Arimidex - Coping with the SE's
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Thanks, Kira
and for those wanting to be very, very careful ( which honestly I'm not) I "googled" does buckwheat have gluten? and found this very interesting page:http://www.enabling.org/ia/celiac/ada.html
So buckwheat, quinoa, and sveral other grains seem to be gluten free! YEAH. More options. Thank you all so much for this information...I was getting a wee bit weary of brown rice
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Sunflowers, soba is not supposed to contain anything but buckwheat; but I have heard people say that some cheaper varieties sneak a bit of wheat flour in. So read your lables
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Thanks for the info!
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Anyone out there please help me. I am coming back here to post in a very long time. Got my son married last Saturday, so now I can concentrate on my life again.
I am seriously, very seriously suffering from an almost disablilng numbness, pain, tingling, sharp pain in fingers and almost frozen right and left hand, arms. I started taking aridimex on March 3rd. Had no bad side effects and was very happy. I told my doctor that I was lukcy not to have any side effects, however, he had said that side effects will happen after a while. About two months later in May, I started having this most horrible disabling pain in my hands and arms. I am seeing my Oncologist this Friday, however, in my last meeting with him, he had mentioned that one of the side effects of anti-hormone therapy is Arthralgie (not sure of spelling), which is like arthritis, but not really the same thing.
My God, my life is over if this thing doesn't go away. I won't even be able to type anymore and the pain is unbelievable, it is too much to take. Today is June 21, I stopped aridimex on May 25, so it is almost a month of no medicine, but I still have the side effects very strongly. Am I completely destroyed? Please someone help me. Is anyone having the same side effect?
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Oh Lovely, I am so sorry. Good grief.
You need to have your oncologist get to the bottom of this. It could also be from the chemo.
Arthralgia, so that you know, is a mild tiredness/achiness in the joints. This is not what you are experiencing.
I can't help you on the rest, as my symptoms right now are "wipeout while cycling in wet weather". So hobbling around with a very swollen left foot, banged up knee, and sore shoulder.
Anyway, you should expect these problems to be resolved, and no, it's not your last visit until they are.
Good luck on Friday. - Claire
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to LovelyFace--why were you taking arimidex if you are ER neg?
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I was 5% progesterone positive (not Estrogen positive). I was given a prescription of Zometa by infusion every 6 months and aridimex. The Onc. said that aridimex was my insurance (life insurance). According to guidelines, anyone who is any hormone positive (any percentage), is supposed to benefit from hormone therapy. My Onc. told me it doesn't matter what the percentage is. I am on the border of tripple negative, or slightly positive, just 5% progesterone positive........
So far I had only one infusion of zometa on Feb. 22nd and started aridimex once I finished radiation. I am not sure why my doctor said that aridimex causes Arthralgia, as no, my symptoms are not mild joint pain. Mine is something else and I am wondering what is causing it.
Does anyone take Lorazapam? Could this be a side effect of that? That is the only other medication which I take, although haven't taken the last few days.
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Lovely Face, get a notebook and write down questions for your oncologist. As AJSL8 just pointed out, if you are ER negative there would be absolutely be NO REASON for you to be on arimidex, it is only prescribed for, and benefical for ER positive women. Something does not make sense here.
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Lovely Face, I have neuropathy from Chemo but some people get it from Arimidex. My symptoms of neuropathy sound a lot like yours but mine is mostly in my feet. When I get the pain, which isn't all the time, the pain hurts and shoots and feels like electrical shocks in my toes especially. Neurontin is used successfully for Neuropathy.
Hugs
GInger
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Lovely Face--I take larazapam for anxiety, what you are describing is not a side effect of lorazapam. Keep after your doc until you get relief from the pain.
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Lovelyface, if your Onc still says you should be on Arimidex you really should go for a second opinion because it's contraindicated for your ER. You are in so much pain, I'm surprised you could not get in to your Onc immediately. HUGS.
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With ANY medication there are risks and benefits and with only 5% hormone +, it sounds like your risk if very lower (and I agree about getting a second opinion) but your risk of side effects is so high that it seems to outweight the small benefit you get from taking it. I hope that makes sense.
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I started Efflexor last night. Today while working outside I got a little dizzy..went inside and had some water ,my husband insisted I have some soda with sugar...thinking low blood sugar. Can someone with experience with this medication fill me in. Does it take a few days to get use to this. I am really hoping I can tolerate this for help with hot flashes. Any info would be greatly appreciated.
Hope everyone is safe from the dangerous floods and fires.
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Hi,
It can take a few days to get used to it. I started with 75 mg and I am now on 150. I take 75 in the morning and 75 at lunch time as I found that at night it kept me from sleeping. I still get hot flashes but not as bad as I used to. Now I seemed to have found something else that works and it OTC. It's called I-cool. Its about 20.00 for a month supply. Its hormone free. I have been on it for about a week and some days I am actually thinking - Did I have a hot flash today? Trust me I usually remember them usually.
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Yes, Mersmom, it does take a few days to get used to it. I felt a little nauseous and sleepy, but it only lasted about 3 days. I also HAVE to take it with food or I get nauseous, so I take it with breakfast. I've been on it about 2 weeks now and really feel good, fewer hot flashes, and I think it helped my achiness from Arimidex. I'm really glad I have it!
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Thank you Ladies...I am encouraged. The Dr. told me I would love it or it would do nothing for me. He also said it would decrease my appetite ....that would be nice. I have developed a real chocolate thing and cookies...I have taken a "real shining" to them. I do not mind finnding a new recipe every few days and filling up the cookie jar.
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Mersmom,
From my experience years ago with Effexor, I was started at a very small dose, 1/2 the 75mg. I was taking it for depression, and it wasn't right for me. But I do remember being told it has to be taken gradually - so maybe you could check with your doc if uncomfortable things continue, and you'll be started on it more slowly.
I'm drooling at even the thought of having a cookie jar - but it isn't allowed in my house
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HI Lovelyface,
I hope that you are feeling better today! I just want to add to what others have said: 1) please seek another opinion if your onc does NOT take your symptoms seriously and follow up with a series of tests to try to figure out what is going on.
2) If you have stopped the Arimedex and do so for a period of time and still get no relief, there is a chance that something else is going on, unrelated to the Arimidex. For example. you might have a herniated disk in your neck. I have three and oftern experience numbness and pain in my arms because of them. No question, arimidex has made my symtoms worse. I now also have carpel tunnel in both wrists, most likely as a side effect of the arimidex. You could also be suffering from that as well.
3) I do not know what is the right road for you; only you can decide that. I hope that you will work hard to understand what possible tests/problems might be causing you such pain. Cancer is just such a bear, but part of the deal is to try to be your own advocate and to believe that you should push for answers. I have learned that wisdom from folks on this site, who armed with with lots of info that my onc didn't even know.
4) I have had a nagging problem with jaw pain (in addition to my pain with my 3 herniated disks in my neck) since part way through chemo last fall. I recently saw a neurologist who recommended valium as a muscle relaxer to help stop the constant muscle spasms that i was having. It has really helped - not only with the physical pain because my muscle spasms are reduced, but also with my mood. Constant pain is really depressing!
In any event, please don't put up with constant pain. Try to get answers and get some pain killers or something like valium to help in the interim. My only other insight is to try to be patient. For what it is worth, I am still on the journey to see if I can resolve my jaw/ neck pain. After numerous tests, etc, I am awaiting my next appointment at a pain clinic to see if a steroid shot might be useful for either my jaw or neck. I do not have a definitive diagnosis yet. I have even had the pleasure of an MRI with a "hot spot" that they thought could me metastastic disease. Fortunately, after a two week wait, my bone scan came back clean (yeah!).
I am into yoga. music and long walks, along with my family, to keep me positive. I hope that you have a strong support system as it really helps during these stressful times. . Please don't suffer more than you have to. If getting off the arimidex does the trick for you, you may need to weigh the benefits vs. the risks/negative effeccts. I wish you peace with whatever choice you make. .
best of luck, Beau
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Lovelyface
The 3 month mark of taking Arimidex seems to be the real KICK IN point for SE's. Mine wer so bad, numb hands, pain so bad in hands couldn't sleep. My docs took me off it for 6 weeks - during which time I started using wrist splints, saw a physical therapist who gave me exercises for my hands, stretching, saw a massage therapist often. Went back on Arimidex - and the SE's were much, much less. I stil wore the wrist splints for sleeping for several months. They really helped too.
I'm 66 - so expect some of the achy joints
I also see an acupuncturist - and it really, REALLY helps me. Good luck to you too! 0 -
That 3 month mark seems to be the kick in time far all the AL's. I just wish my Onc. had warned me about that. When I complained he just offered to give me another one. I chose to stay with the one I was on, and make some life style changes to try to lesson the SE's. That has worked for the most part for me. I have been on Femara for 8 months now, and my SE's a much less than they were.
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Hello all. I am joining this group very soon. I have five more days on the Femara and then I get a 7 day break. The Dr. is hoping that some of my joint pain will improve with a switch. I have been on Femara since Dec. and before that 6 months of tomoxifen. Everything else is in my sig.
I have had extreme knee pain and finger pain. I also developed trigger finger in both of my middle fingers. Here's to good luck with this new drug!
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opps forgot to add it to my favorites.
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KittyDog- I have trigger finger in 3 fingers, middle, ring and thumb all on my right hand, some people don't know what it is. How do I fix them?
Nancy
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Just wanted to let everyone know, there's a great new thread on the Alternative, Complementary Forum: Survivors who had chemo etc and are into Complementary medicine
Valuable information being shared.
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Caerus-Sunflowers, there's a lot of vitriol going on in the latest entries on the thread you quoted. That's the first time I've seen that happen. What a shame. Oh wait, maybe I picked the wrong one? I'll try again. Yikes, I mistakenly went to the first one listed. Don't go there unless you like a fight.
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Marybast - you must have gone to the OLD thread - "only alternatives' - the NEW thread is wonderful and was started to AVOID that kind of vitriol. The 'anti chemotherapy' also seemed to hook into some very OLD conflicts that existed between "liberal/conservative" on this site. Many women started their own site, and they still seem interested in posting here too. Not saying anything about why I think it' happening - except find it SAD SAD SAD SAD that any woman would use a bc site to express that kind of vitriol.
The new thread should stay peaceful. Seems to be very sensible women posting valuable information.
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Yes, I did go to the old thread and yes, the new one is very helpful. Thanks.
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Hello. Can any one please describe the aching or pain they feel from arimidex? Is it painfull? Is is mostly in the joints? Can it just be in one joint at a time or does it tend to hit all the joints at once? Is it sharp, dull, throbbing, shooting.....????? Can your joint feel fine one day and the next hurt? Is it easily relieved with advil? Does the joint hurt if pressed on? How do you know if it is just an ache or something more ominous? I'm scared. My moms right hip started to hurt last night and my mind is busy..... on a scale of 1-10 can you rate the pain? Thank you so much for all your help. You have all been wonderful in the past. These boards truley are a God send. I put this question under another topic but did't get any responses.Thanks.
Diagnosis: 5/4/2010, IDC, 2cm, Stage IIa, Grade 2, 0/3 nodes, ER+/PR+, HER2-0 -
jlee--everyone experiences the SE of arimidex differently, but for me my hips, knees and back are stiff and somewhat achey when I first get out of bed or up from a chair when I've been sitting for a while. My hands and arms get numb and then pins & needles tingly at night and when in certain positions during the day. I have arthritis in both knees from before bc and arimidex and my experience is that the feeling is very much like the arthritis pain, but with more coming and going. The aching and stiffness eases up quickly once I start moving, and I can avoid some of it by getting up every 15 to 20 minutes when I'm sitting and working on the computer, reading or watching TV. If I'm in a long meeting I sit in the back so I can stand up periodically. The hands/arms thing is probably carpal tunnel sydrome according to my PCP, and considering how much time I spend on a computer (for work and for personal use) it's not surprising. I can manage that with braces at night. I've got about a year left on arimidex, so I'm not persuing any more treatment for the carpal tunnel until after I'm done. When the hips back and knees are really achey I take tylenol and get pretty good relief. Heat helps me, too. The aching I feel is dull, sore, like an overworked muscle. It comes and goes and can travel around. My joints don't hurt any more or less when touched or pressed on but massage sometimes eases the pain. As far as rating it, that is very variable for me. The worst for me is around 8, but usually I would rate it as 4 to 5. Since it rarely lasts more than a few minutes after I get moving I usually don't take anything at all, except for the dog for a walk. Walking is the best therapy for me. The more I walk the less I am bothered by the joint aches and stiffness.
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jlee--everyone experiences the SE of arimidex differently, but for me my hips, knees and back are stiff and somewhat achey when I first get out of bed or up from a chair when I've been sitting for a while. My hands and arms get numb and then pins & needles tingly at night and when in certain positions during the day. I have arthritis in both knees from before bc and arimidex and my experience is that the feeling is very much like the arthritis pain, but with more coming and going. The aching and stiffness eases up quickly once I start moving, and I can avoid some of it by getting up every 15 to 20 minutes when I'm sitting and working on the computer, reading or watching TV. If I'm in a long meeting I sit in the back so I can stand up periodically. The hands/arms thing is probably carpal tunnel sydrome according to my PCP, and considering how much time I spend on a computer (for work and for personal use) it's not surprising. I can manage that with braces at night. I've got about a year left on arimidex, so I'm not persuing any more treatment for the carpal tunnel until after I'm done. When the hips back and knees are really achey I take tylenol and get pretty good relief. Heat helps me, too. The aching I feel is dull, sore, like an overworked muscle. It comes and goes and can travel around. My joints don't hurt any more or less when touched or pressed on but massage sometimes eases the pain. As far as rating it, that is very variable for me. The worst for me is around 8, but usually I would rate it as 4 to 5. Since it rarely lasts more than a few minutes after I get moving I usually don't take anything at all, except for the dog for a walk. Walking is the best therapy for me. The more I walk the less I am bothered by the joint aches and stiffness.
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