Arimidex - Coping with the SE's
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I take my Arimidex first thing in the morning not only because of hot flashes (never had any) but because one of the SEs is insomnia and THAT I have had for ages. Seems to be OK in fact even better than before BC.
I have been taking Arimidex for almost 16 months.
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Sickofpink...in the beginning of taking Arimidex, many of us took Claritin...the one a day without the DECONGESTANT...just the antihistimine.
My MO did NOT recommend it but he didn't recommend it for the Neulasta either and that has been proven to ease the joint pain.
It helped in the beginning of the A but when the pains and ached stopped, I quit taking it. It was about the third month I believe. In any case, you should check with your MO before taking anything!
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I switched from taking Arimidex in the morning because it made me sleepy. I take it at night and it didn't increase insomnia. Some people take it around noon, so it can be taken any time.
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marianelizabeth remember the AI's dont work pre meno. I was on the 2yrTam and then 3yr AI because of when menop was deemed to be over. There may be other reasons why people stay on Tam post meno, but the above is the general plan of action.
I take A at night.
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Afternoon women, I'll be seeing the MO mid-June to discuss Arimidex,which I don't want to take1 I already have osteoporosis (65 years old) and I was told that I have an aggressive cancer with a high probability of re-occurence. Soo....what's the point of taking it. He seems to think the risk of reoccurence outweighs the fracture,and i say 50% chance of it coming back are not good odds. I told him if i take it,give me lots of pain meds and Effexor. Any thoughts.....thanks for listening.........
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Its a hard choice patti...always the lesser of 2 evils... otherwise known as "choose your poison".... At the end of the day we have to weigh up the pros and cons which are different for everyone. QOL has to enter into that equation. Despite the horrid side effects of Arim, I've chosen to keep on with it. Theres other things we can do to be pro active as well and I do what I can.
All the best with what you decide.
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Patti, there would be no harm in trying it. You may not have any bad SEs at all. Most people do well, and it is quite natural that people who have difficulty are more likely to be posting here . The good thing is that you can try it, and if you do have problems, you can switch to something else or decide not to take it.
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Patti, Perhaps you could take Tamoxifen. That's supposed to increase bone density. I'm post meno and they offered it to me. Didn't do it for other reasons. I'm pretty nervous about the bones as well.
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Patti, everyone's cancer is different, our ages and physical conditions are different, and we each have to make the choices we feel are right for us. I chose Arimidex and am still on it, a year later, despite pretty bad joint pain and stiffness. I take it i the AM. Have had hot flashes, night sweats and insomnia ever since my DX, when the docs immediately took me off HRT. I had colon cancer some years ago, had, as you did, a grade 3 BC tumor, so I feel the AI's are my best defense, worth putting up with the SE. Time will tell...
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patti....I am 69 and taking Arimidex even tho I am only 2% ER+...my MO figures any little bit helps. I was osteopenic last summer so I may have osteoporosis by now. My next bone density scan won't be until next summer. It's so hard to know what to do and what, if any, meds to take for the bones.
I have been sitting on the fence now for a year. I have a month's supply of Actonel DR sitting in the cupboard but just read there is a rather large percentage of women after taking it 5 years that have Fibromyalgia now.
Prolia is off the table due to thyroid problems so what now?
I hate all these choices we have to make.
ruthbru...still trying to remember to take my daily prunes!!
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I don't think I've posted this recipe for awhile so am putting it on a couple arimidex threads: for achy, arthritis type symptoms; here is something you could try: buy white raisins (they have to be white) and gin. Place them in a big jar together and leave them in the fridge for two weeks. Then eat 8 raisins a day. It produces a natural cortisone effect. This is a family recipe that has worked wonders for various relatives, including my mom.
P.S. if it doesn't work, you can dump the raisins and drink the gin....which will make you feel better for a little while anyway
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Pattithenurse--when I started arimidex I had hair thinning for a while. Then it stopped for several months. It cycled that way about 3 times then it never happened again. And keep up with your activities is the best way to ward off/minimize the joint aches and stiffness. Hang in there!
Sickofpink--when I started arimidex my knees started bothering me more right off--I have known arthritis in my knees. My PCP did some research and found some info about the AI pain and stiffness showing up most quickly in joints that already have some issues, even if those issues were subclinical (not yet showing symptoms). The hip and back pain and stiffness did kick in around 3-4 months, which is typical for joints without a pre-exisiting condition. Perhaps you have some very early repetitive use injury in your fingers from being a writer and the arimidex is highlighting it. I found, as did a lot of other women, that loratadine, the active drug in Claritin taken daily helps block the joint stiffness. It worked wonders for me, as well as making sure I didn't sit still too long. I've been off arimidex since last October, and all the joint issues are gone. Yes, I still have some knee pain and stiffness from the arthritis, but even that is better now. Keeping moving is the biggest thing.
Musical--I agree with you about soy. One friend of mine (no bc history) was using soy for management of menopausal symptoms, had been for a couple of years. Out of the blue she had an anaphylactic reaction to a soy product. Her doc said it was probably due to the genetically modified soy, that other women where also experiencing reactions to soy when a company starts using GMO soy.
Marianelizabeth--the AI's are known for causing stomach upset. Try taking your pill with some food or after breakfast or in the evening, instead. It seems to be rather individual what timing works best.
Patti--What makes your doc say you have such a high recurrence risk? The pathology on your signature doesn't suggest a particularly aggressive type, except for the Grade 3, and the anti-estrogen meds target that specifically by blocking the estrogen that fuels the cell growth. I'm not trying to change your mind, I'm just curious. Ok, I'm nosey. You don't have to answer if you don't want to! Did your doc go over how the numbers change with the various treatments available?
Ruth--thanks for the raisins and gin recipe, I've been thinking about trying it to see if it does anything for my arthritic knees!
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Let me know if it works for you, NativeMaine. I love it when I can do home remedies instead of more pills (especially when they involve food.....or gin
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I had forgotten about that old raisins and gin remedy. DH has had problems taking statins. I think I'll make a batch since I have the ingredients on hand.
I've been on A for almost 4 yrs. Lately I'm mulling over the idea of not taking it the 5th year. My SEs have included bp problems and high cholesterol. Or I think those are SEs. I won't know for certain until I stop taking A.
Any thoughts?
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carolehalston, have you tried nutrition and exercise to help with the bp and cholesterol for another year? Not sure why 5 yrs is the magic number instead of 6yrs, 4.5 yrs, 5.8 yrs, but there must be a reason for the '5' year mark. I'm now in my 5th year and have had a relatively easy time, especially compared to many of you who have had a horrible time with this med so I'm not advocating you continue as it a decision only you can make. My bp has always been and continues to be low rather than high. I contribute that to my trying to keep up an exercise routine. My cholesterol however is somewhat elevated and I think it's becuase of the anastrozole. Hopefully this time next year I will have been off of it for a couple months and the cholesterol will get back into the normal range.
ruthbru, found I don't have arthritis but need a hip replacement instead so I may as well forego the raisins and just head for the gin?
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carole - I found that taking lots of ibuprofen as my internist recommended helped with the bone and joint pain brought on by Arimidex. However, she also warned that ibuprofen and other anti-inflammatories can raise BP in some people. My BP went up dramatically so had to both stop the ibuprofen and take Atenolol for a while. When I stopped the ibuprofen and switched to Tylenol (which doesn't seem to help me nearly as much) she pulled me from the BP med a short time later and my BP has been fine since. So....if you are taking anti-inflammatory meds to deal with any skeletal issues that could be a cause for increased BP rather than the Arimidex.
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carole, have you tried niacin for the cholestroel and at least 70% dark chocolate for the bp?
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Native Maine-I'm not sure of all the info,but that i had a high Ki67 marker.He always types worrisome in his notes. Another interesting thing that is happening for me is I'm beginning to have hot flashes,and I never had them during menopause? I'm 65! It's soo weird. Some women are saying Effexor works for them. And please share the ratio of raisins to gin. I could always try something like that?!! Thanks women......Starting radiation this week.......Yikes!
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pattithenurse,
Did you have an Oncotype on your tumor tissue? I see you are Grade 3 and node positive and did TC. Some MOs send you straight to chemo w/o the test because they are certain your tumor will score in the high risk zone. I'm a lower grade and no node involvement with high Ki67. My Oncotype score indicated that w/o taking Tamoxifen (AIs are a little more effective) or chemo my risk of distant reoccurrance was 40% in ten years. This doesn't take into account local reoccurrance. So it's not unreasonable that your MO would state 50% recurrance. Treatment with chemo and AIs lowers that considerably. AIs alone bring the distant recurrance risk down by 50%. Chemo drops it by another third. So AIs are a really important part of our treatment.
I was terrified to take an AI. But a year out I've managed to get all my SEs under control and experience only minor problems.
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Ruth, my PCP wants me to take niacin, but I'm afraid of it because of its known SE of flushing. My DH took it, without warnings from his MD, and had a horrible attack in the middle of the night. I called 911 and we ended up in the ER for 5 hours. It all was from his prescription Niacin. With my hot flashes, I just can't see taking another drug that will heat up my body. Anyone else tried niacin???
I'm tired of taking so many pills. Every day: anastrozole, Pravastatin, Metformin teice a day ( or placebo), probiotic, Biotin, Vitamin, DHEA, calcium with D, extra D, Krill oil, Symbicort, Klonipin, melatonin, baby aspirin, and I'm sure I'm forgetting one...0 -
Hey WaveWhisper, My daughter lives in Charleston. I want to move there eventually. How is the healthcare in SC? I live in Wisconsin, and have been extremely pleased with all my doctors, nurses, and everyone involved with my treatment, surgery, etc. I will stay here for sure another year. I still need to be monitored everything 3 months, and haven't had my reconstruction yet.
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I have an issue that just started. I have never had a problem with my bladder before. Recently when I go to the bathroom a minute or two after finishing I am having trouble with a small amount of urine leaking. I have been on Arimidex since January and I don't want to jump the gun. I have also started Neurontin 3 weeks ago. For this reason, I search the Internet for leaking bladder and this site appeared. I feel like "really, what next?". I am going to watch it for another week but if it continues I am going to my PCP first. I want something to back up my problem. I am not sure my PCP knows that much Arimidex. My mom has had bladder issues all her life but I have not. I drink plenty of water. I would appreciate any help I can get.
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Patti-I didn't have testing for Ki67, so I'm not up to speed on that one. Sounds like a not-so-good thing, though. I'm going to have to hunt back through the recent posts to find the recipe for the gin and raisins. I know they have to be golden raisins. . .
ClaudiaMetz--the gabapentin is a central nervous system depressing drug, and is most likely behind the leaking There are a few tricks you can try--when you get done peeing try to force out a few more drops, keagel exercises, that kind of thing. I just wear a panty liner and call it good. But definitely talk to your doc about it.
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Doxie,thank you,thank you for some encouraging words! I just seem to spin around with my likelihood of a fruitful,joyful life. I don't feel much joy anymore,I'm afraid. I don't want people to have to look at me,or speak to me anymore. I feel like a freak most of the time. I used to hike,bike,and laugh,and that doesn't seem to be in my future,i'm afraid. I just want pain pills,ativan,effexor scrips when i see him. I don't even want to discuss any numbers anymore.....what's the point?
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If you try niacin, take a brand called 'Slo Niacin' (I find it at Walmart). It is a slow release niacin, so you shouldn't have as many problems with flushing (don't take the no-flush niacin as it is not as effective).
Patti, hang in there. Initially it is very hard to adjust to a new normal, but things do get better. Go out and do things, even if you don't feel like it, for sure keep exercising because that helps alot in every way (check out the 'Lets Post Our Daily Exercise' thread on the fitness forum if you'd like some exercise buddies), take up some hobbies or do some of the things that you've always said, "Someday I should.....". You can MAKE some positive things come out of this experience.
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NativeMainer, thanks for the information on the Neurontin. I was wondering if that could be it. It has helped with some of my pain issues. I did get some panty liners and will try the kaegel exercises. It seems like when a drug helps you there are side effects. I get tired of telling a doctor there is something wrong. Go for my six month mammogram on Friday. Hope that goes well.
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Patti-I'm taking Effexor for hot flashes, I still get them.
What is the significance of the Ki67?
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pattithenurse, I feel for those of you who struggle with depression with BC. Depression was worse for me than being diagnosed with BC. I fought it for years before I found the right med and had a good therapist. To have this concurrently with BC diagnosis and treatment, it is so unfair. Thankfully I had it under control before BC. Please ask for help for this.
Though it may feel that way, your life is not ending. It's a lengthy bump. A time to reassess. I finally feel healthy. I ran a 5K a few weeks ago for charity, something I'd never done before. I bought the kayak I had wanted for years. Did lots of core training and weight lifting so I could haul it around myself w/o triggering LE. I was so afraid I would have to give up that dream.
You will get back to your healthy active self in a few months. In the meantime, the treatment is to get you there.
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spunkyboobs, Ki67 above 14-20% indicates high proliferation of cancer cells. Chemo works better on highly proliferating cancer.
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Mamapeg, I can't vouch for all of SC, but healthcare in Charleston is outstanding. The medical university is here, with a National Cancer Institute affiliation. Its BC program is excellent. I like its team approach... as soon as I was dx'ed, they set me up with a surgeon, MO, RO, nutritionist, genetics counselor and psychiatrist. My bs, MO and RO all were women.
There are 3 other hospital systems, and one touts a plastic surgeon who is world-known for breast reconstruction. There even are threads on here -- " Charleston Bound." Women fly from all over to see her.
I've just lived here 4 years and frankly am embarrassed at SC politics, but life in and around Charleston is great. I moved there because my daughter had moved there, with my grandkids.0
