Pathology and a plan at last

maglets

Saw my onc on Friday and got my pathology after mastectomy in December.  My onco score was 20 so he decided on no chemo...and i was Her2 negative but highly HR positive.  I have my Arimidex but I am scared to start it for fear of side effects so I am giving myself the weekend for a little break and then I will start.  Reading this forum I see people referring to generic.....I never thought to ask if that was my prescription.......thanks will check that out.....wondering if makes a big difference? 

The onc asked to see me in two months and when the secretary booked that lol and behold there were all my appointments for my stage IV colorectal......so it will be interesting to see how we balance the two primary cancers.

it is very very cold here right now......-32.....has anyone had ill effects from the cold when taking arimidex??

thanks so much, mags

 

 

 

aisling8

Arimidex

Well, yay for no chemo!! That must delight you and delight must be too small a word for the relief:)

I just wanted to chime in on Arimidex since mine is a positive story. I, too, sat and stared at that bottle and was afraid to begin, but after a week or so, I did start taking it. And while I had some weird symptoms, I really didn't have the joint pain many people report having. I took it five years and then my oncologist wanted me to stop because the Arimidex had pushed me from osteopenia into osteoporosis and she said there were no studies yet beyond their use for five years. I always do what she says so I stopped.

The weird symptom, cause I know you're gonna ask, is anytime I stood up to walk after being sedentary for 30 minutes or more, my first few steps were hobbled. An example is getting up at night to use the bathroom, I'd hobble to the bathroom, then it stopped and I'd walk normally back to bed. This happened at work, standing after sitting. But it never hurt. Just felt like I couldn't initially walk. Also, for the first couple of years the bottoms of my feet ached. Not enough to really complain, but enough to think, hmm, this is a side effect, but it went away. 

I began on regular Arimidex and midway through my five years it went generic and that was sort of at the height of this hobbling thing so my oncologist gave me a month's supply of regular Arimidex to see if it made any difference and it made none so I returned to generic since my insurance covered it. I've been off about six months and no more hobbling.

Oh. And I live near the beach in San Diego, home of the world's most moderate climate so I couldn't (fortunately) say whether cold weather affects taking Arimidex.

So there you go. A reasonably positive one-person story of Arimidex. Obviously, I can't guarantee you'll be as lucky, but I did want you to hear something good while you're sitting around dreading beginning:)

xoxo

Victoria

maglets

Victoria

thank you Victoria......that is all so helpful.  I really don't know why i am so afraid to start this drug......really I think I have been on xeloda for the colorectal for a couple of years and then three straight years of infused nasty old oxalyplatin.......When you are on that drug the cold takes your breath away.....quite scarey....and your fingers hurt if they are near to cold and your throat closes with a cold drink....just anticipating stuff I guess.

you did very well on this drug and thanks again for your guidance......Maggie

Double Whammy

maglets said:

Victoria

thank you Victoria......that is all so helpful.  I really don't know why i am so afraid to start this drug......really I think I have been on xeloda for the colorectal for a couple of years and then three straight years of infused nasty old oxalyplatin.......When you are on that drug the cold takes your breath away.....quite scarey....and your fingers hurt if they are near to cold and your throat closes with a cold drink....just anticipating stuff I guess.

you did very well on this drug and thanks again for your guidance......Maggie

How the heck can we be afraid of a litttle white pill?

Congratulations on the no chemo.  I'd say you've had enough and I'm happy you don't have to have yet another infusion of crap for your breast cancer. 

Oh, Maggie, I hear you about the fear of starting Arimidex.  I stared at my bottle of arimidex (anastrosole, generic) for a whole month before I told myself if I had bad side effects, I'd quit then.   I tolerated it well, but switched to Tamoxifen after 2 1/2 years because I wanted to see if the arimidex was contributing to my permanent alopecia.  Not.  Coincidentally, my bone density had gone from osteopenia to some osteoporosis in that time, however (and I was really on the fence about taking a bisophophanate)  so my onc said since I didn't have to worry about developing endometrial cancer (already had that and uterus was gone), and because Tamoxifen is actually good for bones, let's swith to that.  So I did.  My dexascan improved.  I'm due for another one about now I think so we'll see if it's improved even more.   I hope I can discontinue Tamoxifen as I have been on an anti-estrogen drug for just over 5 years now.  At my last visit, it was suggested I stay on it for 10 years and I said I needed to think about that and would discuss it at my next visit.  Frankly, the side effects of Tamoxifen (i.e., stroke) frighten me more than the side effects from Arimidex and I just want to be done with it all.

I really do get the fear of more medications and I also think that the aromatase inhibitors have been given a bad rap.  For what they are supposed to do, halt production of aromatase so any lingering or developing ER+ breast cancer cells will die off, it is without a doubt effective.  That being said, it's effective for MOST people and we never know if we're the folks it will help or the ones that it won't.  So, here we go again. . . what to do?  Hope you make a decision that you're comfortable with.  Be sure to talk about all of this with your oncologist.

Suzanne

Puffin2014

arimidex

very happy to hear you don't need chemo!

I've been on generic Arimidex since Nov of 2014. Different companies manufacture the generic Arimidex using different fillers. Some of the problems come from the fillers, I've read that the Teva brand of Arimidex seems to be better tolerated. CVS put a note on my file that I only want the Teva.

Originally I did have some pain in my hand joints that would wake me up at night. That occurred off and on for 2 or 3 weeks, and that was the end of that. Definitely have the stiff ankles and knees if I sit too long but as someone else said, after walking a few feet they loosen up. I've been told that staying active helps with the joint problems so I make sure I go walk on the treadmill every day, which hopefully will also help prevent the calcium loss from my bones. Also remember that there are other AI's and my onc said if one doesn't work we'll just try one of the other ones. I take regular Claritin for my allergies and many women have said taking Claritin also helps with the AI joint stiffness.

maglets

Puffin2014 said:

arimidex

very happy to hear you don't need chemo!

I've been on generic Arimidex since Nov of 2014. Different companies manufacture the generic Arimidex using different fillers. Some of the problems come from the fillers, I've read that the Teva brand of Arimidex seems to be better tolerated. CVS put a note on my file that I only want the Teva.

Originally I did have some pain in my hand joints that would wake me up at night. That occurred off and on for 2 or 3 weeks, and that was the end of that. Definitely have the stiff ankles and knees if I sit too long but as someone else said, after walking a few feet they loosen up. I've been told that staying active helps with the joint problems so I make sure I go walk on the treadmill every day, which hopefully will also help prevent the calcium loss from my bones. Also remember that there are other AI's and my onc said if one doesn't work we'll just try one of the other ones. I take regular Claritin for my allergies and many women have said taking Claritin also helps with the AI joint stiffness.

more thanks

dearest Suzanne and Puffin......thank you so very much.  You gals are so knowledgable about this cancer and the drugs. I really appreciate your advice and input.....feeling like a real neophyte on this one. I know I have to get more serious about calcium supplements and Vit D also......it does not take much to talk me out of the calcium.....I find it makes me really nauseated so some days I just skip it.

sending Valentine wishes to all.......maggie

Puffin2014

maglets said:

more thanks

dearest Suzanne and Puffin......thank you so very much.  You gals are so knowledgable about this cancer and the drugs. I really appreciate your advice and input.....feeling like a real neophyte on this one. I know I have to get more serious about calcium supplements and Vit D also......it does not take much to talk me out of the calcium.....I find it makes me really nauseated so some days I just skip it.

sending Valentine wishes to all.......maggie

bone health

my Dr said I had to get 1200 mg calcium a day and if I could get it with food I didn't need to take the pills. Our stores carry a brand called Cass Clay Calci Skim - an 8 ounces glass has 500 mg of calcium. I drink one glass with breakfast, one glass with supper, and sometime during the day eat either yogurt, cottage cheese or a cheese stick to give me my other 200.

Also, I attended a cancer workshop last fall and one of the speakers was a dietician from our hospital who keeps up on research findings. She said we also need Vit K to make the hormone that's needed to push the calcium into the bones - found in dark green veggies like broccoli, brussel sprouts, parsley, kale, spinach, romaine

people taking coumadin need to work with their doctors and adjust their coumadin dose, too often they just quit eating Vit K foods but then they end up with osteoporosis, strokes and heart attacks (if the body can't shove the calcium into the bones because it doesn't have enough Vit K, it puts it into the wall of our arteries instead).

ask your doctor to draw a vit d3 blood level - optimum is 30-80, if you're really low Dr might start you with 5000 units a day, otherwise starting with 1000-2000 units per day is pretty safe. But you should get a level drawn to see your baseline first. Up here in the north country none of us get enough sun and have low D3 levels

lintx

Puffin2014 said:

bone health

my Dr said I had to get 1200 mg calcium a day and if I could get it with food I didn't need to take the pills. Our stores carry a brand called Cass Clay Calci Skim - an 8 ounces glass has 500 mg of calcium. I drink one glass with breakfast, one glass with supper, and sometime during the day eat either yogurt, cottage cheese or a cheese stick to give me my other 200.

Also, I attended a cancer workshop last fall and one of the speakers was a dietician from our hospital who keeps up on research findings. She said we also need Vit K to make the hormone that's needed to push the calcium into the bones - found in dark green veggies like broccoli, brussel sprouts, parsley, kale, spinach, romaine

people taking coumadin need to work with their doctors and adjust their coumadin dose, too often they just quit eating Vit K foods but then they end up with osteoporosis, strokes and heart attacks (if the body can't shove the calcium into the bones because it doesn't have enough Vit K, it puts it into the wall of our arteries instead).

ask your doctor to draw a vit d3 blood level - optimum is 30-80, if you're really low Dr might start you with 5000 units a day, otherwise starting with 1000-2000 units per day is pretty safe. But you should get a level drawn to see your baseline first. Up here in the north country none of us get enough sun and have low D3 levels

Maggie

I'm so happy to hear no chemo for you!  I take Tamoxifen and stared at my bottle for weeks before I was convinced to try it. The side effects from the pharmacy were pages long.  I'm almost to the 4 yr mark.  I still dislike that little pill but have decided it's worth a try.  Hugs, Linda

button2

lintx said:

Maggie

I'm so happy to hear no chemo for you!  I take Tamoxifen and stared at my bottle for weeks before I was convinced to try it. The side effects from the pharmacy were pages long.  I'm almost to the 4 yr mark.  I still dislike that little pill but have decided it's worth a try.  Hugs, Linda

Great news about the chemo....

I agree with Linda. I also waited a couple of weeks to start, but then just figured "Why not?" Medicine can save us, and if we can't take the SE then we can always tell our doctor and get a med change. Oral pills seem insignificant, but they can be as important as chemo, if not more so. Good luck, Anna

 

TraciInLA

button2 said:

Great news about the chemo....

I agree with Linda. I also waited a couple of weeks to start, but then just figured "Why not?" Medicine can save us, and if we can't take the SE then we can always tell our doctor and get a med change. Oral pills seem insignificant, but they can be as important as chemo, if not more so. Good luck, Anna

 

Just do it!

Okay, Miss Maggie -- I'm going to give you a little tough love here...

As everyone here has attested, it's completely normal to be afraid of taking that first little pill -- after everything you've been through, years of treatments, your feelings are so completely understandable.

Now throw all that out -- and just do it!

You may not have any bad side effects from the Arimidex.  Or you may have some mild ones that are no big deal.  Or you may have really unpleasant side effects, and your doctor can then try one of the 2 other aromatase inhibitors out there -- you have options!

Each of us reacts differently to these medications, and you'll never know how it's going to be for you until you start!  You can't just sit there staring at the bottle thinking about what MIGHT happen -- that's a total waste of your time and energy!  Come on, Maggie, you're tough, and you can do this!

Big hug to you,

Traci

maglets

TraciInLA said:

Just do it!

Okay, Miss Maggie -- I'm going to give you a little tough love here...

As everyone here has attested, it's completely normal to be afraid of taking that first little pill -- after everything you've been through, years of treatments, your feelings are so completely understandable.

Now throw all that out -- and just do it!

You may not have any bad side effects from the Arimidex.  Or you may have some mild ones that are no big deal.  Or you may have really unpleasant side effects, and your doctor can then try one of the 2 other aromatase inhibitors out there -- you have options!

Each of us reacts differently to these medications, and you'll never know how it's going to be for you until you start!  You can't just sit there staring at the bottle thinking about what MIGHT happen -- that's a total waste of your time and energy!  Come on, Maggie, you're tough, and you can do this!

Big hug to you,

Traci

traci

haha......thank you Traci and all......you are totally right.......okay first thing tomorrow I will do the little white pill!!!!! whatever will be will be.  Yup just being silly and self indulgent.......

I love you girls......what a gift these forums are.....

big hugs back to you......maggie

lintx

maglets said:

traci

haha......thank you Traci and all......you are totally right.......okay first thing tomorrow I will do the little white pill!!!!! whatever will be will be.  Yup just being silly and self indulgent.......

I love you girls......what a gift these forums are.....

big hugs back to you......maggie

Maggie

Darling, when we need to bring in the big guns, we call on Traci!  Now, take the pill!!!  Linda

maglets

warning

Warning!!!!! someone should have told me!!! I had no idea that Traci was the final big gun.......good thing I did what she said and took the darned pill. Took it at noon and spent all afternoon imagining wobbly walking headache and backache. 

Will report progress after a few days......

thank you for the push dear angel girls.......

maggie

Puffin2014

maglets said:

warning

Warning!!!!! someone should have told me!!! I had no idea that Traci was the final big gun.......good thing I did what she said and took the darned pill. Took it at noon and spent all afternoon imagining wobbly walking headache and backache. 

Will report progress after a few days......

thank you for the push dear angel girls.......

maggie

thinking of you

And don't panic at the first sign of something different. My hands hurt off and on for a couple weeks, then that totally went away.

maglets

Puffin2014 said:

thinking of you

And don't panic at the first sign of something different. My hands hurt off and on for a couple weeks, then that totally went away.

2 weeks

two weeks for me on the arimidex and so far pretty good.  I take mine with supper so stomach is full.....last night I was going out for dinner and took it on an empty stomach.....feels like pain and slight nausea. 

I honestly can't tell if I am having joint pain caused by the drug or just plain old age.  Trying to exercise every day and surely feel stiff when I do not. 

Others here on the forum have mentioned that prospect of five years looming ahead.....and it's true.....two weeks down and only 5 years to go......yikes.....

I really think a little spring would help....tomorrow our forecast predicts fresh 30 cm of snow......enough already......

hugs to all......maggie

TraciInLA

maglets said:

2 weeks

two weeks for me on the arimidex and so far pretty good.  I take mine with supper so stomach is full.....last night I was going out for dinner and took it on an empty stomach.....feels like pain and slight nausea. 

I honestly can't tell if I am having joint pain caused by the drug or just plain old age.  Trying to exercise every day and surely feel stiff when I do not. 

Others here on the forum have mentioned that prospect of five years looming ahead.....and it's true.....two weeks down and only 5 years to go......yikes.....

I really think a little spring would help....tomorrow our forecast predicts fresh 30 cm of snow......enough already......

hugs to all......maggie

So far so good - so glad!

Maggie, I'm so glad you're doing well so far on the Arimidex.

I have a very "weenie tummy" (all my doctors agree that's a perfectly viable medical term, so don't laugh! ), so always take any medication with food.  I know there are a few medications out there that require an empty stomach, but, unless instructed otherwise by a doctor or pharmacist, I always really make an effort to make sure I have at least a little something in my stomach.  It helps to keep maybe a few cartons of yogurt, a box of crackers, or a package of cheese sticks in the kitchen for when you're heading out the door and need to just grab a few quick bites of something with your pill.

I've been on Tamoxifen (I'm premenopausal, so it's Tamoxifen for me, not Arimidex) for nearly 7 years (only 3 more years to go!), and yes, until you get used to how you feel, it's SO easy to blame any little normal ache or pain on that pill!  I always say that those of us on Tamoxifen could find a way to blame global warming on Tamoxifen if we tried hard enough! 

Stick with the exercise -- it will help you feel better in so many ways -- and stick with us, Maggie, we're here for you!

Traci