Arimidex
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Thanks, Jo. Believe it or not, MDAnderson is my second opinion place!!! I had an appointment tomorrow with an oncology group closer to my home to have them get me onto the chemo regimen that we thought was going to be done as long as the bone scan came back negative.
So I'm now at the "no more delays" place even though there is still some. I'm ready to keep working with the team at MDA in one way or another. I don't have it in me to meet yet more new faces and get more advice. I can still choose to go back to a more typical protocol if I want but I'm one to take the road less traveled so I suspect I know how I'll lean.
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Liane, I mimic JO. We all have to come to the decision that we are comfortable with and you sound as though you have given it lots of thought. Go with your gut; that way you won't have to look back later. We can only do the best we can with whatever is at our disposal. Sometimes too much information can work against us if it just muddies the water.
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Liane,
You are in good hands at MDA ............ I use MDA-Orlando. Wishing you well and know there is always support on these boards.
Pat
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Liane, wow! Very interesting. I think what "they" are finding is that the hormonal treatments are proving to be very effective. It's difficult to make the decision on whether or not to go into a clinical trial. I decided not to go into the trial with the biophosphonates and I kind of regret it. I don't know if there is a right or wrong decision. You just have to be comfortable with your decision. It is exciting to know that the medical field is working hard to get rid of this horrible disease. Let us know what you decide and how you are doing.
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Sukiann, I was going to suggest the cranberry juice as soon as I saw your post, but you beat me to it. I find the Cranberry juice is a good thing to have on hand at all times. After enduring a few episodes of urinary tract infection, I started drinking the juice as soon as I suspected I was in trouble. If you can catch it fast enough, you can stop it in its tracks w/out antibiotics. I even drink some when there is nothing wrong just to be 'on the safe side.'
My onc told me on my second visit, three months after stage iv dx that, according to my scans, Arimidex was shrinking the bone mets and that they should disappear. Both my husband and I took this to mean that I was no longer 'incurable.' She assured me that that wasn't exactly the case. The Arimidex would only work for so long and then we would change to something else.
Sheila.
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Sheila,
Did your onc tell you why the arimidex stops working? Does the cancer get "immune" to it? Does the something else we can try mean another AI? I've never had a scan and I'm terrified to get one. I'm stage 2 so the doc said that if they scan all the stage 2 ladies that only a small percentage would have mets. It's too costly and would take too much time to do scans on everyone. I don't know how I feel about not having one (since I ache all over most of the time and I don't know how I would be able to tell if the ache is from mets or from arimidex or fibro).
I'm so glad that the arimidex is working for you! Maybe it will continue to for a very long time. In the meantime, I know they are working on more and more treatments to beat this beast. There are a lot of different treatments out there and some new ones being tested now so we should all have very high hopes.
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I was told that I would take Arimidex for 5 years, then switch to Femara. Just started the Arimidex on 9/19/09 so years to go. During that 5 years the medical thinking could change.
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Cora, I've had high blood pressure since I was 38 (I'm 67 now). It's been controlled with medication for all of that time. When I was Arimidex, there was no noticeable change in my blood pressure. Everyone's system is so different and we all metabolize meds in different ways. If you can tolerate the Arimidex, perhaps you might want to try controlling the blood pressure with meds. If it all works out well for you - then continue. If it doesn't, then you and your doctor will need to talk about alternatives. Good luck. I know how frustrating all of this is. You take one step forward and three steps backward. If you're like me, I'm tired of being a "patient." I just want to be a person. Take care, kiddo.
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There is a study conducted by the National Cancer Institute for post-menopausal women. You take Arimidex, Femara or one other drug whose name I don't recall for 4 months pre-surgery to shrink tumor. Then surgery, probably radiation depending on the individual situation. The purpose of the study is to determine which drug is most effective in shrinking tumor. Then you take it for 5 years post-surgery. Arimidex has stopped working for me however. See oncologist next week
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The study I've been offered is sponsored by Susan Komen. There is no set length of time given for taking the meds. It says that the participant may stop at any time as well as that MD Anderson or Komen could stop it at any time or patient/MDA can stop the regimen if the symptoms worsen or become intolerable.
Still thinking about it. What I want out of it is some confidence that taking the extra med with Arimidex is expected to give my treatment an advantage over taking Arimidex alone. That will have to be one of my questions this week.
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Hi Liane,
MDA Is such a great resource and you are fortunate to live close enough to use them as your primary cancer center. The treatment plan sounds interesting and hopefully less toxic than some of the other options. It seems to me there is a slow movement away from traditional chemo into hormonals and, are they called?, biologicals?
Can anyone offer opinions on this?... so chemotherapy KILLS cancer cells and AI's keep estrogen from feeding the cancer cells. Well, what happens to those starved cancer cells? Do they die? Do they go into hibernation only to awaken when the drug is stopped or becomes ineffective? If we take the AI for 5 years, stop it, then recur or gets mets, are those NEW cancer cells or old ones come back to life?
Pam
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pj, I think I should copy all your questions and hand them to the onco./researcher when I see him next week. This is his world and maybe he can answer us. I'd sure like to know.
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Liane,
Please let us know what he says. I am really curious. I did not have chemo although many women here with my stats have... so naturally I wonder if I have a lot of rogue cancer cells just waiting out the Arimidex.
I think my Drs did not think I needed chemo since I am 62... but what if I had been 59 at time of DX? I guess there is a cut-off but that seems so arbitrary. I USED to feel like a young 60ish woman but Arimidex is giving me a new normal.I do read that Arimidex not only shrinks tumors but can make them disappear. I am committed to the drug for the duration and hope by 2014 the questions about another 5 years or forever are answered!
Pama
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Sukiann
I haven't had a problem with urinary pain.
I was reading the ingredients on my vitamin (Centrum ultra women's) and soy is present. My oncologist suggested at least 800 units of vitamin D and 400 units of calcium for me and I also get the zometa 2x a year. I selected the Centrum vitamins because it has the required units, but it doesn't state what amount of soy is present. This is really getting confusing!!!
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I've been on Arimidex since early August with no real problems other than achy joints.
But, I've developed a headache in the last week....it's been pretty constant. My first thought is ACK! mets in my brain. But, I'm also trying to make sure I drink enough so that it won't be just dehydration. I also thought it may be the flu but I have no fever.
Any thoughts before I call my oncologist and beg for a brain MRI?
ugh. I hate this.
thanks!
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Lisa,
It's so awful that our first thought goes to mets. I am worse than ever recently. Every ache and pain is mets. I've got to stop it! Now, a headache could just be a headache. Could be from anything, stress, dehydration as you said, a little virus. I don't know how long you should wait, I think the unofficial rule is 2 weeks. Anyone else?
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My doctor told me the effects of Arimidex in decreasing risk for recurrence or a new bc continue for about 20 years after you stop taking it -- this assumes you take it for 5 years. Research, so far, does not suggest that taking it longer than 5 years has any effect beyond 20 years. Which makes me wonder if starting it again at the 20 year mark makes sense -- by then I'm sure there will be a lot more research and treatment recommendations.
Re cell growth/death. One article I read said that cells start changing 5-7 years before breast cancer can be detected. I've also read that the body can sometimes detect atypical cell growth and stop it or repair it before it turns into a cancer cell. BRCA positive women lack the repair protein in the BRCA gene to fix these atypical cells and that is why they have a higher risk.
Yes chemotherapy - in variety of ways, dependent on the drug, stop cancer cells from reproducing by attacking them at point vital in their growth cycles (that why we take chemo at specific intervals). It is good for the time we are taking it, but has no effect on newly developing cells - and our cells die and regenerate continuously.
It makes sense that changing the hormonal environment of breast tissue by blocking the estogen recepters (tamoxifen) or stopping the bodies production of estrogen (AIs) would effect an existing tumor and stop the development of a new hormone receptive tumor.
I have been on Arimidex since May and the SEs have lessened.. fewer hot flashes and body aches are better. I'm also on the ibandronate arm of the bisphosphonate trial. Keeping my bones as healthy as I can to keep any atypical cells from turning into cancer. And I haven't eaten this heathily since I was pregnant -- and trying to reduce stress and exercise and sleep good to keep all my cells healthy is my priority these days.
Take Care Ladies
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Lisa,
Hey there, you posted while I was typing. Could it be sinus problems -- headaches from sinus issues can last a week. Do you have a fever? Have your changed your caffeine intake? What have you taken for the headache? If you tolerate ibuprofen, try taking 800mg - a big dose to attack it... or if you have any narcotics leftover from your surgery, maybe take one at bedtime tonight and try to get a good night's sleep. If it's not better tomorrow, then I'd call the doctor.
It is way more likely this is a virus, stress, environmental and NOT cancer.
Sucks that is what we will always think of first - before (hopefully) our rational brain kicks in. know that is where I went when I lost my hearing a couple weeks ago -- and yah it was likely a virus.
Hope you are better soon -- ((((((HUGS))))))
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I just fully freaked out and emailed my oncologist. She's ordering an MRI.
I never really take anything unless I'm told to by a doctor. Also, in a freaky way, I wanted to keep feeling the headache to know it is still here kwim?
anyway, I think I'll take Tylenol now. ugh. I hate this. I'm sure I'm not making my headache any better by the stress of it all!
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Kathy,
I flew to Montana on Thursday and returned home on Sunday. So, I had a few flights. And a change in elevation. I kept telling myself that that was the cause of my headaches.
But, I returned home late Sunday night. It's Thursday and I still have a headache. I don't drink coffee and usually don't drink soda....but I did have a few diet cokes in the past few days.
I don't generally have sinus issues but on a scan way back at the beginning of this, sinusitis was one of the things showing on my scan.
Did I say that I HATE this!?!?.
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I'm hating it with you Lisa! We're all in this together and that's what makes this forum so special. When's your mri? I'm thinking about ya!
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lisalisa,
You have a keeper for a doctor! Listens to you and takes action! I am so glad you are going to get some answer relief and hope that this is all a false alarm and all is fine. There is no way your thoughts aren't going to "go there." Sending good vibes your way........
Pam
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my MRI is scheduled for tomorrow (Friday). i check in at 7:30am; my scan is at 7:45am.
please send positive thoughts, prayers, whatever it is you have for me.
my oncologist is out of town....so hoping that she will check in and get results to me right away. she is awesome so i just hope she's not on a flight or something. thanks for all your posts....it helps!
Lisa
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Sending you good vibes Lisa.
I'm back from a quick trip to VA but now have to unpack, wash and work. I've read everything I have missed in the last week and will post more soon. Still feeling the aches from arimidex. Found out it is hard to drive by myself for hours on end. Trying the cherry juice and also got the flu shot.
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Hi ~ haven't been on here but my brain fog seems increasing so I wanted to ask if that's an SE. Even wonder at times do I have Alzheimers. Gets worse when I'm stressed or have too much to do.
Other possible SEs ~ left sided dizziness? General bad mood? Trigger temper? Sinus stuffiness?
I don't have trouble sleeping but then I take an antidepressant and a Benadryl every night - have done this since '04 when I had perimenopause night sweats, sleeplessness and finally anxiety.
Joint stiffness but not joint pain. Hands cramping when holding steering wheel for more than 20 minutes. Yoga helps clear it up in the morning. Simple yoga - no pretzels. Top row on the Wii routine. Feels good.
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Lisa, I just signed on to check this post. It's 7:44 am and I'm thinking of you! You are in there right now. Stay strong and positive. I think I'm going to have to go through this very soon as I have shooting pains in my arms and legs and I'm not sure why. I hope you can feel our love reaching you!
For all others here, we're all in this together and I'm so happy I found you all. Even if I don't post a lot I read all the entries and I feel connected to you all. I wish the best for all of you.
xoxo
Sukiann
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P.S. I'm on the east coast and you (Lisa) are on the west coast so there is a time difference. You're probably still in bed! That's ok, I'll think of you 4 hours from now too (I think it's 4 hours difference). Good luck!
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Sukiann, Yes, I think they become immune to the Arimidex and start to grow again. I panicked last time I was due to see my Onc because I couldn't find my usual scan form that I normally get with my blood test form. Rang her to be told that she didn't give me one at the last visit. During the visit she said that I wouldn't be having any more scans for awhile. I felt like someone on crutches who has had one knocked out from under her.
I went to my GP sometime in the early 2000's because I was experiencing pain in my whole body, all my bones were continually hurting. As I walked in, he asked what was the matter, told him while I was still standing, that even the tops of my feet hurt. As he was sitting down at his desk, he said, "It's your sinuses, you have sinus!" I just looked at him with my mouth open. Then he told me how to deal with it while writing a prescription and I was out of there in under 2 mins.
He also told me after quite a few X-rays that I had arthritis and gave me scripts for anti- inflammatories. After my dx last year, I went through all the diagnostic pages included in those x-rays and not one of them mentioned arthritis!
When I started to get continual bone pain last year, I would take 2 aspirin and the pain would disappear--at first for 2-3 days and then the time span for relief shrank to hours. I rang my GP when I was nearly crippled, to be told that he had retired and the new Dr wasn't taking any more patients! WTF? I had been going there for 18 yrs. DH rang there for app't for himself and was taken straight away. Finally, found new GP and she sent me to Orthopedic surgeon when x-ray came back with spinal abnormality.
My Onc said that I would suffer from arthritis while on the Arimidex, so now I am trying the cherry juice and also started taking 2 aspirin a day which I will reduce when the pain eases a bit more.
Basically, I see myself as back where I started but with a less than ideal outcome in the long term. During that last Onc visit I asked her about ILC and how long is the average time before it comes back again, which it invariably does. She said that it usually recurs within two years. I went for thirteen years blissfully unaware that I had this hanging over my head. Now, I feel like someone sitting at the top of a steep hill in a wheelchair on which the brakes don't work.
Gee, I'm gloomy today, sorry girls, I don't have anyone I can say stuff like this to.
Sheila.
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Sheila; sorry you are having a tough time. There has to be more they can do for your pain. Do you have pain clinics where you live?
Lisa: By now your MRI is done, it's normal and your headache is going away --- that's the essence of my prayers for you -- simple and to the point. (((((((Hugs))))))))
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Lisa, good luck. Hoping for good news.
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