TRIPLE POSITIVE GROUP
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weight groan. Since chemo stopped in November I have been making a concerted effort to eat better (fruits, veg), very limited sugar, no snacking unless fruit and smaller amounts. My appetite is not like it was prechemo. Went shopping and have gone down a pants size. Lost some lbs, but I think since I stopped eating so much crap it has really helped. If it would warm up here I would exercise more.
This is a great thread. Its nice to have support from other triple pos. While I did have a scans before I still obsess about something getting out. Since my response to neoadjuvant chemo was good the oncologist feels like the chemo took care of any wayward C.
I've been seeing the surgeon so much for the last couple of months and am now getting a reprieve from him to start with the rad oncol and I'll see the oncologist during my hercepting treatments. I asked the surgeon yesterday about my prognosis and all he said was "I can't give you a number". I don't want a number, but how about a "it looks promising" or what ever. Even though he does specialize in cancer surgery, I guess cutting is his thing. He always mentions the 3 positive nodes and says "The cat was out of the bag from day one". The oncologist tells me not to worry about the lymph nodes because of my response to chemo. As you can tell I am back in lymph node obession mode. libray lil
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libraylil Your BS is not the person to get the statistical information on your prognosis. He is correct in not giving you a number. That is your oncs specialty. Your BS has a general idea but your onc will give you stats specific to your diagnosis. Ask your onc. Lost 1 pant size! Way to go.0
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Just sending some love:
I read too fast and I thought this post belonged to my sub-group TN. However, we do have something in common we are all one sign.
Hang in there ladies and well wishes...
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Crosstalk from what I understand so far (please correct me if this is wrong) is defined as:
Interactions and cross signaling from the HER2 receptor to other growth factor receptors (like ER) may potentially contribute to therapeutic resistance.
It seems very cell specific...certain cells react a certain way, while others in another...generally I'm finding things like this within the last 5 years:
the combination of Herceptinwith tamoxifen can sensitize BT/HerR cells to Herceptin, suggestingthat the combined therapy with Herceptin and tamoxifen mightbe a viable therapeutic strategy for ER-positive and Herceptin-resistanthuman breast cancer.
http://jme.endocrinology-journals.org/cgi/content/full/41/5/367
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I can't look at any more research today...it depresses me.
I'm off to work out!
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kim40 meet library lil the lymph node obsesser!! My oncologist keeps telling me not to obsess about my 3 positive nodes. That he has ladies with 22 positive nodes that are doing great 7 years out. Since you had positive nodes I'd be interested in what your onco told you about the "node thing". The rest of you that have lived through my earlier lymph node obsession, I apologize. libray lil0
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Hi Everyone~
I am a 5 year triple + gal. I also have a good friend who is triple+ and 4 years out
I was 38 years old when I was diagnosed with three kids (ages 2,4 and 6) That first year was REALLY tough. Next year was reconstruction and more herceptin. Last 3 years have been really, really great. I did mastectomy, chemo, rads, bilateral DIEP reconstruction, had my ovaries removed and have been on Arimidex for almost 5 years. My onc will probably recommend another 5 years of Arimidex.
I highly recommend the Her2 Support Board
It is not affiliated with breastcancer.org but it is another fantastic website with TONS of information on their message boards. Including discussion on Her2+/Tamoxifen.
Best to all of you!
Margerie
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TonLee:
The BRCA test was the first thing my bs ordered since I was young(36) and no family history. Fortunately, it was negative!!! One good thing so far out of this ordeal.
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My BRCA test was negative too. Since it is so rare to get IDC in your 20's without BRCA+ they are considering sending me to a different genetic specialist on the other side of the state. I'm not sure what they will be looking for there. I guess I will find out at my follow up appt. with my breast surgeon's PA in March. I've stumped quite a few doctors already, but it doesn't seem like it is that rare any more for younger people to have b.cancer. I have met 1 other person BRCA- in their 20's and there are many people on the forum that are young too.
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Just found out that I'm +++ as well.
I was diagnosed 29/11/2010 but have been hung up with surgery since then. I FINALLY got some good news from the surgeon today that he has done all that he can do and it's now time to talk to the oncologist (this Fri) for the next steps.
No doubt I will be back with questions for you all.
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Welcome pasmithx2!0
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Another Triple+ checking in. I'm in the process of figuring out which chemo to pair with herceptin b/c I have already had quite a bit of chemo with ovarian cancer. (I tested BRCA negative, but need to revisit genetic counseling later.) The med onc I saw earlier this week says that in my situation, herceptin is pretty much up to me. Have 2 more appts this week and hope to have a plan very soon. Lumpectomy + chemo + herceptin + radiation + arimadex seems like so much to throw at stage 1 disease. It is a challenge to weigh risk and benefit when the numbers are presented in so many different ways.
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Welcome pasmithx2. Must have been frustrating to wait so long from diagnosis to talking with an oncologist. For me everything happened very fast and before I was even quite done recovering from surgery I was having a consult with my onc, and I even met him in my breast team meeting before my surgery took place. My breast team works together to decide what type of surgery/chemo/radiation/targeted therapy routine they would like to suggest to each patient.
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Smile_on - What chemo did you do?0
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Teal3Pink1 the onc is leaving it up to you?! I hope s/he has a recommendation. I mean s/he is the one who has the MD and dealt with lots of cases. I agree that seems a lot to throw on stage I but you are not only stage 1, you are HER2+. The question I would have is how well will chemo work on grade 2 triple positive? Would they let you get herceptin without chemo? It's tough when you have HER2+ status signifying aggressive but then not grade 3. Granted if you were grade 1 passing on chemo might be an easier decision to live with.
Lots to consider.
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Omaz,
I had 3 rounds of FEC (Fluorouracil (5FU), epirubicin, and cytoxan) and then 3 rounds of Taxotere each 3 weeks apart. I started in July and finished Oct. 28. They started my Herceptin during my 2nd Taxotere round. They wanted to make sure that if I had an allergic reaction they would know whether I was reacting to the Taxotere or Herceptin. Luckily I didn't have any problems with allergic reactions to either. Chemo was not as bad as I expected, but I am so glad to be in the Herceptin solo part of my treatment.
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Iago,
To make things more complicated, the grade came back II/III on the surgery pathology. Does that make it 2.5? And I have heard that some docs treat focal lymphovascular invasion like a positive node.
If I could have herceptin with no chemo, it would be a no-brainer! I WANT HERCEPTIN!!!! Unfortunately, we need to save carbo in case I have another ovca recurrence and I probably can't have adriamycin b/c I had an allergic-type reaction to doxil which is a form of adria. (So far the jury is split on that issue, too) That leaves the weekly taxol study that just finished accruing participants and doesn't have data yet. I have spoken to a few other doctors informally and so far one doc is for herceptin with weekly taxol x12 and two docs are thinking that the benefit of herceptin might not be worth the toxicity of more chemo. Sigh. I am hoping one of the two oncs I am seeing tomorrow will have a strong gut feeling about how to proceed.
I know I am sooooo lucky to have caught this early with negative nodes, but I feel there are enough negative factors to justify treating this very aggressively.
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Wow teal3pink how complicated. I can totally understand wanting to treat aggressively because of HER2+ . Not sure how they treat LVI. I have read they don't pay too much attention to that anymore… more focused on the nodes but it might be different for HER2+0
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Smile_on - It has been alternating between moving at great speed (diagnosed on a Fri and in surgery the next Wed) to waiting not-so-patiently for path reports--in between 3 surgeries. At the time, a mastectomy seemed a bit heavy-handed and the surgeon was making an effort to spare my breast. But it took a mastectomy in the end to get everything. Doing it from the start would have had me at the onco's office almost a month ago.
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libraylil and SusieMTN - good to see 2 other triple positive lobular girls - we are a very small special group. I was very highly ER and PR receptive too, so hopefully the Arimidex will do something there. My onc was pleased I was +++ as he said at least there are drugs to target our situation. I finshed TCH x 6 in March 2010 and finished herceptin in Dec 2010. I am currently having radiation for a new primary in the other breast (IDC not her2 but also highly hormone receptive) that was missed the year before.
Sue
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Shesh.
Ice storm knocked out my power (and water, on a well) for 24 hours...everything was closed, including the hospital where I get chemo...so I will be getting my Herceptin two days late this week.....hope that doesn't matter too much....I have TCH #4 next week...so it could be worse!
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Teal - My grade is listed as II/III as well!
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Tonlee you are going to be over 1/2 way. Go girl. The number 4 is magic. Makes you feel like the end is in sight.
Suepen you are ahead of me in treatment. I will begin radiation in February. The oncologist has told me as soon as that is finished I'll start Arimidex. Isn't it just amazing how things get "missed"? For the last 4 years I have been having my mammos regularly, every July. It scares the crap out of me to think what would have happened if I had skipped this summer. (or if they had "missed it".) I have to think it was there the year before, but I know ILC is harder to detect. Hope you were bypassed by the cyclone
libray lil
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libraylil
I know how you feel about being the lymph node obsessed! I think about my positive nodes every single day. I had one lady last week say to me "Gee, I never met anyone who had so many nodes positve before" I felt like I was a walking miracle!
My oncologist told me that everyone is different. But, he also said that I have a 30% chance of re-ocurance in 10 years, so I flipped that around with a 70% chance I won't! I have to try and remain positive. I am just over 2 years out from my initial d/x and I feel great. We have to take each day as it comes, even though it is hard. And with me, with so many nodes positive, some days are a lot harder than the others.
Hang in there! We'll get through it together!
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Saw my Onc today. He said Tamox at the end of chemo when I start Rads. He also said I shouldn't be drinking green tea or taking any antioxidants. He said there is a chance green tea harms the efficacy of chemo, and since there aren't any big studies saying it doesn't....best not to drink it.
Well it's a little late to be telling me that now...after 3 TX and 10 gallons of the stuff...maybe that's why I haven't had any down time, or side effects bad enough to slow me down...maybe because it was being flushed out of my system too fast to work! Ugh.
Guess I'll see with #4....now I really AM dreading it...
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Tonlee don't beat yourself up about this. I have been nothing in terms of foods that could effect chemo. I read somewhere that grapefruit may reduce the effects of herceptin… right after my 1st treatment and 3 days after I had a salad with some pink grapefruit in it. You can go crazy. (BTW I don't know if that's true about grapefruit or not). I was also never told about green tea being an issue. I'm sure I've had at least 1 cup during chemo.
and if you feel worse after tx4 don't think it's because you aren't drinking green tea. Chemo is cumulative so it would make sense if chemo is in your system then you would feel a little worse. And if you don't feel worse then you are just lucky you don't get SE.
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kim40 you are 2 years out from initial DX I think that 30% chance is starting to reduce. The first 3-5 years are when most recurrences happen… and for us HER2+ it might be those 1-3 years that are the most crucial. No guarantees but you are 2 down 1 to go!0
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Lago,
I've drank a LOT of green tea...not a cup now and then, but probably 1 gallon a day the first week after chemo....and then maybe 5 cups a day all the rest (I drink it hot and iced in place of water because water tastes so bad so often.)
Oh well. Like you said, nothing I can do about it now.
My Onc is sending me to an ophthalmologist for the watery eyes...which is good because they are red and watering all the time....
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My eyes started to water with this treatment. Gee I really hope I don't need to see ANOTHER MD or therapist. I already have more doctor appointments than my 73yo mom and 78yo dad combined!
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Lago
I know what you mean. My Onc said besides steroid eye drops...the tear duct can get "restricted" from the Taxo and they put in a "stint" .... um, does that sound as creepy to you as it does to me? A stint in that tiny tear duct?
Just give me the eye drops please.
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