Afinitor/Aromasin
Comments
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Naturegirl2, so sorry this must be nerve wrecking for you , be assured that you will be in my prayers tonight. I hope it is nothing just a false alarm. God bless you.
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woodylb, thank you. Yes, very nerve wrecking. I'll be leaving in 30 minutes to have my CAT scan.0 -
Good luck nature girl. Hope for the best.
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You are in my prayers, don't worry until you have to, I have lots of jaw pain on and off. Could be stress.
Best
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nails, nails, nails.... uggh. 5 months after starting this stuff, I have few side effects but have just started loosing my nails. they are crumbling and pulling away from the cuticle. i have read what BCO has to say about nails. Has anyone else lost their nalls from this or other chemo. Any advice??? Help.
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woodylb, you are such a compassionate and caring person, I love that about you. You really did help me thru this, thanks so much. Toronto 12, thanks my dear for being so thoughtful as well. Really means a lot to me.Okay, good news! My oncologist called me today to report everything looks fine, no metastasis(ph) to skull, no cancer to brain, no cancer to sinuses and no oral cancer. Hooray, hooray, this has been very stressful to say the least. I am now on anti-inflammatory meds for a while. May be muscular skeletal. I have what is called torus palitinus on the inside of the roof of my mouth. Been there for years. I was probably born with it. I think it is irritated and inflamed. The pain has been going on since January of this year. I did a little research this a.m. and there can be osteonecrosis to that area due to use of bisphosphonates, which Xgeva has. I told my oncol I don't want any more Xgeva shots (had 10 shots thus far) and I'm going to take myself off of the heavy dosages of Calcium and vit D, but rather get from foods. I need relief and I think this may do the trick. We'll see. It's been four months since I had my last Xgeva shot. I think this stays in the system though. Thanks for everyone's concern and caring, much appreciated for sure! Praise The Lord!!!!!!!!!!!!!! That is all I've been doing is praying.
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So glad to hear your good results Naturegirl2
! Thisisme, I am having the same problem with my nails. I have used Krazy glue, taped them because they catch on almost everything and nail hardener with lots of polish. I cut the every day to keep them from catching on things. Anything you find out further would be most welcome.
I am one week back on Affinitor and things seem better this time. Not sure if I am in better shape or my body is more used to the drug. Hoping things go well for awhile. I am back to school full time and hoping to make it through the year. I just wanted one more first day of school !
Best and hugs to all,
TO
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i went to nail spa and they put an acrylic tip (i think that is what it is) on the end and is lots better. they painted on some kind of polish, added a powder and then more polish and now my disintegrating nails look normal and do not catch on things. Seems to be working so will go back and have them do all the nails. MO says nothing to be done for it and definitely treatment related.
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Naturegirl2, yayyyyy for the results i am so happy for you. If xgeva is giving you bad SEs why don't you do Zumeta? Even though it is the same med but it seems to have less side effects except for the few days fatigue after injection. I am still taking a monthly pill till now lolll i am avoinding the use of xgeva and zumeta. Don't stop the calcium and vitD , just don't take high dosage. I take one osteocare pill a day and when my vitD drops i take it in liquid once a week for a month then stop. It seems to work, you will not get what you need from food , not in our case
. Keep up the prayers they help better than the meds and lots of them are heading your way. Hugs. 0 -
I've been away for a bit.....just concentrating on feeling better. Naturegirl, I missed your scare. Happy all is ok. I agree on stopping the Xgeva and pulling back on calcium and D, at least the synthetics. Get out in the sunshine without sunscreen for 20 min a day. Eat more greens. It's much better used in the body, anyway. I wouldn't say this if you continue on bisphosphonates, but if you aren't taking them anymore, and with the other problems you are having, this seems doable, naturally.
I got my new Breville juicer yesterday. Looking forward to getting back to juicing at least once a day......might go for twice. Really want to get my immune system and body working at optimum levels. Still fighting electrolyte issues. Not sure what's causing it. Haven't started BP meds yet because 1. don't want to add more confusing side effects and 2. I want to see if it was a virus/dehydration causing the high BP. I know I may still need to take them, and I will, if need be.
TGIF, my AA friends! (Good thing we all know what AA I'm talking about.....no 12 step here!)
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naturegirl I am so happy for you! Huge high 5!
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I'm new to the on-line chat and don't see any posts in 2014? Maybe I'm not looking in the right place? Anyway, I was diagnosed with stage 4 breast cancer in September of 2010. Have gone through the tamoxifin, fermara and faslodex. All stopped working and was put on the AA combination May of this year (2014). Have gone through the mouth and face, head, body sores (they come and go) fatigue and overall malaise. I just had lab work and scans done 2 weeks ago which showed the liver tumor which had increased by 40% had shrunk drastically as did the 5 lung tumors. Encouraging until this next side effect snuck in the back door, my gluclose level. It seems the Afinitor can do this. I am on the 10 mg dosage. My gluclose went up to 285 and I could not get out of bed. My oncologist has cut me back to every other day for the afinitor and blood work yesterday showed I was down, with fasting blood work, to 225. Not great and I still don't feel great. I will have the blood work drawn again in 2 weeks and I pray it is lower or she adjusts it more as I can tell this fluctuating gluclose is making me crazy! Of course diet and eating is really come into focus but with everything tasting like metal, you would think it easier to not eat. I have lost 10 pounds which is one good side effect! I have found, other than water, carrot juice tates very good but I have to watch it for sugar content. Even 100% organic carrot juice. Walnuts taste good, still, as do my sudden craving for baked beans. An ND suggested zinc lozenges to help with the taste bud issue, seems to be okay. I find the blueberry type zinc lozengers taste best. Some have been too bitter! Trying to think of other helpful solutions I found...oh, things like homemade coleslaw tastes good too...I use to love choclate, ice cream, yogurts but cannot tolerate the yuk taste now. I have been vegeterian for over 40 years so most veggies still taste good to me. Good Luck to everyone, I am having a new symptom too, keeping up my spirits but then again, depression is also listed as a side effect so maybe just knowing that can help us all! Love and Good wishes to everyone!
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Most of the posts are actually 2014 - the heading on the thread was never changed to read "2013/14". I was on AA for a while and it did work but the se's for me were too much so I had to go off of it - blood glucose went flying up and as I had been married to someone who was a diabetic I was already very careful with my diet so they took me off it. Sorry but carrot juice is not something recommended by the dieticians nor are baked beans - do you have a diabetes outpatient clinic near you where you could get a meeting with an RD - I worked here for a few years as a volunteer at the diabetes clinic and made friends with the staff who continue to help me along the way with foods to keep me healthy. Good luck to you and keep posting.
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Hi 208sandy!
Thanks for your response. You say you are now off the AA? Are you doing anything for the tx of your cancer? Did you stop it because of your glucose being too high? Since this blood sugar se is new for me and the oncologist is making me feel it's strictly related to the AA and not diet, the only advice she gave me was to watch diet too and then check back in 2 weeks. I am aware of hidden carbs and sugar and have been reading more about diabetes as that was one thing, right off the bat, the oncologist said to me, that we needed to keep an eye on blood sugar and the potential for diabetes and "we don't want that to complicate your tx" but at that point, she didn't indicate that was a potential side effect of this medicine. Now I know. I will see if I can find a referral for an RD as I live about an hour from the nearest city (I'm in the woods!) or maybe I can find a site online. I have purchased many books concerning cancer diet and now diabetes because of this AA tx. Kinda scary to not know but maybe in 2 weeks, I will have a clearer idea if the reduced dosage is working or even a smaller dose is needed. Still wondering what course of tx you are currently on? Thanks!
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Hi, I just wanted to say that I will probably not get the A/A combo after all, I won't get to find out for sure why until September 15th at my next appt. It could be because I am bipolar, or that my high blood pressure would get even worse, but they said they wanted to review the case with a psychiatrist first, and I have read that the afinitor can cause aggression and personality changes. I found out online that the aromasin I already have been taking for two years can cause high blood pressure on its own. I am taking Valsartan for it but still need to increase it again, and I take in so much caffeine everyday and it is so hard to deal with the crankiness and sleepiness when I try to cut back. I wish I didn't have to wait two weeks to see what the next step is. I was actually getting enthusiastic about trying the A/A, and have no idea how things might otherwise go. That would be really sad if my bipolar illness prevented me from adding years to my life. But we'll see. I am pretty good at not freaking out until I have all the facts. It comes from the cognitive therapy techniques that we bipolar patients get, particularly the question, do I have a crystal ball? Do I need to worry about something that may not happen? Still, this is easier said than done, especially when waiting for scan results and appt.s with the onc.
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Hi Thea,
I wish you peace as you wait to see the next course of TX. waiting is indeed a difficult time that many people do not understand. It's the time between, when no scans are pending and status quo is happening that one feels you can push all of the worry, fear and uncertainty on the back burner. It's waiting for results that brings it all to the front again. I have now substituted my daily cup of coffee with Morning Thunder or another black tea. I cannot believe coffee no longer tastes good, it has always been a favorite in the mornings. Even tea doesn't taste great. I wonder if cutting back, even weaning off some would help you?
I also have been fearful that my oncologist was going to take me off the AA combo (and I wasn't so sure there last week I was going to stop on my own!) but it seems now the reduced dosage may be working. I was 10 mg of the afinitor that had my blood sugar shoot through the roof...now I am taking it every other day and my blood sugar has come down a bit but also I have more energy and am feeling much better. So, don't give up yet...hopefully they can tweak the AA combo to work with a dosage that will work for you...we are each different with different circumstances and tolerances but I think this AA combo may be a hopeful TX that can keep us going to the next best thing comes along! send you all my positive thoughts and wishes and yes, I too try to not worry before one needs to, doesn't always work but it is a worthy goal!
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Hi Diane, I am heartened to hear from you, I am sorry to hear you have been feeling some depression lately. I hope it is not too bad and that it gets better. I feel really moved by your situation, all those side effects and yet so much improvement that it seems worth it. Hooray for losing the ten pounds! Hooray for the shrinking tumours! I noticed that you have been a member here for just over a week, and I say Welcome!
Perhaps they will come up with a way to let me take this combo. I am over 210 pounds, sixty or more of which I have gained since starting meds for bipolar in 2005, so I guess I am probably at particular risk for diabetes. I have been thinking of starting a thread about Diet Coke consumption, a lot of my caffeine comes from there. Not a great idea for someone with bone mets. I am well aware of it being bad for you in general. They say it even causes overeating. and I can believe that. I lost twenty pounds in 2013 over six months by giving up all sugar and artificial sweeteners, which meant no Diet Coke, and I felt great. I have gained it all back and then some since resuming an unhealthy diet. Maybe if I can get the A/A it will be of use in getting back to healthy food with controlling not just my high blood pressure but also blood sugar as an incentive. Unfortunately I keep putting off making friends with vegetables even though I realise how important diet is. I do drink a lot of water, which is good. I prefer it fizzy with a spritz of lime mixed with ginger juice, on ice. It helps when you take in too much caffeine to flush it out with lots of extra water. It makes me feel so much better. Again, it was good to hear from you and I hope your mood improves, hopefully knowing it is a side effect does indeed help.
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Hi to everyone. I joined this post several months back, and then didn't continue posting for a variety of reasons, but have continued to read everyone's ups and downs, but mostly hadn't posted because I've been feeling a little blue and having been very busy. I hope everyone hangs in there and gets the most from this med combo. I was taken off of afinitor 2 weeks ago because of continued lung problems, and also had to have bilateral thoracentesis. They took 1.5 L off my right lung and 500 ml off my left. The pneumonia I had been dealing with was probably the afinitor, but unfortunately my lungs now have mets. Therefore I just started Gemzar and Carboplatin today and hopefully it will knock those buggers to the moon!! The good news is that after being off the med my blood pressure is back to low normal, the rashes and hives are gone, I can once again have a little spice in my food! I'ld gladly put up with the side effects again though for the 9 months I got from the meds. Just continuing the marathon.........My sincerest best wishes to everyone! Kelly
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Hoping the Gemzar/Carbo works for you, Kelly. Let us know how you do. I know that is probably my next line of treatment once the Afinitor finishes it's run.
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Hi Thea,
Depression is better, don't know if it's because the meds have been reduced or I am getting my sea legs back! I think for all of us, once something progresses, be it a new spot, tumor growth or side effect, one becomes weary and those scary dark clouds start to gather. "Quality of Life" phrase starts to creep in again...so I think this is one of the constant struggles we all face, the fine line between hope and hopelessness! Acceptance is hard, gratitude is hard and yet I find I struggle to achieve both. Sometimes I just have to turn on the news to see some of the horrific conditions people are living through, without oncologists, homes etc. and then I pull back and think whoa, okay, I'm so lucky. I'm unhappy because food tastes like crap when some don't have food or clean water! That seems to be some self-therapy that helps me...not all the time, but sometimes!
I guess my emphathy and sympathy still goes out to all of us that, as Einstein said best, "Experience is everything, anything else is just information"...I think I turned to this site as I realized I didn't want to keep talking about my illness to those not sick, and I could tell my friends/family, are weary of asking how I'm doing. Most people want to hear, "fine" but if I start talking blood sugar rising, fear of going off the AA TX because of side effects, well, like yesterday, I could tell my brother asked but I could also tell his phone was crouched between his neck and ear as he was filling his glass with ice that I could hear tumbling into his glass! Wake up call, he's just not THAT interested! So I kinda cut that off and went back to asking him about some ball game he'd gone to see and I could tell all the animation was back in his voice. So, yep, Einstein coined the perfect phrase for this syndrome.
And yes, my previous TX's put about 25 pounds on me (insult to injury) so losing this 10 was great...however, I teased my oncologist about 2 months ago when I started AA and reminded her loss of weight could be a side effect and I sure was looking forward to that to which she replied, "no you don't, you want to keep up your strengthand weight can help sometimes"...which was weird...I hadn't thought of that...I guess if suddenly, with time, I lose 50 pounds etc. I would not be happy about that! So I guess the focus needs to be on remaining healthy through this process. And yes, just our awareness alone to food and what we know is good/bad for our situations is a beginnig. I loved sweets, as does most of my family, I told my Mom the other day I missed a good scoop of Ben & Jerry's Ice cream and how it just tastes so bad! I know some of this weight loss is from this...it's like my mind still craves it but not my mouth! I think my mind is finally catching up though! Slowly I am starting a new habit (which I should have years ago) of not following a meal with something sweet...if I have to, a small handful of walnuts or maybe a small piece of cantelope seems to fit the bill. I would never think that possible but at least they still taste "normal" and not like sweet plastic with dirt!
I hope if the AA TX will help you if you need this next step, and that you can tolerate it and the side effects and it does you good! Like I said, I hope and pray we all get to live long enough to keep seeing new TX's come on the market so we can take some of the load off our shoulders with this struggle and live life as we did pre-cancer which sometimes can be hard enough!
Love and my best wishes to you!~Di
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Hi Kelly,
Wishing you the same positive thoughts with the next TX course! My cough seems to come and go and scans showed the AA, for me, did shrink, somewhat, the new 5 tumors in my lungs. How long that continues, I don't know.
I find it amazing how we are all walking this tightrope of TX's working and then stopping but that it's like suddenly there is a new safety net when we almost give up. It's all we have, to keep our spirits as sturdy and strong as possible with hopes we will keep responding and keep surviving.
All good results your way quickly! And Lord, enjoy the taste of food again for the rest of us!
Love,
Di
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Thanks for the good thoughts Romansma and Di. There truly is a wonderful group of people on this web site. Di, I totally understand what you were saying about about talking to family and friends about my ills. I pretty much try to gloss it over, especially with my husband and mother. I almost think it is harder for them to deal with my cancer than me!! I still haven't told my mom yet about my mets to the lungs because she for one, cannot handle me being ill, and she's got her own things going on. I am going to call her today but I wanted to have a lot of answers before out talk. I hope you all do well on whatever tx you're on!!! Kelly
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Hi Kelly!
Hope your talk with you Mom went well and you both found the support and Love you both need!
All good thoughts!~Di
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Hi all,
I just got great news! I had a brain MRI and a CT scan this week! Just got the news that both were good and showed no cancer!
I just wanted to share my story in case it can help anyone else.
I was diagnosed in July 2011 with Stage IV. Xeloda worked well for almost a year! Then, Tamoxifen got me to NED and worked for another year-ish. Then I switched to Afinitor and Aromasin together. It worked great, got me to NED, but then after 6 months, my tumor markers started rising. My tumor markers have always been reliable and representative of my cancer. My onc and I decided to wait and see because I had PET scans showing NED. Also, I don't ever want to give up on a treatment too soon since the treatment options are finite. Every day a treatment works is another day here with those I love. Still the TM's rose, again and again, with one dip in there. A definite trend upward. I had a few symptoms but nothing major and all could also be side effects of my meds. My onc and I discussed options at length and he felt the cancer was "brewing". I just struggled with switching treatments as I felt that the current Afinitor and Aromasin combo must still be working somewhat for nothing to show on a PET. Even if it was losing effectiveness, I didn't want to give it up because it felt like giving up possible time. After lots of discussion of pros and cons, my onc and I decided to just ADD Faslodex to my current treatment and not to take anything away. I started Faslodex 2 weeks ago...and I hear it can take 4-6 months to start showing lower TM's.
So.....this week I had a brain MRI (just to ease my mind) and a CT scan because of some symptoms of inappropriate "fullness" at times when I eat. They were both clear!! No cancer. Now, I know these aren't as good as a PET at showing tiny cells of cancer starting, but, I am thrilled!! And SOOOOOOOO happy with our decision to stay on Afinitor and Aromasin and just ADD the Faslodex. To me, it is confirmation that the A/A combo must be still working-at least somewhat! And, I'm very very thankful to have a doctor who listens to me and treats people, not numbers. All this = more time! And, isn't that what this awful game is all about?
With this plan, I won't necessarily know which med is actually working, but I also didn't give up anything too early that might still be working to keep the cancer at bay.
Anyway, I just wanted to share my story and hope it may help someone out there wondering if it is time to switch treatments.
Praying for all of us,
Julie
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Hi Julie! Such great news and wisdom! Wisdom that you listened to your gut feeling that it wasn't time to reduce the positive aspects of AA and instead, add to the cocktail. Thank-you for sharing this with us all as something that could potential help others. Because it's true, as you said, it's about extended time for as long as we feel we want and need...what strength it takes to ride this bucking stallion, to hang on tight as we go through scans and wait for results and make life and death decisions! All the while juggling the ups and downs of normal lives that our unsick friends and families do as well. It's so hard to remember that life, sheesh, seems so carefree now! I'm trying to plan my 1st vacation in 4 years and I am so full of fear...can I make the drive, will I be too tired, is it worth the expense if I wind up just staying in a bed-not-my-own because I'm too fatigued to do much else! But, I also want, in an odd way, to distance myself from my cancer...odd, when I'll be taking it with me along with my pill dispenser as a reminder! But I have not been away since my diagnosis and all hell broke loose! I want some physical space between that thought and this one.
So Julie, hurrary, hurray, hurray! You can put your head on your pillow tonight and breathe and sleep a little easier as we each take our steps, alone and together, to living longer lives with more wisdom and gratitude for each tender mercy that comes our way! My onc always says "scans trump tm" so let's rest tonight that this may very well be true!
Love to you and yours,
Di
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Hello Di,
Thanks for the long and lovely answer to my post the other day. I have been checking in but not feeling ready to post, I have been feeling very distracted lately and have been spending much time on the couch. School doesn't start where we are until Thursday and I have been sad that the vacation is coming to an end. I will still see enough of my children but my husband will be back to work starting today and I treasure every moment I can get with him because he works so many hours. Oddly, however, when I am stressed out I lie on the couch instead of spending time with him, where he is cooking in the kitchen or gardening, or what have you. Sometimes I lie on the couch waiting for him to come home, I sort of half doze there and it can go on that way for hours. The kids are used to it, I have been that way a very long time.
I do think you should take a vacation, because even if you find yourself in a bed not your own, feeling sick, it is astounding how fresh and yet familiar your own home seems after you have been away for a while, even just a weekend. Also, going elsewhere expands your mind and also creates memories. Give it some thought, especially if it has been such a long time.
That is all I will say for now, love to all here with a special thank you for all the heart full input.
Love,
Lisa
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Hi Thea and all,
Thank-you, Thea. I am going on that vacation...I hope! At least I've booked a house and a few hotels along the way to break up the drive. My blood sugar levels have not lowered very much even after my onc has me taking the afintor every other day vs. every day. I borrowed a freind's blood sugar monitor and thankfully have been checking every morning before eating in the morning and at night. I sent these numbers to my onc as she has me sceduled for fasting bloodwork tomorrow...I swear, you have to be your own advocate! I don't know why she has waited this long but once I sent her my numbers for the past 2 weeks, she suggested I see my PC doctor to help find a med to put me on to lower the blood sugar! Sheesh, if not, I would not be getting in to see him before this potential vacation! You really have to watch out for yourself! So I have felt a little better, don't know why, but maybe because my body is getting use to the AA combo? The reduced dosage? The loss of 10 pounds? I'm not sure, or just a good moment of my mind clicking in for awhile that I am determined to stay strong. I do, like you Thea, have to nap quite a bit. I am not use to that...I have always been high energy so it's weird to feel like I turned 20 years older in 4 years! But I also know that when I panic, I remember to breathe...just take deep breaths and they seems to calm me. And, I have started back trying to do 15 minutes on my stationary bike as it's brutally hot here and cannot walk. It's all baby steps at a time...but I hope you'll find that the upcoming change with your children and school, husband back to work is more scary as you anticipate it than it will actually be. You may find this is the time to absolutely find any baby steps you can take for yourself, for your journey alone with this drastic change in your life and how you feel. Just every day see if you can find that which makes YOU feel good, whatever that may be! Love to you and all out there finding our way! Love, Di
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Thea, I was 269 lbs last august when I began a/A. My Onc prescribed (MuGard) for mouth sores..I rinses with it for the first few weeks and never had a mouth sore. it kept me ned for 8 months... I lost 95 lbs to date as it killed my stomach ,taste and appitite.... Many folks put the tab in a marshmallow or get empty capsules and take them that way.
However I had NO daily side effects it was so gradule i didnt realize them lol .................. BEST OF LUCK you CAN do this
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Hello to all -
I will be starting on A/A by the end of the week. I have already been on Faslodex, abraxane, and Xeloda. PET scan last week showed that everything is stable but my TMs are wafting up slowly and my Onc thought we should try this and see how it goes.
Seems like there are some pretty nasty side effects. I am going to try and be proactive about as much as I can. I am going to take a pro- biotic and start rinsing my mouth out with baking soda and water. I am already taking Celebrex - sounds like it would be good to continue. Any other thoughts?
Thanks! marian
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Marian,
My onc prescribed me a topical acne medication called clindamycin phosphate topical gel 1%. This helps clear up the acne quickly that you'll most likely get on Affinitor. The mouth sores are the worst and I've used Durham's "Canker-Rid" to clear up canker sores in the mouth. It heals them in a couple days instead of dealing with the pain for a week or longer.
Hope you do well on this. It did take me about 8 months on this to get good results on my scans, so be patient.
Terri
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