TRIPLE POSITIVE GROUP
Comments
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Thinking of u moon---(((HUGS))) let us know as soon as u can.
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Yes - Moon I'm thinking of you too ((hugs)))
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Moon, hope your surgery went well.
I love all the advice on diaper rash cream. I had the big C but no D. I have to say my backside has felt pretty bad the last two days. Hoping the stool softener helps.
Everyone here seems to have such great relationships with their MOs. I really like my MO here but I'm moving to another state. I met the new one last week. He made me feel really bad while I was in there. He was arrogant and acted like my MO here did everything wrong. He commented on the fact that this MO was JUST in an IU satellite office (although he came from IU in Indy in Jan), that he would have possibly gotten me in a trial, chemo b4 surgery, maybe different chemo treatment. I started to feel like everything done was going to cause this thing to come back. I asked about prognosis and his comment was that they have different drugs to treat this now. It felt like he was saying he expected it to come back and when it did, we'd treat it with something else. I'm considering making the 2 1/2 hr drive every 3 weeks for the AC until I can find someone nicer. All this and those stupid steroids made me anxious and depressed this weekend. Ugg
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Mammato fin d another Dr, ASAP really.
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Here is a pic. of my medical team and the cameras that will be used to see inside my bladder.
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haahahahaahahhahahaahahahCami!!! love you! and agree with your advice to mom.
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camillegal - good luck and show them your best side
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Camilegal - LOL love the picture and after you win the academy award for your performance can I have your autograph?
Mommato - I agree -don't start off with an MO who makes you feel so bad - look for someone else and if you have to make that drive for the next treatment so be it. I am sure in each and every case there is more than one choice of treatment and depending on the MO's school of thought one is better than the other - but no reason to make that a source of stress for the patient. Don't we have enough already? ughh
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Yay, linda!!!!
Moon, best wishes for a successful surgery.
Cami, love your medical team!
Mamma, find a different doc! You will be seeing this guy not just for your chemo but for follow up for years to come. You want someone you trust and are comfortable with.
For all those going through active tx and having a rough time, drink lots of fluids, eat whatever tastes good, take whatever meds you need to get through this. When it is over you can change your diet or your lifestyle if you need/want to. Don't try to do it while you are going through chemo, it's hard enough just getting through this!
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Mommato3 sounds like your new MO has an ego that is just a little to big for the examining room. How unprofessional to say the treatment you did, which is pretty standard is wrong. Get you into a trial. There are pros and cons to trails. There's no guarantee you will get the new drug. These are double blind and also a big time suck. Trails are good for your MOs research too. And what's this about "we have drugs to treat it" prognosis. You are early stage. The odds are in your favor it won't come back. You don't even have node involvement. I'm sure there is another MO there that doesn't have an ego that big.
Moon hang in there
cami that's one big camera!
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The picture of of health. Cancer free all these years! Now I know what I did wrong! Heroin anyone? Lol0 -
good morning all. Tx for all of ur kind words and advice. I woke up this morning feeling a bit more like me. Atleast the an pain is nearly gone and I was able to eat real good last night. Chicken, watermelon kiwi and cantaloupe Mmmmm
My dry mouth isn't so bad either.
Going to try to exercise as I haven't gone that in awhile.
I hope that all procedures and surgeries go well.
I keep thinking about how nice it would be if we could all hook up one day. A get together would be so awesome!!!!
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Football according to when my BS said my cancer started it was about 6 months after I quit smoking. I don't think it's the heroin (yeah I know your kidding) or smoking but the fact they reduce stress. There are less harmful ways to reduce stress: exercise, mediation, listen music, etc.
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lago agreed. Lol. Keef will outlive us all he's so stress free!! Lol
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He's so stress free because he is totally out of it. That's not living. He's not experiencing a thing. Life has some stress and that's OK.
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Good luck everyone with all of the surgeries and procedures. My last chemo was only 4 weeks ago and remember thinking during the months of treatment..." I can't wait to feel like me again". It will get better. I feel more like me everyday. Now onto radiation. I did find out that I might be able to reduce the treatment by one week! I will find out soon. I so hope so.
When I saw my RO she said to wait to start Femara until after rads. Is that normal? Sorry I seem to always have questions.....
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dgdm1003
Congrats on graduation from chemo!
My MO had me start anastrozole after rads too. The MO I had at the start of treatment wanted me to wait until the full year course of herceptin was done!
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ddgm - often docs want to have you do one treatment at a time so you can attribute side effects accurately, or not compound themi.
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I didn't have Rads but my onc does have her patients start hormone therapy till after rads. If no rads she has you wait a month PFC. I waited 5 weeks so I could start March 1st per my NP recommendation. She said if I had rads I would be starting then anyway.
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Thanks for everyone's advice. I called and talked to my hubby last night. He didn't want me to go back at all either. I need to feel good and reassured about everything. Its bad enough that we all have to deal with this. I can't imagine seeing him for several years. For now I'll stay with my MIL for a couple days to finish the last 3 AC treatments. The upside is that she gets to see her grand kids. Who wouldn't want to see this face!?!
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beautiful pic!
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Mamma love u'r pic.
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great pic mama!
for all those who are interested in the on-going debate on AI vs TAMOX and OVA SUPRESSION. I just got this response from my second opinion MO at Dana Farber on my question on whether I should stay on zoladex and change to an AI based on recent results from the ASCO saying there is a survival advantage in pre-menopausal women:
"we have been discussing this data with patients as an option but not insisting on it. We have taken the stance of wanting to wait until December when the tamoxifen alone arm of the SOFT trial will be presented....the exception is in very high risk patients in whom we have started offering this option (AI plus ova suppression) in a more pro-active fashion"
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I had this conversation with my current MO Tues (since the new guy said I need my ovaries out). He was on the fence about it. There is an advantage but because I would normally be about 9 yrs from meno, he was concerned about possible heart issues and bone loss. Of course this might not even be an issue if all the crap puts me onto menopause.
Rozem , did they say who they consider really high risk?
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Mommato that is exactly what I thought the concerns would be.
BTW I think you are high risk because of grade 3 and HER2+ (fast growing). I'm considered high risk for those reasons AND because my tumor was so big (over 5cm) but yours isn't exactly small. I still think we reoccur earlier because we have such fast growing tumors but who knows.
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momma - how old are you? I was 42-43 going in to chemo
she wrote "the very high risk (multiple node positive)" now I don't know if we are considered high risk because of the her2 no matter what the stage but I will ask her
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Hi Rozem,
I am very curious about this. Did the DF MO indicate what he thought would be the results of the SOFT trial in December? I'm also wondering if the TEXT/SOFT trials included Her2 Positive gals. Is ovarian suppression as important for triple positive as it is for ER, PR +. Her2 neg? Also, since you're Her2 pos, which is high risk, does that make you more of a candidate for ova's out?
Also, post- menopausal, has AI proven to be better for triple positive?
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nope...what I wrote is all she told me (she sent me an email).
I believe the ER is a factor independent of the Her2 because when I asked her about when the most recurrences happen for her2 she said if i was er/per neg then 3 yrs but because of the er/pr positive status my risk is further out
I know we are high risk because of the her2 but not sure about the ER if that a separate risk factor but i will ask -
its all so confusing and i think they just don't know
PLUS is anyone studying the long term heart/bone issues with premature menopause ? what is the risk of death from this?
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All I have to say is this, as I am sitting her with "shut down" ovaries on tamoxifen, if they find that the tamoxifen only arm beats out OS+tam, I am going to be SUPREMELY upset. :~/
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I am almost 42. One MO had said hormone therapy was just as important as Herceptin in keeping this away. I didn't know if your % of ER+ made a difference too. The more ER+ you are , the more important it is to keep it low. My MO seemed to be so concerned about my heart/bone risk that he wouldn't necessarily recommend ovary suppression/removal. Another thing he said was that the first 2-3 years was the most important because of the aggressiveness of Her2.
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Here is a pic. of my medical team and the cameras that will be used to see inside my bladder.
