Afinitor/Aromasin
Comments
-
Naturegirl - I am sure your onc is checking your blood every few weeks (isn't he?) that's where high blood sugar will show up - your foot problems are what most of us who have had chemo suffer from - neuropathy - there is diabetic neuropathy but you would have. . had to have full blown diabetes to be suffering from that I started on AA on March 3 so I think that is six or seven weeks - I don't know - anyway I have never been on 10 mgs. I won't do that - I am having enough se's on 7.5 so unless my onc pushes it and I am feeling much better - I am staying on 7.5.
Romansma - honestly just a dab of hydrocortisone cream (prescription strength) cleared the zits up overnight. Be careful with the facial you skin will be very tender - have a wonderful day.
0 -
Romansma, my oncol. did a cancer antigen level test, I think that is different from tumor markers. How long have you been on AA combo and was it at 10 mg initially? Glad you are enjoying the day. It's beautiful here down south today, but unseasonably cool. Enjoy your spa treatment tomorrow!
208sandy, nope, I get my blood work done once a month. He said my glucose was fine. He also gives me a hard copy of all my blood work as he knows I like to see it in writing in keep on file. Oh, 6 or 7 weeks since taking A/A combo. Interesting that your oncol. did not initially start you on 10mg but it sounds like since you have other issues, that could be why, don't know. I hope you improve on your 7.5 regimen and it does what it is supposed to do. Sounds like it according to your tumor markers!
How are y'all coping with the metal taste in your mouth? Any pointers or helpful tips?
0 -
I am following all your posts on this thread, but don't feel I have much to offer. I've been on A/A for about 5 months, two months on 10 mg and 3 on 7.5 mg. I have mouth sores that come and go and metal taste in my mouth. My daughter told me about a talk on NPR about this subject. I think there are interesting ideas and even 2 books written about it. Chemo Food Metal. Here's Help : Shots - Health News : NPR
I haven't tried any of these suggestions, but I do know some food tastes a lot better than others.
0 -
I don't have a metal taste in my mouth but some foods and especially my beloved coffee don't taste the same at all.
My onc. doesn't prescribe 10mg out of the gate anymore because she has seen too many patients have to give up the combo due to mouth and throat sores and lung problems so she is doing the low dose to high dose instead - she thinks it is better tolerated - she's an onc., a pathologist and an adjunct professor as well so I value her opinion and I have the world's best PCP who takes very good care of my se's (and likes to read like I do). Onc may try to push me up to 10 mg and if I feel much better than I do now I might give it a try but right now I'm giving it a "NYET".
0 -
Well, saw cancer doc on Mon, got a Zometa infusion, they drew blood, and my tumor markers jumped again, from 170something to 240something. I've been on the A/A combo since Sept '13, 10mg, with a short break in Dec because I developed pneumonitis. My tumor markers were 30something in Sept. He's ordering all new CT's, PET and MRI. Just did all this in Feb, before that Dec. The cancer is spreading on my bones, but the lung has remained stable. I'm just feeling disheartened, discouraged and somewhat defeated. I've been on the strongest dosage and the tumor markers are not evening out, constantly bumping up. I'm doing alternative therapies in addition to the A/A. I guess all the scans will reveal more. It's just frustrating. But, I keep getting up, every single day. Thanks for "listening".
0 -
Skylotus - Vent and share away. I hope the scans haven't changed much. I hope you have manageable co-pays on all those tests. (My HMO would charge me 300 for all that) Keep us posted. I am sorry you have to go through this. (((HUGS and Prayers )))
0 -
I hope your scans go better than expected skylotus. I'm doing ok, still. More skin issues....big red bump on my leg and another on my foot in addition to my nose, lip, and scalp. My throat is ok and that makes me hopeful. I had a pedicure this past weekend and I remember it being uncomfortable. I have bruises all up and down my shins from the "massage". Won't do that again. Probably the low platelets. Today was a tough day. Went with my daughter to get a baseline mammogram and ultrasound. She's 22 and we've been keeping an eye on a cyst. Well. The cyst is still there, but ther are 2 new tumors. It's most likely they are benign, given her age, but she will need to have them biopsied. It all caught me off guard and upset me quite a bit. It's enough that bc wrecks our lives, but stay away from my kids you nasty, crappy, disease!
0 -
Romansma- Your 22 year old has a cyst and 2 other areas they have to biopsy. That just makes me sad. I hope things go well.
I have a biological daughter who I worry about. There is a lot of BC in our family, about 1/2 premenopausal and 1/2 post. It scares me, especially regarding my daughter. If they keep the recommendations to mammograms at 50 and shoot I would be dead. They told me mine started at age 38. I was diagnosed at 48. I want insurance to check my kid out at 30, base line. Bad enough we have to worry about it but to hunt down our daughters.. criminal.
How are you coping with the fatigue?
0 -
Hi A/A ladies, I can't sleep so I thought I would let you know my PET scan results.....Monday I was scanned after being on A/A for 3 months. The bone mets were better to both hips and the largest met to my right 7th? rib was obliterated. Lymph nodes showed no progression. I had pneumonia pretty much the whole month of March and had a small pleural effusion that lit up on the scan, but apparently infection will show up too, so my onc is unsure whether it could be mets to the lung, or infection. She sent me to get a thoracentesis yesterday to make a diagnosis. After I got all set up for the procedure the doc ultrasounds me and doesn't find enough fluid to drain. I guess that could be good-is the infection getting better??? Not knowing if I've had progression to the lung is a little maddening. I am seeing a pulmonologist next week and maybe we can get some answers. Doesn't it sound weird when you say that you hope you have an infection????:). Kelly
0 -
Hi Kelly. I hope you get some answers soon too. Logically, you have regression in other areas, that, along with the pneumonia, seems to point to infection. Hopefully, that's what they find and some antibiotics can fix you right up!
I'm up at 4am this morning.....took my pain meds a little too early so they wore off early. Fatigue is still there, but I think I'm coping a little better. Maybe I'm not expecting as much of myself. I still have 4 kids at home, homeschooling one of them, so there is plenty to do all the time. I've started resigning from things like my board position in my neighborhood, school fund raisers, and real estate stuff that I still had a hand in. None of these took very much of my time, but every moment is so valuable now. I only have about 6-7 hours of being productive each day and I want to focus that time on my family.......and then relax and snooze the rest!
I'm really hoping this AA combo goes well with minimal SEs, stabilizes me, and let's me get in a groove for some time to come. I've been so overwhelmed the last 6 months, just want some normalcy for a bit.....a year maybe? I'll take 6-8 months too. I think that sounds really good! I talked to a woman at the spa yesterday that got to NED on this combo. It lasted for 18 months before regression. Encouraging.
0 -
Kelly yay! Sounds pretty good to me. Hope you continue to feel better. Infection beats progression for sure.
Romansma- glad things are better and more tolerable. Four kids at home and homeschooling is a lot.
0 -
Danishgirl, thanks for the link re: chemo foods Metal. I noticed several days ago if I ate something salty, say, salted pistachios, it counteracted the weird taste in my mouth.
skylotus, sorry you are discouraged. But, you got 7 months from AA combo before some progression. My oncol. told me he sees AA helping til 6 months to a year. But, the study did show 20 months before progression. At least your lungs are stable, that's something. Let us know what your upcoming scans reveal.
Romansma, sorry you are having skin problems. Hope you do well with your AA combo.
Catesmom, well that is good news! Hopefully your lungs will be okay. Keep us informed.
I went back on Afinitor (10 mg) last night after getting a 4 day break due to throat sores from Afinitor as I had been taking both for one month now although I had continued with Aromosin. Hoping things will be okay.
0 -
Romansma - sorry about your daughter but hopeful it is "only" cysts or benign stuff - I am adopted and didn't find out till I was in my 60s that my birth mother had died from mets bc at the age of 40 - gotta love adoption authorities that continue to keep secrets - anyway I had just completed my first chemo when the social worker in Montreal got in touch with me to tell me she had found my mother's cause of death - I went all those years not knowing and in one way it was a blessing, in another, it was anything but. Glad you're getting rid of some of your responsibilities and planning for rest periods - I have had to do that as well - but, I am a widow without children and a good deal older than you so it isn't as hard - I cannot believe all you do! Ah yes, the pedicure (and manicure) was told by my onc a while back that those are a bad idea - nice - we can't even be pampered!!!
Kelly - I'm voting "infection" I had a nodule that showed up on x-rays years and years after my first bout with pneumonia.
0 -
Romansma,
I am sorry that on top of your own problems you have to worry about your daughter. It is hard to be afraid for your loved ones. But keep in mind that not all cysts are cancer , she just have to be carful and notice any change. I hope she never ever have to face what we are facing and like you said may this damned disease stay away from everyone specially our children. I hope you are feeling better from A/A . Big hugs.
0 -
Feeling a little more even keel today. Logically, I know these 2 tumors are probably benign, but I'm not working on logic all the time, especially when it concerns my kids. She has had a cyst that we've been watching for a few years now. These are 2 new solid masses, one in each breast. She's just starting to realize, today, that this is going to be a nerve wracking problem that will go on for years and years. I hate that she has to go through this. Seems like enough that she will lose me too early.
Sooooo, I woke up this morning with a 'bag' under my left eye. It's a small pocket of something.....makes me look a hundred years old. Wonder what tomorrow will bring?
0 -
Romansma, This is all just too much for you. I have a daughter and can't imagine what you are going through. I think you must be a superwoman. I hope the A/A combo is attacking those mets.
I just reread the last couple of pages of this thread. Whoever said "Cancer is not for sissies!" ( I would add Stage IV breast cancer) was right on!
I hope you are all having a glorious spring week end. Hugs, MaryAnne
0 -
Romansma, i am soo sorry your girl has to go through this. Most of the time all of us are not working on logic. I have a friend who had also cysts and solid masses. She decoded she does not want to live in fear of what maybe. She had removed from both breasts , they were not cancer but may have become. She had no history of cancer in her family. Maybe you can ask if your daughter can do this. This way it will put both your minds at ease. Please , don't say she will loose you early , because maybe she won't. As i have noticed you have taken mostly anti hormonal meds more so than chemo. So you still have a lot of options even though i hope this one works for you. As i see we both had the same initial treatment which served for three years. But my second treatment my onco. Insisted on carboplatin gemzar . My liver mets seems to be partially responding after three sessions i have no progression and a little shrinkage in the big tumors the smaller ones are less prominent. He totally refused affinitor for the time being. If he gets stable out of this combo he will go for aromasin alone to keep me stable. Where are your mets? If i may ask. Least i hope your mind is put at ease as far as your daughter is concerned. Lots of prayers are heading your way.
0 -
I'm feeling better, thank you for the concern. We scheduled the biopsy for the end of the month. I think this just side swiped me with the reality that she will have to deal with a very stressful situation for decades because of me. We've discussed gene testing for her, but I think she's too young to deal with the decisions she might need to make. She just met someone special last year and they have started to talk about their future together. I think this is why it hit me so hard. I'm so excited for their future. Secretly, I want them to hurry up! I want to feel well enough to help with all the planning, not to mention, be here to enjoy my grand babies one day. But, that is years off......but just some of the illogical thinking that goes on inside this skull! Yesterday my oldest son's grad announcements came in the mail and I was jumping out of my skin excited. Can't wait to see him walk across the stage in his cap and gown. Then my youngest, just turned 10, wanted to have 'the talk'. Birds and bees were flying all over the car! This diagnoses seems to have put me in turbo mode to see each new milestone. I know I'm not checking out tomorrow, and I have hope. However, I'm realistic too. I know the treatments will get harder on me, and my body will continue to slow. I want to feel good for these important milestones in my kids lives. Realistically, I feel some of that already slipping away.
Yes, MO and I have discussed Gemzar Carbo as the next option if Affinitor fails. I would have gone straight to it if we had biopsied the lung nodule. But, I'm not ready for IV chemo again......mostly because of everything stated above. My mets are spine (every vertabrae), hips, pelvis, ribs, shoulder, and skull. I have considerable pain without pain meds. The radiation helped with the hips, but seems to have caused nerve damage in my cervical spine which causes numbness and aching in both arms and hands.
So, back to Afinitor. I didn't wake up with any new issues.....yeah! I'm pretty sure my blood counts are falling, though. I'm still bruising really easy. My legs are full of bruises. I had a glass of wine....and I was flying. That's always an indicator for me. It doesn't usually do that. But that's in line with the last course of Afinitor I did....low counts. This is day 26 for me. All heck broke loose on day 28 before. I'm starting to get cautiously optimistic that I will avoid the big side effects.......knock on wood.......cross my fingers, toes.....and eyes........
Have a great Saturday everyone. I can't wait to get out in my yard today and dig in the dirt a little!
0 -
Romamsma,
I am glad you are feeling better today. Believe me i understand all your fears and feelings , i myself have an only child who has just become 18 , he will graduate this year to start college the next. My fear is i won't be around long enough to see him become a doctor. I live with this sadness every single day inside me , because no matter how good the meds worked for me there will be time they won't ( speaking realistically). I worry so much about him and my husband. It is only my faith which keeps me going and the hope of a miracle.
It is so good that your daughter has someone special in her life , someone who will take care of her and i hope you live long to see this happen and see that all your children can take care of themselves. With all my heart i hope afinitor kicks these mets or shrink them to the max so at least your side effects would be worth it.
My warmest wishes to you and your family and Happy Easter!
0 -
To all of you: I have been lurking around for several days and then I had computer problems and couldn't post at all. I have gone back two or more pages on this thread and have learned a lot about this drug combo!
My onc put me on it because my marker went up from 180 to 200 last month. Today is my fourth day on A/A and I know it's too early to have the nasty SE's. I am glad though that you all have posted such great info on here that is going to help me so much!
A/A is my last drug combo. My onc will start me on Taxol and I hate the idea of chemo via IV and a portacath (sp?) again so much! What else is there to do? My youngest (Andrew, 26) is getting married next May 2nd and I don't want to miss it for anything! I am so praying that I will be here and healthy enough to attend! I know I am 66 and shouldn't fret about it because I have fought so hard to keep this awful disease from taking over my entire life! I hate to hear about anyone with young children who get this! I agree with Romansma: stay away from my kids!! And my grandchildren!! I have twins--a boy and girl and they are 4! I don't know what I would do w/o them! They bring so much joy and sunshine into my life!!
One more thing: I have had this disease since 2005; Stage IV bone mets in 2011 and lung mets in Sept 2013. My motto is Never, never give up!! It can be done--was my dad's and he lived for 11 years post bladder cancer! He had just retired from the ministry in 1994 and had major surgery at Duke; they made him a bladder out of a pig's intestine and it worked better than they thought it would! We prayed that God would give him 10 years to enjoy his retirement (he was never sick--loved the outdoors and enjoyed every day). He lived his life to the fullest! I miss him every day! If I offend anyone because of talking about God, I don't mean too be offensive at all!
Have a wonderful day!!
Judy
0 -
I hope this combo works for both of us, Judy......and for a long time! I'm with you, I don't want IV chemo yet. I want things to be as normal as possible for as long as possible!
0 -
Well, after being on A/A for the past 9 and a half months, I find out on Wednesday whether it's time to move on. My one palpable reminder of my cancer, a supraclavicular lymph node, shrank for the first several months of taking A/A, but eventually a second lymph node started growing next to it. Both are small, but still, new growth is never good. So I had several CT scans last week and I'm awaiting the results.
Even though it's been a bit of a bumpy ride, I'm not eager to move on from A/A. I was hoping I could ride this out until Palbociclib/Femara gets approved, since my MO thinks that will be a great combo for me based on my genomic analysis. I've been better able to manage the SEs of A/A as time went by, and in the past month or so, I've even managed to get a handle on my fingernail and toenail issues. I still suffer from a bit of bloody discharge when I blow my nose, and I do have a more fatigue than before I started on this combo, but otherwise I've been doing fairly well.
Perhaps my MO will be able to up my dosage back to 10 mg (I've been on 7.5 mg for most of my time with A/A). I suspect, however, that I'll be moving on to Xeloda. I'm just suffering the usual scanxiety today--hoping I won't be in for a major shock on Wednesday.
I wish the best of luck to all!Ingrid
(Btw, why are we still stuck in 2013? Those Faslodex gals are on top of this year-change business by comparison. Perhaps we can change the title of this thread to "Afinitor/Aromasin 2013-2014"?)0 -
Ingrid, I am hoping and praying that you will have good news! On my last CT scan, my onc said that there were more nodules on my lungs but they weren't large enough to measure! I liked the way he put it anyway!
I hope the A/A works as well for me as it has for you! I am dreading going back on a chemo via an iv! Not a fun thing to do at all!!
Take care!!
Judy
0 -
Inky - I know what you mean about scanxiety - funny how we don't suffer from it until the day before.
I've been on 7.5 for the last while (I think around a month) and the fatigue is awful - did it get better as you moved along or was it always the same level - honestly I am having the worst time with this - also the blood sugar rise is not too wonderful either (doubled in a month).
Hope you can rest tonight and that tomorrow will bring good news. S.
0 -
Ingrid - good luck tomorrow. Let us know how it goes. You are right why can't we change the title of this thread to reflect the new year? Any suggestions on how to split it or rename it?
Judy- hope this works for you and everyone else.
Sandy- the fatigue just sucks. I find the achy muscle fatigue gets to me. Sometimes I just have been fine all day doing all kinds of things and then feel weak and achy. It's weird for sure. It must be worse for those of you taking A&A every day. I do every other.. which works out to 5 a day in the long run.
0 -
Glad to hear I'm not alone in the achey weakness. I've had fatigue for quite some time, but that could have been the rads. This achey weak feeling has been getting worse this past week. Very frustrating because my mind has a big list of things to do,but I can't get my body to comply!
0 -
I don't have the achy so much (I take Claritin for bone pain) but I do have the weakness and it is just awful - there are a couple of breaks in the day that last less than an hour when I am able to do a chore or run an errand - my blood sugar has doubled and my bp as well - hope this combo is working because it is ticking me off!!!
0 -
Sandy,
Have you considered getting a prescription for Metformin a/k/a Glucophage? I've heard that it's supposed to have certain anti-BC benefits, as well as helping to control blood sugar levels. I don't have that problem, but the A/A has mucked with my cholesterol levels.
Sandy, Hope, and Judy,Thanks for wishing me luck! Unfortunately, I don't get the news until tomorrow. I thought I'd be able to avoid the high scanxiety this time, but I wasn't able to sleep at all last night. Thus I don't feel much like an expert today on how to handle fatigue with A/A. But when things are going better, I do find that exercising (for me, swimming) in the evening so that I can get a good night's sleep has a positive impact on my energy levels the next day.
0 -
Inky - thanks for info but I was married to a diabetic and just completed two and a half years working in our local Diabetes Outpatient Clinic - my point is that I don't want another morbidity caused by a drug - metformin isn't all that easy to take and its use for bc still hasn't been proven - I am in constant touch with two Diabetes Educators - one a registered dietician and one a nurse so I am well aware of it all.
As for exercise - well, I try to walk everyday but I am presently so weak that I can't go out alone because there is a good chance I'll pass out - we're talking WEAKNESS here. My question is "does the weakness resolve itself after a certain length of time?"
Hope you get some good rest tonight - do you have anything to take for sleep - tonight might be the night to take something. Will be with you in thought tomorrow. Hugs, S.
0 -
I do think the fatigue gets better over time. I certainly hope it does in your case. And you're right about my Metformin advice--I tend to be a sucker for any drug or supplement that has a purported anti-BC benefit, no matter how dubious the claim. I recently cut back on the supplements I was taking because I realized they were mostly just giving me indigestion and expensive urine.
Thanks to brilliant planning on my part, I'm down to my last Xanax for tonight (not that it helped much last night). I've called my NP to see if I can get a refill before tomorrow. But just having a place to kvetch already has me feeling a little better.
0
