Arimidex - Coping with the SE's
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I went through a long period of being "fine, but not quite on top of my game". Then I would beat myself up for not moving forward. I was active and doing all sorts of things, but not quite "on".
I still eat more protein than before, but not as much as one year ago. I know everyone talks about fruits and vegetables, but more protein was my big need. My system would rebel if I ate any more fruits and veggies. I remember the time I tried nine a day. YIKES!!!
Some of the being not quite on top of my game was due to the long time it takes for hair to grow out. This is still happening, but the overall look has been much the same for the past 6 months. And I love it!!! It's the look I never quite dared go for.
I look at Arimidex as something I have to do in order to make sure I never have to go down this road again. I can't wait to be at the five year mark, but it's hardly the end of the world either. Yes, I have some achiness, but nothing on the order of my injured ankle when I wiped out cycling in a sudden hail storm. (I thought I could make it back to my car and hit some RR tracks the wrong way.....OUCH!!!) So nice to be able to power walk again, as I couldn't for about three weeks.
As for being a "new person", I am going for "better than ever". We would be changing anyway, and quite frankly, it's those who don't change who I feel sorry for.
Having said all this, I need to get out my exercise ball and weights. Not the most fun part of my day, but it keeps my upper body toned and fit. Plus muscle burns calories.
Anyway, you will feel better Ginger. The summer is coming with time outside and fresh local fruits and veggies. Your body will heal. Make sure you get enough sleep. Do fun things. Spend time with people who energize you and are fun to be with.
That's my story, and I'm sticking to it! - Claire
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ruthbru, I agree with your time table. I finished active treatment seven months ago and my energy level is nowhere near normal yet. Some weeks I feel fine, but then during other weeks I can barely keep my eyes open. Insomnia is still an issue. It is strange to feel exhausted when I go to bed and still be unable to sleep.
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Elizabeth
that part bugs me too - I am SO exhausted, I literally FALL into bed, then find it is hard to fall asleep. I'm sure it's the AI - and the best thing I've found, is honestly trying to get to bed at the same time, quiet time before sleeping, I read, no TV in the bedroom, furnace turned down - being hot keeps me awake - and gradually getting my body into a PATTERN of sleep.
I still often wake up in the middle of the night - WIDE AWAKE, and just force myself to stay in bed. At worst, turn on a ight & read for a while. There was an interesting article online, can't remember where - about docs who did a "sleep study" and found in history, it was considered natural to sleep for 4 hours at a time....makes sense to me.
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Sunflowers and Elizabeth, I was having the same terrible sleep issues too, but changed to taking the Arimidex in the morning and I'm much much better. I still wake up, but can get right back to sleep most nights.
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GingerMea, of course Herceptin 'counts'.....if you just finished last week; you are being way, way, way too hard on yourself! Keep moving, do fun things, and give yourself time.
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Thanks Spunky, I'm recovering and will be ok.
KItty the only thing my MO said about the hand and feet swelling was that was causes by the joint pain. Funny thing is I didn't have much joint Pain.
Will keep you posted on comparisons with new A0 -
Ruth, thank you for saying that it makes me feel better. Ginger M.
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Here's an article about chocolate that I think you all will all enjoy (remember they are talking about 1-2 ounces of chocolate and it must be at least 70% cocoa).
Taken from an April 9 Time Magazine article entitled Sweet Revenge: Chocolate eaters are thinner. Really....
"....the latest study to balance the health benefits and harms of the sweet treat shows:.....its fattening potential may be more than offset by its positive metabolic effects-which also improve heart health, cholesterol levels, glucose control and blood pressure......(the study showed that) those who ate chocolate more frequently had lower BMI....despite the fact that chocolate lovers consumed more calories overall and didn't exercise more than the others. Eating chocolate five or more times a week on a regular basis can translate into a one-point drop in BMI.......while chocolate may not cause weight loss, its health benefits, which stem from antioxidants, may help the body absorb fewer calories from fat, thus tipping the scale toward a slimmer physique. Which is not too good to be true."
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any oncologist who doesn't think the AI's cause "swelling" is welcome to ALL my rings - which no longer fit. I'm not having them made larger, they make my fingers look more like sausages. Nope, not ( thank Dog) lymphadema - just good ole fashioned AI SE SWELLING. Sometimes feet, but not as often in year 5 as it was in years 1 and 2.
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So I'm not the only one who has to battle to get my rings off in the morning to take my shower. It's driving me a little crazy. Later in the day it's usually better but not in the morning. I figured it was the AI because I weighed less than I did ten years ago and I never had a problem getting my rings off then...
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Patoo - I don't know if I have mentioned this before. I take sublingual liquid B Complex and find it makes my hair and nails grow really fast, and my nails stronger. It's cheap and easy to find, and I notice results in a couple weeks! I had to laugh about you neglecting the rest of your life while on the boards here. It is addicting. It also kept me going thru my toughest parts of treatment.
Hello to all you ladies here. I have been on anastrozole for three weeks and hip and back pain are making me miserable. I have been on strong pain meds for 10 years for chronic pain and they aren't controlling this very well at all. How long do you suggest I try this before changing to another AI? Does the pain ease up after some months?
Thanks everyone for all the helpful information!
Barb
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LC-Barb
You SLEEP with your rings on? Yikes - no way I could do that. Think it would seriously cut off circulation in my hands,really, in order to wear my rings, I'd have to have them made larger.
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I've been off Arimidex for 3 weeks now and still exhausted and sleeping up to 16 hours a day. My body aches are gone but I have occassional headaches with the exhaustion.
My Onc is saying he thinks I should be 100% better now eventhough my Radiation ended in Nov 2011. I think I am worse now. His RN said it wasn't unusual to be fatigued for a whole year after treatment so I will go with you guys and her. I won't go back on Arimidex and hope he comes up with another adjuvent therapy for me.
It sounds like I have until November 2012 to feel lousy if that's the case. Thank you for sharing this.
Hugs
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I have been taking Anastrozole for two months. I have to say the SEs that are the worst for me are dry mouth, and hot flashes. I did have joint pain the first few weeks, but with daily exercise it has decreased a lot. I have had to force myself to keep it up, but I go back to work next week, and I am on my feet and on the go all day there, so I have to keep the old knees going. I wake up with a slight head ache every morning but it fades as the day goes by. I am hoping that nothing gets worse, I have felt almost like my old self for the last few days and it has been a long time coming.
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You won't feel lousy for a year; keep active and busy, and you gradually will regain your strength and zest.
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I have been taking Anastrozole since August 2011. Experienced nausea, joint pain, headaches, fatigue and what I called 'thermal burns' (not hot flashes) for the first two months. After that, the nausea and the headaches were periodic. I was already suffering from fatigue due to the radiation and was already doing B12 injections once a month. The Anastrozole just made things worse. I have now increased the B12 to twice a month and that has helped a little. I have also been taking a product called V3 (supplement) which contains a natural caffiene and other natural ingredients. I cleared this supplement with my family doctor due to my blood pressure. It is new to the market and is being marketed as an appetite suppressent. However, after scanning all the ingredients, I felt it was worth trying to see if it would benefit the SE's I was having. I started on 3/17 and I have felt so much better, especially for my energy level. The 'thermal burns' are not 100% gone, but are much better. If I lose some weight, well that will be a bonus, but not the primary objective.
Please know that I am not advocating this supplement for everyone. I just wanted to share what is currently working for me. I am grateful that I have an open minded family practioner who does not look down upon alternative methods. Everyone has to choose what works for them.
Everyone who is coping with Anastrozole SE's, hanging in there.... Looking forward to my freedom date: 7/4/2016
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barbyjean: I had lots of joint and bone pain when I first started anastrozole, esp. about 3 weeks in. One night I was lying on the couch in agony, even my toes hurt, and I remembered that when I had my Neulasta shots (day after chemo) my nurses had recommended taking Claritin the day of and 3 days after the shot to prevent bone pain. They didn't know why it worked, but it did. So, I got my butt off the couch and took a Claritin. Sure enough, within hours the edge was off the pain, and by the next morning I was bouncing around with my usual high energy. I haven't looked back since.
Just told my MO about that this week, and she was very excited and will suggest this to other patients. I told her many other women on the list had tried it and some had also found positive results. Give it a try! I hope it helps!
I also recommend acupuncture for *any* SEs and for overall wellness, including low energy. (My acupuncturist is conducting a study on post-chemo fatigue and acupuncture.)
I've found that diet and exercise are my best allies in feeling great, and I also discovered that any time I have sugar or alcohol (which converts to sugar) I have an instant hot flash. Since sugar fuels cancer cells and should be avoided anyway, it's just another reason to keep it out of my diet. (Or, when I have a glass of wine, by the time I've finished the glass I don't care if I've had a hot flash...)
I've been on this AI for about 5 months and after a short adjustment, I've had very few SEs. I know that's not everybody's situation, but in case anybody is newly diagnosed and reading this thread, remember that the potential SEs are just a menu of potential SEs which you may or may not get in varying degrees and for variable periods of time.
Hope this helps!
Susan
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Make sure it is Claritin, not Claritin D.
At first I would get a hot flash when I drank a cup of coffee (thank goodness that SE went away), so I would have to drink my 'mandatory, to be able to start the day' cup while sitting in front of a fan!
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Wow..I'm going to try the Claritin. That would be awesome if it helped! My hot flashes have been decreasing which is wonderful because I'm sleeping better and getting sleep always helps me cope with everything else.
I hope everyone has a peaceful Sunday!
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Since who ever wrote about the Claritin, I now take one a night, with all my other meds, as a part of my routine. Haven't had any joint pain, so expect that's a part of it.
Still SO %@$#^%#^% tired - but fearing it's prediabetes, and having that checked again this week. Know it's the AI ( in my 5th of probably 8 or 10 years) - and the fatigue seems to also "cycle" - some times are just worse than others.
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Thanks for the Claritin suggestion! I still have some left from my Neulasta days and I'll give it a try. I also mixed up a batch of the raisins/gin, and have been taking them for a few days. Yesterday I felt great and the weather was nice, so of course I overdid it in the yard. Am paying for it today.
The support from all you ladies really helps me deal with this sh@%! Thanks all!
Barb
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HI all ! I have friend..yes I do hahahh,,,,who was here today her sister is on arimidex. Has had myriad of tests including colonoscopy for abdominal pain..left side. Even Doc is now wondering if it could be the arimidex...She is soon to go off it 5 yrs up but I was curious if anyone has heard of this type of pain.. TY for being there!
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hmmm.....I never heard of that. I had abdominal pain, but I had a hernia (not arimidex related....a family weakness; my non-BC sister, and a bunch of other relatives, male and female, have all had hernia surgery).
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I have pain but had it before cancer DX and it was after my gallbladder surgery The MX did make it worse and I came to the conclusion it was nerve releated. Why because one day I was rubbing my chest and hit a nerve and it sent pain to that exact spot. I also found that I made it worse when I laid my arm across my stomach. I hope you figure yours out too and it is nothing.
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Lakewoman - that's an SE I've never heard of - expect she's going to need a CAT or PET soon if she hasn't already had one. Hope all works out well for her.
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Oh I forget to say my Surgeon had me buy so Coca Butter with Vitamin E to use on my hand scar. All I could find in my area was the Palmer but I will be ordering the one that was suggested soon.
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I've been using the Palmer's cocoa butter w/ vit E, and my BS was impressed with how good my BMX scars looked. I see my PS this week, we'll see if he agrees.
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I have only been on Arimidex for two weeksbut I haven't noticed any SE's. I was wondering if they built up over time so thanks for that enlightenment. My doctor did suggest going on the glycemic index diet to aid with any possible side effects ( gulten and sugar are gone) so maybe that is why all is well. I have 30 pounds to lose and as extra fat cells turn into estrogen I am going to sta focused on me!! Good luck to us all!!
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I'm in the last six months of my BC treatment....I started out taking Tamoxifen then switched to Anastrozole, I have 6 months to go and then I'll be done. My SE have been hot flashes, night sweats, joint pain (at first). I just dealt with all the SE's, seems like I've been down, or drug in the mud most of the time. I've been on anti-depressants (lots of family changes too). I've gained 50 lbs since having breast cancer. Not sure if it's related to stress, medicine, etc. HAS ANYONE LOST THEIR WEIGHT AFTER COMPLETING Arimidex (anastrole)? If so, did it come off naturally, or did you have to work harder than ever? Another question. What about HCG drops?
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Because we are getting older, it is harder to loss weight because our metabolism is slowing down.....that being said, OF COURSE, you can lose weight. No secret how....diet and exercise!
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