying not to scratch my head, coughing upon exertion and swollen halo face and puffy body..)
but I don't feel the same. I haven't felt like the Dana Marie I was since 2003. Before BC! It's all about finding a way to be comfortable through it all, thankful through it all for another day and at peace with the changes. I guess? 
Hugs for everyone!
Oh yes...one more thing...
You have to see your dr obviously but I asked the same question to my dr...I asked if my Aromasin would be strong enough to keep my mets stable until we can find out what's going on with my SE's...she said yes. For now..I'll be off the afinator about a month probably until I have all the results. So if your body is telling you "something's not right" then come off and take the coverage of the the aromasin. But call them first and tell them your symptoms. Good luck and feel better! I can tell you it's been about a week off the afinator and I FEEL Way better!!! Sometimes a break is good for the body. I never understood why chemo pill patients never get breaks in between treatments?
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Hi Dana! Just wondering, after a week off, are you getting any relief from the fluid retention? I am trying to figure out if the tingling in my arms, hands, feet and legs is from the fluid retention or something else (I have extensive spinal mets). I have gained quite a lot on this combo and my face and arms are puffy, along with climbing blood pressure. Having my thyroid checked next week. I had radiation to my neck in January, so maybe that's it. Who knows! Hopefully, some answers soon!
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Thanks Julie, I have noticed that my resting pulse is higher- about 100 and sometimes it gets a bit irregular and I have ringing in my ears. I have had so many weird things at one time or another ( swollen lower arm and hand, veins popping out, weird cough that comes and goes, ringing ears, etc.) not to mention all the skin issues that now I just go to bed and hope I wake up in the morning. I am feeling better though- now I seem to have one day with some energy for work and friends and the next day I am tired. Need to learn how to pace. Hoping it will get better for everyone and glad to hear that it worked for a year for you! That is great!
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Dana and Toronto - I hear you. The swelling in my hands, face and feet is just amazing. I can't wear my rings. I can't wear anything other then flip flops and clogs. My feet are that swollen! The onc gave me lasix but I can't take it every day, BP drops and my heart rate takes off 133 this afternoon. My BP is either high or really low. So I decided to ask for a cardiology appointment. All I want out of this appointment is to get the fluid off my feet. The nerve damage from the Taxol is just made so much worse by the edema. It makes the nerves in my feet just shriek.. keeps me up at night, makes me crazy. What ever will turn it off, I am willing to try. My toes feel like there are little balls of cotton under them they are so swollen. My left arm that is proned to swelling is more so as well. This is miserable. I stopped the afinitor in May. So does aromasin cause this? I had tinnitus with arimidex and a little with aromasin. But I have terrible tinnitus (started 2003) all the time anyway, so what's a little more? The fatigue and feeling winded.. oh well same old, same old. The thing I worry about is just getting another set of side effects from cardiology meds, to add to the set I already have with the oncology meds.. great.. : ( May we all have fortitude.. ugh.
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Rosevalley - when in May did you stop the Afinitor? I stopped it about six weeks ago and it took about a month to get my body back into harmony and now my energy is up too which is a godsend, I did, however, stop the aromasin at the same time - I have a very bad history with AIs - so far I have failed Femera and Arimidex and Aromasin and am getting ready (if scans permit) to go on Faslodex - I must admit I didn't have a lot of swelling but I am being treated for high bp and a-fib and have been for a long time - hope you get an appointment soon - I hate that you're feeling so miserable. Sending hugs, S.
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Sandy: During the day I am fine mostly, because the feet swelling goes down when I sleep. Then by the afternoon my feet blow up nd the nerves start squawking.. and by bed time I am unhappy. I take pain meds to shut up my feet. I would never get to sleep with out them. I stopped the afinitor the last week of May. Still have a little. The pharmacy called to renew. I would like to see what my H&H is after 20 days of not taking it. If it drops - then back on. I know it's a crap shot but how do you tell if aromasin is enough, if you don't stop the other drug and see if it does the trick? Wish I had a tumor marker from March to compare with next visit but my oncologist doesn't order them or talk about that. So I am SOL. The weird heart rate and rhythm thing is very random.. thankfully!! If this was all afinitor I would think the swelling would have improved by now, 11 days with out it. That has not happened so it's either some heart failure getting worse or aromasin. We will see what a cardiologist has to say about the swelling.. fingers crossed. I am so glad you are feeling better and your energy is up! I flunked Arimidex too - horrible drug. Good luck with faslodex. It's easier then afinitor for sure. Pop in and tell us how you are doing.
Just an observation. I have this nasty huge mole on my left shoulder/neck. It's a typical old person's mole, large, funky bumpy and it used to be black. I have had a dermatologist check it out and no one was concerned. Since I have taken the A&A combo it has completely changed color! It is now brown, less bumpy and some of it has even turned smooth. Most odd. I have had lots of radiation to that side of my body and in 08 had a stage 0 melanoma taken off my right knee with margins. So I don't know if afinitor has any effect on moles but it surely has on this one! It looks much better.
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Sandy - You'll be happy to know I see the cardiologist Tuesday. Got the referral today. I hope to get relief from the edema and some answers. I am a little surprised at who they are sending me to since he's listed as a cardio thoracic surgeon.. hmm. Not sure what I think about that. More games no doubt. We will see if I go. Clearly I do not need to see a surgeon. I hate my PCP. Time to change.
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Rosevalley - glad you're getting to see a cardio - it could make all the difference in how you're feeling. As a matter of fact my PCP told me today that in September she wants me at the cardio again (it's been a couple of years) because she wants me on a new med for my a-fib. Why do our lives seem to be just one giant drs. appointment?
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It seems like it's one giant doctors appointment because it is nothing but appointments! For life... : (
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Hi Ladies!
I just had my monthly check-up, blood draw and Zometa infusion. My tumor markers jumped 120 points. From 240something to 360something in one month. I'll be getting scans again July 3. I've been on the A/A combo since Sept and the markers were 30something back then. I know they're not the be all/end all, but wouldn't they level off? Or go down? Doc said they will reassess after scans. And I'm doing a lot of alternative therapies too. Kinda takes the wind out of my sails...
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Skylotus ; I am sorry that your numbers have been rising. Wait and see what the scans have to tell you before you jump to conclusions.
Have you asked about the alternative therapies and what they might effect in your treatment? I wish you clear scans!
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thanks Rosevalley, it's a game of cat and mouse, and...wait and see... ;-)
A lesson in patience, with no quick fix.
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Skylotus - such true words! All of stage 4 is a lesson in patience, no fix and cancer cat chasing a little mouse (us!) !!
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Take heart, skylotus. In April I had an onc. appt. to check how I was doing on A/A. My CEA was up. That was how we found out I had failed Faslodex last December: rising CEA + scan showing progression = going on A/A. So, quickly in April, I had another scan. Imagine my surprise when it showed pretty good regression! So it is indeed possible to have rising markers matched with good news. Maybe cancer cell die-off skews the results. Here's hoping you get only good news!
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Hoping for good news for you! Fingers, toes and eyes crossed.
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Not feeling well at all the last few days. Hard to describe. Feels like a low grade fever, lots of aches especially in shoulder area. Neck hurts, even too touch the outside of it. Throat feels like I was screaming too much the night before, if that makes sense. Not much of a cough, unless I try to raise my voice. Hoping it's a virus, but no one else has been sick. Any ideas?
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Yes, I have an idea - get to emerg!!!!! You need to have yourself checked out for pneumonia - honestly, these drugs are not to be toyed with. I've had pneumonia twice in my life and the harbinger was a stiff neck the week before - the shoulders aching also concern me and then there's the fever - you need to be looked at - now that it's Monday can you at least get to your PCP or oncs office - don't delay. Sending hugs, S.
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I have been taking 10 mg. of Afinitor for ten days. Within two days of starting the medicine I developed the mouth sores common to many of you. I have been using Mary's Magic Mouthwash, salt water rinses and brushing often. I also use Biotine gel at bedtime. None of the sores have improved and with one in the middle of my lower lip and another on the underside of my tongue eating anything is very painful.. The other sores seem to be tolerable. I have been coating the pill with yogurt. I see my MO on Friday but wonder if there is anything else I can do until then. If you found anything that I haven't mentioned, I would appreciate hearing about it. Thanks.
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Crone,
I also got horrible multiple mouth sores on Affinitor. I found Canker-Rid on line that will help eliminate sores within a couple days & also immediately relieve pain. It's from honey bees and dries quickly. Just dry area in mouth & put on some drops from your finger quickly as it dries quickly. You can google canker rid & order online. It's around $19.
Hope this works for you.
Terri
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Thanks Sandy. Going in tomorrow morning. Didn't take the Afinitor Sunday night because I was feeling so yuck.
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Romansma - hope you're feeling a little better - please post and let us know what the dr says. Hugs, S.
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Thanks For the suggestion Teri. Just sent DH to drug store to get some. MO wants me to stop Afinitor until I see her Friday but I would prefer not to do that if Canker Rid works.
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