Arimidex - Coping with the SE's
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Pinkheart Been away from the computer for a bit so my response is delayed.
It was my surgeon who told me that the new thinking is to only take the sentinel node. When I asked him how he would know whether or not there were more nodes with cancer he said that 97% of the time the cancer goes to the sentinel node.
Because I am post menopause node positive I was not allowed by my insurance to get the oncotype test. Well, if I paid for it myself I could have it but the cost was $3000. The onc said since I was node positive there was no question re chemo.
My oncologist told me that it could be that in the future women wiith my stats would not require chemo but at the present time it was still recommended. Research has indicated that estrogen positive OLDER women might not benefit from chemo but it is not conclusive. I will be 70 in February. So I went through four cycles of taxotere and cytoxan. Born too soon.
I have done a lot of research regarding progesterone therapy for breast cancer. There are many clinical studies and there are progesterone drugs such as Megestrol which is given to women who no longer have any benefit from Tamoxifin. I am puzzling over all of this because the research points to the fact that low progesterone allows estrogen to dominate and cause cancer and if you increase progesterone it causes cancer cell death. I intend to discuss this with my onc on the 30th.
Still thinking about going forward with Armidex...
Kathy
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Thank you both for letting me know my generic should cost less. Our nearest Costco is 1 and a half hours away. I can check out other pharmacies in my area. I am currently using rite aid, so maybe walmart is cheaper.
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joyfulgirl, there's a section about Bone and Joint Pain at the main Breastcancer.org site that may help you with managing the pain.
Judith and the Mods
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I was reading recently that lymph node removal has no effect on how long a woman lives without a recurrence or the development of mets, it's only real use is staging. With more women living longer and developing lymphedema the current thinking is that the risks associated with lymph node removal are greater than the potential benefit, especially now that Sentinel Node indentification is readily available. All the lymph nodes were taken to see if any nodes had cancer. Research shows that the findings in the sentinel node(s) correlates very highly to findings in the rest of the lymph nodes in the area, so that test adequately answers the question "has the cancer spread to the lymph nodes." Treatment is the same if the cancer is found in 1 lymph node or 20, so there is less and less reason to do full lymphatic dissection now-a-days. This info has been floating around for a few years now, but it will take a few more years before there are enough studies replicating this info for it to be used to change treatment protocols.
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Native, I had read the same information regarding lymph node dissection. My surgeon however did not, unfortunately. I had three tumors and he removed all three sentinel nodes which were negative and then proceeded to remove 10 additional axillary nodes leaving me with lymphedema. I still get angry over it, but I think he was just so shocked that I didn't have any involved lymph nodes with three sizeable tumors. In fact I looked up my stats and had an 83% chance of lymph node involvement with the size of my tumors. I beat those crappy odds!
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Thanks for all the info. Will try to get some coconut oil and cocoa butter this weekend. Will they have it at WalMart?
I don't like the idea of the vaginal atrophy. Yuk. Glad to hear the facial hair is temporary. All of this doesn't make me feel very feminine.
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I will definitely look into the coconut oil. I dont have a Trader Joe's, but my daughter lives near one and can get some for me.
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twoputter - I'd definitely suggest a good health food store, or organic co-op. Really don't trust the commercial ones - am sure you can get it online too - but then you can't smell it. I LOVE the smell of the Whole Foods 365 brand - not too strong, but definitely coconut. If ( when?) the icey snow stops here, I may venture out to try the Trader Joe's one...
BTW - facial hair for me wasn't ( isn't ) temporary - especially those LONG individual things that seem to sprout overnight between one of my chins and neck ;-)YUCK...guess lucky they're very dark - cuz at least can see them to PLUCK, PLUCK, PLUCK...beginning to wonder how a chicken feels?
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A few comments here.....
- We have to remember with lymph node involvement that sometimes there is a good reason for taking them, such as the grossly positive sentinal node I had. Even my surgeon mentioned to my friend who was with me that I had "extensive involvement". I didn't, but we only learned that by doing a dissection.
- I am bummed that the snow has melted, so a walk and not a ski. But I got in a ski along the waterfront on Wednesday when Seattle was shut down. Was so much fun, and saw a sea otter. Anyone living where snowy and icy should invest in Yaktrax to get outside. I wear hiking boots.
- Facial hair is a bit different, but no more bothersome than before.
- Zumbagirl.....if nothing sensible nearby, see if you can order by mail. I get mine that way (from my health system). I pay $4 per month, and order a three month supply.
- From the get-go with anastrazole, I was aware that the decision on how long would most likely be made when I was at the 4 year mark. We won't know until the research is complete which will be another 2-3 years.
- Which brings me to......treatments are changing all the time. For example, I don't think very many oncologists will be doing metronomic dosing of AC going forward. That was one of the findings of the study I participated in: they had assumed a benefit going in. There wasn't so back to dose dense (which was what I got, but 6 not 4). Most women won't be getting 6 going forward either. I know why.....too much toxicity.
- As for some of the other issues.....everything functions fine down there. I think that being fit and flexible helps, as does action. If things really go south, I will try out Scream Cream. Right now, I don't need it......not at all.
- My skin is fine, and I am happy with the way I look. I wasn't a year ago when I felt I was sporting the hair from hell. Just looked at a picture from then. No wonder, I didn't feel on top of my game. I am there now.
- Which brings me to....yes, I have very minor symptoms from anastrazole. But why couldn't I sleep earlier this week???? SORE BUTT muscles.....guess I worked hard skiing anyway.
Have a great day, and get outside if possible. We don't stress that enough, but walking in the fresh air cures a myriad of ills. Hoping to go to the mountains skiing soon. But not in pouring rain.....just not fun. I will reward myself with a treat too.....perhaps some Christmas Pudding I still have left with a bit of (very) Hard Sauce on it. - Claire
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Whole Foods has a website so yu can order online if one is not nearby.
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Patoo, thanks for posting that I did not know that was an option
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zumbagirl,
I also take Arimidex. At Walmart, with my insurance, it was $27.70 for a 30 day supply of the generic.
Then I got a letter from my insurance stating that because it was medicine I renewed monthly, I had to get it via their mai-order plan. When I did that, it came to about $57 for a 3 month supply. That equals to only $19 a month. And this was for Arimidex and not the generic.
You are smart to check around. I used to go to Rite Aid but found Walmart pharmacy seemed to give me the best prices. And, as someone suggested, mail order may give you an even better price. Good luck.
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For some odd reason my Insurance (90 day mail-in) has not charged me anything for the last 3 times I got my Arimidex refilled. Don't know why but they send it to me and say no co-pay due, it is usually 30.00 for 3 months supply. I am not going to question it , I even sent my card # with my new prescription this time and it came back no co-pay due. Doesn't hurt my feelings any
Nancy
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check out this great video:
http://www.cbc.ca/news/canada/toronto/story/2012/01/11/toronto-viral-video-doctor-health.html
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Several of the newer ladies on an exercise thread I'm on a lot recently had some LE questions, so I did the following post for them. Since the topic has come up here too, I have copied it over. Hopefully there are some some useful tips:
I had 11 lymph nodes removed, so this (LE) has always been an area of real concern and mindfulness for me. When I had my surgery, there was no one around here to go to for advice, so I did a lot of studying on my own. Ladies who have been around for awhile, feel free to skip, add your suggestions, or correct me if I'm wrong.
First, I think that whether or not you are prone to LE has mostly to do with how your lymph system handles trauma. I would say most cases (unless you are in a horrible accident or are doing really extreme activities) are neither through any virtue or fault of your own; just a matter of good or bad ‘luck'.
That being said, there are many ‘little' things that we can do that may reduce the risk of developing LE or minimize flares (these are for people with SNB too):
- No BP, IVs, needles, shots etc. in that arm....consider getting a medical ID bracelet (to wear when traveling anyway) check out http://www.creativemedicalid.com/ for beautiful jewelry type IDs
- Wear gloves when doing yard work, gardening etc.
- Wear sunscreen when out in the sun, bug spray when out with the bugs
- If you get a cut, scrap, bite...wash it with soap/water and slap on a bandage. If you see any sign of infection, get to the Dr. & on antibiotics ASAP
- Carry your purse on the other side, also be careful when hauling around anything heavy, switch arms when dragging luggage etc. (at first I carried everything on the 'good' side but wonder if that contributed to me getting a hernia, now I swtich off)
- No saunas (I also avoid manicures and massages)
- Keep a healthy weight
- Keep hydrated, limit alcohol
- Don't wear tight rings, watches, bracelets on that arm
- When exercising that arm; start slowly, take your time...build up weights slowly...don't skip levels...don't do too many reps in one session
- Mix up your exercises, don't work the same muscle groups every day, you may want to work with an experienced trainer (or PT) to help you construct a balanced program
- One thing I do want to add; after my surgery I was so scared to start doing upper body. Neither my surgeon nor my oncologist could give me any good solid advice, so I talked to my GP. What he said was that I DID want to exercise my upper body, that it was important to do so as it would actually build up the lymph system, and although, of course, I should be careful and notice if my arm felt heavy/swollen etc. that I shouldn't be afraid to have it feel a little sore...because anytime you exercise a part of your body that you haven't been using, of course, it will feel sore. That made sense to me, and gave me ‘permission' to get moving.
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Hi all - yes, ruthbru's video is great - it came to me as an email. I was sitting here reading your posts, also doing a lot with cocnut oil as I have the rash from hell that will not quit. Cocnut has so many uses. Now I'm experimenting with a handful of it in the bath so when you emerge you have a film allover your body - and then I rub on even more, while my body's still damp. then take the most Benadril I can ( in addition to antiinflammatory meds and steroid cream but am not so sure steroid cream's a good thing) I was thinking "coconut water", coconut oil, for face and body and then the light bulb came on - Coconut Cream Pie! hahaha
The reason I mention this is we got take-out coco crcpie today from a local and wonderful diner and the other day, somehow found they'd been reviewd with 4 stars on www.tripadvisor.com, and am all perked up this out of the way place has been "discovered" by travelling urbanites between Toronto and Montreal looking for some real food.
Sunflowers - I put the uneaten half of my piece in the fridge and it was so cool and creamy going down - and then I came across your use for cold coconut and laughed my head off because my partner and I are pretty much celibate - he takes antidepressants and I'm dry as a bone and the last time a nurse interviewed us as a couple and asked about our sex life I nearly fell off the chair laughing - and told her what I just told you.
But we were practically ecstatic shovelling down the pie, which also cracked us up.
I'm off arimidex for 1 week then taking a homeopathic remedy - I need the same remedy as Idid 8 years ago with the previous rash from hell - homeopathic sulphur.. I tried some from the supermarkt but it didn't work they only sell the weaker strengths at a grocery - the homeopath wondered if perhaps the daily ingestion of the big A is a roadblock for my body to heal itself. But sure not going off it. I'm 3 years in and everything has gottne better -
ps I think it was Vivre in Natural girls who'd concocted half & half coconut oil and something like organic almond oil with perhaps 1 drop of an essential oil if desired, but it had to be kept in the fridge to stay solid.
Sunflowers I bought all the gluten=free stuff to make my own bread but too many deadlines & pressures around Xmas - will now have time to try gluten-free, I promise. oh, and start my exercise class again
ps I now keep tweezers in the car where I am shocked to see what's been growing under my chin. After chemo my underam hair never grew back nor do I sweat there - so I can almost forgive it for trying under the chin...
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Thanks Ruth for that great video. The major thing I figured out is that I needed to make exercise a part of my life. I use the same approach as "pay yourself first" with finances. So before I shower on weekdays, I do my weights/crunches routine. That is about 12 minutes to go straight through. Later on, I walk a minimum of one mile. DONE!!!
I do a lot more on weekends (usually training for some cycling event or skiing), and try to get in a couple of 2-3 mile walks at least twice per week.
This works for me, and I am toned and fit. In fact, a guy who chatted me up at the wine bar told me how "athletic" my body is. I accepted the glass of wine he bought me!
As for the "feeling sore" part, my glutes are still protesting from the six miles of x-country skiing I did the other day along the Seattle Waterfront. A great day to get out and play. It was just glorious.
So the only thing I would add to the video is that getting out and walking/skiing gives you an endorphin high quite apart from the exercise.....the scenery can be that wonderful.
As for the lymphedema piece, I decided I wouldn't let the fear of something that "could happen" rule my life. So apart from the obvious precautions, I don't worry about it. My take is that there is treatment should something go amiss. I did pull my lower pec last winter doing x-country skiing in deep snow.
It has since healed, and even my ankle that I trashed when I wiped out cycling last June is starting to feel ever so much better. It didn't hurt when I did the ski....it was my butt that protested instead.
Happy exercising.
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I am putting in my vote for a large slice coconut cream pie as a remedy for almost any problem......pie and a pina colada, another great use of the coconut!
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I just want to thank all the ladies who offer their advice on this website. I am 7 months post surgery and doing well. Started generic of Arimedix in mid-August. Side Effects were pretty bad in the beginning, but have gotten better. Each day is different.
The information on this site was been invaluable to me, so Thank You!
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Flannel
I never thought of just buying fresh coconut - the last time I tried to open one, well, it was quite a mess. But they sell them at a local store, so may try. I use a lot of coconut milk, cream in stir fry, both come in cans.
BUT, BUT, BUT it's the Whole Foods 365 brand in the black plastic tub that has a firm hold on my heart. One in the bathroom, another one next to the stove in the kitchen, one on my desk ( dry hands, expecially after shoveling snow....it's that time of year...
GET THYSELF GLUTEN FREE, Flannel - really, I was not careful during the holidays, and by the beginning of January, I was really, really creaky, achey. Now 3 weeks of absolutely NO GLUTEN, NO DAIRY, and I feel like a different person.
I find the plain brown rice flour toooo "gritty" - a good NON GLUTEN bread flour, mixing several kinds of flour, seems better. GOOD LUCK. ( ps...reading a lot of Taoism now, thanks for the inspiration!)
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Sunflowers - I've never even HAD coconut water - my partner ordered it accidentaly one day at a restaurant. I believe for us common folk it comes in a can.
OK ok I now have time to go non-gluten. Oh, and guess what? I have pure coconut flour with a recipe for making gluten free coconut cookies - and with the coconut oil - yum!
But i draw the line at giving up cheese. WEll, maybe i could for 1 week to see if anything happens, since giving up dairy and gluten might clear up my rash from hell. as well as comfort my creaky joints, though I've been so much better lately.
I have a slightly odd story about taoism. I run my business on the internet and a very well-read man who writes long letters when he orders Xmas prezzies for his wife turns out to once have been a prof at a university - I never ask where -keeping to the moment in toaist fashion - and he taught Taoism. so, overjoyed he finallygot to talk with SOMEBODY about it (I think he misses teaching very much) he started to send me books. First one was 365 days of Tao - a sort of modern pattern you could follow every day, as where, besides Lao Tzu and chuang Tzu and the I Ching do we turn to?
But my tenant borrowed it months ago! Then, a very expensive copy of the Tao TeChing came, with chinese endpapers and folded landscapes in the middle, translated by Arthur Waley who turns out to have been a mentor of my customer-friend. But a huge space is given to the preface all about the warring states and ancient government - well, that put me to sleep. Fast-forward to the actual text, and I feel badly - it leaves me flat.
The book I really like I already had - Thomas Merton's rendition of Chuang Tzu, which is full of fun and such a delight. So now I'm sort of retracting, like a person being stalked over the internet! But from his point of view- I mean, how many times do you go to order something over the internet and discover ther's a closet Taoist at the other end?And not even that - a person who only likes the pagan parts of Xmas?
Anyway, it's been fun. I promised him I'd be in a sufficient yin state once my seasonal business was over that I could just sink into reading...
I can't figure out if this is all a wee bit kinky, or he loved his work and misses it terribly and his wife can no longer stand listening to him lol but we did wonder, if we put a pin in for every closet taoist in canada, how many pins would we have? But already we are a triangle, for there is you in MA and him on the east coast of Canada and me here in ONT.
Some day I'm going to learn how to put pics in here, like SoCalLisa does. Then I won't write such long posts!
Hope you're having a great day.
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Hi ladies. I haven't posted here before, but have been reading along for about 2 months now. I started on Anastrozole about six weeks ago - straight off Tamoxifen, which I had been on for just short of three years. I had a quick question for anyone that might know the answer. Four days ago I started experiencing spotting, and it's enough that I needed to use a pad or tampon - today, the fourth day, it is lighter but still a tiny bit there. All my blood work for the last year has been in the post-menopausal range. Is this just a side effect from starting Anastrozole? Has anyone else had this happen? Thanks for any help you can offer.
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Spotting like that is not unusual when switching from Tamoxifen to one of the AI's. Call your doc if you are worried, but it's not unusual.
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Thanks, Native. I did call the doctor earlier, but hadn't heard back yet so was hoping to get some info from here. They did call back a bit ago and they told me that it's not unusual to have this happen when switching from Tamox to an AI. I'm to go a month from now and have my blood work done again to see where my numbers are then. Thanks!
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Thanks to the posters about coconut oil. I went to Whole Foods today and got a can. I was going dry before I got bc and was trying all kinds of stuff. I haven't tried any sort of action in six months partly because I was either recovering from surgery or going through chemo. Now that all is done I am going to attempt it again. So I will be using the coconut and see if it works. A little scared.
Once I start Armidex I was told by my onc I would get dry. Well, since I was already getting dry it will be the Sahara.
Kathy
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Kathy - there is a thread that is all about "vaginal atrophy/dryness" - can't remember the name - someone will chime in with it - lots of GOOD SUGGESTIONS there...
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Kathy, I just started using coconut oil "down there" and it is awesome. I use Liquid Goddess (you can purchase on Amazon). It does smell like Almond Joy, so if you don't like that, you may not like this. I love it.
I suppose you coud just use straight coconut oil from a jar, though. Not sure what the difference is.
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My OB/GYN suggested Astroglide for the dryness ... anyone try that?
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Yes I have tried it. I have also tried Replens, and KY Liquibeads. I have tried all three together. Some folks on another thread suggested Scream Cream which requires a prescription. It is made by a compounding pharmacy. At first I had success with the Astroglide and other lubricants, but the longer I stay on Arimidex, the less effective they are. I am debating the Scream Cream, but will need to mention it to my onc or OB. I haven't gotten my nerve up yet.
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Hmmmm ... we have used something we ordered online from a place called early2bed.com (LOL) and I might just continue with that. I will look at it at home and post the name later - it's GOOD stuff!
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