TRIPLE POSITIVE GROUP

So I went to see my OB/GYN to discuss an ooph. He told me absolutely not, no way. My MO said the same thing. they said that my ovaries provide a lot of other benefits, and that I was far too young to have them out. Sooooooooo current plan is ovarian suppression for at least the next two years and take it from there.

I don't know who was asking about Herceptin only - there are a couple of the people on the board on Herceptin only. They are rare though, but some MO's will ok it. For what it's worth - I had only 1.5mm of IDC. I went for the Taxol/Herceptin combo. I was too young, and her2 was too scary - for me, I wanted the protection even if it was overkill.

SpecialK, thank you for the info! I will ask my MO this week what he was thinking. None of the options sound particularly appealing. Just another benefit of joining the club no one wants to be a part of!

zjrosenthal I'm doing much better on Exemestane (Aromasin) than Anastrozole (Arimidex). Been on it almost 1.5 year now after 3 years on Anastrozole.

Cause for much optimism for all of us. Lots of promising research on the her2 Pos front

The latest..

..http://medicalxpress.com/news/2015-10-two-hit-ther...

I have been going back and forth on what to do for hormone therapy I am 30 but after reading that soft trial again I definitely think I'm going for oopherectomy I would rather deal with complications from ovary removal than cancer again I can't go through this agai

Hi all,

I am writing on behalf of my mother. She was diagnosed with extensive DCIS in July and just had a mastectomy two Fridays ago. Path reports showed there was a small amount of IDC (<1cm) and also micro metastases to 2/3 sentinel lymph nodes that were removed during surgery (.22mm). She is triple positive and is entering a clinical trial (ATEMPT) at Dana Farber next week. We are still unclear whether she will need radiation. Anyone have a similar diagnosis? Her surgeon said she is cancer free and this is only to prevent recurrences but I don't see how that is possible. What if there are more cancer cells in axillary lymph nodes or that have spread to other parts of her body? This is all so new to us. Any opinions would be much appreciated! Thanks!

Kira sorry you are here for your mother, the chemo is the tried and true for BC now that she has had surgery, I have triple positive and for now they can at least fight this scourge .All the major research hospitals are trying to eliminate this disease so they will treat it aggressively, unless you mom is to weak, hopefully she will be cancer free soon.

Quick question: do the chemopause hot flashes dissipate after chemo is over, or do I need to learn to live with them for the 10 years on Tamoxifen, too? Figured I'd ask the experts.

I'm halfway done with chemo, and trying not to entertain dark thoughts about statistics and mets and whatnot. It's just hard for me to get my head around the idea that there's a possibility that clean nodes doesn't necessarily improve DFS stats. My fingers (and toes) are crossed that 1) Herceptin/Perjeta is the wonder combo it's touted to be, and 2) that today's echo shows good LVF and I can keep getting HP.

lago, I find myself returning to your two "speeches," so I thank you again for posting them.

During my last infusion, I had a weird reaction to the Carboplatin (my stomach started to feel like it was eating itself). My doc--who is wonderful--put me on Protonix, but I'm seriously considering asking her to reduce or drop the Carbo. From what I've read, it's the taxane that's most important--is that correct?

In the interest of my own education, I've been watching the Ken Burns/PBS Cancer: The Emperor of All Maladies. It's fascinating and well worth watching, if you're so inclined.

Kira - for most of us surgery removes the cancer, and systemic treatment is an insurance/mop-up situation. She will receive appropriate treatment with either arm of the ATEMPT trial, but you always have the choice of opting for Taxol/Herceptin and withdrawing from the trial if you have concerns. There are a couple of threads here that have ladies who had that combination for small Her2+ tumors. If you put Taxol Herceptin in the search box they should come up. It is possible that since your mom had micromets in the axillary nodes that radiation may be recommended if there is not a recommendation for further axillary clearance surgery. It would be worth a consult with a radiation oncologist. Good luck!

Kate - maybe your MO could do a dose reduction on your Carboplatin? Since the FDA approval for Perjeta is for use with both T and C I think it matters, just not sure how much. Def a query for your MO. Did you feel this just during infusion, or did it continue

SpecialK, I had a lot of stomach (and intestinal) problems with rounds one and two. Third time around, I had the reaction in the chair, and then it waned a bit. I've been taking the Protonix, and I think it's helping. . . . I'll ask her to consider reducing the dose. I'd just as soon not get the Carbo at all (I've also got some mild anemia going on), but I definitely want to stay on the Perjeta for the full six rounds. I'll check back in to report what she says.

She told me rounds 4-6 are easier other than the fatigue (maybe because I know what to expect), and I'm going with that. Three was definitely the least horrible so far.

Hi everyone here. I have been reading this blog for a while now, finally got some courage and decided to post. I got diagnosed 4 mths back with stage 2 IDC, triple positive. Im 25 years old and although I have learn to accept it, it has been very tough on me and my family. I lost my mother 2 years back to BC as well. BRCA1 and 2 both came back negative as well as 20 other gene tests. Dealing with it a second time has been so painful.

Currently Im doing AC chemo once every 3 weeks as well as the neulasta. The neulasta has given me severe neck and muscle spasms. Its so bad I can't even turn my head. Been suffering since a week. Has anyone had this type of reaction to neulasta? Some days its hard to see the light at the end of the tunnel. It feels so grim and difficult.

All the best to everyone here and whose going through the same.

Laura - welcome but sorry you are here, and so young - this should not be happening to you. Sorry too about the loss of your mom to BC, it has to be even more scary for you, and I'm sure you are missing her. Are you taking Claritin prior to, and for several days followingyour Neulasta injection?

hi Lauragirl !

We'll all help you get through this

Kate, my MO cut my Carbo by a 1/4. It made a difference in cycle 2 and he set the change for cycles 4-6. Hoping it helps again! I started the documentary last night while I had steroid insomnia. Very interesting! No help here on the hot flash issue--anxiety triggers them for me so the hormonal hot flashes will be new territory. I wonder if our bodies will adjust and calm down? Hopefully it is not a permanent side effect. That sounds very reasonable considering my track record with meds.

My nurse SIL and BS are both adamently opposed to a hysterectomy or ooph. My MO says it is a good option. But my husband pointed out the reasons they give are very gender based. SIL and BS are female and feel it is invasive, drastic, and negatively affects womanhood. My male MO says it is easier and cheaper in the long run. I am glad DH pointed that out. But my MO wants me to pursue seeing what changes we can make from my Paxil--my PCP said he would try to consult with the original prescribing psychiatrist (I can't unless I want to self admit myself to the hospital psych ward for a 3-day minimum stay). That psych doc is the best in the area and I really want to see what he says. MO thinks we should try Tamoxifen first before trying hormone suppression with an AI or the hysterectomy plus ?. The other concern is that I could not tolerate hormonal birth control and he is not sure about me tolerating hormone suppression--that's a discussion for my GYN I think. This is so complicated and everyone says I shouldn't bother with it now, but if I am switching anti-anxiety meds we need to start that process in Feb. to make sure I am stable on the right med well before starting Tamoxifen in August.

I was suicidal on Celexa and ended up on the psych ward for a quick 3 day switcharoo. That is why I am SO hesitant to go making changes. I respond terribly to medication in general...