Life on aromasin
Comments
-
Proud, I have a theory that because I started off this journey suffering from fibromyalgia and migraines that I may be more susceptible to SEs. But that's just a theory. I just know that I don't want to end up needing knee replacements and having heavy bricks for feet at the end of five years. But that's just me. Others may be willing to have those things happen for the 7%-8% extra chance of reaching the ten-year survival mark.
0 -
Corky, I can understand your thinking. This week is my first week off the med....no idea how I will feel when the dang pill gets out of me. Hoping my feet feel better
0 -
Proud, keep us posted on your progress. You add a lot to these discussions!
0 -
Corky, right now, feeling funny, been waiting on this time for 5 years and now.....weird feeling as it was sort of a security blanket?
0 -
Proud it might be an anxiety feeling which is a strange one but it happens. The reason I said the pharmacist cuz I got close to mine over these yrs. and there were times she would call me and say she called the Dr. to change a script for something, and when I asked why she would just say thought it was a better choice for me, after a while I knew she was watching what the Dr. gave me and as we talked over the years she did say most Drs. don't know ALL the interaction because they do not use a lot of certain meds and that wasn't their main study so she overlooks some scripts when she goes over meds and know the choice is not the best one, not that it would do awful harm but it just wasn't the most effective for whatever it was prescribed for. And if they do use a med all the time they get very comfortable with it and might not read all the current studies on it because they know its a good med and it is but more and more comes out on these meds--nothing major just more info. And like I said this is their specialty. BTW when I asked my Dr. for the pain med I'm on now she never heard of it and the pharmacist was very familiar with it, just not a lot of people get it, cuz the Drs. aren't that familiar with it.
0 -
Camille, that is interesting. My pharmacist has been very helpful these last months as I was battling issues that my PCD seemed not to understand. I have a meet tomorrow with pharmacist regarding medicare so will bring it up with the pharmacist. Actually hate getting to know these folks so well~~
0 -
Hi Camillegal and everyone else too!
I am wondering where to post this question: I have been taking NSAIDs regularly to take the edge off the increased arthritis I get from AIs (plus I have 3 herniated discs in neck that need to be managed), but I have had to stop taking them recently because I have had months of stomach problems that always go away as soon as I cut out the NSAIDs. I already exercise a lot which really helps but I think that I still need something, especially at night.
Camillegal, you mentioned you take pain meds so I am curious to know what you are taking? I would love to hear from other folks too about any ideas/recommendations they have as well. I need to change things up!
Best,
Beau
0 -
Hi Beau--I can't tolerate the meds I really like so I had to do some investigating and I take Tylenol 4, it used to be 3 but I asked the Dr. to bump it up and she didn't know about 4--There are much stronger meds, but since I react so strangely to them I don't get all those crazy SE's from these--so that's my med of choice. Good Luck.
0 -
I have been taking percocet for quite a while for my bone on bone knee so it takes care of some of the effects of the exemestane too but not all...sometimes I resort to an advil on top of the percocet. I tolerate the percocet very well and it doesn't even make me loopy and I take 10mg at a time so I guess that is why it is best for me. I see a Pain Management doctor for the pills cause most docs are afraid to prescribe narcotics these days due to all of the abuse and diversion of them. I pee in a cup for them once in a while to make sure I AM taking them...lol. Never thought I would take a drug screen I wanted to flunk! HA!!0 -
I was given Percoset after my wrist surgery, but could not tolerate it at all. Made me dizzy, nauseated, gave me blurry vision, etc. Same with Vicodin. I can't believe people get addicted to these, but I know they do--
0 -
Hi Beau,
I take Prilosec every morning for my stomach and then take Celebrex for the arthritis. I've tried most arthritis pills over the last forty years and this one causes the least problems. Loved Vioxx but they took it away. I have my doctor write a script for the Prilosec and get the generic at COSTCO, even though I'm not a member. It's cheaper than buying over the counter.
0 -
Hi All,
I appreciate all of you replying to my question about what take for pain (apart from NSAIDs). I am going to see my doctor on Thursday and will report back. I took straight ocycodone (no NSAID) when I was going through chemo because my liver enzymes were on the high side during that time. I have an "emergency" dose on hand but use it rarely.
April, I am interested to hear that you take Percocet regularly. I would like to go back on it when needed but I have been concerned about having it loose it's effectiveness over time (ie. my body gets used to it) but maybe that is an unfounded worry?
In any event, I need a break from the NSAIDs. I am taking prilosec and it really helps too.
Thank you all for taking time to reply!!
Best,
Beau
0 -
i take 10 mg oxycodone, every 4-6 hours for pain caused by my treatments. It takes the edge off and I tolerate it well. Everything else I've tried the benefits did not out weigh the side effects.
0 -
Beau, like Linda I take 10mg oxycodone every 4-6 hours for pain, max 5 per day. Have been on the same dose for the last 4 years and do not seem to need more and some days, I need less. I am not addicted but I am dependent and would have to wean off it if I needed to stop to not have the withdrawal symptoms since I have been taking it for so many years. I have a bone on bone knee that needs total replacement and I had 3 opinions. One said surgery and the other two said to try and hold off until I am in my 60's cause they wear out and I don't want to have it done more than once and the life of a new knee is anywhere from 15-20 years only. I was 54 when I started taking them so they told me to try to wait.
I go to a specialist in pain management for the meds and I am monitored carefully for any problems. I have never asked for more/larger mgs in the 4 years. I dose myself the right way and don't even feel them anymore in terms of a "buzz" so it works for me. I work full time and without the meds, would not be able to walk. Now with the pain from the aromasin, I would be in deep doo-doo without these pills! I would be calling out of work at least twice a week cause the pain is awful some days!
0 -
I saw my MO today. She said that if Aromasin is causing too much joint pain that there isn't much sense in switching to another AI since they are generally worse on joints. So she said that if I don't want to give Aromasin one last try that she will switch me to Tamoxifen. Boy am I confused! I didn't think Tamoxifen was even an option. Now I have to do my homework and look into this.
Anyone here have any experience with this?
0 -
corky60 - while I have never taken Aromasin, I took Femara and Arimidex with HORRIBLE
side effects. My new MO has started me on Tamoxifen. Only been on it since mid December, but already am feeling so much better (not counting the PT and OT I am currently doing from the first two AIs side effects. Ugh!)
0 -
Wow BayouBabe that is encouraging. I have been concerned too about the effects of Aromasin on bone density. Sorry to hear that you are having to get OT and PT for your AI SEs but glad you are on the right track now.
0 -
Thanks Corky. Good luck with your research and making a decision! Hope you find some relief soon.
0 -
BayouBabe, how long were you off Arimidex prior to starting Tamoxifen?
0 -
When I was on Arimidex and having terrible joint pain, I learned on a thread here about someone that had gone gluten free and her joint pain stopped. I was told by a nurse friend that gluten is an inflammatory and when you remove that inflammatory from your diet whatever is being affected will stop being painful. I was desperate, I could barely walk, never mind exercise, the pain in my hips/knees/feet/hands was so bad. Going gluten free has been the best decision for me. No doctor is going to tell you to do this, my first onc didn't believe me - I fired her because she plain old didn't listen to me. My new Onc is far more supportive, but as someone mentioned, if there isn't a "study" on it, they cannot recommend. I am so happy I read it on that thread as I would have had NO idea that gluten could cause such pain being on this med. Oh, when I switched to Aromasin, I still couldn't eat gluten - I tried and the pain started all over again. This IS a commitment - there is no 'going a little bit gluten free'. It's an all or nothing. Even a little bit of gluten results with me having sore feet and hands within a few hours...It's that quick. It took 2 weeks for the pain in my hips to go away, about 4 weeks for my knee pain to go away and honestly, 2 months for the pain in my hands and feet. I think that's why if I ingest gluten - usually by accident - the almost immediate se is the foot/hand pain...Thankfully there are many gluten free products and restaurant choices. I have learned to pretend that I am celiac as no one understands that my reason for going gf is due to a drug I take because I had estrogen receptors associated with my breast cancer. Seriously looking forward to January 2015 when I get off this drug - I do not have to stay on it for 10 years as my onc told me that my estrogen receptors were very low - yay!
0 -
Thanks ritaz. I suppose I could have suddenly become sensitive to gluten after four months on Aromasin. As it is I eat very little gluten to begin with. But I will keep this in mind.
0 -
corky - I gave myself about a month off in between meds. So glad I did, but it made it so hard to start up again.
0 -
Thanks BayouBabe.
0 -
Hi Corky,
My good friend who had bc 6 years ago started on Tamox for 2 years, switched to AI for 3 years and is now on Tamox again. She is at a major cancer center in NYC and she is probably going to stay on Tamox until she reaches the 10 year mark. I am very interested in this topic because I think a lot of us could end spending 5 years on AI and then having to decide if we want to keep going on either AI or with to Tamox. I don't think all the research is in yet, but I think in a couple of years, it could be. I am 3 years out and my onc (also at a major cancer center in Boston) says he wants me to keep an open mind about 5 vs 10 years because he said we will know more in 2 years.
If my bones don't hold up well and the research indicates 10 is better than 5, I may choose to go on Tamox after my 5 years are up. I hope that you have a much better experience on Tamox!
In regards to pain management, my doctor wants me to try Tramadol. Any one have experience with that? I am certainly up for a switch from NSAIDS!
Best,
Beau
0 -
Tramadol can have SEs just like any other med but it doesn't mean you will get SEs. If you try it then do so when you don't have to drive to see how you do with it. Other than the pain from Aromasin I have a few other medical issues which cause pain so Tramadol is a standby. IMHO it seems to be stronger than an NSAID but not as strong as a narcotic.
0 -
Boy, I have learned so much reading your posts. It's quite phenomenal.
Throwing this out there: Letrozole really left a lasting mark in both of my hands. "Grabbing" most things is out of the question because of the trigger finger in both middle fingers and thumbs. Did anyone seek the help of a orthopedic surgeon for their trigger finger or did it just go away? Therapy? Splints? I fear that Exemestane isn't going to be much better.
I am going to pursue a consult, but thought it worth asking anyway. It's criminal how these side effects have often more to do with the lack of a quality of life than the cancer (in the short term, of course).
Scorchy
0 -
i changed from letrozole to exemestane and feel a lot better but its important to take at least a month off before starting the next one. Still get joint pains but less so
0 -
Scorchy
I've got trigger thumb in my dominate hand after not quite 2 yrs on AIs. And hints of it in the other thumb, fingers and toes. I'm on exemestane/aromasin now. After I get the drs visits over for a gyne problem I'm going to a specialist for this. I've read quite a bit and these are options I've found. One is a cortisone shot for that lasts a month or two, another is splints, and another surgery. I'm using two ways of splinting now. It's not getting better or much worse. I have to limit my activity though. Surgery looks to be the best option for me. The tubes that hold the ligament are stretched a little and this is supposed to stop the catching of tissue and then inflammation. It's a minimally invasive and the hand can be used right after the surgery.
Some women report that the SE spontaneously goes away even though still on an AI. That would be the best resolution, wouldn't it?
Edited to add: My MO didn't think this was AI related. Really? I'm going to bring him some literature next time. I did that for eye SEs on all related cancer meds.
0 -
doxie - I had trigger finger and it spontaneously got better. It just went away about as silently as it appeared. Hoping that will happen for you.
0 -
Hi Doxie,
I had terrible tendonitis in both wrists when I first started AI. About 4 months in, it got so bad in one hand that I got a cortisone shot. That did the trick as it never was as bad after that. Hope that yours gets better soon. Best Beau
0
