Life on aromasin
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Yorkiemom - maybe there is a connection. I too had a terrible time with menopause; drenching hot flashes at work - I'll never forget, I was typing some loan documents for a young guy when I got one. He saw my red, sweaty face and said "Are you ok, shall I call someone?" So cute and he was red-faced himself when I explained what was happening.
I am also extremely allergic to pretty much all meds. The docs and I have to juggle dosages; once I fainted from a too potent BP medication. It is such a nuisance.
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My menopause symptoms lasted around 10 years (yes - 10!) But were not the full gammut of symptoms. I had very bad hot flushes, sorry lol you call them flashes. They were really bad. At night I'd get at least three every hour, so sleeping was pretty hard. But I never had the mood swings or depression etc.
They gradually eased off, until dx and they were just happening randomly by then. When I started Arimidex they came back but not over the top. I had a pretty rough time on Arimidex and couldn't continue on it, which is why I switched to Aromasin. My hot flushes have changed on Aromasin. I still get the occasional wave of heat, but mainly I'll get a really weird feeling that has heat in it, but also a feeling like there are thousands of hot ants under my skin. It's pretty awful and I can't sit still when that happens. I don't get itchy - it's hard to describe the feeling, but it's not pleasant at all. It's sort of like when you get restless legs - but it's my whole body that restless. Luckily it doesn't happen too often, usually only once or twice a week.
I take magnesium everyday for the restless legs and that keeps it under control. I pay for it if I miss a dose, so know it's working.
I think we are all different, and our bodies react to different meds. I too have super sensitivity with meds (and shampoos, deodorants etc) but not as bad as you Dogs. My main problem is an allergy to bandages (which was fun after a mx and every three weeks while getting herceptin) and I had a servere reaction to the dye for the MRI.
My onc also seems to think that se's from AI's are all in my head. Although he couldn't dispute the arthritis that was Arimidex caused, so reluctantly agreed to try me on Aromasin. I hope that in 10 years time we'll have contributed to the knowledge out there for women on AI's - that is if our oncs will document our tales! lol
Trish
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Take a look at Dr. Susan Love's Army of Women website. She was diagnosed a year ago with Leukemia. For those of you who don't know her she is a breast surgeon. She has many articles and books. She has started the Army of Women so if you give her your email she will notify you of research studies around the country and if you are eligible then you can follow up to try to be a part. She wants to find the cause so other women do not have to go through this terrible disease. Anyway she just wrote a small piece on how she now understands living with the aftermath of cancer treatment. Very well said and I have passed it on to some in my family. She says right in it that the medical community has not given it the importance it should.
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Here is what Dr. Susan Love said,
June 8th marked a year since my diagnosis with leukemia. I have experienced a lot in the past year, physically, mentally and spiritually. My biggest surprise has been a more personal understanding of the permanent side effects of treatment. Sure, I had heard of chemobrain and believed it to be real, but now I know what having chemobrain feels like and how it affects my daily life. Numb toes and neuropathy may be a small price to pay for being here, alive and kicking, but it is a constant reminder of what I have been through.
I have given a lot of thought to the collateral damage that results from cancer treatment. The fact is, it is rarely talked about and only starting to be acknowledged by the medical profession. I think part of the problem is that doctors look at the survivors and compare them to the people who died. Their reaction is, “Why are you complaining? You are lucky to be alive!” Meanwhile, survivors compare themselves to how they were before getting cancer and notice all the damage that has been done by the treatment. Yes, we are lucky to be alive but wouldn’t it have been better not to get cancer in the first place? Of course! Yet there doesn’t seem to be much appetite in the research community for moving beyond the cure to focusing on prevention or finding the cause.
One of our goals at the Dr. Susan Love Research Foundation over the next year is to document the collateral damage that current therapies cause and bring the true price of the cure to light. Until we testify to the side effects and complications we experience, there will be little incentive to look for prevention and the cause of the disease.
All you survivors—you who have experienced the physical and emotional toll of cancer treatments–please join theHealth of Women (HOW) Study where we will be collecting data about your health, treatment and later this year, side effects. And those of you who have not had breast cancer or any cancer, please join as well so that we can figure out what might be the trigger that causes this disease. We need all of you to share your histories, help quantify the side effects of treatment, and to add your voices to the call for more emphasis on research into prevention and cause.
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I have done this study and submitted my answers regarding my SEs from treatment. Thank god for Dr LOVE!!
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Sickofpink, I've only been on Aromasin since 7/5, but so grateful that I feel fine. I do take Celebrex every day for arthritis, and it may be helping with keeping joint pain away.
Very interesting news about Dr. Susan Love's study.0 -
Hi everyone I haven't been on for a while cuz I've decided to go off Aromasin and have been completely off for about 3 weeks, so I see my Onc next week anyway and see what she says now. That article was right on the money--I've said this so much--when all treatment ceases (oper. chemo and rads) it's almost like u'r done and far from it. I'm doing ver well keeping cancer at bay as is my sister, but SE's are nonending I'm hopong for relief but I know now there is permanent damage---is it side effect, age, or what--I have never had all these problems and they all came at the same time within a few months. And everytime I get a scan or test they find something so it's not in my head it's there and I get PT which now something else has come up so maybe the PT will have to stop and I stilk have a bladder infection for like 6 months I've been on different antibiotics. and it's different than what I got yrs ago--it doesn't hurt to pee at all--it's all pain in my bladder just pain. WTF I would like to hurt just when I pee--So many SE's and it takes a while for some Drs. to really listen because the cancer is under control and that is their job. Wow I'm on a rant Sorry I just took a pain pill and at first I get all jibbery then I calm down hahaha I should have stayed off the computer cuz I'm probably not making much sense now.But I must have said something that makes sense and after all this typing I'm going to submit this-hahaha so u don't really have to read this rant of mine cuz we all know I;m a horrible typist, well I worked for the government no one noticed.
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cami, What you wrote all makes perfect sense. Maybe it's those pain pills?
When I took a break between arimidex and aromasin, it felt wonderful. I saw a glow return my skin from returning estrogen. All the pain and SEs melted away. It was a year after starting chemo and I think my body really needed the break from all treatment.
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Cami- I went off femara in October and got a script for aromasin in February but have not filled it yet. I had such awful side effects from Femara. Hurt everywhere and felt like I was 90. I have been diagnosed with so many things in the past 2 years. Lymphadema, fibromyalgia,sleep apnea, episcleritis. I had 4 surgeries in 8 months but no chemo or rads. I don't know what caused them all.
I see my onc next week. Not sure if he will support my decision or push me to take the meds; I am just afraid to completely destroy my quality of life and go back to not being able to work, etc.0 -
Ginger48,
I think the only way I will stay on AIs is to take OTC meds for the muscle and joint pain. I stopped taking aspirin for a week before nipple recontruction surgery and I was amazed at how much moderate pain I had in my joints and muscles from hip down. I felt 20 years older. I'd been taking aspirin once or twice a day at most.
I'm finally managing my eye SEs, but won't go back onto arimidex because the vaginal dryness was unbearable.
It's taken me a year on two different AIs to find which I can live with and what works in controling the SEs. It's still a journey.
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Camillegal - hang in there - Im sure you know about quality of life - I wasnt feeling it on Aromasin. I hope youll feel better soon. It took about 3 months for me to come around after stopping. Wishing you all the best.
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Camillegal - you made perfect sence to me, in fact I need to double check and make sure I hadn't written that (and with my memory defect I could have and not remembered) I know exactly how you feel and took myself off a while back. Took everyone advise and contacted my MO but was told he didn't have time to see me at this time. Well I'm suppose to see him in August and lets see if they remember this time. Last visit they totally forgot and had to call to remind them (they tell us that "they" will call us when it's time for our appointment). One friend of mine who was dx the week after I was has taken herself off everything including the doctor, says she has just had enough. Every time she had a problem they were only able to create another couple of new problems while they were addressing the original problem without ever doing anything about that problem (Does that make any sense?)
After a whirlwind trip to Texas over the past two days and accomplishing nothing, I'm more exhausted then I usually am and my trigger is pretty quick this evening. 5 minutes on FB convinced me I just need to call it a day and go to bed since every other post was sending my over the edge (they were all political post from both ends of the spectrum) Oops! Here I go again, better get off this computer and into bed before I implode! Love you guys and thinking of each one of you!
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Seabeal relax now u'r home right? Drink some warm milk or take meds--I'm big on pushing drugs--I could make a living out of it. Oh if the government is reading this I'm kidding, I could barely walk to the door let alone stand on the corner selling anything anymore. LOL
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Thanks camillegal, I'll be home for a few more days then back to OKC to be with my DH. Was suppose to go back on Monday but staying to take one of my fur babies to the vet, he has a growth on his leg and now I'm terrified he has cancer. The good out of this is that I'm not thinking of myself, the bad is that I'm worried sick. I love those babies so much and have spent more money on their vet bill over the past 5 years then I spent on peditritions for 5 kids over their life time but then the dogs have never given me as much trouble as the kids did. They're just lucky I love them to, hahaha.
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Hmm, I should ask that about the percentages... though as my sis says, a lot of it is just voodoo. I wonder if I stopped the Aromasin, would my symptoms go away? I was on Arimidex for 3 mos initially, shocked by the daily SEs. Off for 2 weeks, no real difference in how I felt, and they started me on Aromasin, now 9 mos. At first better, after a month or so just the same as the Arimedex. Just watch me slowly try to pick up the newspaper in the morning!!!
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Oh Lisa that's awful, u feel like u'll find relief and it doesn't happen and yet I know people who do OK on any of these meds. It;s just our bodies that can't tolerate these drugs and u have to wonder why. I don't blame u'r sister for saying that cuz it;s till a mystery and I don't care how much research is done we are all in the same place, chemo, rads, operations--I would think that some don't need all of this but most are getting it. Its now called protocol--how does that work, we all seem to have different types and stages of cancer yet we all take the same crap--Ok some more and some less but basically the same.
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Yeah. I will ask my MO when I see him Aug 1. He will ask me - can you tolerate it? And After the first hour or so, i do walk, started bike riding a little and exercise class, go to work every day. I just feel my shoulders and hips and hands a way I never did. And getting up and down!! i guess it might be like arthritis. PS I complain here but mostly don't mention it to others. Tho I wonder- what if it doesn't work and I go throught this stiffness and aches for nothing!!!
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Lisa Now I would tell my Dr. I didn't before and I did start with arthritis too so I figured that;s it, but over a short while lots of bone stuff happened doesn't mean it will happen to u, but maybe u should say exactly how u feel and talk about it to u. Dr.
And again I think personally most people think Oh u'r done with all u'r treatments so u feel good now, well it hard to say how we really feel so we act OK unless it gets to the point of seeing physical aches and pains and we blame arthritis.
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camillegal, when my MO started to use the term 'protocol,' I asked him if that was the medical equivalent of 'one-size-fits-all' in clothing. He winced, but did not defend or deny it.
I have became quite wary of any treatment described as protocol.
Carol
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Good point.
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Carole hahaha that's how I meant it too---I would use the word protocol differently, but that seems to be the word of the day with cancer treatment and I too don't like it--feel like I'm on a factory line and we are not the same in anything. Just like u said One size fits all--now they say most--cuz it can't be LOL
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HI all,
I just lost my entire post and have no idea why! anyway I did right in awhile ago and am still wondering if the aromasin is what made my ring finger on my right hand hurt to the point where I can't even bend it all the way. The other fingers hurt a little to ben too. also I think my fatigure is lifting a little as I have started riding my bike more and more. but after a day of it,I have to take it easy the next. I guess the rads take their toll too.
I have had some unbelievable restless leg from my thigh down to my feet while in bed some mornings. It's so uncomfortable it's hard to go back to sleep sometimes. this happens a couple times a week so far. It's almost unbearable until I squirm so much it finally goes away. don't knowif this is from the aromasin or not.
Trisha-Anne- I was at the beach a couplple of times recently and had the feeling that ants or something was crawling under my skin on my back or that I was getting little pin-like pricks on my shoulders, etc. really weird and different, a little itchy but now bugs anywhere. wonder if this is what you experienced and if it's just another SE of the AL???
Really I've been pretty good so far on the araomasin. My biggest complaint is the increase in appetite and i've gained 20 lbs. such a bummer since 2 years ago I worked so hard to lose 45lbs. I find it very hard not to enjoy more things that I shouldn't even though I don't eat a lot of it. Even with the miles of bike riding the weight comes on. now have to buy bigger clothes and that really stinks. Anyone else gain weight on this stuff?
hope you all have a nice day and are enjoying summertime!
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sorry about all the misspellings!!! I need to proof read and use a bigger screen. I am on a little netbook.
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Beach u have no idea of misspelling til u read my stuff. I blame everything on Aromasin, Today I see the Dr. and I'm hoping for another drug, but I thought it has to come in generic cuz they are so ezpensive. All this just sucks-in fact it sucked my boobs right off.
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camillegal- you just cracked me up and the good laugh is the best medicine sometimes!!! Yes it does suckkkkk but whatcha gonna do? I take the generic form. but you maight change al anyway. What are your SE? I haven't read too much on the thread.
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Beachwalker Well I saw my Dr. and I'm staying on Aromasin--I didn't see much differnce so as we talked and talked I thought what's the difference. damage is pretty much done. Mostly my bones, back with degenerative disc stuff, scoliosis, severe arthritis--I just blame everything on that.?? It just all happened so fast, I'm a crooked mess--I started out with moderate arthritis--then boom everything else started going crazy so I started PT--still in pain and more stuff-I'm confused about so much cuz I'm still going on and on with SE so who knows anmore. U might not get the same or hardly any. Witch would be great.
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well, here's a fun thing. I rode bike, went to exercise class, and took ibu last night before bed. I don't know what did it, or if it was just luck- but I woke up today not hurting! NO hanging onto the bannister, no groaning as I picked up the newspaper, I felt 98% normal! What a nice day. Of course I speculate, or wonder if maybe the awful stiffness and such is going to wane since it's been a year, or... at any rate, it sure felt good!! wondering if I should take ibuprofen tonight or just see what happens...
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Lisa that's wonderful to hear--it must be a great feeling to just bend over and not ache. Live on the edge girl don't take anything tonite.
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Saw my onc on Wed and after having a pretty long break from Femara he convinced me to give Aromasin a try. I had terrible pain and stiffness from Femara so I am keeping my fingers crossed that this is better...
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camillegal-
good luck with the PT. I had it once after knee surgery (miniscus repair that didn't work) untill having the PT. I did the exercises and haven't had any pain since.
lisa- how wonderful to feel normal for a change! we should all be so lucky! I have to hold on to the railing when first going down the stairs in the morning, feels like i'm 80 years old, but as the day goes on it seems to get better and I just fly down normally. also my fingers are rather stiff. I can deal with these as long as this is about it for SE. my MO said usually on aromasin you hurt until you start moving and this seems to be true for me, (especially after sitting in one position for awhile). Next week I go to florida to visit some family for 2 weeks. I took an isle seat so I can move around the cabin a bit. I get restless leg too.
ginger- hope you see impovement on the femara. sounds like it can only get better
can't believe i'm writing at 2:00 am. just slept for 3 hours and am wide awake. time to take leunesta. it really works for me!
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