Life on aromasin
Comments
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Georgetta, good luck with the Aromasin! I definitely think you will be fine tomorrow!
Here's what's going on with me. I don't know how to sort out SEs from Aromasin from degenerative factors. I've had right leg pain for many years, long before being dx'd with bc. Anyway, it became really bad about 1 1/2 years ago, after starting Aromasin. I had an MRI and it showed a herniated disc, for which I was prescribed PT. PT worked and I was pain free for about a year. Then it came back with a vengeance, but this time in both legs. My doctor prescribed PT again, which I have been getting for 3 weeks now. Not seeing much improvement though. Physical Therapist thinks I have an inflamed femoral nerve, arising from the herniated disc pressing on the nerve, and it will take a long time to heal with PT alone. Ugh. So, I am going to get a cortisone epidural next week. Hoping to post that I am pain free after that. Also hoping it lasts awhile. Will continue the PT also.
My belief is that the Aromasin exacerbated a pre-existing condition, but due to the onset of symptoms (years ago), did not cause it. Wonder how many of the SEs we have are similar in terms of cause and effect.
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Yorkiemom, I know Aromasin has exacerbated my knee pain that I had before BC was diagnosed so it is entirely possible this is the case with you. I have a bone on bone right knee that I need total knee replacement for and I was about to do that when the BC took me by surprise and so I put that on the back burner. I can't deal with surgery again a year after I had it twice (two lumpies) so am waiting a bit before I feel I can deal with it. The exemestane is definitley making my knee (and the other one too) hurt more than before as it is all of my poor joints. I am dealing with it because I don't want to try tamoxifen and my MO won't prescribe femara or arimidex for DCIS, only aromasin or tamoxifen so....I wait. I hurt but I try hard to think positive and call the drug my insurance against dealing with the BC again...we shall see if it works! I am hopeful!!0 -
April - whats your doctors thinking on that please? It kind of implies Aromasin is less powerful than Femara and as someone who could not tolerate Femara after trying for well over six months I am on Aromasin now.....
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April, I so hear you about not wanting more surgery, or at least giving yourself time to totally heal from the last surgery. My DH had a meniscus (sp) trimmed about 12 years ago. He's now having bad pain from the same knee down to his foot. He will be having some kind of nerve test next week, which will hopefully pinpoint the cause of his pain, leading to an effective treatment. He has tried PT, accupuncture and chiropractic therapy (because they thought it might be stemming from his spine). Now most doctors think it is his knee. My guess is he'll need a knee replacement too, but he is dreading it.
As you say, all we can do is think positively. I do believe that Aromasin is my life insurance. I won't be giving it up until my MO says it's time.
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Hi Lily55,
She does not think femara is less powerful. She is not a fan of AI's for DCIS, only for IDC and usually prescribes only tamoxifen for DCIS as it is proven for many years but I have a family history of stroke and blood clots and am a former smoker so do not want to take tamox so she said the only AI that has been studied for any length of time for DCIS is aromasin and so she feels comfortable prescribing it (it is the only one that is chemically different from the tother 2 AI's for some reason and has some attributes of a steroid or something?) due to the clinical trial results.
I suppose if I really wanted to try femara or arimidex, she would say yes, but aromasin is supposedly the least harsh of all 3 anyway so I am sticking with it for now. I don't want to start over and find the other kinds are even worse!
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Yorkiemom, I had arthroscopic surgery on that knee twice to trim the meniscus (which I tore) and to scrape out arthritis that was all around the area and I also had a bad bone spur. That was 12 years ago for the first surgery and 10 years ago for the second one. I had some relief for about 7 years and then the pain was back with a vengeance! I tried PT and different meds and finally the BC took over anyway....0 -
April, we can't win for losing.
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Yorkiemom, good luck with the epidural cortisone. I've had a herniated L5 disc for 25 years. Most of the time I could live with it, but when it got really bad, 3 epidural cortisone shots relieved me of all pain, and I'm still pain-free. Guess it depends of the exact nature of the herniation. A friend whose foot and ankle went numb had L5 surgery last week.
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Thanks Wave. Only other time I've had epidurals was during childbirth. Worked like a charm then! How long did your cortisone epidural last? My PT said only about 3 months, but we've heard it can be much longer.
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Yorkie, yes, mine lasted years each. That may be the exception. I know 3 in one year is the max. Again, everyone's situation is different. I tried to be diligent afterwards about the exercises I learned in PT. Hope you get extended relief!
I wanted to avoid back surgery, and did that time. But later I developed a badly herniated disc in my neck, leading to unbearable arm pain and numb fingers. Finally, crying during PT, the PT himself called a neurosurgeon and within weeks I had c5/c6 dissection and fusion. I've never been so happy to have surgery, and I got immediate relief.
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Wave thank you for the hopeful info including surgery if it comes to that for me .
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April, the ortho told me he could "scope" out my knee to clean out the debris which is caused by my bone on bone condition. He didn't say he was getting rid of the arthritis. I didn't think it was possible to get rid of arthritis; in other words there is no cure for it (that's my understanding anyway)
Do you know anyone who has had those gel-like injections that last for a few months? Someone suggested that for me (not the ortho though)
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I have not had knee surgery but when I did my dang toe surgery, the surgeon carved off the knobby joint and said he had taken the arthritis off. I had a rigid toe from breaking it many times. It hurt like the dickens but since surgery....no pain in the area so whatever he did, it worked!
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does aromasin increase blood pressure? Mine seems to be up for no good reason and due to a vascular condition its vital its kept a lot lower than this, like 20 points lower........??
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Dogs, that is what I meant...he cleaned out the "debris" not the actual arthritis..sorry I was not clear. As for "synvisc" I had that done and it did not help me at all but it has helped other people tremendously. I did have cortisone every 6 months for a few years which did help me a lot...until it didn't anymore which was a bummer! I know eventually I just have to have it replaced. QOL issues at this point but now this cancer BS has taken over where the knee was getting to me enough to consider doing it this year before my diagnosis. I am still so freaked out that I had two surgeries less than a year ago and will wait until I am up to being put out again. I HATE being put out for surgery!
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Lily55, some people have reported a spike in their BP from AI's. Mine is up for sure. I used to be 115ish over 65-75 and now I am running about 130 over 88-92 ish which is borderline high!
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Oh yes, on Aromasin for only a month and my bp spiked up into stroke range - I am currently on 4X the strength of med I was taking - bp still up but only to 150/90 range - going on Afinitor this week (it also causes high bp) hope these docs know what they're doing - I am sure tired of all this "treatment".
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Oh definitely my sister is on--oops I forgot and I am on aromasin, both of us have high BP'snow and it terrible cuz I was on 2 pills a daybefore and it was 120/70 ish mostly now it's all over th place high and they changed meds I'm on 5 meds a day just for BP-There are so many things going on with this tiny little horror pill--I hate all this crap and take more meds that a pharmacy has (that's how I feel) at all different times of the day and forget some---so I don't know what I'm doing.
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Glad the surgery worked! My grandson who is only in his early 20s had to have bunion surgery. The scar looks terrible, but the toe feels a lot better!
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dogs, wow that is young so it must have been really bad.
my toe has very little scar, if I did not tell you, you would not know, course now the other foot is jealous and achie at the toe area! gonna leave it alone for now just not good for long walks~~
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I was wondering the same as I've never had high blood pressure and now mine is off the charts! I'm trying to wait it out and see if my body will adjust! Started the aromasin in January! Also, now starting to have hip, thigh and arm pain that I'm assuming is from the Aromasin, enough so now that it either wakes me at night or keeps me from going to sleep! It doesn't seem to bother me so much during the day, not sure why!
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One of my SEs was intermittent high BP on Aromasin. It can be an SE of the little pill but thankfully most have either no SEs or minor ones. Make sure you let your PCP and MO know. Hang in there, there are other AIs if you need to change.
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Too many pages to go back and read them all so let me ask (again). Is Aromasin 'responsible' for tendonitis in my wrist and pain in my shins?
About 2-3 weeks ago I started with wrist pain. My PCP thought it may be related to the hours I spend on the computer, plus I play games on my Kindle and phone (both touch screen) too long in the evening. I figured he was right since the touch screens really change the ergonomics of playing games. Splints aggravate lymphedema and the tendonitis is in my lymphedema wrist so no injections for me.
The pain in my legs/shins is horrible - mostly when I am driving and then again at night. I don't seem to have pain during the day, just those two times and I can't relate it to activity.
A few pages back I saw several posts about tendonitis - do I assume many have that problem and it is mostly likely from Aromasin? I'm thinking somewhere on this post we talked about leg/shin pain but I can't find those posts now. Is that another 'common' side effect?
I've been on this stuff for almost two years - the tendonitis is new, leg pain is about 6 months old, incredible hot flashes also started about six months ago (hyster in 2005).
Just wondering if these are common side effects before I whine to my onc.
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i get pain in my shins when i am low in magnesium, do you take that? Can't answer re tendons but balls of my feet hurt a lot intermittently and i think that down to Aromasin - anyone else?
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I don't have answers, I have questions and complaints.
Since starting aromasin I have hip pain, arm/wrist pain, high blood pressure and vertigo. The problem I have is when I asked my Oncologist, he said not aromasin and to see PCP. Well I did that today and feel like it was a useless visit. After a couple of questions I was sent home on BP meds and an antibiotic for possible sinus issue (he never looked in mouth, . Ears, or nose). I am beyond frustrated.
Sorry for the rant.
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While on Aromasin I developed carpal tunnel in both wrists, intermittent high BP, severe insomnia, horrible knee pain, elbow pain and intermittent neuropathy. My MO said that Aromasin didn't cause some of these but come on, neuropathy with no chemo, no diabetes, no family history? It took four months on the med to hit with all of these. I told my MO that I was an outlier and quit Aromasin due to the knee pain; I am fond of walking. My MO said that the other AIs would be worse for me and switched me to Tamoxifen. No knee pain so that's a blessing. I am really trying to make Tamoxifen work since there's nothing else.
Some folks have success using Claritin or the generic version of it to mitigate joint pain on Arimidex or Femara. Maybe it would work for Aromasin too? Don't know, didn't try it.
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Netti, sorry for your pain. Dang docs do not want to admit a pill that they gave to you would be the cause of side effects
I just finished my 5 years, asked the MO this past Monday if the weakness and pain in legs and feet would go away now that I am off the dang pill. Her answer "if it is caused by normal wear and tear~~" then do not expect a change....as in old age!
but I am cancer free so guess should be happy to be alive and feeling like I am 80
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Good point. The pain is tolerable when you consider the alternative.0 -
Another question I have is...how do we know what symptoms could be mets?? Do we run and insist on a scan with each ache?? And if the cause is the aromasin, then the two week rule does not apply.
I'm just so confused right now. I felt better while on chemo than I do now. I find this very disheartening.
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I had my cortisone epidural 6 days ago and the improvement is amazing! Have no idea if Aromasin exacerbated my Sciatica, but I do now know the fix for it.
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