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Arimidex - Coping with the SE's

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  • ruthbru
    ruthbru Member Posts: 46,928
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    I am thinking that the (dreaded) word moderation is probably the key with soy, beef, or anything else.
  • ronqt1
    ronqt1 Member Posts: 565
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    Hi all: haven't posted in a few days, just to keep my blog going,

    I have been off A since 6-19 due to severe hand problems, went to orthopedic surgeon, who took x-rays, and it is not carpal tunnell, it is tendonitis, arthirits, and tendon problems. Went to onc on 7-21, who decided to keep me off A, but to call him on Aug. 4. I called on Aug. 4 said my hands are still giving me a nightmare. BTW, on Aug, 3 I went to primary who was very kind and said he would prescribe physical therapy if I wanted it. Anyway, when I called on August 4 I was told to stay off A and wait until end of August to speak with him about what options I will have to continue with A or either Femera or Aromisen? (spelling) may be incorrect.  I am having a good time off A but nightmare with pain in hands still continue. For any gal who has gone off A after completion of 5 years, does the pain ever go away. I was also concerned that two months off would somehow bring the C back. He said no. In any event, now I wait until end of Aug to call.

    My 1 year mamo is coming up in late Sept. Boy, what a year this has been. One thing good, I have all of you to blog away.

    Thank you for listening (reading).

  • ruthbru
    ruthbru Member Posts: 46,928
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    Well, the one GOOD SE of all this is all the amazing women one meets along this journey!

  • patoo
    patoo Member Posts: 5,243
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    In case some are still looking for the other 'Arimidex' thread:

    http://community.breastcancer.org/forum/78/topic/731121?page=120#idx_3573

    New page and don't want to go back and lose this (because my eyes are closing and I want to go to bed) - jessamine I think it was you who posted that the no-soy debate has been discredited?  Can you (or whoever posted) post the link to that or is it on another thread?  Thanks.

    Night my wonderful sisters.

  • jsmiley60
    jsmiley60 Member Posts: 31
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    Thanks for all the responses and encouragement regarding me starting my A! I'll keep ya posted.

  • jessamine
    jessamine Member Posts: 123
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    RE: the great soy debate- here is this-

    http://www.breastcancer.org/tips/nutrition/new_research/20091208.jsp

    "women who ate the most soy had a 23% to 32% lower risk of recurrence compared to women who ate the least soy"

    My understanding is that the phytoestrogens bind to the estrogen receptors in the cells in such a way that the bad estrogen can't get in.

    This article doesn't really address the differences between derivitives (isoflavone, soy protein etc) and whole soy foods but folks in the know (IE the nutritionist at my oncs) feel pretty strongly about that distinction.

    I would add however- I would not feel safe eating non-organic soy. Most non organic soy is GMO, and GMO foods may or may not be safe but what we do know is that what they do the modifications FOR is to allow them to use many times as much pesticide and pesticides are definitely linked to cancer.

    (edited b/c i found the link and before it said, I'll find it tomorrow. Nope, it was easy as pie!)

  • mohonda
    mohonda Member Posts: 10
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    Hi Sunflowers,

    I think your confusing Soy and flax products with EPO. Soy is an estrogen modulator and is not recommended for anyone with cancer. Flax also is know to modulate hormones and is not recommended either. But EPO does not have those qualities, I know read plenty of studies; it mainly reduces PMS and inflamation in joints and has no affect on hormones.

  • hrf
    hrf Member Posts: 706
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    jessamine, thanks for posting this study. However, I also read that this may not apply to North American women who haven't had soy products in their diet as children and adolescents. I think it's important to get advice on our own situations and not to adopt this study as absolute truth. In my own experience, I had TN bc almost 6 years ago. In trying to live a healthier lifestyle, I went more organic and plant based, I added organic soy milk and organic flax to my organic oatmeal every morning. Three and half years later I had a new bc which was 100% ES+    I have drawn my own conclusions for myself. For me Arimidex is an absolute must and no soy regardless of what the Chinese study says.

  • Dilly
    Dilly Member Posts: 394
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    hrf, I just got my scrip for A this week, the day after finishing rads.  Med Onc and I were discussing various supplements such as Calcium, D, fish oil, etc, and foods (I like sugar too well, but am working on it), and Onc said the main thing for me was to read labels and "NO Soy". - When I asked about soy sauce, which I like, she frowned and said "only small amounts."  I'm confident in her skills & knowledge base and am going to stick with  her recommendations. My tumor was 95%ER+

    It's not hard to find and give up the 'whole or labeled' soy products, but as an additive in everything, giving up soy becomes problematic.  It's back to basics for me, for sure, and a good thing we like beans & rice, and have a garden.

  • NatureGrrl
    NatureGrrl Member Posts: 681
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    mtg, sent you a PM with some of what I know/believe and some links.  I didn't want to "hijack" this thread with an OT long discussion! Smile  I don't eat "fake meats."  Some veggie burgers and other fake meats can be bad because of the heavily processed soy they're made with -- plus, some can contain hexane, a neurotoxin.  Check out the lists for brands that are safer. 

    As Ruth said, moderation with anything is the key.  I eat tempeh/tofu but generally no more than once or twice a week and often quite less.

    I see there's a lot of posting about the soy controversy -- I believe there are some threads on that topic (my links to threads rarely work but they should be easy to find!) that may help with links to research, etc. There's no definitive answer and ultimately it's up to us to read the research and decide for ourselves.  

    ronqt, ouch, hand pain is awful.... I'm sorry you're going through that.  At least a couple of us are convinced that A pain is at least in part from inflammation, have you tried taking anti-inflammatories and/or an anti-inflammatory diet?  Just an idea.  I will send healing thoughts for your hands!

  • patoo
    patoo Member Posts: 5,243
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    Thanks everyone, I just thought there was new information out there.  I had also heard/read previously that the soy study was against women who had major amounts of soy from a young age (Asian).  I guess the jury is still out.

    Sorry for hijacking this new 'A' SE thread.  I'm guessing there is a 'Soy' thread where all this is posted already. 

    So, back to SE's.  Feeling a little discomfit in my right wrist again so may use the soft splint for a day or so as that helped before.  Also having warm flushes but that may be because I haven't been watching my sweets (I've been eating them instead!)  However, realized the last week or so that my hip pain is tremendously improved - I think it may be the Vit D3 increase.  I'm doing about 3800 mg/day. 

    Well, better give my boss the rest of my working day.  Later friends.

  • meadowlark
    meadowlark Member Posts: 6
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    Dear Lowrider,

    Thanks for the very informative reply. Sounds like you are under great care at the present. The MRI seems to have been the test to find  your cancer. What about the blood work, why didn't it show any activity? Your MRI suggestion seem to be the best for follow up to check acti vity rather than just blod work. Also I didn't understand what you meant about the uptake on your lymp nodes. What did you find there. We all could use some insights like you have given us to keep all the test we need in our future. Thanks again, Meadowlark p.s. I will be gone for 2 weeks but try and stay connected.

  • Rocket
    Rocket Member Posts: 910
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    Hi Ladies, 

    I appreciate all the valuable information on this topic.  I have been taking Arimidex for 3 and 1/2 months and am experiencing a lot of joint pain, especially in my left hip.  It has been getting worse, but is not constant.  If I sit in my office chair for an hour and then try to stand, the pain can be excrutiating.  After I walk around a little, it goes away.  It has also been waking me up at night from pain in both shoulders.  I'm scared of bone mets and wasn't sure if the pain is being caused from the AI or from something else.  I have an appt. with my onc in a little over a week and will let her know, but wanted to know how likely it might be that it's the med vs. mets.  I didn't have any lymph node involvement and had a bone scan and CT scan.  Neither test showed any sign of distant mets, but did show arthritic changes.  How much can I trust these tests and if the pain is being caused by the AI, does it usually go away after a few months?  Would it typically hurt in only one hip and not the other if the med is causing the pain?  Thanks for any answers and help you can provide.

  • ronqt1
    ronqt1 Member Posts: 565
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    Please, please, what is an anti-inflamatory diet???

     Sounds interesting. Healing thoughts back to all.

  • NatureGrrl
    NatureGrrl Member Posts: 681
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    Anti-inflamatory diet, see Anti-Cancer, a New Way of Live, a great book with a lot of scientific back-up, but it's basically the same as the liver-healthy diet mentioned earlier in this  post (I think). Dr. Weil has his own take on it and his guidelines are more general but good.  In the list from the book are veggies in the broccoli family, sweet potatoes (no white), onion family, all sorts of berries, carrots, citrus (but I think grapefruit is off if you're on A? I'm not sure about that), omega 3's, ginger, mint family... if you can get the book he covers it in a fair amount of detail. I recommend the book; even if you chose to not follow it, you're bound to learn something that resonates with you.

    Rocket, that's about when my SE's hit.  They did subside a lot with time (and like you at first I thought bone mets, scary) but have been much better since I started taking D3 and then fish oil... there are many of us that seem to have benefited from one/both.  Check with your oncologist before you take anything but there doesn't seem to be a problem with either of those for any dr's I've heard of. And yes, I tend to have pain more on one side than another (although not always), as do others, so it may be the meds.  Hang in there!

  • MTG
    MTG Member Posts: 337
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    ronqt1 - In case you're looking for an even more basic answer that that given by our oh-so -knowledgeable Naturegrrl, an Antiinflammatory diet is one that focuses on (a) eating foods that contain specific substances that will help relieve the joint pain and inflammation and (b) avoiding foods that are likely to cause inflammation.

    Just to get you started, for foods to eat, take a look at http://www.metabolismadvice.com/anti_inflammatory_food/ 

    For an idea about foods to avoid, take a look at http://www.rense.com/general81/lupus.htm. This was written by someone with Lupus so it is more extreme/absolute than we need to be but it does give a pretty comprehensive look at foods that have may cause inflammation. Tops on this list and most others that I've read is Gluten.

  • patoo
    patoo Member Posts: 5,243
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    Rocket, I agree with Nature that it's probably just a SE of A.  When you see onc next week please insist they do a Vit D3 test to check your levels.  I'm claiming that my increased intake of D3 has led to tremendous relief to my right hip (yes, only the right).  I also had issues with only my right hand (tried to get carpal tunnel but I beat it up and forced it out LOL) and then trigger thumb on only the left hand.  So, yes, it can affect only one place, one digit, one side, only when sitting, or only when getting out of bed, or... you get the drift.  So don't stress yourself with the thought of mets - it's nothing until proved otherwise!

    Nature, I've had that book since forever and still haven't gotten past the first chapter - I'm just no longer a reader - but I will try again because I still have so much to learn.  Thanks.

  • Julia257
    Julia257 Member Posts: 203
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    Good morning, I'm here asking questions again...and thank you, thank you in advance.  Worried that I'm wasting away ...recently losing ~30 lbs, with chemo (TG now in the past) my wbc and rbc counts were both 2, etc., my boyfriend brought me two buckets of powdered protein.  One is by Jarrow, Brown Rice Protein and the other, Proventive Harmonized Protein...both soy-free but both have flax seed.  I have seen contradictory reports on flax seed.  Any thoughts on how my new menu will get along with A.  Also btw I am a lacto-veg.  Thanks again.  Julia

  • Rocket
    Rocket Member Posts: 910
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    Thanks Nature and Patoo.  I have been taking D3 (5,000 IU) every day and also Omega 3, and 6  (1,000 mg twice daily) for a couple of years, so I haven't noticed if it's helped or not, because the pain started soon after I began the Arimidex, but has steadily increased.  I emailed my onc and she replied that she believes it's most likely a side effect from the Arimidex.  I felt relieved about that.  I have my hysterectomy/oophorectomy tomorrow morning and can't wait until it's over.  I pray they don't injure my bladder.  I have interstitial cystitis too and it's very painful to be catheterized.  I'm not looking forward to it.Frown

    Thank you more experienced ladies again for all the helpful information.  I'm so grateful for this site.

  • pj12
    pj12 Member Posts: 18,108
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    Bless your heart, Rocket. SO much to have to go through. My thoughts and prayers are with you. Be kind to yourself and don't push too hard. Do you have help? Thinking of you!

    pam 

  • NatureGrrl
    NatureGrrl Member Posts: 681
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    Julia, I know there's been a lot of discussion about flaxseed.   I have bad luck with links to other threads but this should work with a cut and paste:

    http://community.breastcancer.org/forum/47/topic/726669  

    Google shows tons of results as well.

    Most of the studies have been on lab animals but there's lots of evidence that flaxseed reduces tumor growth/prevents tumors.  The smaller tests that have been done so far (that I'm aware of) on humans, in particular, one with women with breast cancer, also showed tumor reduction.

    Overall, what I read has made me decide that flaxseed is fine and probably even good, as flaxseed that I grind myself (a coffee grinder works great) -- they have to be broken up (or carefully chewed, and since I often put them in smoothies, I don't really chew then!).  I thought I read something about not using flaxseed oil supplements and maybe flaxseed oil but I don't know if that's right or not. Someone else chime in?

    Have you talked with your oncologist about weight loss?  S/he might be able to give you some more tips for your specific situation.  Might be worthwhile to find a good registered dietician -- someone who's worked with cancer patients and v*gans. Protein powders sound like a good idea as long as they don't have any "bad" stuff in them. I don't see any reason the powders should be a problem with A. I've only heard for sure that St. John's wort is a no-no.

    Patoo, I just pick up the book and read what appeals to me at the time; when I was done with treatment I was most interested in diet so that's what I read...

    rocket, glad your mind is more at ease, sounds like you're taking plenty of D3 and oils, but some people have really low D levels and have to get shots (I think they're shots) with a mega boost some weeks in a row to get their levels back up, if your dr. will agree it wouldn't hurt to test your levels. Also, your body may simply adjust with time... Exercise, even mild, helps me too.  And I've started using aspercream on my knees although since I started on the fish oil they're much better.

    Long as usual. I think I'm genetically wired against writing short posts Tongue out

  • rrartist
    rrartist Member Posts: 3
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    I have been taking Arimidex for 2 and 1/2 years and started experiencing eye problems about six months ago that have gotten progressively worse. I now have a chronic case of Blepharitis that requires costly and time consuming treatment plus visual distortion and sensitivity to light. I had a lot of the other symptoms- depression, hot flashes, joint pain, memory loss, fuzzy thinking, weight gain- but all to a degree that I found manageable. I have also recently been experiencing a worsening of cataracts as well as thinning hair and eyelash loss. Chemo and radiation were not as debilitating as this drug. My oncologist insists that the drug effects are not cumulative. I don't believe it. I am seeking further advice from other doctors and would like to hear from other women with similar experience.

  • ruthbru
    ruthbru Member Posts: 46,928
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    This is from the BCO archives. I am erring on the side of caution and not adding flaxseed to my diet.  

    QUESTION: Does flaxseed oil help with the prevention of breast cancer? If yes, how? How much should one take for it to be effective?

    ANSWER: Flaxseed contains a high concentration of lignans, which can act like very weak estrogens. The theory goes like this: If your body sees these weak estrogen-like substances instead of your own body's strong estrogen, then the bottom line is less estrogen effect on your body's tissues. This may be particularly important for breast tissue, which likes estrogen around and tends to grow in response to it. Keep in mind that this is theory. It remains unproven, even though you will find many people having many strong ideas about this. On the other side of the fence are those who think that it's a bad idea to add any estrogen-like substances into your body. They think it's best to avoid anything, in whatever form, that might stimulate growth of breast tissue. Flaxseed also contains fiber and alpha-linoleic acid, an omega-3 essential fatty acid, which helps lower cholesterol.

    A tablespoon a day is what the proponents suggest; "none" is what the concerned folks would tell you. Because this is a tough one to study, we might never come to the "right" answer on this, at least no time soon.

  • ruthbru
    ruthbru Member Posts: 46,928
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    Julia, I also think you should be working with a nutritionist. You may have to add more protein (even some meat, temporarily) and other more calorie filled foods until you can get your weight, blood counts etc. back up. Think of it like when children are little, doctors recommend they drink whole milk until they are two years old, as they need all the richness and fat for development. The total opposite of the rest of us. So you may have to eat some things that otherwise you'd avoid like crazy, just you get back to 'normal'.

    Rocket, good luck on the surgery. A good think to have OVER WITH!

  • hrf
    hrf Member Posts: 706
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    I used a spoonful of freshly ground organic flaxseed every day in my oatmeal. I added some organic soy milk to it as well. After 3 years of this healthy diet I was dx with 100% ES+ breast cancer. I plan to stay away from both soy and flaxseed. My own "research" has proved to me that they are both bad for breast cancer. I don't need any further studies

  • jessamine
    jessamine Member Posts: 123
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    If people choose to take flax, only the whole (or ground) seeds contain the potentially beneficial lignans- not the oil.

    I use whey protein powder (as recommended for me as a vegetarian by a BC specific nutritionist after chemo related weight loss) and I think it's terrific. No need to worry about ingredients etc as it's only whey, and it's lactose and fat free. Not good if you're vegan true, but I think chemo is maybe not the time to be vegan, though it may be better for the long term.

  • Julia257
    Julia257 Member Posts: 203
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    Thank you very much ladies.  I tend to err on the side of caution also and will forgo flax seed.  It was with great reluctance that I finally gave in a few months ago after over 40 yrs to a fish pill.  I still can't bring myself to actually eating a fish.  I make no judgements each to her own and hopefulIy always the healthiest course but I don't think I could ever eat meat.  Btw thank you for the heads up on the Shape-Ups.  I think they particularly help cushion the impact on the old OA joints.  The pain level has kicked up a notch in the hips now almost 2 months on A and I really believe the Shape-Ups are helping.  I appreciate your help very much.  Julia 

  • Grayt
    Grayt Member Posts: 32
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    Interesting in scanning this topic to see reference to Gabapentin which I've been on since my Brachial Plexus nerve was zapped in radiation.  Some dark imaginings this past week while on a stressful trip so I stopped it.

     Beginning Arimidex next week.

     First appointment with specialist for lymphedema tomorrow.

     I wonder if the "one more thing" ever stops Yell

     Best to all - Grayt

  • ruthbru
    ruthbru Member Posts: 46,928
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    Here's a happy piece of research; 1-2 ounces of at least 70% cocoa dark chocolate daily is suppose to lower blood pressure!! I've been eating it for a couple months now, took my BP this morning and it was lower than it has ever been (don't know if it's the chocolate or if it was too early in the day to be worked up about anything!? Tongue out). Might be worth a try if yours is inching up.
  • patoo
    patoo Member Posts: 5,243
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    I get mine in CVS - Ghirardelli - 72% Cacao.

    Hi all - just passing by and sending good vibes to all who are going through procedures.

    I also give a positive review to Shape-Ups although mine are not Sketchers but by Dr Scholls.  There are several brands out there from $40. to $100.  With Dr Scholls I have both the sneakers and sandals and do believe my thighs have firmed.  I've also lost 2 inches off my stomach but that could also be because I'm now exercising 6-days a week.