Arimidex - Coping with the SE's
Comments
-
Might I just sneak in here for a moment and see if anyone else on Arimidex has thinning hair - I mean really thinning like I can see pink patches - me, who had oodles of thick hair! 3 years of arimidex and I look like I'm going bald! (not shedding, many hair follicles just no longer seem to grow. what does grow grows just as fast as ever - need haircuts every 6 weeks.
Or is there a better forum like the Hair forum? Or create a new thread?
ps about aches & pains I too used wrist splints and they saved me - I haven't worn them in over a year - same with aches & stiffness - comes & goes - for me it's mostly gone. just the darned hair thing.
0 -
Flanelette, I used Penguin Cold Caps while going through chemo (and kept my hair while going through chemo). In that process learned some things I might try while on AIs, to prevent any possible hair loss/thinning.
- Cold temperatures stimulate hair growth (this has been known for decades) and there is a kind of cold cap called Elasto-Gels, which I do not recommend for chemo, but which I would suggest are worth a try for AI hair loss. You can put them in the regular freezer at home and wear them for an hour or so a day, one or more times a week. It may help prevent further loss and even stimulate new hair growth. I coach new PCC users so have a demo cap at home, and can plop it on my head if I feel my hair is thinning.
- While doing PCCs I also learned that iron is extremely important in preventing shedding and loss. (PCC users would have PFC shedding that could last weeks or months. We now know that by taking iron tablets, the shedding stops very quickly. Chemo kills the stomach's ability to absorb iron, and that affects hair loss.)
Anyway, perhaps some cold therapy and some iron will help prevent any further loss? Just a thought. Hey, the Claritin idea worked so I might as well toss this idea out there too!
Cheers,
Susan
0 -
Susan, excellent information and advice!!!
0 -
Flannel - are you taking BIOTIN, with good multi vitamins? I haven't noticed hair loss on A, but just the "moving" hairline, slightly larger forehead of a 67 year young woman ( same hair line chances I saw in my Mom as she got older) but do know BIOTIN is highly recommended for good hair health.
vivirasslena - LOVED your video. So, so sorry how difficult it has been for you & your family. Wish Oprah was still on, that would be the perfect venue. Haven't watched Dr. Phil, so can't comment. Thought of my "multi color" clown wig when I saw yours. My chemotherapy was during the HOT Boston ( "Bawstaahn") summer - and I had fun drawing on my head with Face Crayons, tho' brand I used melted when I got sweaty, so my "art" became very, ah, well, unintended impressionistic.
Am sure you will succeed in finding the right TV situation. Have you thought of contacting Robin Roberts? She's another bc heroine.
All good wishes to you...
0 -
Has anyone stopped taking Arimidex for a few weeks, and noticed any difference in the joint pain? I have been on this for 2 l/2 years; insomnia once in a while, but the worst is the feet pain and loss of energy. I know some people have "taken a break" from the Arimidex at some point in the treatment. Any words of advice/info? Thanks.
0 -
marm
No advice - I had to stop after 3 months at doc's orders because of severity of pain in my hands, after treatment, restarted 6 weeks later. Never that bad again. I have NO IDEA what would happen after 2 1/2 years. Talk to your doctor. Really.
BUT, BUT, BUT - I know just what you're experiencing - it will be 5 years for me in August. I was going to "continue" - but really don't think I can, physically OR emotionally. THE LACK OF ENERGY - is worse for me than physical pain.
The ONLY WAY I've been able to do the almost 5 years is: acupunture, massage, very limited food selection, gluten free, dairy free, NO sugar, NO pasta ( none of the whites), and I am still so over weight it is terrifying.
0 -
Sunflowers, the biggest chance of recurrence is in the first five years (dropping every year out), and you continue to have protection after you are done for at least several years beyond. So, I think if you have gone the full five years, you should be very proud of yourself and know you have taken it when you needed it the most and when it would do the most good.
0 -
thanks ruthbru, it is SO frightening, really feels like a crap shoot. But this last year has been the hardest, everything everyone already knows, AND, I have been SO proactive about doing everything I can to stay as healthy as possible. Beginning to wonder, honestly, tho I'm loathe to deal with it as a possibility ( being the Queen of DeNile helps) if age is a factor, I'm 67.
Had all the blood tests imaginable, and except for slightly elevated calcium and glucose, all is well. Will have another bone density test next Fall. Went thru the proverbial wringer as local doc's labs doing the Vitamin D test were SO INACCURATE, ( 26, then 78 when retested 7 days later!!!!!) which is a kind word to use. I am enraged at the poor quality of the work done. I can't be the only one getting these ridiculous results, and wonder if anyone else has almost been given the wrong medication as I was, because of it.
0 -
I know just about exactly how you feel because my 5 years are up in August. When I started I thought that there would SURELY be some definitive answers by now (obviously, I was very naive about the slow pace of research/trials etc.).
Yes, age is a factor. My DH was shocked when he had an x-ray for another reason to find out that he has some arthritis in his back. To which I very sympathetically replied, "Of course you do, everybody our age has some arthritis. Duh!"
0 -
Thank you susan and sunflowers - will check out Biotin nw on the net, and will ask my oncc when I see her net about the gel-caps - makes sense andd so very simple. - I do not shed at all. After chemo my hair grew in so fast, thick & curly. that was the silver lining. then the hair went straight. yuk. then, with no shedding, grew thinner & thinnner. I know it's the arimidex, but prefer this to the possible other. No don't take a multivite and no iron - have become very sloppy, just vit D and clacium & magnesium (sometimes).
By the way, somewhere here I picked up the idea (Ruthbru?) about golden raisins steeped in gin (that must have juniper berries in it) My batch is ready. As per Dr. oz am going to eat 10 a day to see if it eases arthritis pain - am going to start right now, in fact! will let you know - would so love it if it made my hair grow! haha
0 -
quick report on raisins and gin. I must have bought very dry, tough raisins. They were covered in gin 2 weeks & a few days ago and there is STILL some loose gin. so I stirred it up and ate ones from the bottom. Hey - what else to do while one's DH snores on a saturday night? (besides prowling the garden in the dusk dead-heading daffodils and tulips?)
0 -
If all else fails, toss the raisins and drink the gin!
0 -
why glden raisins? will the brown ones work?
0 -
needs to be the white raisins according to my auntwho let me in on 'the recipe' ...produces a natural cortisone effect....
0 -
flanelette: Most MOs are not aware of Penguin Cold Caps (or the ElastoGel caps either) for chemo, I was one of the first 100 users in the US though some media coverage in fall 2010 has boosted that (a 15-minute story on Good Morning America; most of the women on the breastcancer.org cold caps users group photos were included); the caps have just finished clinical study at UCSF and are on their way to FDA approval soon. My MO was dubious it would work, but now recommends them to all of her patients. In fact, all of the MOs in her group recommend them to their patients also. In fact, not only do all of my physicians recommend them, my obgyn even sent her best friend to me for coaching. It is still a very patient-driven movement, although it's been used in Europe for over 20 years and is built into their cancer centers.
I emailed Frank Fronda, the inventor of Penguin Cold Caps, to see if they'd ever been used for aromatase-related hair loss; haven't heard back from him but I'll report if he has any advice.
The PCCs (during chemo) go on your head at -30-35 Celcius depending on your hair thickness and quality (I have thick curly hair, so had the coldest temp, -35C). You put a new one on every 30 minutes to maintain the cold -- this lasts during your infusion and four hours afterwards. Between infusions you keep them in the regular freezer (32F), and can use them an hour once a week at that temp to help stimulate hair growth and slow further shedding. <-- that's what got me thinking about using caps for AI-related hair loss: trying it out of the regular freezer. Penguin Cold Caps are rented, but the ElastoGels are purchased. ElastoGels do not get cold enough or stay cold enough during chemo to have as good a result as PCCs. But for AI-related loss, it's a little different: you could purchase one ElastoGel, keep it in the freezer, and use it a few times a week for an hour or so.
Biotin is also recommended, and the folks at Penguin also recommend silica (and iron). They figured out the link to iron when they observed that carnivores saved more hair than did vegetarians, and noted differences in the iron intake and iron levels. My bloodwork stayed completely normal through 4 TC treatments, and I kept 90% of my hair (lost about an inch at the nape of my neck where the caps don't get quite as much contact with my skin and hair).
Hope this background helps; and if I start to see any shedding, I really hope these pointers help. It would be ironic to have saved my hair during chemo, only to watch it thin during AIs. So far, so good; in fact it's bigger than ever. I've always been a heavy shedder and feel I'm shedding just a little more than I used to, but I might be more sensitive to it now. Hope I hang on, only 3 years to go. Have to work very, very hard to keep my weight down but I'm motivated. Even on the days I have to talk myself into going for that extra walk, I never regret having done so -- I always feel much better. (I swim, lift weights, and walk/hike 2-3 miles/day, every day).
If you want to see before/after photos of the PCC process, here's my facebook link (you don't need to be on FB to see these): http://www.facebook.com/media/set/?set=a.102992449790904.6332.100002404474878&type=3&l=d97c5ccbfe
Susan
0 -
Happy Mothers' Day 0
-
Susan - thanks for your detailed message - during chemo yes we ice parts that we don't want the chemo to get to, - I chewed ice during my FEC. During the E? maybe, can't remember. Congrats at being a grassroots Penguin!!! I actually did not mind my hair loss at all- didn't have to go out to work etc. even found I had a great shaped head. Who would have thought???
Right after chemo my hair grew back in fast & lthick, so this hair loss IS AI related. Lack of estogen or whatever...with no shedding at all, ever ( well of course at 2nd week of chemo, never after)Just 1 hair follicle grows when there used to be 10. they just refuse to grow! I'm going to phone my pharmacist to ask about the gel caps and then just call my onc and tell her I want a prescription please...yes cold makes so much sense, and what with summer coming, what a relief! But why are those little f*rs on my chin stronger and more profuse than ever???
By the way, Burdock seed oil(not an essentila oil!) is a traditional Slavic aid to revitalizing hair and I did use it through & after chemo - might buy a bottle of that from my organic herb farmer too.
Thanks again for your perseverence and advice - you too Sunflowers
0 -
Hi, Flannel - also have to say, we can't blame it all on the chemotherapy, medications - it really is true for every woman I know, that the hairline changes with age, and the "density" of hair changes with age too. I know the Biotin can help, but it's never going to look like it did 40 years ago. But then we have SO much more WISDOM now....don't we???
Reporting there definitely is a connection between INCREASED Vitamin D levels and LESS creaky pains. Definitely. I hope everyone has their Vitamin D blood level checked ( rechecked if necessary!) and I noticed a differerene when it got up in the high 40's. Still "aiming" for 60 or above, hopefully the summer sun will help.
0 -
Flanelette: You can order Elasto-Gels online, even via amazon. They are not available in pharmacies and no prescription is required. (Penguin Cold Caps are rented from http://www.msc-worldwide.com/)
Best,
Susan
0 -
I just got mine checked last month and he said I was a 51 I guess that is good considering I dont know what normal is.
Nancy
0 -
Hello everyone,
I started Arimidex April, 2011. I know SE's are different for everyone so I will just tell you mine. Neuropathy in hands and feet, trick fingers, severe bone and joint pain, lower back pain, hot flashes, night sweats, insomnia, severe constipation, fatigue, weight gain, migraines and depression. I am taking Vit D and also monthly Zometa treatments. I have a high tolerance for pain and I have been trying to hold out on any pain meds but I cant take it another 4 years. I am 49 years old and feel like I am 90. Sometimes I do feel like stopping it but I am going to stick with it since my cancer was so advanced. Anything good for the pain out there? I need help!!!!0 -
Hello, I am also on Arimidex, and the joint pain in my wrist is so bad and my knees. Onc. wants me on Tamoxifen, but there are so many more side effects. I am afraid to take it. But not sure what else to do. I can't go on with this joint and bone pain. I also feel about 80. I had pleomorphic Lobular caner in the breast. I just want to have a normal life again. With my wrist pain it is hard to type. I have been off the med for about 4 days just needed a break and will have to restart soon. Has any one taken tamoxifen for a long period of time and what type of SE did you have.
0 -
I started Arimidex last week. Is there an average time for SE's to start showing up? I would imagine it takes a little time for the drug to build up in the system, but so far I haven't experienced anything out of the ordinary.
0 -
snoopsmom
I am in the 3rd month on Arimidex and no SEs yet...fingers crossed!
0 -
schatzi14, that's encouraging! I'm all set for a 3 week trip to Australia, New Zealand and Fiji in September. I'd hate to be laid low by SE's. I plan to do a lot of adventurous things on that trip!
0 -
Go and have fun!!!
0 -
Nancy - just about perfect. Range for normal is a waste of time! some tests start at 20, some at 30.
I've been reading a lot about this, and especially for bc thrivors ( I don't like the word survivors) it should be at 50 or above. The test goes up to 100.
I would love to be at about 70.
0 -
Dear Snoopsmom..... I would count on feeling just fine and having a blast. Sounds like something beyond wonderful. Two years ago, just after finishing up active treatment, I did all my normal summer activities. I was a bit slower than normal, and needed more energy stuff, but I did everything I had planned. This includes major cycling events.
Two years later, I am dragging and sore this AM, but from the 100 miles of cycling I did over the weekend. This includes a moderately intense Metric Century on Saturday (65 miles). I did 35 miles of flats yesterday with a group, and was able to do a 15 mph pace.
Speaking of cycling, I would recommend some sort of exercise program. Staying active is so important for many things. It will also make a difference in what you can easily do, so you can power up hills and do all sorts of adventurous things.
So lots of walking at a minimum, plus some sort of upper body work. Or swimming since it's summer. Those are the things that will carry you through days of adventure. - Claire
0 -
Claire...your DX and treatments are almost identical to mine...are you also on Arimidex for 5 years?
0 -
Hi Schatzi.... Yes, I just finished Year 2 of Arimidex. The big difference in our diagnosis is that I had a Grade 3 tumor, so also did AC + T. I did notice some knee soreness during a long, slow uphill of Saturday's event (pavement was rough too), and I scarfed down a GU gel, and took a few slugs of Gatorade. I finally made it through the 8 miles or so! But wow was it endless!
What hurts today has nothing to do with Arimidex. The part I sit on is complaining big time. I didn't do my weights/crunches routine with a lot of enthusiasm today either, but I did them.
I think that the big difference post treatment is that I use more energy gel, and keep ibuprofen with me, but I am also faster than ever. But this could be because bonking isn't fun, and just not necessary. Nor is struggling to keep up with a steady pace group.
Anyway, I am grateful to be just fine, and able to do all the outdoor activities I did prior to diagnosis. - Claire
0
