Life on aromasin
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Hello ladies, new to this thread. I started on Aromasin yesterday night after not taking anything since August.
Crossing my fingers that this one will work out for me!
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Thanks for the replies. I'm cautiously optimistic that Aromasin will be better. If not, I'll suck it up and probably go back to anastrazole since it's cheaper. It seems like the joint pain from anastrazole comes and goes. It's been better the past couple of days, of course right after my oncologist appointment! But I've been taking ibuprofen every day.
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I occasionally have joint pain that is more like general stiffness (I'm sure I must have arthritis). It really helps to walk during those times and then it goes away. The problem is lately I've had a lot of foot pain which has kept me from walking, which leads to inactivity, then sets up a vicious cycle. I wonder if that could possibly be a side effect of Aromasin? It feels a lot like plantar fasciitis which I've had in the past and was very debilitating. I hope not! Is this something I should bring up to my PCP or my MO?
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bc101, yes I would bring it up to your MO.
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bc101, I have the exact same issue with my left foot. I am positive it is the exemestane and it began at about the one year point. It hurts like hell but gets a little better as I move around a bit. I use a cane when I first wake up to make sure I don't fall! I am only 59 and this is really hard on my soul since I was walking 3.5 miles every morning on my treadmill (or at the HS track in good weather) for 3 years prior to taking this drug.
Now I am fat, tired, grumpy, in pain and wondering what in the world happened to me. I take HB meds now and my BP was awesome all of my life. It is still not too high but over what it should be so my doctor wants me to take lisonipril (135/92 is my reading without the med and I used to be 110/68 ish before exemestane!!) so this drug has really done a number on me!
Not sure if I will continue an AI or not.
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Oh Great, I hope this doesn't affect my BP that is all I need. I have already been battling it. For some reason it seems to have increased over the last few months. I was taking Tamox but stopped at the end of Sept.
My MO said that it might increase my cholesterol. Great, the only thing that was good on my last blood work. I haven't started it yet as I have a small "adjustment" surgery scheduled for next Friday and I don't need to be in a hormonal melt down. My surgeon agreed.
I just wish there was a better way. I tried DIM but it made me so bloated, I couldn't tolerate it. And if I gain anymore weight I won't need to worry about any cancer returning. Everything else is going to kill me first.
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Rettemich, my understanding is the BP issue is rare enough so as not to affect too many of the women taking this drug so don't worry unless you have to! I was just unlucky I guess
Best to you and know that it is unlikely you will have this issue!
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ok so my BP since ending the dang pill has dropped....dang but glad on that. Not enough to get off the med but I seem to have white coat syndrome...especially at the cancer center. Then again, I am here, 6 years from diagnosis and the docs are all happy with me~~
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I will have to watch my BP. I have been on medication for many years, noticed it was increasing on the anastrazole, lowered when I was off, and now starting the aromasin. My PCP added a new med earlier in the summer and gave me instructions to take 1 or 2 pills each day (I'm a nurse so I can check my BP). Will have to watch it now that I have changed my AI. Yikes! It would really stink to go through the surgery, chemo, and all the complications and then get taken out by a heart attack or stroke. There is a very strong history of heart disease in my family (dad had MI at 59, brother died at 50, other brother had first MI at 46 and second at 48, thankfully still alive and doing well). Life would be so much simpler if we could just live without having to think about it all the time..........
Martha
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Brookside, I didn't notice hair loss on Arimidex, but I wasn't on it as long as I've been on Aromasin so who knows
Arimidex was so bad for me, I'll never go back on it. I'll try Biotin and see how that goes.0 -
Trisha-Anne, I swear it's a frying pan or fire kind of thing. When I agreed to switch back to arimidex, I was actually speaking with a nurse rather than the doctor, with him participating through emails to her whenever she (frequently) got stumped. She started by telling me that one of my symptoms was not a side effect of exemestane. "Really? I'm looking at it right here in the full prescribing information." "Oh," she said. "I use this other site. It lists only the most frequent side effects." Ughhh!
Anyway, the conversation was so very frustrating, that all I got out of it was that the doc said if I wanted to switch back to arimidex, I could, that I could take one pill one day, the other the next, or I could take a holiday. I was so frustrated I left it at that. Afterwards, I remembered the horrid feeling of living in a fog. It might have been the arimidex, it might have been PTSD (yes, the horrors of dx and rads really, really walloped me).
I'm waiting for the new meds to arrive, luxuriating in my temporary drug-free state, and obsessing about side effects. Not sure which is worse--Hair Loss or Fog? Fog or Hair Loss? Will the joint pain come back? Will the constipation I blame on exemestane go away? Will I be ever switching from one to the other?
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BrooksideVT I was so sure I didn't want to go back on an AI after 3 years of Anastrozole. But I did and started the Exemestane. I'm doing great. Yes I have a bit more hair loss than on Anastrozole but no one else notices. I do use Minoxidil. But also note I had hair loss before diagnosis too. Just a but more now. Don't assume it will happen. Just try it. If it sucks then switch.
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i had hair loss on Femara but luxuriant hair on Aromasin.......
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Lago, I have always had the receding hairline you have also mentioned, and really do wonder whether those of us predisposed to shrinkage of our crowning glory are more likely to suffer hair loss? Several years ago, at my dermatologist's recommendation, I tried minoxidil, but very quickly developed such itchies I had to stop. I do think of trying it again, but sort of expect the same result.
I'm not quite two years into this dx, about a year and a half into AI's and have now made two switches. I'm really determined to stay on this stuff for five years, but wonder whether I'll be constantly swiching side effects, staying on drug A until the fog grows deep, then on drug B until I can't stand the hair loss, then maybe drug C or tamox? Wish it were easier.
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Brookside I'm afraid our receding hairlines would happen anyway since we had it before. Just sped up a little. Many that have hair loss on Aromasin seem to have more than just receding. My husband used to use minoxidil but found it itchy too. He gave it up and is using Nioxin instead. BTW I am using 2% women's once a day. Myabe once a day won't be as bad for you.
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BrooksideVT, Oh I can so relate about the PTSD. I was a deer in the headlights. I really breezed through the surgery's, but the Rads was another whole issue. I can hardly talk about it without going into tears. The Radiation Dept. sent me a survey about the care and etc. I sent them a book. LOL I will NEVER go through that again. I was completely traumatized by it. I didn't really think that on my own. Had several people inc. a Dr. tell me that. Now to deal with these poisons is just insane. And now that the rads have pushed me into being diabetic. I can see why some people just say forget it. Sorry little vent there.
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rettemich and Brookside, there is research evidence that a major diagnosis like cancer and the subsequent surgery, treatment, complications, etc. causes PTSD. I believe that I had/have some too. I am working on finding ways to cope without pharmaceutical intervention. My PCP offered to give me an antidepressant, but I take too many meds as it is. I talk with ladies who take Ativan or Xanax, sleeping pills, etc., and I don't want to go there. I realize that some people really benefit from them but I would rather not (actually I would rather have a glass of wine or a beer, LOL).
Brookside, when I was taking Arimidex I felt like I was in a real fog (both with generic and brand name), once I took a 5-week holiday that feeling went away. I just started Aromasin this week but don't get the same foggy feeling so I believe it was from the Arimidex.
Good luck to all of us!
Martha
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Martha, think I am like you. at the start, I used to bawl my eyes out at doc appts, they all wanted to give me anti depressants and such. I had some scripts but hated to take them and only did on rare occasions
I found my gym and my sewing machine were better at stress reduction
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Before and during radiation therapy, I took tamoxifen for 7 weeks before developing hives on my arms and legs. Itchy and burning. Then my ankles and feet began to swell and ankles became red and feverish. I showed a nurse at cancer center who said she never heard of hive reaction (it is for some.) I took myself off of tamoxifen. Ankle pain diminished but the hives did not. So I showed up 2 hours early for my radiation appointment, demanding to be seen by MO. The PA took one look and gave me a boost steroid dose and put me on steroids for a week. It took over 2 weeks for the hives to disappear.
Started taking Aromasin (exemestane) 3 months ago. Developed a low level rash and blemishes on my face, chest and center of my back. OK, I can deal as there is no inflammation of itch. But my vitamin D level suddenly dipped while my BP rose. This weekend my knee joints ache - it is hard to get from sitting to standing. I travel for my job - by car usually. It is becoming a quality of life decision. Living in pain. Having little ability to concentrate. Got to think about this "poison" stage of the cut-burn-poison therapy for Stage 0.
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owlgram there are other AIs to try. It might just be the fillers they manufacturer uses that is giving you SE. Tamoxifen is also an option. Hormone therapy will prevent a new cancer from starting. A friend of mine also had DCIS. 2 years later she was diagnosed again with IDC. She didn't have to do chemo but she is doing the hormone therapy.
Sorry you are having such a hard time but I don't see hormone therapy as poison. For people like me with a very aggressive cancer my risk of recurrence is high. I'm 4 years NED and I would like it to continue. I had issues with Anastrozole (Arimidex) but stuck it out for 3 years till it was too debilitating. I switched to Exemestane (Aromasin) in April and I'm 95% improved.
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I am better on exemestane than anastrozole. I have itchy skin and I got several acne spots that became infected. I have ringing in one ear but I had that also on anastrozole. Two years to go I hope I can make it. I pay $5 a month for it.
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Owl, I can so sympathize with the allergic reaction. I end up with an asthma attack if I take any NSAID including aspirin. I get itchie with certain creams or the chlorine pool. A couple of months ago, I had a reaction to cream used at my spa for a massage and started an asthma attack...so I do get it. What I have been told is that when you have an allergic reaction to something, it gets worse with each exposure. Steroids are no fun, I was on precnisone for most of last year for sinus polyps and they are no fun.
Have you spoken to a good ENT allergist about this? I too was stage 0 DCIS and fortunately did not develop any problems on the aromasin and finished my 5 years on it. I would definitely talk to more than the nurse about this. And get an EPI pen just in case
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Proudtospin, I also like to sew. What do you sew? In recent years I have been working on canvas for boat covers (not so little jobs!) but now that we pulled our boat out of the water for the winter I would like to get back to sewing clothing and household items. Before BC I would get frustrated with some of my projects, but now I find sewing very therapeutic...I guess the act of creating something is healing....
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April485, I switched from aromasin to arimidex to femara. I was having terrible joint pain on the first 2; less joint pain on femara. But I developed muscle pain instead. I figured out that I was taking my statin and my femara at the same time. Both can cause muscle pain. I have taken the statin for years without a problem, but combined with femara and it drove me up the wall. I ended up changing the timing and I take femara in the morning; statin at night. No more pain at all unless I overdo the exercise.
My point is, as my PCP pointed out, sometimes it is not one med but the combination of meds that causes the problem. Maybe you can approach the problem from this angle with your doc and see if you can get some relief. All-in-all, femara caused me far fewer problems than the other 2.
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savgigi - glad to hear that Femara is working for you! It's so great that there are 3 hormonal drugs for us to try, isn't it? You're right about combinations of meds. My DH had horrible joint pain while taking a statin and had to stop it. I told him "Now you know how I felt when I was taking Arimidex!" I wouldn't dare go off these meds even for a little while. I take my little white pill faithfully every day and imagine it killing any rogue cells floating around. I really believe it will help me stay cancer free.
rettemich - so sorry you had to go through that trauma. Yes, PTSD is a huge problem for us survivors. Very few of us get by unscathed, I think. I'm hoping Yoga will be my ticket to a calmer place. Oh and I just started an antidepressant and psychotherapy. I just had to. Each of us must find a way to our inner peace, whether that's meditating, walking, sewing, or whatever.
Trisha-anne and Rhody - I noticed that like me, you both had 1-2 positive nodes. Did your docs at any time recommend radiation? I had a micromet and they felt that I didn't need rads, especially considering my low Oncotype and ki-67 score. Just wondering...
Namaste everyone!
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Rhody, I went to school for design and used to make all my clothes in the olden days, sort of stopped for a while and then about a year or so before my diagnosis, splurged on a Bernina machine for embroidery. Was just getting into learning the thing when the ball dropped on me~~I now sew for fun, toys for little folks in my life and home dec projects. I have started following a facebook page on Sewing, manno but there are some fascinating things folks do these days.
Canvas is tough to sew on so you must have a strong machine and hands to do that!
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It's great to hear you are getting creative! Me too - I am going to sew(with help) my very first 1950's rock n roll skirt. Went and bought the black with pink spots material, already bought the net underskirt(not ready to make that yet - looks very complicated). Sew exciting hee hee:) Got to be ready for 29 Nov for the 1950's dance night.
I've also recently started making my own jewellery, bead necklaces bracelets and earings. I'm looking forward to using the pencil blow torch to solder links and things.
I'm making them into sets to give to friends and family at christmas.
Now been ok on Aromasin for 2 months. I do have more aches though and the carpal tunnel thing flares up now and then. Just had the results of a blood test and I am anaemic so 630mg iron tabs are causing a misery of their own! I have discovered prunes are my friend.
x x
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Songbird, love love prunes!
I think being creative is soothing and helps with depression and so many other things. Jewelry sounds great, have wanted to learn to do some of that. Lately I seem to have arthritis in my hands so some things, well they just take longer to do.Also when I was diagnosed and had all those dang biopsies and such, some of the best folks to turn to for help or a driver to junk, were my sewing pals!
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OMG I would love a Bernina machine machine. I made a lot of my clothes in high school. Now just use it mostly for alteration. I too went to design school(s). Currently unemployed designer
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my Bernina is currently gathering dust~~I have problems tightening the needles with my hands and then they break during the embroidery. had machine serviced and no issues but I just can't tightened the needles. I end up with my good old vintage singer for projects, much easier than fighting the machine!
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