TRIPLE POSITIVE GROUP
Comments
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ashla - the bad Metformin SE I am a bit nervous about is the Big D. I am prone to it - had it all through chemo for 10 days following each infusion, so this could be interesting. I brought an article about the trial of Metformin for breast cancer the last time I saw him, but he was reluctant to give it to me without demonstrated need because of the digestive issues. I am hoping that because of the elevated glucose and A1C he will reconsider. My MO refused to prescribe it without proven data, told me to speak with the PCM.
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hi Tomboy,
ouch about the personal stuff in your records. Guess I never think about that when I'm there. Probably better to be completely open anyway.
Regarding Aromasin . He said it is the newest of the 3 AI's and works completely differently. The other 2 look very similar on a molecular level and work the same way. Think Aromasin is a steroid.:( it is supposed to be better on the musculoskeletal issues that are my biggest complaint.
He said MOs can use the 3 interchangeably.
I like my MO otherwise... He treats me with respect, explains complex issues to me patiently, always listens to me carefully and never rushes my appointments but the system stinks and he's swamped. Think I may switch too:
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I like my MO too, but he is just not into explaining things, and neither is his nurse. She has told me not to google, but if THEY won't answer questions, and I am not supposed to google, what am I supposed to do, just shut up and DO it? Its just that I would like them to actually acknowledge the fact of my problems with the anti hormonals. And not just say, "hmmmm, I've never heard of THAT before!! " They kind of make me feel like i am the only one, a freak. Not too much fun, and then i get anxious about having to see them. Then the mo writes that I am anxious. But it is them that is making me feel that way, because I know when I see them, they will discount my pains and problems.
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Tomboy
That's why I left my first MO & it was a very difficult decision. He taught most of the oncologists in the area and was brilliant, respected, kind and closely tied to my breast surgeon. But....and for me it was a big but....he didn't explain anything! His attitude was 'don't you worry your pretty little head. I'll take care of everything.' And truthfully, he did. He and my bs decided on my neoadjuvant treatment .... At a time when it wasn't so common...and decided on the plan that resulted in a complete response. Can't really ask more from him. Guarantees not forthcoming:(
But I need to know as much as possible. That's me. So I switched.
And sadly I might do it again....
Also remember Tomboy that anxiety goes with this territory..don't feel ashamed of it. Goes with the cancer dx and it goes with estrogen deprivation! If you feel it...tell them .
Forgot....
I honestly believe that many oncologists don't realize the extent of the side effects especially with the anti estrogens. I'm in that trial where they're studying it now....
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I am not happy with my MO's nurse and chemo nurses, they act like I am complaining about the side effects and they have got excuses for them all, the dr himself is good, but do think i might switch. We had another BS speak about the latest in B C treatments, X-rays, types of chemo and genetics, she was from MD Anderson and was very knowledgeable. She commented on our questions about everything, very informal setting and very likable . Just that she is an hour and a half away. And there is another oncologist nearer. Have 2 more chemos left before finishing hercepton and then the pills for 5 years to start. So thinking this thru for now. Feel better girls.
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Hi,
just had this group recommended by lago. Glad to find some TPs . Last time I had bc I was in my 30's (25 yrs ago) and I was triple negative, so this is a totally different experience. I finished my Taxol/herceptin a month and a half ago, still on Herceptin til end of Jan, and have just been given arimidex to start.
I went to UCSF and my docs there were far more interested in the HER2+ part than the ER+ part for me. Evidently my HER2+ status was described as "florid" which they say is a good thing as the worse the HER2 the better the herceptin likes it or whatever...anyway they have been less concerned about the ER+ part and in fact I've been told that that part for me is low risk so if I have problems they would not be afraid to take me off of it. They tell me, since I have been in chemo pause since 1990, and am small and my body has already been running on empty for 25 years I should have no problems with this AI (here's hoping). I have to add that this time around is nothing like last time in Los Angeles when they told me I had a poor prognosis yet here I am. There was no such thing as the internet to find anything out or go to talk with others in the same situation!!! Sometimes I'm glad there was no internet then because had I been able to look up triple positive at the time I would have gone bat shit.
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Hi, SulaDog, and welcome. Sorry you are back for round two, though. That was a pretty good stretch! Do you mind me asking where you went in Los Angeles the first time? I agree, though, how great is it that we have internet! Florid, yikes!
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Tomboy,
Back in 1990 I was treated at Cedars Sinai Hospital, I love those guys. Now I've been treated at UCSF they're also great
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All my tests are loaded up and I can download and print them, contact the docs, cancel and reschedule appointments
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Suladog - I haven't posted in a while but sorry to hear the bc came back. I was under the impression that if we made it 5 years without reoccurrence, we're in the clear......
I am not able to have Herceptin because it caused heart damage for me so I'm still "batshit" over the triple +++
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Blownaway,
I had triple negative back in 1990, so I'm not even supposed to be here. My MO at the time said I couldn't count 5 yrs in my case so I've always been alert. Fortunately it was small less than 1cm, non nodal, but aggressive. They gave me CMF which I was told accounted for my long term survivorship. At the time Cedars Sinai gave me a poor prognosis. Evidently those TNs of us back in the day that had CMF did very well. I didn't expect to be around long enough to get cancer again. I was in my 30's the last time around. This time I'm TP also small 7mm no nodes. They told nme at UCSF they didn't want to do too much or too little so I had 12wk of taxcol and herceptin, now will continue to get herceptin alone til the end of Jan., I'm also on arimidex
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Unfortunately there is still a risk down the road for ER+ BC. The greatest risk is in the first five years which is why they use that number. After that your risk drops significantly but not down to zero.
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Hi Ladies, you are the go to for info, support and general stuff no one else understands:
Question: For early stage bc is Zometa (infusion) necessary?
I am finding conflicting info and have some anxiety about sitting for more infusions, waiting for SE's etc... whine:/ Taking Arimidex, meh, sucks but I'm 99% e+, so that happened.
Please point me in any direction you think would be helpful in making this decision.
Many thanks!
Bridget in Maine
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I think Suladogs new tumor would be considered a new primary and completely unrelated to her first TNcancer.
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oconnor - is your doc giving you Zoladex to counteract any bone loss from Arimidex? Did you have a DEXA that indicated you are osteopenic or osteoporotic already? I had an accurate baseline at diagnosis that confirmed long time osteopenia, but after chemo and six months of Femara I exhibited more loss, so my MO started me on Prolia injections. There are a number of us that take bone building drugs.
windgirl - I agree - different breast, long time between dx, and different receptors - sounds like a new primary to me too.
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wind girl,
Yes it was another primary...totally as different as can be from 1990. For one thing it was in my remaining breast the other culprit long gone. First was in my 30's second one... Well older. Both were small and node neg but that's about it
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I think it's pretty rare for TN to recur after 7-8 years.
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mommato,
Yes, my mo told me the other day, usually after about 10 yrs you're in the clear with that but way back in 1990 they barely knew anything about that type of cancer. In fact it was the guys at UCSF looking at my old pathology who said that what I had had then was TN , all I knew at the time was the doctors thought it was bad. My cancer surgeon was the one who told me he knew I was going to do fine. That meant a lot to me then, and we're still friends and meet for lunch when I'm in LA for busines
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Suladog sorry you have to go through this again, it's so unfortunate. im in my late 30s and fear I have to go through this again.
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Wind girl,
Yeah I wasn't thrilled to be doing this again but appt least now they have stuff for HER2. My mo told me a few years back it was the worst as they wouldn't have been able to do anything for me but now with Herceptin and all the other stuff they have it's a whole other ballgame.
I have enjoyed excellent health for the last 25 yrs since the first bc, and I was healthy before that, don't smoke don't drink, vegetarian, runner everyone was shocked when I got sick the first time. This last time I was a vegan so who the hell knows?? But I feel great and did. 3 mi yesterday so just hoping the arimidex doesn't give me any trouble. So far so good.
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Thanks for the reply SpecialK. Yes, did a dexa after I had started Arimidex, showed osteopenia and border line osteoporosis.
They are rec 2x yearly infusion of Zometa. Hesitant because I have read about bad SE's...after all that many of us have been through, I thinks it's more a little PTSD about sitting in a chair receiving an infusion again.
I have found conflicting opinions as to if this tmt is really effective. Feeling a little confused.
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oconnor are you sure it's 2X a year. I thought Zometa was 1 infusion a year. Prolia, which is what I get is a shot 2X a year. I've had it twice. So far no SE, non, zero, zilch.
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Lagoooooo! Well this is from my MO in Maine, not Dr C. I would like to schedule an appt with her next time I'm in Chicago ( not sure when that will be...maybe July or Oct) Although I like the Dr here, he treats all kinds of Ca and Dr C is really just the bees knees of Dr.'s I think I need to do my real check up's in Chicago.
I hope all is better than good with you! Text/call me sometime and we can catch up.
Bridget in Maine
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I will Bridget. Was thinking of you the other day but have been very busy with work this past month. Hope I can see you when you come out even if I have to wait with you in the waiting from to see Dr. C
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my period finally came back!!!!!!! I've never wanted something so badly!!!!
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Yaaaay Runningcello good news
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oconnor - I also get Prolia, have had it twice a year (sub-Q injection, back of the arm) for almost 4 years - same as lago - no SEs at all, and it brought me from the brink of osteoporosis back to normal measurments. I had been osteopenic for years prior to breast cancer diagnosis.
runningcello - yay!
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Runningcello: Yay, blessed with the curse!
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runningcello,
Yayyy!!
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A few months ago I was really hoping mine would never come back. Congrats to you runningcello!!
I had my Muga last Thursday. I've now dropped to 52. My MO didn't want me to get my Herceptin today. I'm not having any signs of heart failure so she's concerned this treatment might put me over the edge and I'll start. She's recommended that I see a cardiologist. She thinks he'll do an echo in his office and be able to tell me if I can start back up or if I'll need to wait a month and get another Muga. I knew this could happen but I'm still shocked and concerned. This will now add extra time to the end which Is a little depressing. I was hoping to be done the end of August.
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