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Arimidex - Coping with the SE's

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Comments

  • [Deleted User]
    [Deleted User] Member Posts: 1,017

    Rocket

    A very dear friend was having a similar problem with her bones, same very good test results, BUT something about the bones not being able to absorb it.  After more testing by an endocrinologist it turned out she has something wrong with her PARA THYROID glands.  Don't know what it is called, just know she's going in for surgery in a few days to have the gland removed. It's NOT the thyroid gland, but I think she called it the parathryoid gland preventing her bones from absorbing the D & Calcium in her body.

    Will let you know if I hear more...

    My onc also definitely wants me on Arimidex for more than 5 years  - if I can handle it.  Keep thinking of NativeMainer, and how impossible it would be for me to handle not being taken good care of by my onc.  SUCH a difficult situation.  W really DO need attention for years to keep an "eye" on this #@^$%@&#$ bc!

  • Rocket
    Rocket Member Posts: 910

    Thanks Sunflowers.  I think I will callmy endocrinologist about the possibility of hyperparathyroidism.  I am being treated for hypothyroidism which I know is completely different than the parathyroid glands.

  • ruthbru
    ruthbru Member Posts: 47,701

    I am having sharp stabbing sympathetic pains in my foot just reading about all the sawing......ouch, ouch, ouch!!!!

  • tinat
    tinat Member Posts: 2,235

    Rocket and Sunflowers - the parathyroid glands control how your body utilizes calcium.  PTH stands for parathyroid hormone.  Seems the PTH level would be out of whack if there was a parthyroid problem. 

    Rocket, I would do exactly the same as you in your situation!  There are likely more specific calcium, Vit D, and parathyroid tests that can be run and only an endocrinologist would be likely to order.  I know there are many thyroid blood tests that can be done when an endocrinologist needs to more specifically pinpoint a problem.  Typicallly, only the very basics are done during a routine screening process.

    Hang in there!!!

  • tinat
    tinat Member Posts: 2,235

    Hurray for yoga!  I've been on Anastrazole for about 9 months and began with the severe stiffness and joint pain about 2 months ago.  I do walk and stretch every day and that helps greatly.  I grabbed a Groupon deal for a local yoga studio a while back and finally made it to a class today (went a few weeks back and could barely get on the floor so the instructor advised me to try a different class and to come back on a day I was having less pain and stiffness).  Today was "Gentle Yoga" for people dealing with surgery and other health issues.  Small class and the instructor was great about adapting the poses for me when I struggled.  When I got home I realized that I actually got out of my car without a struggle!  My hands still hurt, but everything else feels great.  Yahoo! 

  • mpeaches
    mpeaches Member Posts: 121

    Rocket - I had hyper parathyroidism, and had surgery to remove a tumor growing on one of my parathyroid glands (you have four). What happens with this is that one of the glands sort of goes beserk and starts leaching calcium out of your system and dumping it in your bloodtream.  The surgery isn't bad, and there's no follow up or anything. 

    Purrs,

    Jenn

  • mersmom
    mersmom Member Posts: 79

    Good evevning ladies,

    It has been a long time since my last post.(yikes,kinda sounds like confessions are on the way) Married off our daughter and our son has given us our first grandchild,Emily June. We have been busy and happy

    Glad to see our friend "the lovely A" is still giving off it's wonderful SE. Two and a half years in and I have the more problems with the generic than the original. But...Ruth's comments early in the journey gave me great insight. We are all able to still use our computers and complain and to me it is a good sign.

    I do have some info to add...from my experience

    dry scalp...(from my hairdresser) after shampooing and rinsing out conditioner towel your hair so it is not dripping wet and apply Listerene to your scalp. Use the original brown,even the generic brown from walmart. The smell will go away and your scalp feels wonderful.

    bad nails...my onc told me to take Biotin...took sometime to see the difference (30 days) but was the ticket.

    remedy for gloomy days...rocking a baby !!!

     Happy New Years !!!!!   Keep up the good fight ladies and keep moving!!

    mersmom...Teri

    p.s. Ruth, you should see the hockey player living with me this season...darling.

  • ruthbru
    ruthbru Member Posts: 47,701

    Teri, that is one way to keep limber Wink....I know, I know...it's not that kind of a thing; but still!

    Congratulations on the wedding and especially on the baby!

    Interesting about the Listerene. That is a new one to me.

    Keep moving and keep doing interesting things. Those, I think, are the keys.

  • Gingerbrew
    Gingerbrew Member Posts: 1,997

    Hi Ruth,

    I see my Onc on Thursday and think I will be back on Anastrozole. I posted for advice on what to do to stop the pain from the side effects I will likely get again. I am hoping I am one of the 45% who have fewer SE's after a break than previously.   

    I know you are the resident expert and mentor on this subject so I thought you might offer some help. 

    I am 66, 5'11" tall and weigh over 200lbs  since treatment. I gained and gained.  I had a lot of pain hands especially, headaches, knees alot, hips especially in bed, back, and more I am forgetting at the moment. Oh, foggy brain and aphasia. My ability to think returned nicely about a week after I stopped. Family members noticed first. Weakness in my hands and in walking.

    I don't want a recurrance but I also don't want my husband to have to wait on me as he has needed to.

    I feel caught and scared of both choices.

    Thank you GInger 

  • Merilee
    Merilee Member Posts: 734

    Hi Ladies

    I have been watching this thread off an on since Sept when I started the generic form of Arimidex. At first it was rough, mood swings, bone ache, etc.   But, I am happy to report that either I am adjusting or the side effects are decreasing. I take 1/2 the dose every other day. I looked up the half life and it stays in the body about 72 hours. So I know I have some in me at all times. I opted for the lessor dose because I did not like the one dose fits all, I am 115 lbs.

    I do take glucosamine and Vit d in a tincture. I also work out for about 20-30 minutes each morning with the focus being  to keep belly fat (aka estrogen nest) down, and make sure all my joints get some movement.

    I eat well. I feel better than I have in a long time.

    Clair- I missed what journal article you are involved in.

  • ruthbru
    ruthbru Member Posts: 47,701

    Ginger, I will PM you.

  • MamaV
    MamaV Member Posts: 373
    Nice to see you here too Merilee Laughing
  • nativemainer
    nativemainer Member Posts: 7,924

    Well, I found an oncologist that is much closer to home, not affiliated with any big cancer center, who gets rave reviews from everyone I've talk to.  I have an appointment with my PCP next month, going to ask her to refer me (the onc only takes patients through referral) and get a second opinion about the hormone therapy thing and follow up after that.  Maybe through her I'll get some straight answers. . . .

    Thanks for listening to me whine.  Sometimes having all the responsibilty of managing my care gets to me.  Time to buck up, do some more research and move on. 

  • [Deleted User]
    [Deleted User] Member Posts: 1,017

    WAY TO GO, NATIVE MAINER!!!!  All fingers/toes crossed this works out well for you.  GOOD FOR YOU for pursuing this - w really DO DESERVE the best treatment when we're dealing with the mindfield of choices this disease leads us through....

    Ginger - I hope get some relief from the "vacation" from Arimidex.  Can't remember if you tried acupuncture, or going gluten free for your SE's.  ruthbru is the EXPERT to tell you about he benefits of exercise too....  good luck! 

  • chatsworthgirl
    chatsworthgirl Member Posts: 197

    Hello all,

    I recently finished chemo and am about to start Armidex.  First I am having a bone density scan.  Taking Armidex or any other aromatase inhibitor did not appeal to me and I was trying mightily to find a way to avoid it.  Just how I am.  Tried to avoid chemo too.

    However, I am very encouraged by this forum.  I know there may be SE's but over all it seems like Armidex is not so bad. I am probably older than the general population here - I am 69 but a fit 69 so I hope to handle the drug well.  I handled chemo pretty well. 

    I am following the info here and taking notes.  Thanks to all of you.

    Kathy

  • ruthbru
    ruthbru Member Posts: 47,701

    Good job, Native. As draining as it can be, I truly believe that we have to be our own best advocates....it's our lives that depend on it.

    Welcome to the A Team, Kathy! 

  • mpeaches
    mpeaches Member Posts: 121

    I saw my oncologist today (and can I just say I have the most amazing medical team EVER?  No matter how many questions I go in with (they're written down) he NEVER makes me feel rushed, and is totally CUTE to boot!).  Anyway.  He's switching me from Arimidex to Femora (sp?), even though he said the side effects are pretty much the same, sometimes women respond better to one than the other. 

    We also went over the results of my bone scan, and I have the start of osteoporosis.  I wants me to have an injection of Prolia twice a year, which he feels will reverse that.  I also discovered that the calcium supplements I'm taking are NO WHERE near the amount he wants me taking, so my DH will pick up some more tomorrow, along with new prescriptions.

    I also left with a prescription for a vaginal suppository which he thinks should help with the dryness.  

    From there to the back doctor, where I got an injection into my spine to hopefully block some of the pain receptors and get my damned spasming muscles to CALM DOWN!  And a prescription for muscle relaxers.

    I'd so hoped I was cutting DOWN on the prescriptions, AND on the trips to St. George.  (70 miles from home).  But, I'm bound and determined to get my quality of life back, and that includes NOT being in pain & having fun with my husband!  

    You ladies are all so awesome, and you help keep me going.

    Purrs,

    Jenn

  • nativemainer
    nativemainer Member Posts: 7,924

    Interesting coincidence--I was reading an article today about the dangers of "patient as consumer" in health care.  Felt really good to write my own comment about how the provider-patient relationship is different from other provider-consumer relationships.  I compared having to manage my own cancer care with managing getting my roof reshingled.  VERY different experiences, and the roof work wasn't life or death!

  • MamaV
    MamaV Member Posts: 373

    Kathy - welcome!

    peach - sorry you have to keep adding appts and meds, but do whatever you have to do to get your quality of life (sex life too) back!

    Vicky

  • [Deleted User]
    [Deleted User] Member Posts: 1,017

    Jenn - I had back surgery years ago, and know from lots of experience - how painful muscle spasms are.  Really think they should be given a new name ( death spasms?) seriously, the description sounds too much like "muscle cramps" - but anybody who has been awoken during the night by one of those in a leg KNOWS what PAIN can be...anyhoooooo....if you're "open" to a different point of view, John Sarno, Mind Over Back Pain, has done a great deal of work on muscle spasms.  There is also another book by two Orthopediac surgeons supporting his work..can't remember name.

    You can google John Sarno - think there are several books now.  I read this work years ago.  Found it enormously helpful...

    KATHY:  good luck joining The A Team.  This is too long a thread to read now, so if you do get a SE that's bothersome - ASK A QUESTION - someone here has had it, dealt with it, and will be happy to let you know what worked for her.  

  • chatsworthgirl
    chatsworthgirl Member Posts: 197

    Thanks to everyone for the welcome.

    First I want to comment on back muscle spasm.  After my first chemo infusion I was feeling pretty good about the third week and went out into my garden and did some heavy lifting of rocks.  The next day and for a week afterward I was in a lot of pain from the muscle in my back having been stressed.  I finally went to a massage place where this little Asian woman did some weird but amazing things to my back - crawled up on my back and put her fists and arms into the muscles.  I was skeptical but the next day I felt great and the muscle spasm was gone.  Not sure if this would help someone here with muscle spasm but it's just a thought.

    My first question will be about the timing of taking Armidex - morning?  night?  with food?  what is the concensus of opinion regarding timing?

    Merilee  I have wondered about dosage.  I am 5ft 8in tall and weigh about 136.  Since I am 69 and probably have very little estrogen floating around I want to find out if a smaller dosage would be appropriate.  I have read some clinical studies that show a smaller dose is just as effective.  I have asked my onc for a test to find out how much estrogen is actually in my body at this time.  He balked but I am pressing the issue.

    Truly I am somewhat afraid of blocking all estrogen as it does do good things for your body and mind. Not sure what will happen to me when I lose all of it.

    Kathy

  • 1GoldenLover
    1GoldenLover Member Posts: 2

    Hi there, I'm TOTALLY new to this website and have spent WAY too much time looking thru it, it's fascinating and there's so much information! 

    I've been on Arimidex now for about 6 months and have been having some joint pain, some problems sleeping, and of course cannot lose weight despite working out with Zumba or line dancing or Hip Hop tapes 5 times a week....I'm 57 and LOVE working out, and these side effects have been manageable.  HOWEVER, just in the last couple of days I've had a rash start - on my upper rear - first little bumps that itched and stung, almost like bug bites, and they grew overnight in number and size and are continuing to do so.  Has anyone else had this reaction?  I've started no other new meds and have no food allergies that I know of.  My skin is also hurting over my thigh and hips, almost like your skin hurts with a flu. 

    I'd sure appreciate any insight from anyone - and I'm glad this thread is here!  Thanks in advance -

    Pam

  • Desny
    Desny Member Posts: 73

    Hi 1Goldenlover,

    Sounds like shingles to me.  Are you under allot of stress?  I'm not sure that Arimidex would cause a rash.  Please call your gp and have them look at the rash.  Is it painful?  There is medication that can help, please call.  Good luck and feel better!

  • [Deleted User]
    [Deleted User] Member Posts: 1,017

    I was going to say shingles too - the FASTER yoou get it treated, if it is, the better the outcome & prevention of longer term complications...

    seems MANY women are more susceptible to shingles after having chemptherapy.  My onc had me get the shingles vccine, after I waited 6 months from finishing chemptherapy,  Use to be only for folks over 60, think younger people mihgt be able to get it now too.

    Too late, for vaccine, if it is shingles - but if it isn't - after talking with your docs you might want to get the vaccine

  • Rocket
    Rocket Member Posts: 910

    It does sound like shingles.  I got the shingles vaccine and had a reaction to the shot.  I broke out in painful shingle-like blisters where the injection was placed.

    Native - so glad to see you pushing for better care!  Indeed you deserve it.  I too got frustrated that I called my endocrinologist two days ago about the possibility of being checked for hyperparathyroidism and they still hadn't returned my call.  I called them again today and am still waitingl  If they haven't contacted me by tomorrow I'm going over their heads.  Gosh it's frustrating.  You do need to be your own doctor these days and then they seem upset when you suggest that you may have a problem. GRRRR it makes me angry.  We have to deal with so much stuff as a consequence of breast cancer.  I'm thankful there are treatments like Arimidex, but it's not a picnic.  Still I'd rather deal with side effects at stage 2A then deal with stage 4 any day.  Hang in there Ladies.  We're all in this togetheer.

  • 1GoldenLover
    1GoldenLover Member Posts: 2

    Ladies, thank you so much for the info!!  You're right, I should have thought of shingles (I am a medical transcriptionist and taking a break until after reconstruction), and I have an apt. this afternoon to see the doc.  Yes, Desny, I'm stressing a lot and my husband is at wit's end trying to get me to relax and de-stress.  It's always been my way and I KNOW I have to de-stress, it's just hard for me.  I pushed way too hard during the holidays - as do many people! - and now I want to take some time to relax but I'm hurting & itching from this and can't sleep with the pain!  My main concern is that nothing starts in my right arm since I have lymphedema from a mastectomy last March and then 25 radiation treatments.  Honestly, I'm just looking forward to reconstruction in June and want to move on with my life - I was hoping it was NOT the Arimidex because the joint pain & tiredness and insomnia I can deal with, and I'd like to continue giving that a chance. 

    Again, thank you, and I'm looking forward to adding my info in here and being a regular visitor once I'm feeling a little better!  Smile

  • Rocket
    Rocket Member Posts: 910

    Hang in there 1Goldenlover.  We'd love to have you as a regular.

  • pj12
    pj12 Member Posts: 18,108

    1goldenlover,



    To rule in or rule out shingles, does the blistering cross the midline of your body? If it does, it is probably not shingles as they tend to stay on one side or the other. If the breakout is one sided, I'd be suspicious.

  • mpeaches
    mpeaches Member Posts: 121

    Sunflowers - I have two books by Dr. Sarno ordered - thanks!  I had 4 different sources that I respect point me in that directions, so I figured I'd BETTER go there!

    And I have the most amazing massage therapist giving me a free massage in about 20 minutes. And I have a prescription for muscle relaxants.  I WILL feel better!

    Purrs,

    Jenn

  • ruthbru
    ruthbru Member Posts: 47,701

    Does anyone know the answer to this question: should a person who has done chemo get the shingles vaccine (since it is a live virus)?

    Chat, you can take arimidex whenever it fits into your schedule, with or without food.

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