Life on aromasin
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So happy that you have relief now Yorkiemom!
As for shin pain, I never had shin pain in my life until 4 months after starting aromasin. I even get CRAMPS in the shin in the middle of the night sometimes (like a charley horse) and I never had those either. I eat bananas for magnesium so maybe now I need to up that to a pill too...sigh.
I am always in pretty much full body ache and I had DCIS so I don't (generally but I am human so there is always that what if they missed idc) worry about mets but those of you who were IDC or ILC, I can see why the pain would be concerning and why you have to worry about whether it is from mets or normal for the exemestane...ugh!
I did take some comfort when I read an article written in 2008 in a medical journal that those who have joint pain and nightsweats have a lower recurrence rate while taking these AI drugs and tamoxifen too. Guess this is the price we pay. But, this is an awfully expensive "insurance policy" in terms of QOL and that is why some of us stop paying the premiums before the policy "matures" at 5 years. So far, am hanging in there but I am a former shell of who I used to be. My friends tell me I am more introverted and that I never want to do anything anymore. That is cause who wants to go anywhere when you are in so much pain?
Ok, rant over. About once a month I have to pour it out and get er done and then I am ok for a few weeks. Praying for all of us!
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Nettie,
That is unbelievable! The doc send you to the PCP when he's prescribed a medication that is notorious for its side effects. Some doctors are great and actually tune i to social media to learn how men and women tolerate certain medications. Others are willfully ignorant and that gets my panties in a bunch.
When I was on Letrozole I had joint pain that was so extreme, just getting up from my couch made me cry. I had problems with leg pain and extreme fatigue. And the worst thing was what is was doing to my hands: I had trigger finger in both hands (the middle fingers and thumbs) and when it prevented me from knitting I finally threw up my hands and had had it. I stopped in early to mid December. I didn't even talk to my oncologist before I did it; I knew what had caused the pain.
For me Exemestane has been a wonderful improvement. So far my extreme fatigue is gone, my hands have improved significantly (though I still wake up in the morning with trigger finger, but I think this is due to your hands curling when you sleep, I could probably stop that with a splint). Fingers crossed the stuff is working, but I compile a list of side effects that I read on the board so I can monitor my experience on the drug.
Buy YOU know your body and if YOU know you're having trouble as a result of Exemestane then, dammit, YOU DO!
My oncologist is very open to things, but before I went to my visit where I would tell her that I stopped taking the drug I went to my Knitters with Breast Cancer board (on Ravelry) and told folks that I thought I was having trouble on the drug and to get back to me with any problems they were having. One by one they answered and, sure enough, I had those same symptoms. I made a list and showed it to the doc and said that I knew for certain that I was experiencing severe side effects from Letrozole. It was absolutely destroying my quality of life and I needed a new one. She understood and then prescribed, in my case, Exemestane.
So get that list, go into the doc and tell him you KNOW for certain what is causing the problems and you want an alternative. Unless I have the flu I'm not going to my PCP about side effects I know are coming from medications. (Sorry, I don't mean to sound bossy.) As far as I'm concerned, with cancer in my life that oncologist is my PCP until **I** say otherwise. Bloody doctors.
Good luck, Nettie.
Scorchy
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Has anyone noticed a loss of creativity on Aromasin? My analytical side is back, chemo ended almost a year ago, started Aromasin last June after radiation.. I have the aches and stiffness etc, better on Aromasin than the other two I tried first, but I have zero creativity, bad for my profession, and 2 doctors suggested it was the hormone blocker affect on the brain rather than the residual chemo. Thoughts?
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Scorchy,
I thought the same about going to PCP and found it was a waste of time.
But I can't force my MO to be my PCP. During treatment( chemo) I couldn't have asked for a better more caring Dr. But it's just weird now.
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Sickofpink, I have no doubt that AIs and even tamoxifen can cause a lessening of creativity. Women need estrogen. For example, and this is related to loss of estrogen, I had a friend who was an interior decorator. After she had an oophorectomy/hysterectomy it took her two years to regain some of her creative juices. Even then she was off her stride but was able to function.
As for an MO to act as a PCP, it won't happened simply because they're too busy. They are in high demand to treat very, very sick people. Your PCP may send you away with meds to manage high BP but that's all she has. She's not going to tell you to stop taking your AI in order to lower your BP. My PCP emphasized how important it was to take Aromasin and she wanted to throw more meds at me to manage the SEs.
We really have to be our own advocates.
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Hi everyone--OK my opinion--Disclaimer there is not medical study on this so I'm just spouting off.
Ever since I started this evil little pill, all types of things have happened to me--my discs are degenerating, as is my spine, (within 3 months) Part of my intestine has moved up my side moving my liver so it's pushing on my ribs, my joint pain is OH WOW, have headaches (never really had them before) Sinus infections (never had them) UTI's all the time--never had them- my brain is goofier than usual-but tht can be chemo brain--which they now recognize as real and it can last for years. I've still had my nails fall off and there is more, now it certainly can be aging but my body ages in just months like I was in a time machine--I was sent to PT for back pain--well I still do it but pain is still there--Oh I do have more wrong with my back--my arthritis went from moderate to severe within 3 months all over---My point is---I have no idea what this actually does but I'm sure it does plenty and we either change or whatever--I was told this is the very best one for me so I'm trying to stick it out--Cancer is in remission so I don't change it. So please Nettie u'r not ranting at all--So many have so much from this pill, but I have no idea if there was an actual study of feeling like crap every day and my Drs. kind of shrug their shoulders cuz I don't think they read as much about this as we get. Cuz it does what it's supposed to do I guess. The extra funny part is people hear remission or NED and they think u feel fine--it's worse than chemo hahaha and I had 2 yrs of that but I had good days here and there--This is pretty much crummy all the time. Just my opinion.
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Oh Cami ((((hugs)))) you really do put up with a lot. How you keep your sense of humour I'll never know.
Sickofpink, I wonder about creativity too. I'm a photographer, do weddings, portraits and pet photography, and I need to stay creative. Sometimes I just know my creativity has gone on holidays. I've read that to get your creative juices going you need to use the opposite of your dominant hand for as much as you can.
So - if for instance you are right handed, use your left hand to brush your hair, brush your teeth, use the mouse etc and vice versa for left handed people. It does actually help! Seems to get that creative side of your brain more engaged.
I'm one of the lucky ones, in that Aromasin "agrees" with me. Yes I get aches and pains, but nowhere near as bad as when I was on Arimidex. I also have my brain back on Aromasin - it went completely missing on Arimidex.
I don't have trigger finger issues (I did with Arimidex), but I do get a burning sensation at the base of my thumb, not every day, but maybe twice a week.
I don't get shin pain, but I do have "restless legs". It's only at night, and magnesium helps a lot with that.
I "only" have two years to go, so long as my onc doesn't think I'll need it for more than five years. I see him next week, so will see what his thinking is on that then.
Trish
xoxo
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Cami, bless you for telling it like it is. For UTI prevention have you ever tried Natural Factors cranrich super strength cranberry concentrate? One three times per day seems to do the trick.
I swear I felt my upper spine compressing for a few days when I was taking Aromasin but of course no way to prove it.
Cami, on the bright side as long as the pill keeps the beast locked up in its cage then at least it is doing its job.
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I too used to get far too many UTIs, then realized that if I took an antibiotic for sinus issues, I would then get a UTI~~
finally PCD told me to take probiotics...bingo and no more UTIS and ended up on antibiotics and precnezone lots in the past months
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Isn't it awful? You find yourself choosing between medication that is staving off cancer--in my case Stage IV--and the torturous and the painful and often debilitating effects of medication. Anyone who thinks that breast cancer is feminized pink happy happy is living on another planet, man.
I am glad that Exemestane seems to be agreeing with me overall and, believe me, my fingers are crossed that it continues to work and treats me kindly.
Camillegal, your post was really informative. Thanks for sharing all of that.
Scorchy
Happily knitting now, thank you!
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Sickofpink,
My problem isn't creativity, it's memory and loss of words. I think my vocabulary has shrunk to about a sophomore in high school level. Very embarrassing in my profession. I think it took me a good year out of chemo to regain the creativity and problem solving skills I need at work. Give it some more time or find some way to exercise the brain.
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Oh I'm sorry I got so exploding on this--I don't mean to scare anyone off, but I was having my usual bad day--my diarrhea time which as u know is not from Aromasin, but I have it from --oops no one knows hahaha--It does it's job and there are so many Stage IV that are suffering so physically and mentally so I'm really lucky, really I just rant sometimes--maybe cuz of PINK and happy
so SickofPink I understand. I'm fine really so please don't think I'm mentally suffering cuz I'm not and u'd laugh u'r A$$ off if u saw me fall----I actually fall in slow motion--I even laugh it 's so strange so I don't get hurt, just pee my pants from laughing.I hope everyone has a decent day today.
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doxie, I can relate to "losing your words" big time! I am also in a profession where I need to have a reasonable vocabulary and damn, sometimes I just stutter these days and can't even remember what I wanted to say and when I do, I can't find the right words. Ugh!
Cami honey, hope you feel better! Nothin worse than being in the bathroom all day. xoxo
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Cami:
Warning: to those who get grossed out easily you'll want to stop reading.
I just read a story about a woman who was ill with chronic diarrhea and they drs. thought it was from a C. Diff infection. Maybe she caught it in the hospital. She found a dr. who would perform a fecal transplant. Her friend donated a specimen and the dr. gave her a transplant. It was much like a colonoscopy. It cured her problem.
For what it's worth....
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Rheumy at the VA is contacting my Onc in private practice (turns out she remembers her from going through a USF med program). She's also going to review my case with the Chief of Rheumy at the VA who has done extensive studying of BC and the meds involved we must take and their effects on us. I met her when the Rheumatoid first flared up and she knows her stuff about it, I'll say. At least SHE knew the truth, when former Onc at the VA carried on how Femara wouldn't cause synovitis, etc. Stuff and nonsense!
Most likely I'll be starting a minimum dosage of Methotrexate for the Rheumatoid. Even without the MRI of my hands and wrists, she could see the wrists are swollen and the fingers and found ankles are too, agreeing it isn't edema.
I'm thankful to be on the Exemestane. Getting off the Letrozole was THE best thing EVER for me! The hands got some better but that Femara kicked the Rheumatoid back in and it's stayed even after being off it for one year. Grrrr I'm sure having no estrogen doesn't help thing,s.
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Galsal I hope they can help u, all this junk they do to us causes us all kinds of things without any estrogen.
Corky thanks I do know about C-diff been checked, in fact been check for everything that they know about hahaha b a few Drs. just can't figure it out. I've been treated for Giarda and E-coli which I have had but it still keeps happening. so I just literally go with it.
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Rant warning! Been on Aromasin since January, had minor aches, but OMG, today has been awful, many more days like this and the aromasin is trash.
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oh dear Nettie, try to hang in on the med, I am sure your doc would want you to do so
maybe a massage or a plain old hot soak in the tub would help? hate to hear you are suffering,..
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Has anyone see those commercials for Tommy Coppers--they're like sleeves for LE but they are for all joint pain--pants, shorts, arm, knee, ankle I didn't look them up yet s I don't know the $$$ but people make them sound like a wonderful way to really take away all these joint pains, even tee for stomach stuff. Gotta check it out.
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I will def be checking on the tommy copper.
And yes soaks do help, but who has time for that. However today itwas a must as soon as I got home. And I'm also getting massages but they are therapeutic not feel good.
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What about wearing knee warmers at night? I don't think that there's much if any compression. But perhaps keeping the joints warm at night will be enough.
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I used to sleep in a cold room with windows cracked and as few covers on as possible. Now I pile on the covers and keep my body as warm as possible. Sleeping hot doesn't bother me at all. I've learned to tolerate it because it helps keep the joints from aching.
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I remember asking on a thread about the Tommy Cooper garments. I am sure the experts will report in but think I was told at the time that the TC things did not have gradual compression for the arms...but I may be suffering from brain weakness! aka, memory issues!
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Thanks proud.
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Actually I was told that diarrhea IS a side effect from Aromasin. I had it pretty much constantly when on the drug.
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Amazing how many SEs from Aromasin that I haven't had! Joint and muscle pain check. Everything else nada.
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I'm the same as Yorkiemom, aches and pains(pretty bad), but nothing else.
But the way I hurt today, I don't know what to do.
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Nettie if the regular OTC doesn't help. call u'r onc for something to help.
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Nettie, my aches and pains are a combination of pinched femoral nerve (Sciatica) with SEs from Aromasin (I'm assuming SEs, as there's no proof). I did have a cortisone epidural which has helped. Still painful walking and standing, but much better. I will probably need another shot. Hopefully that will knock this pain to the curb.
I really do think we go overboard blaming literally every problem on Aromasin. Come on, we did have emotional, mental and physical problems before starting this drug!
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I'm not sure, I never, and do mean never hurt like this before aromasin.
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