TRIPLE POSITIVE GROUP
Comments
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tonlee - "welcome to our family" made me smile... I so feel that way!
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Ashla - thanks so much for sharing your conversation with your MO. Good to hear it is not just me and is a normal response/recovery to chemo. I was a germophobe prior to chemo so you can imagine me now. LOL!
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I have a funny story about when I was telling people of my diagnosis. I know you're thinking, "How can that be funny?" Well, you see I have a good friend named Judy who has stage IV breast cancer. I met her at work about 10 years ago. One of those good friendships that you don't necessarily see the person that often but they are just "there" all the time when you need them.
Well, When I found I out I had breast cancer, even though I hadn't talked to her in quite awhile I sent her a message on Facebook. All I said was, "I joined your club dammit!" Then after I sent it I just started howling laughing my butt off. You see my friend Judy is gay. I thought, "OMG She's going to think I left my husband and joined the other side!!!!" I was laughing so hard tears were streaming down my face. (A good laugh which I hadn't had in quite awhile) I messaged her back and said, "Ummm in case you're wondering I didn't leave my husband I meant I have breast cancer" We still both get a laugh out of that one. She assured me however that if I did decide to join the "other" club she could set me up with someone.
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Jen, welcome, and sorry. And, believe me, we all cry. Vicki, I have some problems in that area 5 weeks PFC. No infection but kinda of a preinfection feeling. Like a bit of pain and if it came back,.I would have to go to the doc for a UTI. But then it gets better and I ignore it. But the it comes back if I don't drink as much. But never bad twice in the same day. Geewhiz, congrats. Dance, my rbc is still low, but crawling up slowly. My wbc, on the other hand dropped. My nurse explained it as the reaction to the nuelasta shots, no longer getting them, they are not building up but going back down to your bodies normal, but she said things can be weird before that happens and so they watch. I go for blood draws every week, even though I am only getting Herceptin every three. They want to keep an eye on me cause of my magesium levels. Ashland, I don't blame you for being cautious, maybe you will loosen up a bit late, .LOL. much love to all.
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Jennifer-Welcome and sorry you are here. I can't imagine having that young of children and doing this! Accept all the help offered! My youngest was 12 and it was enough! Be gentle with yourself; cry if you need to, and find joy in the everyday. My hisband played all the stupid movies that made me laugh, which did help. It did help me to have someone (my boss) who is 12 years out, to talk to. We're all here for you. {{{hugs}}}
Vickilind- haha! I personally can't stand cranberry juice. Were you tested for yeast? Best of luck with the urologist. Crossing fingers it's not what you're fearing!
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Hi ladies,
This is the first time posting on this thread, I found out finally today that I'm Triple Positive and wanted to join you guys and talk about all the treatment options out there. I've had NSBMX with 1-step to implants 9 weeks ago.
I will have lots of questions about Herceptin and Tamoxifen, I'm still deciding if I'm having chemo or not, but my oncoplastic surgeon said I should go with those 2 regardless of getting chemo or not.
Anyone out there who did not have chemo but on these two drugs? How are the side effects?
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Herceptin from what I know works best in combo with chemo. Most all of us have had the same thing...taxotere, carbplatin for 6 sessions with herceptin and then herceptin for a full year. That seems to be the standard for a lot but not all of us.
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Soy,
Unless something has changed I don't think they give Herceptin without chemo. If that has changed please let us know!
Good luck.
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Oh I am so happy today. I can actually pull my hair back in a ponytail and not look ridiculous!! Yeahhh Ok so still a few of the hair from the bottom is pulling out but I can do it!
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TonLee-Yes Herceptin is given without chemo as well. My oncoplastic surgeon said that there is no statistics right now for just taking herceptin without chemo but it is being done and a study could be out in the next 5 years.
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Nora -- good for you! I miss my ponytail so much.
Jennifer -- sorry you are here, but as everyone has said, there is so much support here. I was dx last june and found bc.org one night in december when I was home alone feeling sad & awful over the holidays. The women here have helped me more than I can say.
Omaz - thanks for the link.
Is there anything that is given yet/now for early stage triple positive besides chemo, herceptin and tamoxifen/AI?0 -
Jennifer,
Sorry to see you here but you came to the right spot. All these ladies here are wonderfull and are a wealth of info. Once you can get your mind back to working, educate yourself to what your up against. Asking questions here can give you answers or at least point you in a direction to investigate.
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Tonlee, some docs will give herceptin without chemo. My onc will do it if the women refuse the chemo part.
Nora and Omaz, we are the same height and similar weight. Maybe there is something to the new theory about tall women and breast cancer. I weighed about 190 shortly before diagnosis and had begun cleanining up my diet and starting to exercis. Then diagnosed. Lost 30 pounds rapidly and have kept it off. Now around 163.
Jennifer, not glad you are here, but if you have to be somewhere due to the diagnosis, this is a great place. Smart women who care.
Session 4 of my trial. A friend came with me, and we are having a blast. My normal hotel was only available for two nights due to the western film fair....a convention celebrating all movies and tv shows western. They brought in lots of aging western cowboy actors and actresses. Sooo funny. I was in the breakfast room with Lanie Kazan in her robe, although I don't remember her being in any westerns. Lots of cowboy hats and a couple men singing "good night Ladies" to my friend and I as we tried to get in to our room with a charge card instead of the key, which was in the room. We were giggling hysterically and yes, wine was involved.
For our final night, we moved to this gorgeous place called Graylyn, a massive estate that has been turned into a hotel of sorts. The grounds are stunning. Room is great. Oprah stays here when she comes to see Maya Angelou .
Now, we are trying to find Maya....thought we could Better read one of her books first, though.
Oh...and regarding chemo protocol....I had taxol,twelve, once a week. Not sure where it falls in the ranks of effectiveness, but my onc showed me studies that the international oncology group of some sort authorized. He says it is more common in Europe. A second onc who specializes in breast cancer had the same commendation, so I went with it.
Heading toward home tomorrow, stopping in Cincinnati at IKEA and Jungle Jim's for our last bit of fun.0 -
Soyaandpepper It's nice that they are studying it but that doesn't mean the study will have any particular outcome. Depending on how large the study is, if the study has flaws etc. Herceptin has been studied without chemo for metastatic disease and that's why they feel it works better with chemo. It also seems to be a course of treatment for smaller tumors with no nodes.
It doesn't mean Herceptin doesn't work unless given with chemo, it just doesn't seem to be as effective. You can check standard care on the NCI site www.nccn.com/files/cancer-guidelines/breast/index.html For tumors over .5cm the standard treatment is Chemo/Herceptin/Hormone therapy (page 76). For tumors = or below .5cm AND node negative chemo does not seem to be recommended.
Granted in some cases chemo would pose too much of a risk on a patient it wouldn't surprise me if the onc recommended Herceptin/Hormone therapy only.
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largo..standard care should be for most (not all) tumors 5 C or over. But, my oncologist said for me the standard care for my stage 1a is chemo, herceptin and hormone therapy. I felt it was a little overkill for preventive medicine. At this point, I lean to thinking 4 oe 5 Herceptin treatments is all you need for small tumros that are node free.
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Did anyone have neo-adjuvant chemo with a port followed by a double MX? Did you have to get de-ported and use your arm for the herceptin after that? Just trying to figure out the logistics as my plan has changed and I'm now moving forward with the BMX but still need the herceptin through until March next year...
Jenn0 -
shore1 - I felt the same way (actually I still do) about AC/TH vs TCH. I feel out of place here because of my regimen. I actually did my research ahead of time and asked my oncologist about my options. He acknowledged that TCH is a good option, but felt that the studies on AC/TH are much larger and the stats still show AC/TH as being the better option, as dancetrancer mentioned. I also had a positive node, which seems to lead some MOs to choose AC/TH. I knew I had options - to trust my doctor, to override him and choose TCH, or to find a second opinion. After three surgeries in a month and all the research I did, I decided to trust him. I also didn't want to drag the process out any more.
AC was imho pretty nasty. I just finished. I worried myself sick before my MUGA on Monday. My EF came back at 60% so I can move on to Taxol on Tuesday.
Nora, Omaz, and Fluffqueen - I am of similar height and weight, too! I am determined to drop 20 when I am done with chemo.
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Jenn,
I had neo adjuvant TCH followed by lumpectomy...not bmx....and rads and still have my port for the remaining Herceptins. Not all MOs here recommend removing the port even after completing the entire course of Herceptin. Just had this discussion with my BS theother day. I have a new MO and I am hopeful he agrees with my previous MO that I can remove it after the last of my 5 remaining herceptin treatments.0 -
Jenn..
Sorry..misread our post....I just woke up and obviously need some caffeine......
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Jusr recently invited my daughter's friend's mum round for a coffee. She is a nurse practioner and I can't call us friends, just mums at the school gate who chat. I am actually glad now that it was quite a casual friendship because she spent the entire visit telling me about 3 patients of hers with Bc. "and one of them now has brain mets...." Fricking unbelievable.
Im not doing very well on the ole friendship front. My neighbour and I fell out recently (its a long story..) She then sent me a text saying she hoped the cancer came back!!!!! With 'friends' like that who needs enemies?
Sorry for rant. Just feeling rather let down. Glad to have my cyber buddies.
Happy weekend to you all.
Liz
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Oh my goodness, Liz! There is a reason we hang out here...
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Wow Liz...your neighbor actually texted you that??? Like the saying goes, with friends like that who needs enemies?!
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Jackboo,
The whole friends and family thing has been a real revelation likely for every one of us. The friends and family I would have expected to be at my side have disappeared and some new what I would have called acquaintances have been in contact regularly. I still haven't figured out long term how I feel about those who weren't there the first time I've ever actually really needed their support but I do know that. I will never ever forget those who stepped in to fill the void.
I honestly don't believe it's a reflexion on us but on them. Just as when someone is nasty to us for no apparent reason. They likely have their own problems that have nothing to do with us actually.
The only people who can truly relate are those who've been through this nightmare themselves. Others can help but not in the same way.0 -
Thank you Lago for posting that info on Herception and chemo.
I remember my Onc showing me standard care and that triple positive 1cm and above should get chemo....amazing what we forget! lol
Vball, I don't believe the data shows AC/TH and TCH are much different as far as survival and recurrence rates. I was going to do AC/TH but FREAK event, there was an A shortage. I could wait or just go with TCH. I went with TCH after a little research (heart damage is often reversible with H, not so much with A)...and praise God I did. If Herceptin hurt my heart, I'd hate to think what A would have done to it!
Anyway, I don't think there is a "best" choice between these two. Both are effective. And both seem to have about the same stats for recurrence and survival.
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evebarry the information I posted about standard care form smaller er+/pr+HER2+ tumors is from the NCA site. It indicates that tumors under.5cm (not 5cm) with no nodes may or may not need chemo… unless I'm reading this incorrectly. This is not to say you didn't get the correct treatment but that's what the NCI recommends.
Jennt28 I know a gal who did. She like me still has her port and kept it through Herceptin only. My onc likes us to keep our ports for 2 years anyway since after the 1st year PFC there is a spike in recurrence statistics. My treatment center will not put the port in the same place once it's been removed. So my recommendation is keep it for Herceptin.Liz sorry about the frienamie situation but it happens. Excuse my language but what kind of sick f*ck is this woman that "hopes your cancer comes back." She is not a person to be friends with. Good riddance. (Would be funny to text her that video back though
). The nurse is a bit clueless but sometimes you can't fix stupid. Her problem not yours. BTW my sister and I still haven't spoken since 1 week post my BMX. This September will be 2 years. Hard to believe we were close. 0 -
Tonlee - the stats are nearly identical with AC/TH being "better" for recurrence but worse for heart issues. I've followed your story, and quite honestly have been worrying about heart issues all along. I was so relieved when my post-AC MUGA came out fine, although I know damage can appear later.
I agree that for now, there is no clear best choice. We all have to make the best decisions we can at the time and be at peace with that.
There may be newer studies than this: http://www.medscape.org/viewarticle/551428
Clinical Outcomes in BCIRG 006 -- 36-Month Median Follow-up
ACTH 4 year DFS 83%, TCH 82%, OS ACTH 92%, TCH 91%
Grade 3 or 4 CHF ACTH 1.8%, TCH .4%
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Liz,
I have a friend like that too. She is really into cancer prevention/awareness and I honestly don't think she realizes what she says when she says it to me. Granted she did have malignant melanoma 6 years ago which was just cut out, no nodes or anything and she so far is fine. It hardly is the same to go through having a BMX, port, chemo etc. She still has the fear though so I do totally understand that. When I was getting ready for my VATS surgery (for lung nodules) last month, two days prior to it she says, "I just got a text from my friend in England, she's go stage IV lung cancer" Really? OMG I was stressing. She then later on called me after she realized what she had done to apologize.
Omaz, Fluffqueen and Vballmom
I wonder if there is some sort of connection with tall women? Interesting. I had dropped a bit of weight about 2 years before diagnosis, started getting healthy, running on the treadmill etc. I felt I was in the best shape. I was 47 at the time of diagnosis. I just turned 49. I was in disbelief because I didnt understand how I could be having something growing like that in me when I felt so dang good, inside and out!
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Hi
vballmom: yes she said "I would worry about karma if i were you as a woman who has had cancer." However, I took that to mean about the same as wishing me ill. I wouldnt mind but the original argument had NOTHING wotsoever to do with cancer. its as if other people use it to define us by, or in this case to attack us.
ashla: it has helped me to see things from the same point of view as you mention in your post. This 'friend' Keri has many issues she is dealing with. I let her in (unusual for me as I am very private) and unfortunately it has backfired on me. However, this is her problem. I have only told my husband and parents about her comments and they agree with me that I am better off finding out now what she is capable of. Hard lesson learnt on my part.
Kellogs: yes i dont need these kind of friends. By telling all you lovely people it has made me realise how important this forum is to me in terms of support; especially when it is lacking in my own 'real' life.
Jennifer: stick with us on here. As you can see the discussions are varied and although you didnt choose to be here, welcome. Remember, the diagnosis period is the worst. You will get through this.
Liz
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Lago: Just seen your reply. Thank you for putting it so clearly. That made me smile. Sorry to hear about the rift with your sister. Life just sucks sometimes doesnt it!
Liz
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BTW Yes taller people are at higher risk for some cancers including breast cancer & skin cancer. I'm 5'6" my sister 5'1" mom at her tallest was 5'3" (she's shrunk). They never had a cancer diagnosis today… and my mom was on a small dose of HRT.
I read about this at least a year ago. Do a google search and you'll find all sorts of articles.
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