For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Bren, I'm looking at your history and I'm confused. If you had both breasts removed in 2000 how is it that it came back in 2012? Was it just in your lymph nodes? Is it odd that you caught it so early, stage 0, dcis, removed both breasts and it still came back? I thought DCis meant that it hadn't spread.
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I didn't know they were different cancers. I thought DCIS just meant that the cancer was still "in situ" ie in the duct.
I thought it was only once it broke out of the duct and became "invasive" could it spread.
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Ok, here is the history: 2000, DCIS, chose to have the BMX instead of a lumpectomy. Good thing I did because the DCIS was in 2 quadrants and I would have had to have at least a MX anyway. They did a SNB but nothing showed up to make them recommend chemo or rads. They did suggest I take Tamoxifen but I chose not to. (All docs agree that it would not have made a difference as to the recurrence/new cancer in 2012).
Fast forward to 2012, I found a lump in my arm pit along the scar line. GYN and BS thought it was scar tissue or cyst, but to have it out just to be sure. No one thought it would turn out to be cancer after 12 years. It turned out that what they took out was a lymph node that was IDC. In the breast tissue (armpit area) around that lymph node they also found DCIS, probably remaining from 2000. Apparently they can never get all the breast tissue when they do a MX/BMX.
I also had a PET scan and MRI last fall which showed at least 2 other cancerous nodes. I did chemo first then had all level I lymph nodes taken out, all of which were clear. My case is an oddity, as I have heard from numerous doctors. Sorry my history is confusing but they don't have check boxes for those of us that are "special" cases
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Timbuktu I have a friend that had a BMX. She got a new cancer under the reconstruction in the good breast. It can happen but the risk is much less (maybe 3% but not sure). They can't removed all the breast tissue. That's why we BMX gals will be felt up for the rest of out lives.
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Thanks Bren. Im new to all BC discussion so everything turns into a question for me. You've had quite a journey. Glad the rest of the nodes were clear!
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You made me laugh lago. When I was going to Sloan for treatment I flew for the first time in 30 years. I didnt' want to go through radiation so I asked for someone to "feel me up". lol The man just looked at me for a moment stunned. Then said "Oh, you want a pat down?"
I had asked for a bmx but the surgeon said not to have it because once it's invasive it can be anywhere. That knocked the air right out of me. I'm very lopsided.
Bren, thanks for explaining. What a trip you have been on! But hopefully it's under control now.
Love to all of you!
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My cancer was listed as DCIS and IDC, same cancer just part of the cancer had already spread to the ducts.
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Good Morning Girls, I am on my way to an endodontist and hope he can figure out what this pain in my upper and lower jaw is.. I have had it over a month and want to scream and pull out teeth when I get it, which is a few times a day. Been to the dentist every few days, taking Vicodin and swishing with Sambuca to numb it - hope it's something simple like stop taking the Anastrazole but I really don't expect to get any answers - I'm worried. Hope everyone is doing well, have a great weekend.
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Luvbugs, gee never thought of using Sambuca as a mouth rinse but....if it works for you...you must be Italian?
Good luck and hope the dentist gets to the bottom of things and maybe it will turn out to be something not too bad. I went to mine for an issue a while back, turned out to be receeding gums....and the solution offered was first to use dif toothpaste before more agressive things. It worked so hopping for you as well.
From another NJ person!
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Good luck with your visit 5luvbugs.....hope you get some answers and resolution to the pain.
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This too shall pass Luvbugs. Good luck!
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5LuvBugs - hope all is well.. did laugh at you using Sambuca as a pain reliever..hope the dentist has suggestion
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Well I have posted here before stating that so far arimidex has not caused any se's.. but now I am wondering.. it seems for the past 3 weeks, one day out of every week, I just feel crappy! like I cant wake up, but cant nap or sleep,terrible headache, and upset stomach! not sure what is causing this.. just wondering if any of you gals have experienced this , it is not quite 3 months since I took the first one! maybe I just play myself out by doing too much and it hits me, just not sure.. looking to you for some experiences. Thanks in advance.
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Yep, happened again yesterday. Felt like the truck hit me, then backed up and hit me again. I can and do nap, and by dinner I almost felt human again.
I developed trigger thumb with this nasty stuff, a cortisone shot took care of that.
The hot flashes are making me crazy. Called MO, they wrote low dose Effexor either going to up the dose or change meds. I'm in Florida it's hot and humid and this is no way to live.
That's my story0 -
Hate to tell you this but hot weather can trigger hot flashes.
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That's why I have a new appreciation for our long, cold North Dakota winters!!!!!
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What exactly is a trigger finger? does it mean it wont bend correctly? have seen this mentioned before but just not sure.. hope this doesnt continue, so far this morning I am feeling better, but have a busy weekend ahead of me going to visit grandkids, guess I just better take time to try and nap. Thanks ladies.
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My trigger thumb has been much better for a good week or two now, through hot humid weather as well as cooler, drier weather, so I'm still hoping it will turn out to be a permanent improvement. Still stiff first thing in the morning but after that just a very slight catch for most of the day....YAY!
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LOL! As I woke up the other night drenched in sweat in spite of the air conditioner being on all night i had that moment. "Is this a hot flash at last?" Of course the temps were in the 100's all day so my guess is that it was just a normal reaction to HEAT!
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I can't do the 70' out and back for the mail without looking like I just got out of the shower. I also can have low blood sugar episodes that leave me drenched. Now hot flashes. I'm never dry.
My inner child is playing with a blow torch.0 -
Nancy& spinner I tossed the Vicodin and now I just gulp down the Sambuca ,just joking and yes spinner, I am Italian. Anyway had another root canal yesterday and have no more pain so far... Big expense,teeth missing this sucks but I am sticking with th anastrozole for now,,,
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Luv - hope thats it for you n toothaches!
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Hello---I have a question on odor, underarm odor to be precise. Well, it is bothering me.You have discused thin hair, teeth, headaches, all the other aches, no body odor. I am troubled with all that has been discussed, but the last 5 months my PITS are STINKING. I have never had a problem with this in the past no matter how much I might sweat.
So,can any of you Lovely Ladies give any hints on soap and deodorant that might help.In 3 days I celebrate 49years of wedded bliss and 6 days I celebrate my FIRST mastectomy and 3years of pure torture. PLEASE help.----kad2kar ThankYou!!!!!!
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I use baking soda And/or a magnesium spray.....both work very well for me.
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Scottiee---Thank you,I'll give it a try. I've used baking soda and hand sanitizer mixed together in a paste and it worked while it was on, but when I washed it off......oh well. Thank You again for the suggestion------kad2kar
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kad2kar do a search on this site. I have read other's complaining about this. I think it might be because of the lymph nodes have been comprimized and things just aren't cleaning out like they used to. This is just one of many topics on the subject:
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3 weeks on the meds so far and the last few nights I can't sleep.. just like during menopause - that was my main symptom then.. omg, I can't go through 5 yrs of not sleeping.. I have to drive 40 miles to work - I can't make it through a whole day with no sleep, or even with just a few hours sleep.. anyone else? can this be only temporary?
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I had 0.3cm, stage 0, low grade, DCIS.
So I did lumpectomy and six-weeks radiation, I also begun to take Anastrozole.
After six months taking Anastrozole, recently I started to feel knees joint pain.
Now I know I may get Arthritis and suffer bone lose from taking this drug.
Is it worth to take Anastrozole?
I still want to travel and have active life, but if I grow Arthritis My life will be ruined. Am I over treated?
Mine is only in stage 0 and 0.3cm! What should I do?
Please help.
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applechan I've been on the drug for almst 2.5 years now. I had osteopenia from the start. I take the extra D & calcium as prescribed. I work out 5-7 days a week. The stiffness I had the first year is almost gone. I had some major bone loss right after chemo (went into chemo-pause. tested 7 months again after chemo ended) but now I'm stable. If you keep active the stiffness will subside for most of us. Get the knees checked out.
Do note that they are recommending hormone therapy for those that don't have breast cancer but are high risk for the disease. You can also talk to your onc about going on Tamoxifen instead or change to a different AI (aromisen or Femera) to see if you have fewer SE.
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