Afinitor/Aromasin
Comments
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Sandy, I'm so sorry this has been so hard on you. We are going on vacation to the Keys next week and I'm actually thinking of stopping for the trip. Honestly, I don't remember chemo being this tough. I hope that you and your MO can figure out something better.
I just figured out that Canker-Rid is available from Amazon. I hope it works on me like it has on you, Terri. I was afraid it wouldn't get here in time for our trip.
Rosevalley, You probably already know that one of the dangerous side effects of A/A is damage to the lungs. I'm worried about you.
Gentle hugs, MaryAnne
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Chemo wasn't this tough and I intend to let my mo know that tomorrow! Honestly, what are they thinking - I was never warned it would be like this or I wouldn't have put my body through it - I am quite worried about my lungs also. Hope you have a great trip.
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Sandy I have been there. I am so sorry. Arimidex did that to me.. I ached so badly and could hardly move, that I finally threw in the towel and quit. It felt like some one put ground glass in my joints.. unending pain. So what you are doing doesn't sound crazy to me. I get it. QOL is the name of the game and when there isn't any, then why bother trying to live to experience more days of misery? Just to say you lived..hmm Personally I have always thought that was an insane line of thinking.
The lung thing on Afinitor is weird. I mean I have allergies. So I wonder if this cough is related. But it hurts/ feels tight to take a deep breath and when I do I feel the need to cough. I have had coughing jags that have nearly made me throw up. Not too many of those. My Onc didn't seem concerned because I told them last time I was in. I also have some mild heart failure and that can cause issues.. too many possibilities. Maybe this is why I am not sure it's afinitor. I have mild anemia maybe that contributes to the feeling short of breath with activity. The problem with being older with other health issues AND cancer.. geez where does one thing start and something else end? It's a problem. Blaming it all on the drug might not be true. Of course you can stop it and see what happens. I knew all my joint pain, movement issues and sleeplessness was caused by arimidex because I felt so much better a couple of months after stopping it. I could walk and move and I didn't hurt all the time. Yay.
I wish you luck tomorrow finding something more tolerable. I'll be thinking of you. Stop back on the A&A thread and tell us how you are. Take care.
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Naturelover....be sure to use frozen fruit.....the cold really helps get it down. I had a hard time drinking water...even swallowing my own saliva. But the frozen smoothie seemed to numb it a bit and a little easier to swallow.
Sorry to hear you aren't doing well, Sandy. I hope you find something that is a bit easier on you. This A/A is no walk in the park. We look normal....well, except for the zit face, but the weakness, fatique and aching is substantial. I say this because I dont think my family and friends realize how much weaker I am. On chemo, they get it because you are bald. BUT, I'm in no hurry for that so I will keep trying to find ways to deal. Naps....get to bed earlier....quit trying to accomplish so many things each day.....
Anyone know if there are any supplements, or even prescriptions that can help with the fatique and weakness? I suspect a lot of it is from falling blood counts, but I don't know that for sure.
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I don't know what causes the extreme weakness and fatigue but I do know that oncs don't like us to take any kind of supplements while under treatment because they are literally trying to break down the system to kill the cancer - supplements build things up. I'll let you know what's next but I'll stick around to visit anyway.
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My onc said to stop the pills right away (good call - I stopped them yesterday) - she wants me off everything for a month and is trying to get me into a trial (cannot for the life of me remember the med) anyway she says the Cancer Clinin at Juravinsky has lots of people on A/A and that some have been on the 10 mg. dose for over a year - I say more power to them! Anway I am starting to feel better but still so exhausted I could go to sleep right here, right now.
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Romansmom, My MO said some of his patients do well on Ritalin to help with fatigue. I din't go for it because it can also raise anxiety which I was having a problem with because of another med I was taking. I can't remember what it was.
I've been taking Celebrex and Cymbalta for a couple years. Yesterday I forgot to take it and when I went to bed I was in a lot of pain. I then realized what was wrong and finally got to sleep about midnight.
Sandy, Good luck with finding a trial. It's hard to believe there are many ladies with minor side effects.
Rosevalley, I know what you mean about QOL. With mouth sores, fatigue and pain, I was about ready to say "Is it really worth living like this?" I'm better today.
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My PCP mentioned Ritalin but my MO said "no way" because of my elelvated BP which was further elevated by the A/A - if your bp is low or normal Ritalin seems like a good idea to me.
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My MO has mentioned Ritalin before, but I am very reluctant to add drugs like these to the mix. Might have to rethink that. I take Vicodin 3-4 times a day for pain, but since my radiation to my upper spine, my arms and hands are killing me! They ache constantly, and when I sit or lay down, they go pins and needles on me. My Rad Onc mentioned Lyrica or Cymbalta, but I didn't want to start anymore new drugs until I knew what SE I was dealing with on the A/A combo. The Vicodin helps, but about 5 hours in I start watching the clock till I can take more because the aching gets so bad. I need it for my back and hips too, but that doesn't usually start screaming at me until about 8 hours in....so....will need to talk with MO next week when I see her.
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Romansma , lyrca and cymbalta are used for neuropathy they do numb the senses but on a neurological level not bones. I hope that you find something to relieve your pain.
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Romansma - be careful on the Lyrica - it can make you sleepy as well and you're trying to get your energy level up. I
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Yes, I was worried about the sleepy part. I need to figure something out, seems to be getting worse. I get so,frustrated.....I want to do so many things but this body isn't cooperating lately!
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Anyone dealing with awful headaches on this combo. Yesterday was terrible. My head was pounding so bad....nothing helped. I took Norco....sinus meds.....aspirin.....drank a gallon of water.......no relief for 14 hours. I decided not to take the Afinitor last night, in case it was the culprit. No headache today, so I will take Afinitor tonight.....hope it was something else.
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Oh yes, I did have the headaches every single day for the last two weeks I was on it.
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I don't know why but every once in a while after taking A&A the next day I just feel queasy all day. Nothing agrees with me. Food an drink sits like a big cement block in my gut making me feel queasy. I have zofran.. but that gives me a head ache.. ackk trade one for another. I am bitching.. sorry. just feel crummy.
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Hope you feel better, Rosevalley. Complain away......totally get it!
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Hi All!!
My mouth sores got so bad that I had to go to the onc's office a week early. The NP looked in my mouth and she said I had a mouthful of sores. She wanted to take me off affinitor but I told her I wanted to stay on it for another week at least!
The next morning the office called and the nurse told me that my MO wanted me to get off the affinitor!! I had lost 4 lbs. and totally couldn't eat anything! All I could do for days was to sip soup or tea and water. I think he will put me back on the affinitor when I see him next week if my CA 27-29 has gone down since last month!
I feel strongly that most everyone on this combo is doing well on it so I'm so happy for all of you that are able to tolerate it!
Love you all!!! Think of you everyday!! I love this thread!!
Judy
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Naturelover - get a script for Magic Mouthwash - seriously it will get rid of the mouth sores right away - it worked for me like a charm - however, I am off the A/A combo the crushing weakness (I was unable to get off the couch or the bed for the last week) was more than I could stand - too early for a scan so I have no idea if my six weeks on it did any good - have to wait for a month before I start anymore treatment - onc wants me to rest as does my PCP - I lost five pounds in the last two weeks on it as I lost my appetite and a week later it is still missing.
Good luck to you, sending a hug, S.0 -
Judy, sure hope you feel better soon. Take the break. I got the ulcers really bad in my throat and esophagus. I lost 7lbs because I couldn't eat. I took a 3 week break and I'm back on for about 6 weeks now. Not a single mouth sore so far (knock on wood). Don't know why, but I will take it! I do take probiotics (I get them at Costco) and I bury the pill in a teaspoon of Activia yogurt every night. The idea of marshmallow cream makes me shudder! I don't know if it's working, but I see my MO this morning. We will see if my tumor markers are doing anything. They have never been a good indicator for me, but who knows, they might start working. I will be talking to her about the nerve pain in my shoulders, arms, and hands. My left hand has starting shaking in the last week. I don't think this has anything to do with this combo. It's either the rads I took, or a tumor growing on the nerve.
We don't talk much about the effects of the Aromason, but I'm feeling it, big time. So stiff, everywhere. For about an hour in the morning, my hands don't work very well. My fingers are so stiff, I can't open a pill bottle or get them around my coffee cup. I often wonder about the pain I feel....whether it's the effects of the AI or if it's the cancer growing. So hard to tell.
It's sunny and beautiful here on the central coast of California today. I intend to enjoy it a bit today between doctor appointments and my mom duties!
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Sandy, I tried the Magic Mouthwash and I nearly passed out; I had to hold on to the counter top when I took it! It set my mouth sores on fire. It did feel better after the burning stopped, however. Now I'm on the mouthwash with lidocaine in it! It numbs my entire mouth and then I can eat/drink. They also prescribed 15ml of a pain elixir and that has helped a lot.
Romansma, thanks also for your comments!! I am enjoying the rest from the affinitor! I will certainly try your suggestions of the probiotics from Costco and the Activia yogurt! Thanks so much for your encouragement!! I think your attitude about enjoying the beautiful outdoors is a great one! I'm w you: we don't know where all these aches and pains come from--the drugs or the disease. I'm 66 now so I should be having my share of arthritis but I can't tell when it is arthritis. Oh, I am encouraged to know that you have been back on Affinitor for 6 wks. and no mouth sores! I so hope you never have them again! They are terrible!
We just have to keep trying to hang on w whatever we are dealt, right?? Our children want and need us here! I just went to an attorney and drafted my will. I have to edit it today. I don't have that much to leave but I want my children to have it! I am so proud of them. They all have their degrees now and 2 of the three have great jobs. My oldest son is applying to be a secondary math teacher; I really think he would enjoy being a lawyer more and if he's accepted into law school--three years and he is ready to take his exam, correct? I am happy w whatever they decide to do but I think they should love their career!
I do hate this disease but I think it should leave mothers with young children (still at home, etc.) alone and young people who are just getting started in life!! I am old enough and have had a lot of joy in my life; I have twin grandchildren who are four now! I would love to see them grow up but somehow I don't want to complain about that or think about it!!!
Have a great day!! There's nothing healthier for us than to get outside and enjoy nature!!
Judy
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Waiting for my Xgeva injection now. Blood work is all fine...red and white still low but not trending down. Going to try a new schedule for pain meds and see if that helps. MO thinks the nerve pain is combo rads, tumor, and AI. Status quo works for me.
Yes, the name of the game is to stick around for as long as possible so we can enjoy our loved ones. My youngest is in the 4th grade and I worry about him the most. I watch the trials for new drugs hoping they will be available for me one day. Sticking around means he can keep being a kid for as long as possible. I've talked to adults that lost a parent growing up and it seems to take away the child's innocence....you can see why they make certain choices as adults. Sooooooo hopefully A/A works for a loooong time....and after that some new drug will become available and it will work for a looooong time......then one day I will see my daughter get married....and maybe even see my youngest graduate! Hopeful! Today has been a pretty good day!
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hi everyone, new to A/A. It sounds like the side effects are pretty rough! The BC just went to colon mets. Has anyone had minimal side effects? How long have you all been on this combo? Super glad to find this thread.
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tina72,
I have been on a/a for 9 months I tolerate it really well thank god. Only once it got really bad but I put on my big girl panties and tolorated. My whole tong was in sores but after a week and all the magic mouthwash and kankor sore meds I was back to normal. Otherwise over the 9 months it really was kind to me and I have stay on at 10mg. But I have a feeling my relationship with a/a is ending soon.
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thanks for the reply Stella, why do you think it is coming to an end with A/A?
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Welcome Tina, sorry you need to be here. I had a rough time after about a month on a/a. However I was doing hip and spine radiation at the same time and the two together may have been too much. I took a break and now I've been back on with minimal side effects....at least in the big scheme. I'm weak and fatigued, for sure. But I'd rather deal with that then be weak, tired, and on IV chemo weekly.
I just realized how tired I really was when the cleaning ladies showed up at my door unexpectedly and it brought tears to my eyes. I've been trying to keep up with my 4 dogs and 4 kids at home, but finally a few days ago I left a message for my old cleaning lady asking if they had any time soon that they could come out......and the best part of today is they are here! What a load off.....so happy!
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romansma, when I was first diagnosed I was very sick and spent many nights in the hospital. My dad paid to have a lady clean my house every couple of weeks, what a relief that was and still is since I now got ssdi and use some of that money for her. How long have you been on A/A? I am really needing to hear a miracle story, I am pretty sad about the progression.
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Romansma: I think it's wonderful that you cried when the cleaning ladies came! Crying is very healthy and so is laughter!!! I'm sure you are enjoying your clean house!
I was anxious to share what my MO told me today! Most of you wonderful ladies know that I had to get off Afinitor because of the mouth sores! Well, he said my lungs are clear and even w/o the CA 27-29 results that he thinks the Afinitor/Aromasin is working for me. I was only on the Afinitor for 13 days but didn't cough at all and felt fairly well.
He wanted to know how I'm really getting along and I told him that I try to think positive about this combo/my illness as much as I possibly can and that I try to accomplish at least one major chore a day. I then added that I love to feed the birds and water my flowers every day! I told him that I really want to be here for my youngest son's wedding next May 2nd and he sees no reason why I won't be there! He is a wonderful doctor!
If I could have one wish it would be that this disease would leave younger women and children alone!! I've lived my life--my children are independent and happy and my grandchildren have a happy life! I'm not brave at all--just being honest and if there's anything good about this stupid disease, it's changed me! I'm no longer a people pleaser! Quite honestly, I don't even enjoy associating w people pleasers now! I'm sure my friends have noticed that I've changed!
Well, I hope you haven't minded my venting a little but it felt really great!!
Goodnight to all of you on this thread! I so appreciate your support!!
Judy
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I may be taken off A/A as well because I've been on it for 7 months. My last 3 scans have shown progression. My onc will give it 3 more months to see if there is any regression of mets. I have to do rads for some new spinal mets & I have a lymph node showing cancerous as well on this last scan. The next treatment will be faslodex. He might use this with Affinitor, which I'm not thrilled about.
Terri
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Hi Again, Tina. I've been back on this combo for about 6 weeks now. I'm preparing for the long haul on this one and really loading all my eggs into the AA basket! You could say I have HiGH HOPES for this combo! I know this is a hard time for you, I've been there, and I have flashbacks often, but I really hope you find some peace soon. Our time is so precious. There is so much I still want to do.....and feel....and time is ticking. I wasn't always like this, but I've decided that my doctors are paid well to keep me alive, so I've delegated this job to them. My job is to take care of my wonderful kids......open the door to an unexpected cleaning crew from time to to time......and feed my soul on a daily basis. Pretty sure I left something out, but my brain isn't what it used to be.
Judy! Happy to hear that this combo might be your magic. How are those mouth sores doing? Have you had a hamburger lately? I remember after 10 days of nothing but smoothies, I couldn't wait to eat a hamburger! By the way, I think my people pleaser is gone too.
Do you think maybe the Afinitor kills people pleaser cells along with cancer cells?
Terri, did you see the thread about Faslodex and Afinitor? I took Faslodex prior to this combo. It was an easy treatment, but I had progression pretty quickly. Maybe I would have done better if I had the Afinitor with the Faslodex. Anyway, I really hope you find something that works soon!
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so sorry you girls feel awful. I was on it and it is a tough one. Like some of you Vicodin did help take the edge off. The mouth sores were the worst. I practically drank..I think it was called tanka. It would numb me up enough to,eat and to go to sleep. Be careful eating with the numb mouth. A friend of mine told me when she was a kid, she used a septic stick on her canker sores. Welllllll, that was fun. You have to wet the septic stick and coat the sores...ouch...and then hold you lips out till it drys.. I actually held my lips out and blowed dried it...can you picture that?..what we won't try to get some relief . Septic stick says external use only...but what was it going to do...give me cancer or something. So I tried it. Again took the edge off gave me a little relief.
That drug is just a tough one. I got on it as soon at it was approved. I remember saying to my doc...really....this is what we have been waiting for.
Hope you all,find some kind a relief
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