Afinitor/Aromasin
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Rosevalley, Nature Girl and Romansma - you are such brave ladies and I tip my hat to you - as you know I bailed on the A/A combo back at the beginning of June - my scans late in June showed very good news (at least to me) there was regression everywhere and TM's were way down too - there is of course still cancer but me and my onc have decided that I will not have any more treatment till after scans in September - I'll get my results on September 29 - they said that I cannot go back on A/A as it was going to be way too damaging to my heart and lungs (I've had A-fib probably since birth) - I feel wonderful now that I am not taking any AIs - I am enjoying every day, even doing household chores as I haven't had any energy for six years - I know this can't last forever but four months off drugs is a huge gift - I'll always follow you here and wish all three of you happiness and lower se's no matter the treatment.
Naturegirl - go to your dentist - and also call your onc's office re dental problems - you don't want to fool around with this se - it requires professional input.
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I just got a very sweet message about options and side effects. Don't worry. I really am fantastically upbeat right now. Not down at all. If anything it's a tremendous relief. I am Buddhist in thoughts about death and there is no fear of death. Change is normal. I shared too much so I deleted most of this post.
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Sandy, so glad you are feeling better. Enjoy your summer and thanks for checking in!
Rosevalley, wow, you have so much going on. My heart goes out to you. I do understand, a little. My oldest is bipolar and her life just unraveled a couple of weeks ago while I was in Big Bear trying to enjoy myself. The call came at 2 in the morning and I had to get home ASAP. It's been a crazy few weeks, little sleep, lots of dr appts, but This time I tried to stay aware of my own need for care, something I was never very good at. With 5 kids, 4 dogs, a house to take care of, a business to run, board member, etc.....there was never time for me. I've really tried to change that and it has helped. The bad stuff doesn't send me spinning quite as fast.
I also understand how much a loveless marriage can eat away at your soul. My first marriage was so tough. I always knew I'd leave, but I stayed for my 2 oldest kids, thinking that was the right thing to do. One day, it occurred to me that I was giving my kids an example of marriage that I didn't want them repeating. I wanted them to know how marriage should really be. That's the day I asked for a divorce. Luckily, my kids have known a loving relationship between me and my husband now for the past 14 years.
Rosevalley, I know you don't see the point in making any changes, but you mentioned Buddhism. Mindfulness! I'm sure you know putting yourself in a better situation would do wonders for your sense of well being. Sometimes it's little changes that lead to the stuff that recalling makes our life worth living. You are only 56, that is still fairly young! There are new drugs coming down the line that might work for us. For some of us, this disease might be chronic. Right now is not how things will always be. Maybe you need something that will allow you to have a tiny bit of hope for the future. Is it possible to live separately from your husband? Maybe removing yourself from the daily negative feelings would help. Have you tried any of the antidepressants? Could be the nudge to help you see that there is still hope.
That said, I still support you in whatever you decide is best. I don't know everything about your treatment, etc. Sometimes, it's felt like too much to me too. But then, something happens and suddenly I have this feeling of hope for the future. This small change motivates me to do the things I need to do to make things even better. We are always changing......and things will not always be as they are right now.
I meant what I said, Rosevalley, please let me know how I can support you. This is a tough road and you need someone to lean on. Our husbands/partners are not always capable of giving us what we need when it comes to this disease. For that matter, they have a tough time understanding and giving support when it comes to things like dealing with bipolar and ADHD kids...I know! So, it doesn't need to be your husband that props you up when you need it. But, you do need someone, you can't do this alone.
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Yes having bipolar teens will rock your world. I just deleted the rest of this message too personal and i shouldn't have written it.
I don't think medicating yourself to accept a toxic home life is helpful, so I have not tried antidepressants. I have tried them before and never thought they did a whole lot frankly. My husband is not mean to me, we just live side by side ignoring each other. We are just starting to pay for college tuition and fees as of this month! So moving out isn't an option either. Besides I want to move out of my body and cancerland.. and that isn't an option here on earth. Stopping this lovely cocktail of Aormasin and afinitor will no doubt help. Look at how much better Sandi felt once it got out of her system! The problem is once the drugs are out, the cancer eats out my bone marrow yet again. The chronic anemia removes my ability to do anything.. life crawls to a stop. I have been through this a number of times.. the only realistic solution is let nature run it's course and get separated from your body/ cancer - move on! I don't want any more patches on the dike.. how many years can you tread water? Thanks for the offer of support, Buddhist teachings have given me much peace. I know we are not supposed to mix religion and cancer boards.. sorry if it offends anyone. Anyway.. since I'm off A&A I should sign off this thread. Peace and fortitude to you all.
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Hi,
I am a support person, and my mother is scheduled to start afinitor next week. She's been fighting stage IV since 2008. I am very happy to see her around. She is a Christian, and she does not seem to have fear of dying. She is a blessing for many people including my teenage daughter. Anyway, I think your teens need you- my advice is stay longer for them, and at some point they will appreciate. Besides that, if the drug hurts, there is lots of alternative staff that fights cancer and helps to cope with chemo side effects. Be well.
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Welcome to BCO Forums DoctorM
Sorry for your Mum but she has you and that counts a lot.
There is also a Topic For Family and Caregivers of Members with STAGE IV Diagnosis that you may be better posting into.
The Mods
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Rosevalley, I am saddened to read your posts. What we have is a very tough thing to go through, for all of us, some with more progression, SEs etc. I can understand your feelings but life in and of itself is a blessing, each day ya know? I wouldn't give up. As Romansma has said, there are always new meds that may help you. I asked my oncol. when A/A fails, what's next for me. He said Faslodex would be the next drug, that there are trials now combining Faslodex with other meds. Have you tried Faslodex? Please stay with us.208sandy, I have consulted my dentist and my oncol. knows what is going on. It seems that sometimes I figure things out myself, unfortunately. Yesterday I had a pain free mouth day, then last night, I came down with a migraine and suffered thru the night. This morning, the migraine is gone but the mouth is acting up again. The jaw is not hurting, it's the roof of my mouth, then the right side of my teeth. I think that is stemming from my mouth pain, and wondering if it is due to taking Xgeva shots? I started taking monthly Xgeva shots in May of 2013. In Nov. of 2013, my oncol. reduced shots to every other month. My last Xgeva shot was May of 2014. I was scheduled for an Xgeva shot in July but opted not to take it. My oncol. told me several months ago, the benefits from getting Xgeva shots every 2 months vs. 3 months are the same. I have my next Xgeva shot scheduled in Sept. 2014 but not sure if I will take it. I am trying to hold on in taking 10 mg Afinitor with Aromasin til Sept (my next oncol. apt) and may ask for a reduction at that point, depending on how I am feeling, and if I can hold out.
Romansma, thanks for your input as well. I appreciate that!
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Gosh Naturegirl you're going through it aren't you? I didn't realize you were still on 10mgs - I never got that high - I stopped at 7.5 - hoping for you that you get really good results on next scan - glad that you're keeping in touch with your dentist through all this - I had a good friend who had a problem with a bisphosphonate and it didn't turn out well as she hadn't been in touch with her dentist so I was worrying for you. Sending hugs, S.
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208sandy, thanks my friend! Yep, trying to hang on with 10mg Afinitor/Aromasin daily. I started taking combo March 18th of this year, so as if August, I'll be going into my 5th month. My oncol. didn't say but I'm thinking he will again schedule me another 4 month cat scan series, so that would put me for November. I tell ya, the first set of cat scans I took in July (4 months of having A/A combo) were very good so it is encouraging to stay with mg Afinitor/Aromasin combo. I am thinking I may have him cut down dosage come Sept. We'll see, depending on how much I can manage etc. etc.or how I will be doing at by that time. I'm still on 500 mg. penicillin tabs 4 times a day due to my 2nd root canal I had last Monday. I'll be glad when that is finished. I'm thinking my headaches may be from taking those antibiotics. I have been taking high potency 500 mg times 2. Vit C daily for some time. I'm going to try and stop those and see if my palette issues will resolve. Don't know but worth a try. That is basically my problem at this time. My oncol. did say I am anemic at this time but wasn't very concerned as it was just under borderline.
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Naturegirl - I wonder if the Vit. C does have anything to do with mouth sores - I am quite allergic to citrus and my docs don't want me on any supplements except for D3 (my D was very low) - maybe if you don't take it for a little while things might change - sure hope so - sounds like you're toughing it out - so proud of you. S.
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Hi 208sandy, I dropped the Vit C as of yesterday so we will see. The roof of my mouth feels more like a big burn, ya know when you eat something very hot, and the palette get burned, but a constant hurt. Then the right top teeth(same side as the burn/hurt in the roof of my mouth) begin to hurt on and off, alternately. Hope the vitamin C is the reason for the problem, wouldn't it be easy? I am also trying to incorporate more foods with Vit B as I read this may help. Fingers crossed. Thanks sandy for your words of encouragement, means a lot to me my friend.0 -
Yes, dropping the Vit C would be easy but we both know there's nothing easy about this treatment (but it is effective!) - can you take a little break right now by dropping down to 7.5? Sending hugs, S.
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Hi Naturegirl! Hoping your mouth and jaw are doing better. I have another mouth sore as of yesterday on the inside of my lower jaw....weird place. I've still been haphazard with the probiotics, so really need to step that up. I think I mentioned that my MO backed me off Xgeva to only 4x per year. I'm pretty sure that is the standard now. I'd be conservative until your root canal and jaw issues resolve, though. As far as sticking with the 10 mg Afinitor, I know what you mean. I had the first 'promising' scans since this stage IV roller coaster began, in July. I don't have regression yet, but I'm hoping with a little more time on this combo, we might see regression of some of the areas. Sooooo, I plan to stay with the 10 mg in hope of it pushing back on my cancer! On that subject, does anyone know if this drug combo has been studied at lower doses? I'd love to see that, if so.
Rosevalley, if you read this, I'm thinking of you and wishing you a little slice of peace with a dollop of joy today.
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Romansma - my onc told me three months ago that to her knowledge no one had studied A/A on any dose lower than 10 mgs. - glad your swelling is gone, hope you're enjoying you summer. S.
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Hi 208sandy & Romansma,
Regarding the breaks, what I do and it seems helpful to me, is I notice things get hairy going in to each 4th week of each month of taking A/A combo. At the 4th week, I stop the Afinitor for 3 to 4 days, and it helps some. My oncol. knows I do this and he is okay with it. My first set of cat scans since taking A/A combo really showed promise. The two lymph nodes by my sternum are no longer picking up on the cat scans. They were there in my Nov. 2013 scans and March 2014 scans had grown slightly. That is when oncol. put me on A/A combo. The lung nodules are 'grossly stable' which sounds good. I think my sternum shrunk some. The 6th rib spot is still there but cannot be measured since it's hard to measure in the bones, (is what oncol said). I'm trying to hold out with the 10mg dosage until possibly Sept. That is my next oncol. appt. I'm thinking he will do scans in Nov. Romansma, I am going to talk to my oncol. about the Xgeva shots. My next scheduled Xgeva shot is for Sept. but I may opt out. My last Xgeva shot was in May of this year. It's good to know standard is 4 times a year on the Xgeva shots. I thought I read the Xgeva shots can be taken for 2 years only.
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Greetings Folks- well I have been off AA combo for a week now. I had increasing swelling in face and neck and on my way to the cottage I felt like my throat was swollen shut and could not breathe. I was treated for an allergic reaction but I think it has more to do with the numbness in my face and throat. My brain and spine MRI were all good. I went for a Cat scan today so will meet with my MO next week. I am nervous to not be on it and nervous to restart it -
. Will let you all know when the mystery is solved!Best,
Toronto
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Hope you figure it out soon, Toronto, scary.
I'm coming up on a month back on AA combo gain. Fatigue and weakness setting in. Tried to go for a walk downtown today and it was tough. Still getting mouth sores. The current set is on the sides of my tongue. Hurts to eat, but doing ok. A bit more aches, probably due to the Aromasin. I haven't noticed any swelling yet and my BP has been normal.
This is a bit of a rant, but this med combo isn't for sissy's. Because I have my hair, and don't go in for infusions weekly, my family & friends seem to forget that I'm in treatment and experiencing things that really slow me down and make me feel a little crappy at times. I'm trying to keep things normal, but I feel like collapsing in a heap on the floor sometimes. I'm just reminded of how good I started to feel when I went on a break from the drugs. But, it seems to be slowing progression, so I will suck it up! Really looking forward to my next break from this!
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Romansma - just tell everyone it is "chemo in a pill" - that's what my onc said to call it - because that is what it is!! To be honest the A/A made me feel a whole lot worse than any chemo ever did. Sending hugs, S.
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Just wanted to let you know that my experience with Afinitor was that it did get a whole lot easier after your body adjusts to it. Initially I found it very difficult to deal with, but after a few months, it got much easier. The fatigue, mouth sores and gastro issues eased up considerably. Have been on Afinitor on and off for two years.
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To Romansma and all others taking this combo:
I haven't replied in a long while but my computer crashed and I have to go to the library for now. I just wanted to say that your messages on here really help me to keep fighting!
I am on the 7.5 dosage of Afinitor as of last week. I know exactly how you feel! I have days like yesterday when I can move furniture and do thorough cleaning in my home; I also have days that I just want to read and relax on my front porch!
I go in the 21st for a CT and bone scan. I will post my results as soon as I know. It is what it is (my new saying)!
Have a great day and keep up the fight!!
Love,
Judy
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Judy i hope your results will be worth this combo. Wishing you good luck and prayers.
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Judy, really hope your scan on the 21st goes great and makes you feel like the daily struggle is all worth it! Thanks to everyone here helping us all to stay on track. I was feeling so awesome a few weeks ago (right after my AA break) that I'm a little down about the way I'm starting to feel right now. It's incredible how much hope and positive thinking a good scan and feeling good for a little while can do. I find myself looking forward to the next 'break'! I'm thinking I might need one around the holidays!
Keep up the good work, my friends!
Hope
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Hello,
My mother is due to start Affinitor and Aromasin ccombo and one Onc is suggesting only Aromasin while one is suggesting the combo. We are a bit confused but probably will go for the combo and hoping that we can kick the ccancer bugs out.
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I also had bad effects on A/A combo! total loss of taste,appitite lost 70 lbs in 10 months! now have progression outside of stomach !
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Hi Romansma, I am just starting to perk up after 2 weeks off the combo and have to admit that feeling almost normal is a welcome break! I almost forgot what normal, felt like!
I am really dreading having to go back on Tuesday and face the next reality-
I am starting to think that breaks need to happen so we have something to look forward to, this never ending treatment really is hard when there is no finish line. I am with you - break for the holidays will keep me mentally going- great idea
Hope you feel better soon.
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Thanks so much, Woodylb and Romansma!! I am thinking of everyone on this thread and I hope we all can enjoy today and every day--even when we feel tired, etc.
I live off the North Carolina coast and while we have had a lot of rain, in between the showers and storms we are having cool breezes.
I have never known an August with this much rain but I'm not complaining!!
Having loved sweet, iced tea all my life, now with these mouth sores, I much prefer a 8 ounce glass bottle of Coke!! It helps with the reflux and depression too LOL!!!
Love to all!!!
Judy
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Hang in there everyone! Mouth sores are calming, finally. But, I have bumpy, itchy rashes on my thighs now. Restless legs at night. I'm tired! K, that's enough complaining for today. It's almost dark right now on the coast of California and that means........bedtime!
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Hi All: finally some good news to report. All scans ( ct, MRI of brain and spine) were clear, all bone mets stable or improving so nothing new on the scans and 2 small liver spots shrank again. So way to go Affinitor!
I am starting the aromasin today, and cymabalta for nerve problem/ neuropathy. Then beginning Affinitor 5 mg again in 2 weeks once those have 2 drugs have settled. Hoping it goes more smoothly as I am scheduled to go back to work full time in September. Fingers crossed but not sure about the fatigue.....my Mo said ultimately I make the call on what is tolerable so trying my best to stay th course with this one.
Best to all,
TO
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pearlady, that is great A/A combo has helped you for some 2 years! We all need encouragement for sure in taking the A/A combo.congrats Toronto_012!
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Toronto way to go !!! This is great news , wonderful news. I hope the next doze will be more tolerable for you and all the ladies on this thread. The reason i keep checking this thread , is that i was offered to go on them i refused because of the SEs . I decided to on aromasin alone. And your news and pearllady makes me wonder...
Again so happy for you keep going
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