TRIPLE POSITIVE GROUP
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NeuLasta, not nebula! Silly autocorrect!0
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Hello ladies!
Well, I must admit I have been a "creeper" since May 4th and tonight is my day to step on out into the forum light. I am Stage 1 and triple positive with each of them being at 95%. My lumpectomy was on May 16. Total size 15mm. I now need to wait til July 10 before I can meet with my oncologist for a consultation (current overload of cancer cases and of course the 4th of July holiday is in the mix). I know for a fact I will be having radiation and I can wrap my head around that. What I don't know yet is will I need to have chemo. I did not think I would have to wait that long after surgery to find out my confirmed next steps.
With my incredible "creeper" abilities it looks like everyone who have been triple positive have had chemo. If I am wrong feel free to correct me. I would be completely fine being wrong. My reality is I just want to process that yes, there is a 50/50 chance that I need chemo or is chemo a for sure?
Any insight you could provide is much appreciated.
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MN,
The deal about TP as it was explained to me was that anything below 5mm (I was 7mm) and no nodal involvement was not necessarily treated with chemo or herceptin as it was considered over kill for such small tumors. In fact this debate even threw people like me who were well below 1cm, into a "grey area" where MOs didn't really know whether to treat with chemo /herceptin or not.
I had two different recommends one from Cedars Sinai in LA who said since I had a MX and no nodal involvement nothing more was needed except an AI
However UCSF recommended a milder short form of chemo and herceptin based on a study released by Dana Farber Cancer Center at the end of last year when I was diagnosed. They said that Taxol/ herceptin for 12 wks followed by herceptin for the rest of the year after that was very beneficial and important for all HER2 + patients even those with small tumors.
If you are over 1 cm they always treat with chemo/ herceptin, now, even below 1 cm they tend to do soalso.
I did 12 wks of low dose Taxol/ herceptin, and am done with that, and now going for herceptin once every 3 wk
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MN Sunshine- I too do a lot of creeping on here. Lol. I guess I would just rather hear what others have to say. But I just thought I would put my 2 cents worth in. It seems that the protocol for triple positive is chemo. It's the her2 status thatputs us in that category.
I am a year out from chemo and doing ok. Still have a lot of aches and pains but it's doable. There are so many great and informed woman on here. You will learn a lot!
Good luck with you journey!0 -
Thank you Suladog. I appreciate your response and insight. I am self-employed so for me I feel chemo is a game changer meaning I need time to figure out my plan of action on how to pay my bills etc if I am not feeling well. I am a person who likes to be proactive verses reactive. I am positive that all will work out but it is so hard to be on someone else's timeline to find out next steps.
I know I will be fine in time....I just need to get back in my positive place that I am in control verses BC being in control of me. Again, thank you for your feedback.
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Hi Ramey,
Glad to know I am not the lone creeper....lol!! I agree with you, it looks like the HER2 positive is the game changer....from what I see on our forums. It is so nice to hear you are a year out. I keep telling myself that in six months I maybe back to a "new normal". What you just helped me to realize is......that it is more like a year plus. Good insight for me to hear.
I am kind of a control/processor freak so in my head it might be best for me to just go into this thinking YES I will have chemo. I need to create my plan now to help me be prepared. #1 sell motorcycle that I rarely ride anymore and maybe refinance the car. Once I am back on track I would rather go on a vacation instead so it is o.k. to let the bike go.
Thank you again Ramey! I appreciate your input.
Also, wishing you the best and I agree there are great ladies on this site. I am thankful. 0 -
So I live in Boston, and I am one of those who discovered their cancer VERY early. My tumor was only 1.5mm. I also had high grade DCIS with a microinvasion. My tumor size would indicate no chemo. However, my her2 positivity is very high (FISH of 4.8). my MO spoke with the folks at Dana Farber, and then with other MO's in the area - and the her2 positivity made me go with chemo. The Dana Farber study is indicating that a Taxol + Herceptin regimen in people with my kind of tiny tumor had extraordinarily low recurrance rates. I decided to go for spectacular odds and take the side effects. I'm only 40 and have two small children. Good luck with your decisions.
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MN,
We're all here and I know you're going to do great
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Had my fourth round of chemo today. Feeling pretty good now, but I came home and slept 4 hrs straight!!
I get an anti-nausea, benadryl, steroids each time. Also had got a long acting anti-nausea but this time the pharmacy had overlooked ordering it. So after talking to my oncologist, I decided to go ahead, with a couple tweaks. First he gave me IV Ativan and also a perscption for it. He thinks I have ancipitory nausea. Hard wired into my brain so I get real symptoms. Like a person avoiding a restaurant where they previously got sick. I'm also getting Nuelasta tomorrow and been advised to drink Ensure or Boost. I had lost 7 lbs since last treatment. (3 was weeks ago ).
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So, I'm anal and pick up my labs and put them in a spreadsheet, so I got them today, yep the extra test to see if my iron is low, came back low... oh, look here, that's right, he said he was going to run my tumor markers... CA 27.29 19.5 well within range of 0 - 37.7; CEA 6.5, high, should be 0-4.0. All else looks good... I have an email in to my MO, as I have never had tumor markers run, so not really sure what it means, and for that matter not sure why he ran them. Was it my 50th birthday gift, was it because it was my 2nd to last Herceptin infusion, was it because my MOs is moving and his last day is my last day of Herceptin in 3 weeks??? In my mind right now, I'm going with, this is 'my baseline' and not a problem.
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MN - I'll add to the valuable info others have contributed. I'm seen at MD Anderson and was initially diagnosed with 3.5cm DCIS, but surgical pathology showed grade III triple + 6cm DCIS with 2 small foci of grade II IDC that were 2mm and 3mm. Originally my MO told me I would only receive tamox (I have osteoporosis so no AIs). I was not happy with that as my only option so my MO brought my case before the review board. Recommendations were mixed with some agreeing with tamox only, others prefering Taxol + Herceptin and others suggesting the ATEMPT trial for stage 1 HER2+ BC.
I went with the ATEMPT trial and was randomized to the arm receiving T-DM1 (ado-trastuzumab emtansine...also known as Kadcyla) by infusion every 3 weeks for 1 year. For every 4 trial participants, 3 are randomized to T-DM1 and 1 is randomized to TH (the current standard of care). T-DM1 is an antibody drug conjugate with side effects that are relatively easy to deal with in comparison to chemo and is currently approved for use with metastatic BC. By using Herceptin as part of the T-DM1 conjugate only HER2+ cells are targeted. So, unlike Taxol, you are not delivering chemo to your entire body which results in fewer side effects. Both approaches use Herceptin and I have those typical side effects, but nothing too terrible.
I'm happy we have choices with triple + BC and hope you find a choice that works best for you. If you would like to know more about the ATEMPT trial, you can learn more here https://clinicaltrials.gov/ct2/show/NCT01853748 or on the ATEMPT discussion thread here on BCO at https://community.breastcancer.org/forum/80/topic/....
Best of luck to you!
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Thank you Mom2threeboys!! I appreciate your insight. I must admit much of what you wrote is a bit over my head but like everyone else on here I becoming more and more educated. I will do some more research to be prepared for my oncologist consultation. I appreciate the links you attached.
My mind often wanders to the women who were in the trails for the previous meds that now help us battle BC. I am thankful for each one of them! I also appreciate you for being apart of this new trial. I will educate myself more and then inquire about it during my consultation.
I am a mother to a 17 year old beautiful girl. It is my understanding her chances go up 50% due to me having BC. Though she is a teenager and life focuses mostly around her (I'm in the not so cool group to her.) I am doing my best to show her how to deal a "twist of life" and how to deal with it head on and with grace. She may not get it now, but in time she will.
All the best to you all!
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I have two daughter, one 33 the other43 and the younger daughter had her genes tested and they came back negative for bracca 1&2 . They told her that my BC% was only 5% because of my age. But she had a 50% possibility with her dads melanoma and his mOms ovarian cancer. They told her to check back in 15-20 years because they have her genetics but not all results are known today. More will become known as science and genetics catch up.
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Last infusion of herceptin on June 23rd! I am finished with my year long treatment!!! No more infusions!!!!
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congrats runningcello!
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running cello, congrats! I am about three infusions behind you.
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runningcello - yay!!!
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Great news, cello...big congrats!
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Running,
congrats on hitting the finish line!!!
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Yay running!!
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Congrats runningcello!
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Hooray running cello!!!!!! How will/did you celebrate?
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thank you all so much!!
my husband took me out for a lovely dinner & surprised me with some edible arrangements & flowers. It was truly wonderful! I can't wait for you all to cross the finish line0 -
Congrats, runningcello! I hope to join you in September.
Because I'm taking an AI, I had a baseline dexascan, which revealed that I'm already osteopenic. I asked MO whether I needed any meds to deal with that. She said no; she expected that my calcium supplements would keep me stable. I've been taking the generic version of Caltrate (Calcium 600 + D). Today, MO mentioned that as long as I took it twice a day (?), my bones shouldn't get worse. This is the first I've heard about taking it twice a day (I've been taking it once a day). For other osteopenic ladies, do you take 1200 mg of calcium a day?
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My MO had me taking it 2X a day. I too was osteopenic before chemo. After 2 years my spine was just over the border to osteoporosis. My rheumatologist reduced my calcium by 1/2 and told me to get the other half from diet.
I powerwalked and strength trained too but chemo pause/ chemo/ AIs/ small frame and family history doomed me to eventually get osteoperosis. Biggest drop was right after chemo.
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done chemo, should I ask for dexiscan ? Last one in Aug of 2014. Or is it a given? I also have osteopenia.
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Thanks, lago, for your insights. I like my MO, but she talks really fast and I sometimes don't digest what she is saying.
Jerseygirl, I got a dexascan because I'd never had one before. You already have a baseline dexascan on file. My MO says I'll get one every two years to see whether the osteopenia has gotten worse. Maybe, you're good until 2016???
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My MO did a dexta scan on me every year because of being on the AI (and I was osteopenic before chemo). Now that I have osteoporosis and it's being treated she does it 2 years. Some insurances will not pay for the yearly. It depends on how your MO writes it up.
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I have a very real problem. I can't actually believe I could ever be cured of cancer so I am constantly diagnosing myself with things. I thought I had a recurrence because I was having back pain and I read a woman with back pain have metastases. Did a bone scan and it came back clear. Now I think I have ovarian cancer because of the back pain, constipation, & some bloating. I can't just think hey maybe it's because of adjusting to a new mattress. No. Everything is cancer to me and I get terrified because sometimes you don't know until it's late
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Runningcello. It IS a problem, and I think it is one that many of us share, if we are honest. My friend here on the boards, SlowDeepbreaths calls it going to crazy town, and she tells some hilarious stories about it. Right now, I have myself convinced that I must be in the middle of giving myself tongue cancer, because part of my efforts to stop smoking, I took up lollipop licking. I found these great ones on line, Linda's gourmet follies, they have raspberry lemonade, cafe mocha, cinnamonbun, bubblegum, and my favorite, mango chile. Oh my god. So good. But my tongue is getting quite the workout, I think it's tired and a little rigged around the edges. But. Having the kind of brain I do, and an addictive personality, I can't have just one! There are days when my tongue doesn't get a break. And then smoking on top of it, I imagine all the little tobacco fumes getting into the little scratches, and making changes for the worse to my mouth. I even already worried about how they would give radiation to my tongue if I did, and if I did, how all the enjoyment I get out of food would be gone. Sometimes I think and or worry about what my absence would look like: my life and people without me in it. Yeah, crzytown for sure.
Don't even get me started on wondering what this bump is on my skull. Onc said "quit wearing earrings". What I didn't tell him, is that i hardly ever do, only when i go to see him and the others, because the have made notes about my appearance: Kathe wasn't wearing her wig" "she wore a hat today', etc. My primary care doc, whom i respect tremendously (he treats the whole person, and listens carefully , and I nevr feel rushed altho he has a very busy practice) put his finger right on the spot, and told me it was my occipital nerve, sometimes they just get that way.. So- hopefully, no skull mets for me anytime soon...
my friend Beppy has a hilarious blog about stuff like this, pm me if you would like to read it, but I think I am just now going to start a new thread about it. Will any one from here come and see it? Absolutely normal...
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