Arimidex - Coping with the SE's
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I do have thinner hair (fewer hairs per square inch of scalp) than I did pre-chemo, and the most likely reason is Arimidex. I lost all my hair from my chemo regimen (4 rounds of Taxotere & Cytoxan), but it came back nice and thick.... and then it thinned. I had started Arimidex 3 wks after my final round of chemo, so I guess the hair loss thing took a few months to kick in, kind of like the other SE's from Arimidex.
Even the woman who cuts my hair (and has been doing so for more than 25 years) noticed that it's thinner and finer than before. I don't have any bare patches, and there's no particular area that's thinner than anywhere else except maybe my temples -- or, more specifically, the "corners" of my forehead. My mom's hair was thin there, too. I think it's an old-age thing that's accelerated with our extreme estrogen deprivation.
I mentioned my hair thinning to med onco and asked her if it could be due to Arimidex. She confirmed that it was a known SE with the AI's. She said there's not much mentioned about it in clinical trials because hair thinning "is difficult to quantify." I think it's probably one of those things docs and researchers consider not very important in the grand scheme of things when we're trying to outlive our tumor.
Really, though... I've always had nice, thick hair; and this p*sses me off. I wouldn't have changed anything if I'd known ahead of time; and it's not like my hair is patchy or I'm bald all over again. It's just one more thing, if you know what I mean.
otter
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I've been on arimidex for three months now. Never had depression like this so I'm now taking Zoloft and it seems to help. Also have the mouth sores - ouch! And dryness all over my body; nails that get ridges and break off. Not to mention weight gain when I'm trying to LOSE! What a mess! Hope it's worth it.
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Hi All,
Ok, I just thought that I would add diversity to the conversation about hair. I am one of those that looked like a gorilla when I first started Arimidex - i had a massive outbreak of facial hair and fuzz. My hair grew back super curley and while it might be a little bit thinner, the curls make up for it. I used to curse my dad who was very hairy when I was younger - I had the dreaded "monobrow"; now I thank him for the "hairy gene". The one thing that I have noticed is that my eyebrows have thinned out alot as have my eye lashes. It is really amazing how differently we all react to these drugs.
I am struggling with the joint pain and increased cholesterol. I did have big time blues when I started, but my mood has smoothed out now that I am over a year in. I also started taking a regular dose of diazapam at night to help me sleep, lower my anxiety and help calm some muscle spasms I get regularly from herniated disks in my neck. Never a dull moment.
I hope that those of you suffering from depression keep working on it and trying different medications to help. You should not have to suffer so. My husband had a bout of depression and it is something that needs to be treated, just like a broken leg, just like cancer. Don't try to muddle through too long - there are lots of options out there to try and it makes such a difference to your QOL.
Best Beau
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Ginger:
I started Arimedix last August. I had already been on Lexapro since 2008 to help with peri-menopausal symptoms of not sleeping and mood swings. Lexapro is one drug that requires you to take it for a couple of weeks before you see a difference. I don't think I could have handled the SE's of the Arimedix if I had not been on the Lexapro. Of course, change drugs is your choice, but you might want to talk to your doctor and see if staying on the Lexapro a little long will make a difference.
I hope this helps. Hang in there.
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Otter I too have always had a very thick, thick head of long hair, but my hair dresser told me my hair was getting very thin in the front (like you start doing with male pattern baldness) after I had a trip to Florida this past summer and my scalp got blistered really good. I had never had this happen before that I remember but it was extremely hot. She told me it was because my hair seemed thinner. I have also noticed it seems more frizzy and fuzzy in the front area. Now I am by no means bald or close to it, but when you are getting a handful of hair out of your head everyday as I have been, if it continues for 3 more years I could easily end up bald. So what to do? Try a 3rd med and see if the hair loss improves continue on what I'm taking and hope the hair loss decreases? Stop taking it all together and take my chances. Guess these are questions to discuss with my Med Onc. But I know I don't want to go through another round of Breast Cancer either. Does it ever get easier?
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No hair loss here but my doc said I have vaginal atrophy. Very dry inside and the pap came back normal. the comment was obscurly inflammed. So the cells under the microscope that they look at are neg for malignancy but are inflammed. I asked if that is due to arimidex, she said yup it is. I have to have a follow up in 3 months for another pap.
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Hi everyone, this is a very interesting thread. I am to start arimidex soon. Just finished my rad tx on Tuesday. yay! I had a hard time getting through the rads. I got sick right away and had extreme shortness of breath. The RO kept telling me that it wasn't the radiation, that I had the flu or a cold. She also asked me more than once if I had started my meds yet, because I was an emotional wreck. I started feeling like I was a crazy person. I am almost 60 years old, I know when I have a cold or the flu. Once I started taking pain meds for the skin issues I relaxed some and got through the rest of the tx. But the breathing is still an issue.we've done a Chest xray and a chest CT scan that came back clear. Another big Yay! So I had a pulmonary function test and a methocholine challenge test, which I failed. My MO has said I can wait on the arimidex til after we figure out what is happening with my lungs but I should start within two weeks. I have an appt with my PCP for Tuesday morning to go over test results.
So my daughter and I have made plans to go on a weeks vacation starting on April 29th. I am now, after my experience with rads, wondering if this is a realistic plan for me. I know everyone is different and we all are affected differently, but do the SEs kick in quickly or is it a build up kinda thing? I am trying to keep an open mind.
I post on a couple of different threads so I know the beauty of going through this journey with others in the same boat.
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macatacmv-hope you feel better and can make your trip. Getting away might lift your spirits.
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macatacmv, I think you should be fine for your trip. That will be just a bit over 3 weeks from now, and I think it generally takes a couple of months for the SE's of Arimidex to hit (if they ever do).
My med onco said it was typically around 8 to 10 weeks (that's an average) before her patients started really feeling the aches and pains (etc.) of an AI. That was the case for me. I need to point out that I was just coming off chemo (4 rounds of Taxotere & Cytoxan) when I started on Arimidex, so T/C was my standard for pain and suffering.
Besides, and as you've probably read on this thread, the SE's of Arimidex are really variable. You might not get them at all!
otter
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macatacmv...My SE's with Arimidex didn't start until 4 weeks or so after I started taking it and they weren't bad until about 6 weeks which would be well after your vacation. Hopefully, they will never be bad for you at all!0
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Thanks for everyone's input. I picked up Femara today and the second SE listed was hair loss. UGH. . I will try it and keep my fingers crossed that I don't experience any SE, especially hair loss. It's like taking two steps forward and one step back. I naively thought once I was done with chemo and radiation, I was home free. It is so discouraging. :-(
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Go into it thinking that you will be fine. Most people are, and remember that we are REALLY LUCKY to have this drug. Very few SEs could be worse than having a recurrence of cancer.
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Thanks ruthbru for your words. I was thinking the same as I was catching up on all the posts. As JO-5 always said, 'SE's are easier to treat than BC' (especially recurrence I think). If you are having big-time issues with one AI there are others to try and all kinds of supplements. This journey certainly takes patience.
Another thought that came to mind about our Med Oncs and their propensity to downplay our SE complaints is perhaps they are also trying to buy time before suggesting a switch to another AI, with it's own possible set of SE's, because they realize SE's come and go, become manageable, even out, etc.? I mean, really, can so many of them really be that clueless?
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Re hair loss. I read on another thread that people have had luck with biotin, which is a B vitamin. Several people said it worked for them.
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Thanks everyone for the imput. I just talked to my daughter on the phone and am feeling more optimistic. I am usually a very upbeat person. I realize that this is a major change for my body and I need to give myself time to adapt and cope. So I'll keep moving forward and see what I can enjoy about my life today. A walk with the dog, feeling the sunshine and listening to the birdsong.
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I switched from Arimidex to Femara because of astonishing joint pain - and the joint pain IS better (it's mostly my hips, and it feels like my back is compressed), but - the hot flashes seem to be more, and more intense - though that could be due to the fact it's getting warmer out.
What I'm having problems with is anxiety/depression. I REALLY don't want to go on Effexor (was on it YEARS ago). I see my oncologist on Wednesday, so we'll be chatting about all of this.
So much FUN!
Hot and stressed Purrs,
Jenn
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Bogie,is there an alternative to Arimi? I got an office sample so it was the genuine Arimi and took it for 2 weeks,had every side effect on the list and finally the chest pains subsided a little but the mouth ulcers were severe and got so bad I had to stop the Arimi,I was crying all the time and depression,achy in the jaw and chest and then all over,dizzy confused,couldnt remember my own ph number! I could barely function on that stuff, I could not get to sleep at all,my mouth burned so bad,I had to apply Kanker sore sticky yellow goop several times a day and night. Could barely talk,my tongue was so swollen and then I would be wheezing and out of breath walking from the curb to the elevator and getting into my office.. I finally had to stop taking that awful stuff! Gonna see if my GP can get me a new MO.
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HI Macatacmv,
I just want to urge you to enjoy your vacation! A couple of months after chemo, we took our kids to Disney for the first time ( and probably last). I had still had neuropathy and with the start of Arimidex, the onset of arthritis, blues, etc. Before I left, I discussed with my onc how I wanted to try to enjoy my time on vacation. With his blessing, I took a pain pill once a day and an anti- anxiety pill as needed. It was a great vacation, but i would not have enjoyed half so much without the help of some pain meds. I was walking 8 hours a day and my feet were on fire with the after effects of neuropathy. The pain pills took the edge off so I could have fun and not get cranky.
Have a wonderful vaca!
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Hi Ladies.
Sunflower, I want to thank you for the cocoa butter tip for vaginal pain. I have been on anastrozole for only a few weeks and this SE was pretty bad. I have used the cocoa butter for only 2 days and feel total relief! For others with this SE, the tip was posted on April 1st.
I am also going to mix up a batch of the gin-soaked raisins to see if the hip pain will subside.
I love the non-drug solutions I find here, thanks everybody!!
Barb
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Hi all, hi mimi,did not know you were here till I posted, hope you don't mind my barging in, the hair thinning line caught my attention. I am on Arimidex and had the hair thinning also, especially noticeable where I part my hair, lucky me and you! I have terrible knee pain, if I kneel to wash the floor, I have to hold on to something to get back up, grunting like I were 80 years old. Going up the stairs is not so bad, coming down, so bad. I have been on it for 2 and a half years, initially I could walk it off, not now. Just paid $120 for a 3 month supply so I'm just going to suck it up, take aspirin, that helps, MO wants me to try a different AI after the 3 months, but I am afraid of what it would cost. Stuck between a rock and a hard place for now. Karen
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There are so many great topics on bco.org it would be difficult to see them all - what are your favorites?
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Karen - scrubbing floors on your knees! Nooooooooooo.....oooooooo...ooooo! Not allowed. That's what mops are for. Gentle exercises, to strengthen the Quad muscles will help, all the supplements everyone seems to be taking, and MY FAVORITE: ACUPUNCTURE.
Well, for the joint pain. As Barb knows, it's the COCOA BUTTER that really saved me
ETA for Karen - also going GLUTEN FREE was a major factor in reducing joint pain. I went from taking about 12 ibeprofen a day to NONE. The gluten contributes to JOINT INFLAMMATION in some people with "sensitivity" even if we don't have celiac disease. No "scientific proof"- but fee so much better, I don't mind not having bread. used to use Brown Rice bread, dense, dense - and just extra calories. OF COURSE, none of the Five Whites: bread, sugar, rice, pasta and I can't even remember the other one. food we eat can really, REALLY effect how we feel.
The joint pain is INFLAMMATION - and with NO estrogen, the "drying out" contributes to it. There were days I couldn't walk downstairs - even straight legging it. SO much better now. Gentle walking, exercise, MOVEMENT, helps.
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Karen - hey! Yeah for you and I for the the hair loss... NOT!! As for joint pain mine developed in my knees while I was taking Tamoxifen. There really wasn't significant pain as much as there was popping and creaking and snapping in them. They do occassionally bother me especially the left one. I hope it gets better when I come completely off all meds. I did try glucosamine chondritin per my primary care doc and it simply didn't help and I stopped taking it. Those of you it helps I am so happy for.
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Exercise also helps with mood. Just a brisk walk releases the endorphins which helps.
I started taking Biotin about 2 months ago but read recently that it can take up to a year to see positive results (I'm taking it for my really horrible, paper soft, nails).
spunkyboobster, I find that being on these boards can become a way of life that causes severe neglect in other parts of life so I no longer spend hours each day here. I come to this thread because of the valuable information that can be gleaned. I do the "daily" exercise thread to keep me motivated to move; post on a weekly weigh-in thread for further motivation to watch my health. One or two simple game threads and one or two prayer threads. I don't post on them all every day. Occasionally I'll see something on "Active Topics" that I may post to but that's about it. I would guess I no longer spend any more than about 1 to 1-1/2 hours on each day.
Matter of fact I'll be off in about 10 mins - my Kindle is calling.
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mimi1964, sorry the gluco/chond didn't help. Did you take it, without fail, everyday for 4-6 weeks before giving up? I know it does not help everybody but it also takes lots of time to see results.
Don't forget about the Vit D3. Getting those levels up may help as well with joint issues.
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Patoo - yes I actually took the gluc/chond for about 3-4 months and I've been and I am still taking Vit D3 everyday.
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Just goes to show how very different we all are and how our bodies react. Sorry you are having so many issues but glad you are toughing it out. Are we having fun yet?
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Ruth, can you live with me? hahaha.... I need you following me around talking in my ear all the positives! Thanks for your imput. Ginger M.
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My worst symptom is the tingling and burning sensation in my hands, fingers and wrists. I've been taking Arimidex since November. Lately I've been having difficulty sleeping because these symptoms wake me up; they are worse through the night.
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Mrs M I too have neuropathy and I hope it doesn't get worse. I have it the worst in my feet but also in myhands. I started getting it with chemo and noticed that Arimidex made it get worse. I don't know yet if the Aromasin is effecting it or not. The electrical like feelings hurt and burn and can be very shock like. . I have had them now for about a year and a half.
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