Arimidex - Coping with the SE's
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Snoopsmom: I swam every single day through chemo (1.25 miles), every day through rads, and every day ever since. I've been swimming every day for 26 years and there was no way BC or cancer was going to change that. I got in the pool as soon as I could after my lumpectomy.
None of my doctors said anything to the contrary; in fact, they were strongly encouraging of all of my exercise and activity. Exercise of any kind is important in detoxing the chemo from your system and preventing SEs, and in oxygenating red blood cells. It's one of our best lines of defense against these meds and against cancer itself. You would only need to guard against infection if you were neutropenic (you had an unusually low white-cell count). Go swimming! Enjoy it!
Susan
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Hi SE ladies,
I have a foot question. I was on Arimidex for two months after ILC diagnosis....up until my UMX with immediate DIEP. Plastic surgeon pleased with my progress; seeing my breast surgeon in a few days to learn my oncotype, etc. Fingers crossed. BS wanted me off the AI for the time bein, so it's three weeks off.
My question is.... I started with foot tendonitis about a week into the AI. It's uncomfortable but okay enough for me to walk for exericise and outings. However, walking again (three weeks after surgery) and I have the same tendon pain but also shooting pains in the same foot. Seems like the AI would be out of my system (3 weeks.) Am I experiencing something else? If I won't benefit from chemo I will be back on the AI soon. Thoughts? It's discouraging when trying to get that necessary physical activity.
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Pain update ... went to a pain specialist and she confirmed that 17% of women who take Arimidex (or the generic form) get joint pain. Awesome - I'm so lucky! She also said that chemo creates a problem with the muscles (I really cant remember how she explained it -sorry), but she said it causes the muscles to cramp up much easier! Said chemo kills some kind of connective muscle-thing! Anyway, my shoulders ache all the time and she gave me two injections in my lat muscles. I could instantly feel the muscle spring loose like a rubberband. It was soooo great!
She also prescribed some creme from a company called Total Pain Solutions. www.totalpainrx.com is the website on the paper she gave me. I guess it can be formulated based on your pain needs??? Anyone heard of this? She said my insurance will pay for most of it. I am supposed to get a call tomorrow with copay information. I will update when I know more...
V-
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MamaV so will the injections that you had take care of the problem or will you have to go back for more injections? Glad you got some relief.....
Cindy0 -
MamaV-so glad you got some relief from the pain. I have a frozen shoulder and the other shoulder is starting to ache, too-not sure if it's the AI, BMX or the beginning of another frozen shoulder. The cream sounds promising-keep us posted.
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Mamav
glad you're getting some relief - I'd say it's a LOT higher than 17% - closer to 33 1/3 % seems more like what I"ve been reading. Maybe originally AstraZenaca tried to say 17%, but that's just not accurate.
I find ARNICA GEL the most healing for pain. And the acupuncturist I see swears by Tiger Balm. Tiger Balm now makes a big "patch" you can put on the area - keeps it from staining clothes - and is just as effective.
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I really have minimal problems. Just completed a cycling adventure in the Columbia Basin. Still had to walk some hills, but way fewer than ever before. I can't believe some of the ones I climbed. Feel wonderful and did ~120 miles of cycling over 4 days.
(I spent an extra day there as had to find a car repair shop for a new clutch, and then they adjusted something wrong, so couldn't come back on Sunday as planned. A bicycle is really handy for this problem BTW.)
My tight jeans are looser, and my body more toned.
I am a new convert to Arnica gel, but for the ankle I banged during a spill three months ago. It worked GREAT.
I am energized and thrilled to be fitter than ever. So not everyone suffers. (The ankle injury really taught me a lot about suffering. Much worse than chemo in terms of ease of getting around/activities I could do.) And I also think that exercise makes all the difference. BTW - I did exercise with my sore ankle, but so nice to be power walking and no longer limping. - Claire
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Sunflower and Mamav, the figure for women over 50 who stop taking any AI's is 50%. There's a huge concern in the oncology area as to why but they don't have funding to find out why they drop out to that number. I was told this by an oncologist. It's sad when I think about it but understand it reading about the SE's on these boards.
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Claire, you are an inspiration!
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Hi Chris,
Sorry to hear about your foot issues. I too just went off an AI for 3 weeks (after being on arimidex for a year and a half). I had tendonitis, carpel tunnel,etc. I had had tendonitis in my wrist for 4 months that kept getting worse. After 2 weeks off the AI, the rest of body felt better, but not my wirst (or neck where I have 3 herniated disks). I decided to get a steroid shot last week and now my hand feels great - no pain.
So, I think that whatever you have going on, maybe related to the AI, but now it may be so inflamed that it needs to be taken care of as a separate problem. Try to see a doctor - maybe do some physical therapy. Don't suffer needlessly!
I just started back on aromasin today (we will see if it is any better). My view is that we are running a marathon so I try to wait things out (my carpel tunnel did go away by itself with a little help from wirst splints), but 4 months was the max I was willing to go without trying something.
I wish you the best. Go Claire!
Beau
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beau....OMG I can't believe I found someone like me with 3 herniated (and bulging) discs in their neck! I was going to post a new topic on the forum to see if anyone else had the same problem.
I had an untreated whiplash 30 years ago and have been suffering with excruciating pain for decades. Nothing helps UNTIL I started AC and taxol. I have been googling and finding out why when I was getting the chemo for months, I had NO headaches and could sleep so well.
I have kinda figured out it was the dexamethasone....a steroid. Since the chemo finished, the headaches have come back worse than ever. I see my GP soon and wondered if there is any shot or med he could give me that is similar. All other anti-inflammatories I tried never helped. I wondered about a steroid shot...cortisone?
I am sure the Arimidex has nothing to do with this. Am I making any sense?
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Schatzi, a decade ago I had several severely herniated discs in my neck, with unbelievable pain down my arm. I tried chiropractors, physical therapy, every anti-inflammatory on the market (OTC and doctor-prescribed). The only way I could sleep was with Vicodin.
I finally got in to see a neurosurgeon and had an anterior cervical dissection and fusion of the C5-6 discs (basically means they took them out, replaced them with cadaver bone and fused them together.) I woke up with the surgery and NO PAIN. It was gone instantly. I was not one to rush to surgery, especially for back problems, but I've never been so glad to have surgery in my life.
I hope you find relief.
(I also have herniated discs in my lower back, and doctors were able to give me cortisone shots about 3 times a year through an epidural injection into my spine. It gave me good relief, but there's a limit as to how often you can get those, and they're done as outpatient surgery...)
And yes, you make sense!
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Hi All, Just catching up on your posts. I have a question, what is frozen shoulder exactly? I have had issues with my shoulder (surgery side) in the past on and off, I was told it was bursitis. Ever since all of this (surgery, chemo, rads, AI's) I have pain in the front of my shoulder ALL the time, sometimes it is so severe I can't sleep, of course the ortho said bursitis and if it gets too bad that meds don't relieve it can always give me a cortizone shot. I try to stretch it, it is so tight too and is always there lurking minor or severe, I think do I have to live with this pain?? Is this frozen shoulder? could it be from rads? or any other past treatments?
I do have the bone/muscle pains from the waist down form the A.I.'s I manage them with pain meds, sometimes they are worse than other times, but this shoulder is different.
Any insight... Thanks Ginger M.
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ginger, I am not sure what frozen shoulder is either, but after surgery and the CT imaging for rads planning my shoulder was killing me. It had slipped "out of place". I went to a chiropractor and got it put back in, she did some lazer treatments and it felt better. But putting it in the same postition during rads everyday kept it inflamed, so half way through rads I started OT. Besides helping with the radiated skin, we worked on range of motion of my shoulder. I highly recommend PT. I still go 2x a week. (only 6 weeks out of rads) Now we are working on strengthening with the idea that I might be able to go back to work soon. (?)
I only started my AI a few weeks ago. I am in hot flash land and woke up this morning with a charley horse in my leg. My brain is taking mini vacations leaving me wondering if I am slowly losing my mind. I am taking it a day at a time.
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wave...thanks so much for all your info...I have done the whole route as well chiros...acupuncture...you name it!
I have thought about surgery but I admit it scares me...as it is, as long as I get out of bed when the pain starts, it's usually manageable. If the surgery failed and I had constant pain...I dunno what I would do. I think I will ask for a consultation anyways. Can always chicken out later.
The chiropractor told me if I didn't let him adjust the C5, I would lose the use of my arm. I let him and several others in the practice adjust it and each time (4) I got INSTANT head pain that was unbearable. I had to go back and have him "unadjust" it. That was the end of that! My arm is just fine, the pain is never in my arm but all on the left side of my head and face.
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So ... the injection relief was temporary ... not something I would bother with again ... Doc said it might or might not help but I'd know today. Guess not. Oh well. She did say that some kind of massage - ROLFING - would help, but treatments are $100/each and are not covered under insurance. Out of my budget, so hubby is just going to have to pick it up on the shoulder massages LOL!
Waiting for the creme then for my hands and feet - they are the worst.
But really, not even that bad. Just a little annoying. None of it has slowed me down - just not going to let it!
Vicky
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Claire, Hopeyour ankle is healing. After the first day treating my very badly twisted ankle with arnica gel, my acupuncturist put a TIGER BALM PATCH on it - WOW. Miracles. No messy staining of socks, and the patch is LARGE, stays on til you take it off, delivering pain relieving, and healing for a long time. Just wonderful.
TATT ( Tired All the Time) it may not be the Arimidex, OR the Thyroid gland, this is coming to my attention, exp. since I now know several women who have HAD benign tumors removed, after calcium blood tests showed a problem with Parathyroid glad ( PTH) http://www.telegraph.co.uk/health/women_shealth/9260217/Is-this-why-youre-tired-all-the-time.html
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Hi Schatzi,
Nice to meet you but sorry that you too have 3 herniated disks! I totally agree with your assessment of the steroids knocking back the pain during chemo - it makes sense. Of course, the good news is that you are done with chemo, but now your bad neck is back. I have been struggling with this problem for years and here is what works for me:
1) I went to a pain management clinic and took sessions in biofeedback and meditation. I had to learn how to relax the muscles in my neck! I am a type A so this was not easy.
2) I do a lot of exercise and yoga (but careful about what kind of yoga more stretching and not power yoga, which doesn't work for me). Pilates has helped because it strengthened my ab muscles.
c) the AIs have given me arthritis including in my neck so my neck hurts much more now and I often have muscle spasms. I started taking diazapam, which is both an anti-anxiety med and a muscle relaxer. It really helps me sleep at night too. (word of caution is that this is considered a very addictive drug, but I have not had a problem and my dose is the same as it was a year ago. I am careful not to up it and may ned to go off it at some point and re-start. There are other muscle relaxer pills out there too. )
d) take a pain pill when I have a long ride or ariplane trip to take the edge off. Ditto with busy vacations - I want to have fun!
e) I just recently gave up dairy because a lot of folks have had much less arthritis on a non-dairy, gluten free diet (not ready to give up pasta).
f) I just recently started taking Claratin because some other folks have found it reduced their arthritis and it seems to help me too.
From time to time, I have considered a cortizone shot and/or operation and may still get one, but I am holding off for now.
Macatac (love the name!), I glad to hear that your operation was such a success! Always good to know about alternatives and thanks for sharing a positive story!
In any event, maybe some of these tips will help you. Good luck! Beau
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Thanks beau (are you M or F?)...we do have some men here as well on some of the topics.
I sure appreciate all your advice...
I have been doing a lot of the same things you are doing. I have tried about 4 muscle relaxers (forget that) and I often take temazepam to sleep/relax...I try to use it sparingly.
As far as exercise goes...even walking on the sidewalk and my treadmill can set it off. I go to a therapist for LE and even when she gently massages my neck, it can cause a headache. It's kinda like damned if I do, damned if I don't.
I googled anterior cervical dessection and it said it usually lasts only 5 years but it is something definitely I will ask my GP about. I am not sure he believes how painful this is...today after 2 days I feel so much better. It usally lasts about 2 days at a time. Glad you got relief from it.
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Thx Sunflowers. My ankle is nearly healed now. Only hurts when I push straight down so I can't get on my bicycle quite the way I normally would. But man o man!! No wonder my training suffered. I can power walk again too. Plus wear HEELS!!!!
I think the big sign things are better is that I am planning all sorts of summer cycling excursions. I am also looking forward to being able to ride clipped in. Makes a major difference on long rides.
All the miles are making my tight jeans fit better too. So hope there as well.
Now back to work. - Claire
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Hi Ginger-My frozen shoulder was diagnosed by an orthopedic surgeon before my bc dx. It is pretty much exactly what it says-shoulder doesn't move w/o extreme pain. I couldn't even raise my arm to wave-it even hurt when I walked. After BMX I went to PT and it helped but after 4 months it is still only at about 70%. Since starting Arimi two months ago, now the other shoulder is tight, but not like the frozen one. ,
Don't know if that helps-it's just my experience.
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So, I took my last Arimidex before vacation last Thursday. I still have hip pain but I think I may have had that before the AI. Probably the arthritis that showed up in x-rays 5 years ago. Time will tell. In one week I feel like my old self! Lots of energy, SLEEPING OMG, all-day fatigue is gone. I still have night sweats but they are much better. I had them when I went off my bioidentical hormone replacement therapy when I was diagnosed lqast November, so I don't expect them to go away. I started Effexor for the night sweats so I'll stay on that while on vacation to keep the night sweats at bay while camping in the heat.
So. I'm going to enjoy my 10-week vacation but much as I'm not looking forward to it, I'll go back on AI when I get back. I'll ride my motorcycle much more safely in the mountains with a clear head and good nights sleep.
See you in August :-)
Nancy
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RE: CALCITONIN
Has anyone ever tried this to fight bone loss? I have used it in the past, but having BC I researched it a bit ( the biophosphates can cause jaw issues) and it says it's a hormone. But what kind of hormone ? Is it a no no for us ?
I am soon to take the dreaded arimidex and already have osteopenia and have broken 3 bones, so I will want to fight the bone loss. This seems to be the most " benign" ( pardon the pun) , but I have a feeling we can't take it .
Anybody going to an MO or other DR soon or knows ?
Many thanks!0 -
Calcitonin is a parathyroid hormone antagonist. It blocks the hormone the parathyroid gland puts out that influences the special cells in the bone that break down and build up the bone. Normally the 2 types of cells work in balance to break down and rebuild bone at an even rate and in a strong pattern. Osteoporosis occurs when the balance of these 2 gets out of wack and more bone gets broken down than built up. I don't see any interactions with other medications other than lithium, and the contraindication listed is allergic reaction, cautions for use in elderly and people who have taken biphosphenates in the past.
edited to correct pituitary to parathyroid, thanks Otter!
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NativeMainer, I'm wondering if you meant "parathyroid hormone," rather than "pituitary hormone."
Calcitonin decreases osteoclast activity (and increases osteoblast activity), which in turn causes blood calcium levels to drop. Parathyroid hormone (PTH) increases osteoclast activity, which causes more calcium to enter the blood. Re: Livestrong website
As for whether calcitonin could be used to treat osteoporosis... It's used, but not as frequently as other treatments, such as bisphosphonates. Calcitonin is a peptide hormone, so it can't be taken orally -- it has to be injected. I think there's also a version of it that can be sprayed into the nose, where it would be absorbed across the nasal mucous membranes. A quick on-line search suggests that calcitonin doesn't work as well as other drugs for treatment of bone-thinning. Apparently, it's one alternative if the patient can't tolerate the more common treatments.
That's about all I know about it, though.
otter
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The calcitonin discussion is interesting. I also had osteopenia when I started Arimidex in November and within a month had full blown osteoporosis. My MO put me on Prolia which is a rankL inhibitor which was approved last October (?) for use in breast cancer patients. It previously was used for bone mets. I believe it works the same way as the calcitonin in that it inhibits the one breakdown process. It is a shot once every 6 months for me, but there is a version used monthly. Perhaps Prolia is just a different name than calcitonin. I know the kind infused monthly has a different name.
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hi shaitzi,
I am a mom with 2 kids, age 11 and 13. I just always thought beau was an exotic word/name when i was a kid so i chose it for my signature here.
Wishing you all well!
best Beau
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hi shaitzi,
I am a mom with 2 kids, age 11 and 13. I just always thought beau was an exotic word/name when i was a kid so i chose it for my signature here.
Wishing you all well!
best Beau
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Otter, you are right, I meant parathyroid hormone. My fingers and my mind don't always communicate properly. thanks for catching that.
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UGH... can the management of these side effects get any more confusing??? Did anyone see the article on yahoo news about taking calcium now? It just makes me want to not take anything & just deal with the bone stuff and pray for the best!
Ginger M
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