Afinitor/Aromasin
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Rosevalley, please vent anytime. We all can relate. I don't have a lot of zits right now but the ones i do get are major. I tried my old high school trick and dabbed a Q-tip with nail polish remover and hit the zits for about 5 seconds. It worked, at least that time. And I would die without Prilosec; I can actually sleep a little better now.
My new issue of the week is edema on my lower legs and my lymphatic right arm. I called today to my Onc. and the nurse was more concerned than I thought they would be and put me on 'lasix' which is essentially a diuretic. We'll see how this issue goes...
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benjnate- Oh Geez I have taken diuretics for years. I would turn into a major water balloon without them. I take maxide and my feet still swell sometimes. Drives me nuts. I love Prilosec too, wilt without it.
Lasix works great, quickly and it is cheap and effective. You can lose potassium, so drink orange juice.
My left arm will swell and I hate the sleeve and refuse to wear it. If it gets too bad (like I can't get my arm through a favorite shirt sleeve on the left) I have to wrap my left arm or manually smooth it out with massage. Usually though just putting it up on pillows is enough to get the swelling down. It's a pain. Worse in warm weather, but what is that -after this winter? I have been freezing for months! I just feel I am so negative..pissy. My apologies.. poopy mood lately. Sorry.
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Sorry, you are having a hard time, Rosevalley. I hope it gets better soon. I am still off Afinitor. I finished rads on Friday, but my counts are really low. Need to give my blood some time to recover before assaulting it again. I really hope I can take it this time without huge problems......otherwise, it's off to IV chemo I go. Just not prepared for that yet.
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Romansma- My counts have not fully recovered. I needed another transfusion week ago Monday. Maybe they could tank you up with a couple of units, so you could begin again? I am glad your radiation treatments are done. Radiation is so hard on a persons body and makes one so fatigued. You must be just wiped out. I hope you can continue with the AA combo.
I will muddle on. This is WAY better than chemo and I know that! So on I go, just like everyone else. It helps to vent and purge frustrations. Hope everyone on AA is having a good day.
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RoseValley,
I'm with you on the venting of SE on A/A. I got to the point of not having mouth sores encasing Affinitor in small marshmallows until my onc doubled the dosage a couple days a week to 10mg. I can not handle that much. Even encasing them, I have canker sores in my mouth & sores on my nose, cheeks, scalp, face, etc. I had to stop to get these to heal b/4 getting back on them. I don't think I'm going to make it on 10mg. & will tell my onc next time I see him. There----that's my vent.
Terri
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I have a question regarding weight loss. I have been a/a since July 2013. I lost almost 40 pounds. Is that normal? I eat 3 meals a day plus snacks I don't understand how I am kissing all this weight. Should drink any type of shakes or anything anyone could recommend.
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Hi Stella, I have been on a/a since August 2013 and have lost 15 lbs. 40 pounds sounds like a lot for 8 months...are you underweight or feel run down? Hmm, I guess feeling run down would be hard to tell on this stuff. I would run it by your doc at your next appt. My family doc (but not my onc) is an advocate of keeping a little weight on while going through the different treatments.
Romansma - hang in there. The rads exhaustion should be dissipating soon. I hope you can do a/a again - for all of our complaining, it does beat the IV chemo. OK, I'm off to brush my teeth and rinse my mouth AGAIN....
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I am going to start on A/A Thursday and I was wondering if anyone could tell me how long before they noticed that it was reducing the tumors. Also how long before the side effects show up? I know everyone is different but was wondering if there is an average on these two things? Any help would be appreciated. I am like everyone and want it to start working the minute I take the pill, but of course I know that does not happen
. I also wondered, because it is pill form if it works slower than IV chemo? Thank you.0 -
jeanieb2, I started a/a in July of 2013 and it was good to me my tumor markers were in the 2000 and it went down to around 200. Also my pets can should a huge improvement in December. But my time with a/a is coming to an end. My markers are jumping a bit so onc will probably switch me to zoloda. It is normal to jump from one med to another with stage 4. Once you start treatment and it will work you will feel more comfortable. So u know I feel great and and that is thank u to A/A my body is back to normal I work everyday and take care of my home. I try to live as normal as possible.
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hi Jeannieb2. My Onc told me any side effects would probably show up around the one month mark. They showed up around day 26, so she was right on.
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Jennieb2- I thought it wasn't too bad the first couple of weeks. I take 10mg every other day. I have had an awful lot of side effects from meds, some from chemo that I have never gotten rid of. So it is hard to sort out. I haven't had any markers or anything done to tell me it's working yet. I would assume it is working, since my counts held steady for almost 2 weeks before dropping slightly. So it must be doing something.
Despite my bitching.. it beats chemo by miles. So maybe I should suck up. The mouth sores don't last that long, just a week for the first 2. The one under my tongue lasted the longest (it hurt) and it's going away.. teeth brushing with baking soda, rinsing washing out your mouth helps. The diarrhea seems to wax and wane. The aching got worse the longer I take it- I am assuming it is the aromasin not the afinitor. My feet and fingers get red and feel odd and itch, hand cream works. Reflux is worse, food repeats especially any thing spicy and tomato based or rich. But I can garden and get out and do some things that I haven't done in months! I am happy about that!
Hope we get to where Stellarov is! Hope you get to stay on the AA.0 -
New to this a/a combo info. I have been on Letrozole for 15 months but now with some progression since Letrozole is failing, my oncol.(saw him yesterday) is recommending Aromasin/Afinitor combo . I'm waiting approval for Afinitor but now after reading at length this thread, along with side effects sheet, I don't want to take Afinitor. My oncol. had suggested 10 mg. I have a call into him as I type for concerns. 1st-I have nodules in both lungs,(have been there since cat scans in Nov. 2012) a tumor progressed there to 8 mm(from 6 mm)from this last cat scans taken last week, along with very small progression of two lymph nodes behind sternum, yes, sternum is affected as well and has been since Nov. 2012, along with a spot on 6th rib that was already there. My cancer antigen level went from 50 two months ago to 56.7, three months ago is was 43.2 and prior to that 46.7. When y'all talk about markers, are you talking about cancer antigen levels?
I'm just recovering from roof of mouth pain after about one month(not known why) using miracle mouth wash from my dentist. And, I didn't have visible mouth sores. So I know first hand, how terrible that feels. Since I have small tumors in my lungs, wondering why my oncol would recommend Afinitor since that drug can present problems with lungs, and mine are already compromised. I am going to ask him with he returns my call if I can just take Aromasin only. Anyone here taking only Aromasin? I'm also thinking, if I do decide to take Afinitor with Aromasin, if he would prescribe 2.5 mg. rather than 10mg as he suggested. I am also taking Xgeva shots every other month.
Any help and info would be appreciated. I'm not one to readily take drugs and like to do the research first which I've been doing since yesterday after I was hit with this information.
Also, what is everyone paying for monthly Afinitor? Thanks again.
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stellaratov - Thank you for the info. I am glad to hear that it worked well for you and I know everyone will move on eventually but it is always good to hear how long of a run people get on it. I took Femara for 2 years, switched to Aromasin for 3 months but they both quit working so switched to Xeloda and got a year alone with that before we added Taxotere along with the Xeloda, then I got a year and a half out of that so I feel very fortunate to have gotten that long. My onco would have kept me on Taxotere as it was keeping things somewhat steady but I had such reactions to it that I only had 10 good days out of the 21 and he said that was not acceptable so we are moving on. I am sure you will do well with the Xeloda, I did have side effects from that but nothing that was terrible.
Romansma - Thank you I will start looking for side effects after about 3 weeks then.
Rosevalley - When you are talking about counts do you mean white counts or tumor markers? I will be sure and keep some Imodium handy at all times, especially if you do not know when it will hit. And, you have every right to bitch, none of this is fun that is for sure and we all have bad days with chemo treatments, some days are just worse than others, I think it is when we are tired and our counts get low, at least that is what seems to happen to me, and when I get dehydrated from chemo. Does this cause anyone to get dehydrated? I always had to go for fluids a week after my Taxotere treatment so was just wondering if I needed to watch for that also? Thanks for your input I appreciate everyone's help, it makes a difference when you have been through it and are talking from experience.
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jeanieb2 - (I was referring to blood counts- hemoglobin. I want to make clear my anemia has nothing to do with this AA combo.) I have been severely anemic since before Christmas, because I suspended treatments took a break from cancerland. The lowest my hemoglobin landed was 5. I think I have had around 16 transfusions so far. Last 2 units were 2 weeks ago. Appointment on Friday to check and see where we are at. I think it must be pretty good since I can garden and haul bags of dog food, kids to appointments etc. So I don't think it has dropped too low. I get tired but not quite in the same way. When your hemoglobin is 5 your heart races around like fish out of water trying to keep up with demand for oxygen. This tired is just achy tired from working around the yard, muscle and bone aches. So maybe my bone marrow has kicked back in. We will see.
Naturegirl - try the AA combo and see what happens. The first 2 mouth sores I got were not too bad. The 3rd one hurt, but it's nearly gone. So at least it isn't constant. I take 10mg every other day. Aromasin every day. I don't know about the lung issues you will have to ask your oncologist. Good luck.
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naturegirl2--Like you, I read this thread thoroughly and did massive research on the web, and my level of concern sky-rocketed. My onc started me off on 10mgs of Afinitor daily along with the aromasin, and I waited for the inevitable problems to follow, but...they never came. The worst I've suffered is really dry skin ( can't wait for spring to put some humidity back into the air).
Before starting A/A, i had decided to go on an extremely low carb diet after reading about Elaine Cantin's experience using it for her breast cancer as well as the new research about low carb coming out from the Univ. of Southern Florida from Dr. D'Agostino (go to TedTalks.com to view his Dec. 2013 presentation about it). I thought if it and A/A together helped give my cancer a "one-two" punch to knock it back a bit, it was worth trying for about 6 weeks. I won't say it's been easy but it has been doable. It's just making yourself eat really clean. A week ago we had a huge family wedding with days of fun, and I went off the diet. The day after eating lots of wedding cake (it is my Achilles heel of desserts), I got my first mouth sore, then another the day after that. I'll being going back on a regular low carb diet because of that. I don't know if this is an angle that would help others on A/A, but it seems to make a difference for me. Also, during the diet my blood pressure normalized and I got rid of some chronic inflammation problems.
I can understand that with your lung issues you would be even more worried than I was about taking A/A, but remember that, like me, you may have a decent experience with it. I get my first major checkup since starting this regimen in early April. I'll post what my results are when I get them.
Good luck to all of us!
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Rosevalley, thanks for you input. So I'm thinking your oncol. cut you down to every other day taking 10 mg? And I'm thinking your low blood count is due to this combo? I noticed you started A/A combo in Jan. of 2014?
FaerieQueen-thank you so much for giving me some positivity, I really do need that. That is great the low carb diet has helped you with the drug combo and good to know! With me, I generally try to refrain from carbs. so hopefully that should help me in taking this combo.
My oncol,. returned my call and addressed my concerns/fears. He told me the A/A meds would not make my lungs worse, only better and that due to my lung problems, I should not have a problem. I asked if there were any of his patients who had similar issues with lungs like me and he said yes and they had no problem. I also asked if any of his patients were hospitalized due to taking this drug for any reason and he said 'no'. I asked if he would lower my dosage from 10 mg. and he said 10 mg is standard dosage. So, after talking with him, I have decided to take the A/A combo. I'm leaving town in a few but, come Monday, (after approval for Afinitor from my health ins., and if the cost is somewhat reasonable) I should be taking my first dosage combo Afinitor/Aromasin combination this coming Monday. Wish me luck. I'll see y'all when I return.
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Naturegirl, I hope the A/A works well for you. I personally have found the combo very tolerable. Mostly very dry skin,mouth. Thinning hair. Can't tolerate spicy things anymore, which is a bummer... I've been on it for a little over 2 months so I don't know how it's working yet. My cost for the afinitor is 60$ for a 3 month supply. I did notice on their website that if one cannot afford it they have a program for 25$/month. Take care!!! Kelly
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I've been on the AA combo for two weeks now and so far so good but only on 5 mg. - onc has had too many problems with patients on 10 mg dose to start so is creeping up to 10 by week 8 - so far so good, taste buds have changed and coffee tastes terrible - I've always had problems with citrus and strawberries so not eating any or any tomato based sauces either - very dry skin and oh yes a form of magic mouthwash put together by an onc at Juravinski Cancer Centre in Hamilton, Ontario to be used before cankers show up - has worked wonders (it's terribly expensive though and not covered by insurance) - I've been eating eating "clean" because nothing else appeals!
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Naturegirl2 - my anemia has NOTHING at all to do with aromasin and afinitor. It is result of suspending treatment/ break for several months and the cancer eating out the bone marrow again. So don't think that my anemia issues are related to this drug combo. I'll fix that to my post above to clarify.
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I am having a very slow time getting on the Afinitor. I developed a severe sore throat after the first dose and it's taken about two weeks to clear up. Started with 10 mg every other day, now down to Mon and Fri. Have a call in to the Onc to see if I should wait til Mon for today's dose.
I'm just gargling with soda and salt, waiting for healing. Tiresome.
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Rosevalley - Thanks for clearing that up about the blood counts. I was just wondering. I saw the onco yesterday, started on the A/A today and will see him again on April 10 and do blood work then, so I was just kind of wondering if he should be doing it before then but that clears it up for me. I am glad to hear you are feeling a little better and able to do some things, it is certainly no fun when you want to do something and while you are sitting in the chair you are sure you are able to do anything until you get up and then have to sit back down, very frustrating. I hope I have good results with this combo but only time will tell.
Thanks to everyone that leaves feedback on here it helps us "newbies".
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Jeanieb2 - I really felt badly when I realized that some of you might think my low H&H was from the A&A combo. Yikes! It didn't have anything to do with it. So I wanted to make that clear.
I had my appointment and my hemoglobin is over 10! It didn't drop. My platelets were up and alkaline phosphatase was normal. So that's really good news that AA is working and my bone marrow is back in production. That nasty ulcer under my tongue is gone and I will continue with the afinitor 10mg every other day, aromasin every day. Here is wishing you all success with these drugs!
Jimmiebell- sorry for such a hard start! I hope once your body gets used to it that it proves more tolerable. It seems taking the afinitor every day is really hard on folks. Maybe "too much drug in the system" to quote my oncologist. So the every other day seems to hit the mark. Everyone metabolizes drugs differently and that accounts for the huge variety in reactions. Hope they find the dose you can tolerate! Vent here any time! (((hugs))))
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My onc started me two and a half weeks ago on 5 mg a day - works very well - so far no horrible se's - they are checking me every two weeks - she is keeping me on 5 mgs for the next two weeks and then will up the dose - I am trying to convince her that 7.5 is as high as I am willing to go, I am very "drug sensitive" and I don't see any reason to be miserable but perhaps if I am on the 7.5 for a while and my system gets used to it then 10 will be doable.
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I'm thinking I may have to push for the 5 mg. Seems like after a few months the SEs taper off for many, but I'm having trouble even getting started!
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Hi,
Catesmom, thank you. Good to hear the A/A combo is very tolerable for you. Gives us newbies hope and makes me not so scared about taking these meds. Thanks for the heads up on cost of Afinitor.
208sandy, sounds good you are on the A/A combo for 2 weeks and so far so good for you. That is great! What do you mean by eating 'clean'?
Rosevally, thanks for clearing up the anemia issues for us.
When I talked with my oncol. late Wed. he said he wants to start me with 10 mg. of Afinitor as that is standard and he could just adjust it if I have problems as I asked him to possibly give me 5 mg or 7.5 mg of Afinitor. He was not in for that.
Tonight, after I got back in from out of town, I decided to take my first Aromasin(Exemestane - generic) pill tonight. I am waiting for my Afinitor prescription to be shipped Monday and will arrive this Tuesday. No one told me to take the Aromasin alone but I decided to since I am having pain in my breastbone area where the cancer is and I know the Letrozole(Femara) is not working and didn't want to wait till Tuesday to take both. I did read on this thread people started taking Armomasin and segwayed(ph) in to taking Afinitor.0 -
Naturegirl2 - I am sorry to hear you have sternal pain from the cancer. I had that in November and it hurt so much! Hope you have pain meds. You have my sympathy. Glad you started the aromasin, get that on board and add the afinitor. I hope you can tolerate it and just think it might be ok for you! Look at Catesmom. She seems just fine on it.
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Naturegirl - eating "clean" for me is just no processed foods - lots of veggies, fish, chicken, eggs very little (if any red meat) find it really hard to tolerate now - just mostly homemade foods because I feel better on them. As for the Aromasin go ahead and take it - my onc put me on it for thirty days till she got me my Afinitor - can only help. Hope the 10 mgs. works for you and if it doesn't then INSIST that they drop the dose. Hugs, S.
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Rosevalley, thanks, yep, I had the sternal/breastbone pain for 11 months before I was diagnosed with Stage IV, was misdiagnosed prior to that. Yes, it hurts very much. Just last week I started with that once again, on and off(pain not as bad as previously,) and had already had an appt. scheduled with my oncol. for cat scan results and cancer antigen results last week. At that point, my oncol. said to drop Letrozole and switch to the A/A combo. My oncol. early on prescribed vicodin 325. mg but I'm afraid to take it with taking a new drug at this time (Aromasin). Waiting for the Afinitor to come in Tuesday. What pain pills do you take? Yes, Catesmom is offering positivity and that I need right about now.
Sandy, thanks for the definition of 'clean' food. Glad I started my first Aromasin last night. I had a bad night though and a little burning in my throat temporarily . I did drink plenty of water thru the night. And yes, I'm going to remember that 10 mg drop if things get hairy.
Anyone taking Xgeva shots along with the A/A combo?
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Naturegirl2- My PCP gave me Percocet back in November and it helped. Geez it was miserable. Don't worry about taking it with the aromasin, should be fine. Your liver labs are normal? Just watch how much Tylenol you take in a day. When you have sternal pain it's hard to move and be comfortable, so take your relief!
Remember with any side effects what you experience might be tolerable to you. Some other person the SE would drive them nuts. Everyone seems to report the mouth sores come and go. So at least it isn't constant. The zit break out I cured with hot compresses and antibiotic cream. The achy feeling is most likely AI's and the aromasin, but that isn't constant either. I think if I had a throat that was raw and full of ulcers I would quit, but that seems to be an exception and maybe dose related? So I wish you success with it. My oncologist says he prescribes the afinitor every other day because daily causes too many side effects. So far 10mg every other day is working.
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I started A/A on Friday and also started a journal so that I could write anything down that seemed unusual or how I felt. Of course I do not expect to have anything come up for a few weeks as I know it can take some time before the pills take effect. I decided to keep a journal when I started Taxotere and it helped me a lot whenever I thought something seemed out of the ordinary, that way I could look back to see if it happened before or if it was in fact a new SE. I am optimistic that this one will be easier, at least I am hoping it is easier than the Tax was but we shall see, I may think differently in a week or two
. I am thankful to this site for all of the posts. It is nice to know I have a place to look anytime day or night to read what others have done to help with SE or how well they are doing on this combo.0
