TRIPLE POSITIVE GROUP

fluffqueen, that is fantastic! such good news about your daughter! I was wondering, how did you get diagnosed for arthritis? cause my nuc.bone scan said degenerative changes, but i had done a serum test for arthritis six mos before. was it your pcp who prescribed, or is there specific tests someone runs. 

i am being way more active since my tamox break, and femara has been less than a week, so i am thoroughly enjoying myself.

lago, funny1 inside Zits! HAHAHAHAHAHAAHAHAHAHAHAHHAaha

what do you all mean about the cross talk with Herceptin and tamox?

Kathiec-nothing has been diagnosed for my ribs. I had an xray a few months ago and nothing showed. I was however, diagnosed with some cervical arthritis after I had pain between my shoulder blades. And the foot surgery that I recently had is called hallux rigidus. While it isn't actually arthritis, arthritis can move in because of it. After surgery, the ortho doc said there was more than he had thought. My last bone scan showed I was still normal but had dropped (that was in December 2012). 

My PCP and my onc said it is likely that chemo could have accelerated what was a minor issue (footwise) for years.

I just have to say thanks to everyone for letting me whine about all my aches and pains on this site. I try not to do it in my life. I like people to think that I have moved on. Very few people know that I have some thought about BC every day. I tried staying away from this site to see if it would make a difference and it did not. So...I'm back! 

My goal is to get back on cymbalta which I took during chemo and before tamoxifen. I am convinced that is why I had very little pain during chemo. It will help my aches and pains and zen me out at the same time. the downside is that I will have to start taking an AI and I am not shot about that either, since I have very few issues with tamoxifen. 

If you told me that my hot flashes would go away, I would almost take bone loss and thinner hair (well, not sure about the hair part.

Hi Ladies:

Venting a bit tonight for my niece who is 29.  She felt a lump months ago and I pushed and pushed but she didn't get it checked and finally Monday, she saw her doctor and the lump is large and she apparently checked under her arm and wasn't happy.  Ordered a STAT diagnostic mammo.  So she went to schedule and her insurance had been cancelled (due to the mess with the current health care mess going on) and she wasn't notified.  So she found another insurance plan which hasn't gone into effect yet so she has to wait for it to become effective. 

Anyhow, she has been doing research (of course, we are all so familiar with that) but she's thinking the worst of it all (imagine that).  Everything she's reading is telling her that at her age that she's probably advanced stage with this large lump.  I don't want to say anything except to tell her lets NOT jump to conclusions and that I'm there for her.  She's already decided on a double mastectomy. 

So, I'm venting here.

Arlene, hugs for you and your DD. I hope it's nothing. 

Fluff. I am glad you can breathe again but probably not til her dermatologist.

FMD, sorry. I was post menopausal and so started on Arimidex. 

Much love to all. 

hello ladies...popping in to say hi

i do try to catch up on all the posts and discussions...

I wanted to chime in on the ovary issue.  This seems to be a hot debate amongst onc's as to whether or not there is a survival benefit to ovarian suppression/removal in ER+ BC while on tamox.    I got my periods back 12months after chemo ended and my onc decided i should be shut down using Zoladex (same as Lupron).  Let me tell you this is an evil, evil drug! I was on it for 10 months when i got a second opinion at Dana Farber and she said tamox alone (even with the return of you p) is fine.  So I decided to give my body a break and was off the shots for 5 months and thought i had sufficiently fried the ovaries.  Nope...got a period again a few weeks ago.  Had a shot again last week because i just don't know what to do.

Let me tell you, i have never felt better than the 2 months leading up to the p returning last week.  My hair and skin looked great, had more energy, my joing pain was much much better.  So yep, estrogen is the fountain of youth

Tonlee - glad you weighed in on the issue - ovary removal/shut down in young women is a huge deal, its a balance between  doing everything possible to fight the cancer (in theory) while protecting your future bone and heart health. 

over on the stage one section there is a thread called "stage 1 grade 1 pre-meno" that i joined because many of those ladies are doing ova suppression as they did not do chemo.  We are all anxiously awaiting the SOFT study trial results (compares ova sup+tamox vs tamox alone).  If the results show no or very little benefit im going to stop the shots, if there is a benefit then i would just remove them as im sure this extra chemical in my body isn't good.  Until then i think its just a theory that getting rid of estrogen is beneficial - we cant strip our bodies of all sources of estrogen so my gut tells me that there probably wont be a benefit but im not willing to gamble it until we get some hard evidence

just my thoughts/2cents -

ArleneA I do believe it's against the law to cancel health insurance without notifying someone.  She could actually report them. I know a health insurance screwed with me so much I canceled and told them I was going report them to BBB. Then actually sent me a check in the mail for every payment I made! 4 months worth. Really hoping the best for your niece.

Fluff, I'm so relieved for you and your daughter. I guess that's the legacy we leave our daughters though, never being able to say "it's probably nothing".  I'm hopeful that by the time Chloe grows up, much will have changed and instead she can take on fighting for cleaning up the environment. Or something. Whatever makes her happy. I heard 'Frozen' was fantastic, hope your niece had a good time.

Patin, curious about your ongoing muscle aches. Are you taking magnesium? I was having muscles cramps in my legs and the magnesium seems to have helped instantly. It's been so long since my body was free and clear to self-regulate that I don't even know what aches and twinges are just normal and what might be tamox induced. I do know I feel a lot better than I did so as long as I can keep moving, I'm happy.

ARae, I have to agree with what Lago said - if you're not sure about tamox, start taking it for now. That's how I thought about it when I started last June and my side effects have been minor. Women do go on to have babies after tamox (there is even a thread on here on that subject), I believe chemo does more damage to your fertility than tamox. My periods haven't stopped on it.

Arlene, sending good thoughts for your niece.

Arlene, UGH!  I hope she can find a way to get in sooner.

Speaking of free floating anxiety, I finally emailed MO regarding the leg pain and he said to make an appointment to come in.  They gave me 3/17.  I emailed him to let him know.  I figured, if we leave the appointment as is there is nothing to worry about but if they move it up, then there is.  So I got an email this afternoon saying he is fitting me in Tuesday morning.  Eeek!  So I decided to call his office and ask for his nurse (who emailed me about the change in schedule).  She is so nice -- said he just fit me in to accommodate me, i.e. so I wouldn't be feeling anxious all that time.  I am telling myself that that is the real reason. She sounded convincing.  So glad I called!!

Purple tongue usually means a vitamin difeciency. I would let your onc know.

I did have some jolly ranchers and they were super hard.  I wonder if I bruised it, sucking on the super hard candy?

mmm, jolly rancher tongue fear. Had that, too!

arlene, there is the state program, in almost every state, paid for by ciggies, called every woman counts. it is a breast and cervical cancer detection program, and it gives free screening mammos to women 40+. but, if her pcp writes for her to have screening mammo, cause i am sure he will, then she quickly, if its anything will be moving along fast. becuse if you are dx'ed, they pay for EVERYTHING! they only ask you to write down what you make, they dont ask you to prove it, and just name and adress basically. i did it when i was on unemployment 220 a week, and it is still what i have, for the first five years, and all follow up. HURRY and tell her, please!

Thanks Kathyec:  My niece is only 29 and appears this program is not available in Florida (that I can find).  It's ok, if the insurance doesn't go through, we'll get it done.  She has a good job but she's just angry about this whole insurance issue and, of course, the situation she's dealing with which I pray is nothing!  She is single with 2 young children so she's really stressing.

cypher I was osteopenic before chemo. Chemo put me into chemopause. 5 months on Anastrozole I was tested again and had a significant drop but still osteopenic. Next year I was pretty stable. This year I had a drop again that has now pushed me into osteoporosis. Just got news from my endocrinologist that it appears I might have celiac disease. I was slightly in the abnormal range... but I don't eat a lot of wheat products so that's maybe why I didn't test as high as I should. Endo just told me to talk to my gastroenterologist. Could explain why my D went down to low normal when it was just over the high side after chemo.

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BTW I don't think I like this endocrinologist. I feel she doesn't have time for me and doesn't help me make decisions on what treatment I should do for the osteoporosis. Gives me a bunch of info on the drugs (that I already read about) and says chose one. She keeps saying they typically start with Foximax. I said but I'm not typical and I'm concerned about acid reflux (have a history). She then says well you can start with one of the injection if you want. OK but what do you recommend... she then says to come in again and we'll talk about it. I'm thinking but I we did this already and you still said the same thing you're saying to me on the phone.

So I made an appointment with the  Rhuematologist my onc recommended at my treatment center. My onc has always recommended doctors that actually will make decisions with the patients... not just say "here's what we typically do. Now you go figure it out." I have an appointment at the end of the month.