Arimidex - Coping with the SE's
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I would have to hide them from myself! Sounds delicious!!
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I finally started my little white pill three days ago on May 14th.
I delayed for three weeks, one because my husband was out of town and I was afraid I would have some terrible reaction all alone. Then for the next two weeks because my friend was in fron out of town and I was feeling halfway human and didn't want to spoil that.
Now I shall see what is going to be the deal for me as I go forward with this treatment. I do take 4000 IU of D3 (I am low in D), Glucosamine and Chondroitin, Womens Ultra Mega Multi Vitamin, Fish Oil, Calcium and probably something else I can't remember.
Will chemo brain return? I am just getting to where the fog is gone although I continue to forget names, dates, appointments, my train of thought. I feel scared at this moment to lose myself so totally again.
It is hopeful to read where some of you are getting a response to the glucosamine.
GInger0 -
I started on Arimidex 2.5 months ago. I'm normally a very positive person, but I am at my wits end! My oncologist sent me to a Rheumatologist for the bone pain I was experincing. She put me on Vimovo 325 mg. 2x/day, then increased it to 500 mg 2x/day. I had to go off of that almost immediately because of the side effects (couldn't stay out of the bathroom). Now she has me on Celebrex, which I have been on for the last 2 weeks.
In the mean time, I received a call from the disability group of my former company (they laid me off while I was on radiation). It seems the doctor's don't think my bone pain is bad enough to keep me out of work. The bone pain has gotten so bad that I can barely turn my neck, have problems getting up from a sitting position, and can only sit at a computer for 15 minutes before I have to stop typing. But ~ I should be able to work, right? The other SEs that I haven't seen in this thread are feminine itching and loss of libido.
I have been supporting my family of 4 for the past 15 years since my husband developed chronic pancreatitis, so I either have to go back to work or go on permanent disability. Since my doctor's won't sign anything indicating that I am disabled, I have to go off the drug so I can go back to work.
I've made an appointment to see my oncologist this Thursday. I have decided that I would prefer a better quality of life than a long, painful life with no cancer.
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Hi Mrs. Mac
Completely could understand you! After 14 months on Femara, I'm being so down because of pains all over and poisoning myself with pain killers, my primary DR suggested me to skip the pill for one or two days and thereafter I was felling so much better for some days, later the same trouble again! I experienced to take the pill every second day, but always this dumb question about getting recurrence. Happy to be retired, was employed for 40 years, cannot imagine to be in your position.
Reading that in USA a high % of patients discontinued taking AI, I'm seriously interested in information about their further living with - or off BC!
Greetings
Usha
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nanaof2
I've posted this b4, but the thread has gotten so long, you may not have seen it - the FIRST SE that AstraZeneca listed for Arimidex was ASTHENIA - I had to look it up - but I think it was Enjoyful who defined it best : "Greek for feeling like crap."
It really does seem to best express how most of us feel - and now almost 4 years of it - I also think the feeling is erratic ( come days better than others, wish I could figure out why!) and also cumulative - feel worse re: Asthenia than I did in Year 1.
AND, it sure is better than a reoccurance. I'm never complaining about it, GRATEFUL I have the option of a treatment which seems to be effective - also from another thread posting ( I wish I could remember her name to credit her)" A spoonful of fear makes the medicine go down."
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Mrs_Mac: It's hard enough to deal with BC and to try to get ourselves healed as best we can. I'm so sorry you face such difficult decisions because you are supporting your family. Can you find out in particular which doctor is denying your disability and appeal to him/her directly? If it's your oncologist, would your primary physician intercede on your behalf?
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Mrs. Mac,
Your signature says IIIa, but also mets - maybe you should just check in the Stage IV Forum to see how others got Disability. Doesn't seem possible to deny it to someone in your staging. And a company lays you off during radiation - jeeez, I blood is boiling thinking of it! Sounds like something you want to call public attention ( local media, consumer advocates in local TV, newspapers?) to.
As for the joint pain, there's a whole list of things many of us have done, and found very helpful. Supplements of Glucosamine, rasing Vitamin D level, fish oil, massage, acupuncture - I've done them all, and cutting out all wheat gluten took me from 10 ibeprofen a day to none! Stil stiff when I wake up, but goes away with a few steps. Also physical therapy, stretching exercises, Yoga, all help.
You are at the time - 3 months - when the SE's seem to kick in the hardest. That was my experience - got much better after that point.
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Sorry JO,
I really hardly believe that tormenting us poor ladies for 5 years, after having one year active healings proceeds, is exigency. The enormous profits of pharmaceutical industry on these very expensive drugs are known.
My aunt with the same Dx was living 18 years after surgery and rads only.
However every one has his own right for his decisions and consequences.
Best wishes
Usha
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Usah
I pay $60. for 90 pills. Nobody is making a lot of money on that - generic anastroole. I'm with JO, I give THANKS I have a medication that I can take, proven effective, and lots of ways to overcome the SE's.
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I am feeling better, took myself out for a date with me; we've had beautiful weather and I've spent happy time with family, friends, my cat (yes!) -- I talk to a therapist once a week, am getting the hang of being 'with' the natural responses to having had cancer and facing my own mortality; allowing more fun this week in general, started a new painting. Thanks all.
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Thanks for all our encouragement!
I'm scheduled to see my Onc tomorrow and will discuss alternative medicines with him. They consider me a IIIA because they never actually found cancer in my breast; only breast cancer in my lymph nodes (8 of them). I've had two lumpectomies and 4 core biopsies ~ all negative. Had a mammogram 5 months before they found the cancer in the lymph nodes and all was normal then!
I called the doctor's office (rhematologist) who told the disability company I wasn't in enough pain to keep me from doing an administrative job, and told them I wanted a copy of my records. They said they would only give me a copy of my lab work and test results and that they do not give patients their entire files. What's wrong with this picture! I'll ask my Onc to request the file from her; I refuse to go back to that office!
I'll send an update after I talk to him tomorrow.
All the best,
Pat
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marybast
I LOVE IT. "took myself out for a date with me." Perfect. My Favorite date...doing something good for myself. A trip to an Art Supply store ( better than candy for me!), bookstore, library, walk in the woods near my house. So happy for you to have a therapist to talk with. I remember a nurse at Dana Farber telling me, when I finished chemotherapy, the the real hard part was ahead of me: learning to get on with my life, and the reality that I had HAD breast cancer. There was the strangest "let down" for me after feeling like I was in the trenches fighting a war for myself, to then being told to "get back to normal." HUH?????? Normal???? whaaaaaaat is that now?
As a student of CRS ( can't remember stuff, cleaned up that last word) there was a signature from a bc poster on another thread which I just loved:
"Breast cancer is like being a guest in the Hotel California, you can check out any time you like, but you can never leave."
JO, I too found watercoor a bit too 'challenging; right now, tended to over work it all the time. Now loving using colored pencils, artist grade, Faber-Castell Polychromos - amazingly better than 'student grade' - really amazing what can be done with them, especially using oderless mineral spirits. Whole new adventure. Getting backk to jewelry a bit too, now that I don't have neuropathy in my hands. Ah, the joy of healing.
Mrs-Mac - Your oncologist will be the GoTO person to get you on disability - crazy that other doc would make a 'judgement' contrary to how YOU FEEL. HOW YOU FEEL - that's the deciding factor, and don't let anybody browbeat you into any other way of looking at your own life!
edited, per usual, for spelling, or non spelling,
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Well I've been trying to catch up on previous posts since April - yes April! Can you tell my life is a little crazy and out-of-control? So much has happened in the past month. I found out on Mother's Day that I'm going to be a grandmother! My DS and DIL are having their first child (due in February). Wow getting a puppy this year and finding out I'm going to be a grandma sure makes up for a lot of suffering last year!
Two weeks ago I got the Zostavax vaccine (to prevent shingles). Sure enough, it would be me that would have a reaction to it. I had a lump the size of a tennis ball in my upper arm at the injection site that also blistered and turned bright red and hot. It itched and ached and I still have a four inch area where the blisters were that hasn't healed completely. I also felt terrible with flu-like symptoms for about four days. I called my PCP to tell him about the reaction and he instructed me to put warm, moist compresses on the area. Well I guess from what Lago went through I'd rather that than shingles.
As for Arimidex, my love/hate relationship continues. I have continued to take it and it's now been a year since I've been on it. I still have joint pain every day and at least 10 hot flashes a day. They are miserable! I'd rather the joint pain than the hot flashes. I have nerve damage in my arm since the bi-lat mastectomy and continue to take Gabapentin for that as well as Effexor for hot flashes. I can't imagine how many I'd have if I weren't taking those meds. If my DH just touches my arm, I get a hot flash. Isn't that awful? Wearing a light scarf or jewelry around my neck is a no no as well. I have to wear layers all the time as I'm cold-natured normally, but it doesn't take much for the meltdown sequence to begin. All-in-all however, I'd rather be alive and continue with the little white pill to try and avoid a dreaded recurrence. I continue to work my very busy job and help my elderly mom. I'm not going down without a fight!
Hang in there Ladies. It's great to read all of your posts again. You are stronger than you think. We are all in this battle together. I pray for a cure for this dreadful disease.
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Hi everyone, met with my audiologist today, hadn't seen him since BBC, telling him I'm lucky to be free for now and discover he has a rare brain tumor. Damn. They've been able to shrink it, so far so good; surgery would mean facial paralysis and deafness on one side. I do feel lucky relatively speaking. I'm starting an oil painting, JO-5, watercolor's too difficult for me; with oils I get to paint over all my mistakes. Night all.
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Caerus and JO - you're talking in artspeak and I don't understand that language at all. My accountant-y brain just froze and I had to reboot.
My daughter and I leave on June 5 for a 17-day jaunt through Ireland and I'm thinking of stopping the Arimidex for maybe a week. Has anyone ever stopped taking it for that long? I simply can't enjoy the trip and the time with my daughter if I'm curled into the fetal position and whimpering.
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Mrs_Mac - Hopefully your MO will be able to get your compete file from the rhumatologist and will share it with you. I thought the HIPPA law passed around 2000 clearly states that medical records are the property of the patient and you legally have a right to them. (You paid for them.)
When we moved a few years ago, I called my doctor's office and asked for my records and they just photocopied the whole thing (visit notes and all) and mailed it to me. No questions asked. They said that legally doctors need to keep all records for 5 years. After 5 years, they may not have them, but within the 5 years, they have them and they belong to the patient.
How big is the rhumatologist's office? If it's part of a larger health care organization, they probably have a "medical records department". If they have that and you put in the request through that department, I expect you would get what you want, no questions asked.
Good luck!
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Rocket
while reading your post, I thought of a friend of mine who has MS, and in the hottest months, wears what she calls a "cooling vest" - googled "cooling vest" and found this online:
Don't know if that is something that might help with the hot flashes. That's about the only SE I don't have. Had them during chemotherapy - and the worst for me was the sweat literally dripping off my bald head - learned how much sweat hair absorbs! It was summer, and I kept an ice bag, or what I think may be called an ice pack - baggie filled with ice cubes, with me to put on the back of my neck and wrists - really seemed to help the hot flash go away quicker.
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Rocket - stay on the gabapentin. I swear by this medication and I truly believe that it prevented me getting neuropathy from Taxol. I was the only one in my breast cancer support group that was on it and the only one that didn't get neuropathy. I am on it now due to nerve damage when I broke my arm in 3 places.
I am doing much better on the Arimidex versus Tamoxifen and I love the fact that I can take Zoloft again and there are less drugs that interact with Arimidex. Yes, I still have joint pain but I had that while on Tamoxifen but I am feeling better than I was before.
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Doc's offices cannot legally not give you your records when you ask for them. They can charge copying fees, and the tend to charge crazy fees, but it's worth it. You can actually sue the doc's office for not giving you a copy of the records-call them again and say you wanted to be sure they would not give you a copy of everything before you talk to a lawyer and see what happens! Try contacting the state board of medicine, too. Also file a complaint with the Joint Commission--that will get their attention. The office legally MUST give you the contact info for all these places, so ask them for it. Then they'll know you know your rights.
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Wow, you guys are tough - great!
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Enjoyful, I stopped taking it for a month for my surgery and felt great.
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When I stopped my five year Arimidex sentence, I found each and every day better than the last. Hurray!!!!!! No negative symptoms at all.
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Congratulations all of you, on completing 5 years of Arimidex (or its generic equivalent).
I have a question on joint pains. I am controlling my knee and ankle pains with acupuncture and the occassional NSAIDS. Lately, I have developed another achy spot on my wrist, just at the base of my thumb. Anybody else with the same problem, joint pains that travel around the weak spots in the body?
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TokyoSing -
My pain started in the small bones of my feet and has since travelled to my neck, shoulders, upper back, hips, knees, ankles, and the bases of my thumbs. Thumb pain seems to be quite common among Arimidex-takers!
Have you been taking Arimidex very long?
E
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Yeah, can't ever tell where the joint pain will hit. Mine's mostly hips and knees, but this week it's also been in my right index finger. Go figure! I think the joint pain's aggravated by alcohol. I cut out alcohol a year ago, but occasionally drink a toast; had three major celebrations over the past two weeks, the last one this Tuesday, and the pain's been noticeably worse. I'm back on the no-drinking regimen, so I'll know in a few days if alcohol was the culprit.
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mary -
There's definitely a connection between alcohol and pain! Mine's so much worse after having a few drinks that I'm afraid to even look at a bottle of wine!
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TokyoSing
the base of the thumb is a CLASSIC place for joint pain on an AI, that's where mine started - your acupuncturist may be able to help with the inflammation - also, I saw a physical therapist who gave me exercises that helped. It does go away.
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I'm gone from this board for a couple weeks and I have more to complain about. Crazy. I thought I would settle into a set amount of joint pain in certain places, and just get used to it.
The worst is my left hand. It's in a permanent cramp 24 hours a day. And yes, I have pain at the base of both of my thumbs. And the foot cramps over the past two weeks have been terrible.
I also don't fall asleep until 2-3am, even when I get up at 8am and stay up all day. I used to be able to take naps, but not now. And when I'm up at night, I'm eating. So I've got 8 pounds bouncing around that wasn't there before. UGH
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Thanks for all the useful info. Having a new pain at the base of my thumb, means I cannot play. I am a professional musician. Darn it! I have been on Arimidex since April 2010. Four more years to go!
Like Sunflowers, I have tried to limit my gluten intake and that seems to help. I did have a couple drinks 2 weeks ago when my daughter got married. Got to cut that out also.
A's a terrible drug but if it's warding off an even more terrible disease, I will live with it.
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Here are some helpful tips I just read for protecting your joints from the Arthritis Foundation:
1. Maintain your ideal body weight. The more you weigh, the more stress you are putting on your joints, especially your hips, knees, back and feet.
2. Move your body. Exercise protects joints by strengthening the muscles around them. Strong muscles keep your joints from rubbing against one another, wearing down the cartilage.
3. Stand up straight. Good posture protects the joints in your neck, back, hips and knees.
4. Use the big joints. When lifting or carrying, use the largest and strongest joints and hips. This will help you avoid injury or strain on your smaller joints.
5. Pace yourself. Alternate periods of heavy activity with periods of rest. Repetitive stress on joints for long periods of time can accelerate the wear and tear.
6. Don't be static. Changing positions regularly will decrease the stiffness in your muscles and joints.
7. Forget the weekend warrior. Start new activities slowly and safely.
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