TRIPLE POSITIVE GROUP

PoseyGirl

JStarling, you can do it and will do it. This coming from a person who was a total wreck. We’re there with you in spirit...

Ingerp...I know people talk about being triple positive as though it’s topping the list of aggressive cancers. There are more aggressive cancers and we have many treatments. So don’t let the +++ make you feel more upset. It’s right there in the middle of the pack. And you’re DCIS which is a good thing xoxo

Ingerp

Thanks, Posey. Actually the DCIS was two years ago. This is IDC. And my MO (weird story--I got the dx from my MO instead of my BS) did tell me last week that while HER2+ is more aggressive, the treatment is effective and has a better outcome.

LTWJ

So true Suburbs

I stopped reading here for awhile as someone’s posts really depressed me and made me question things that didn’t need to be questioned. I’m glad that’s over. I so appreciated everyone’s help and support when I was going through chemo and surgeries after that. I just had my 5th herceptin infusion and am doing pretty good. My food taste is always altered the week after the infusion and of course the runny nose. My hair is ever so slowly growing in, pretty sparse on top so I still wear a bandanna but soon it will be off. Today I’m finishing up a 5 week long sub job in a high school library. I love subbing in libraries so it’s been easy. I went back to work 2 weeks after my reconstruction surgery because I wanted to get things back to normal ASAP and it has really helped, getting me out of tne house.

I had a neuropathy question though, I had neiadjuvent TCHP and have terrible neuropathy in my feet( almost 90% asleep) and my fingertips. But also my hearing is not good and they say it could be neuropathy too. I’m ready for hearing aids if necessary. Anyone else have this problem?? Thank you for everyone’s super uplifting stories! Spring Break for us next week and my daffodils that I planted are starting to bloom

Cherry-sw

I had my last rads today. Overall the skin on the breast has been holding up, the armpit is a mess though, got a bandage there, we will see. Tired, did not exercised yesterday but did 40 min on my eclipse today, watching The Americans))

Cherry-sw

coach, mimosa sucks, I definitely prefer my prosecco straight)) Or!.. mixed with vodka 50-50, and you know what we call it in Russia? Northern Light)))) Has been literally twentyyears I had one of those.

Lita19901

From what I'm reading here, the consensus seems to be that if you're not doing conventional treatment, then this is not the forum for you.

But what about those of us who were dealt a hand that required a choice between two terrible evils? Where the treatment decision was not based on our beliefs about pharmaceutical companies or the evils of chemo but rather on things we cannot change?

I am still Triple Positive, just like the rest of you.

ElaineTherese

Suburbs, I'm sorry to hear about your infection! How irritating for you.....

Cherry-sw, Congrats on finishing rads! Hope your armpit heals soon.

Cherry-sw

Trisha-Anne ❤️, I am sorry about all your friends. This is all I have to say about that.

Cherry-sw

Thank you ElaineTherese! I really hope so too, have only Herceptin left, cannot believe it. Do you remember the mess I was in August? I am trying hard, but the time I have left I will live and make it count)

deni1661

jstarling, I pray all went well for you today. You are stronger than you think and we're here to support you along the way.

ingerp, sorry it's official for you but there is great progress being made for us triple positives. Initially I was very frightened about being triple but eventually the fear became less and less as treatment progressed. I have this group of fabulous ladies here to thank for supporting me throughout. We'll be here for you too!

Suburbs, I'm so sorry about your infection. If I remember correctly you've been dealing with infection issues for awhile? I really hope things get better for you soon - hang in there.

Cherry - woo hoo on finishing up rads. I hope the armpit heals quickly. I'm really proud of you for keeping up on your exercise; you inspire me to do the same :-)

deni1661

I hope I haven't offended anyone with my suggestions on diet, exercise, etc. I try to stay neutral for the most part but sometimes my passion for what has worked for me might seem pushy. I apologize if that's the case. I definitely agree with conventional medicine and will always follow my MO's advice. Our bodies are so vastly different that it would be difficult to have a "one size fits all" mentality in treating triple positives. I appreciate all the different perspectives that are shared and feel safe sharing my thoughts; I certainly hope that doesn't change in the future. However, I agree that some topics might alarm newbies and we need to be mindful in that regard. I think specialk does a great job of providing hard facts and reminding us of the many variables that impact how we respond to treatment (thank you specialk!). Trish-anne, you simply reminded us that we need to support newcomers in a positive way since we all know how overwhelming it can be when first diagnosed. I completely agree!

Hapb I am sorry you feel this group is not for you anymore. I pray you find peace in the future.

deni1661

Cherry, you really have come a long way just as we all have. You will find once you are "officially" done with Herceptin and go into surveillance mode that life is absolutely wonderful and each day is a precious gift. Side effects become more manageable and life does become normal but in a slightly new and better way. I'm so proud of you and the inspiration that you give others!

deni1661

Posey and anyone else interested: below is my coconut oil process for dental care. FYI - I hate coconut and was very hesitant to try this. The oil does not taste like coconut at all. I will say it feels weird initially because let's face it you're putting oil in your mouth, but it feels better when your saliva gets mixed in.

Method 1: put about a teaspoon of hard or melted coconut oil in your mouth and starting swishing it around (do not swallow). If the oil is hard, it will soften and melt once you start swishing. Keep swishing for 15-20 minutes. I usually do it while I'm in the shower or getting ready in the morning. VERY IMPORTANT: when you are done, spit the oil in the garbage can and not down your sink. The oil will harden and clog your pipes. I brush my teeth with non-fluoride toothpaste after swishing.

Method 2: I just recently tried this. Melt 1/2 cup oil in a glass measuring cup. Add 1-2 drops peppermint essential oil. Put 1 teaspoon each in a silicone ice cube tray. Put the tray in the freezer until just set. Store in a cool dark place until ready to use (I put mine in the vanity under my bathroom sink and they stay semi-solid). Pop a 1/2 cube in your mouth and swish away. I like the added minty freshness and essential oil benefit. Don't forget to spit oil in the garbage and not down your sink.

deni1661

LTWJ, glad things are going good so far. You are really brave to go back to work so soon after recon! Sorry to hear about the neuropathy and hearing issues; I hope you find a solution soon. Lucky you that your daffodils are coming up already; I think we are a ways off from that here in WI

astyanax66

So, I'm a newbie who has mostly been lurking. I have "what's it really like" questions. Such as, how do you feel taking herceptin? (That looks like what I'll get), Did you get any say so on putting in the port? (I hate/loathe anesthesia, though I know they won't do it with a local--I want a port because I have teeny, rolling veins that even the "pro" struggles with--they get frustrated, and so do I. and it's usually mutual/friendly understanding of "this is just how it is"). I already have lots of osteoarthritis--is an AI a good choice (data says yes), and which ones do you recommend for less side effects? I go back on Tuesday for all the planning. I know I'll radiation, too--because of how far I live from treatment, I'm asking for the Canadian regimen. Thanks!

Cherry-sw

Suburbs, I am so sorry, I really am( I hope this infection of yours just go away, just does. Hugs to you too

Still-In-It

It looks like I now belong in this group, too, as the results of the third HER2 status test finally came back as positive. I'm off to a rocky start, though. I don't have high hopes for my treatment team as I am being passed around from one person to the next without any real say. I also found quite a bit of misinformation in my records, like they meshed some else's record with mine. I've tried to have them correct it, but no luck on that front. i was scheduled to start chemo yesterday, but I got a call at the last minute to cancel due to insurance issues. It turns out someone at the clinic failed to turn the needed paperwork to my insurance company. Now that it's cleared up, i am set for next Tuesday. it's hard for me to get answers, as everyone I ask tells me to ask someone else. Weirdly, I'm not really depressed about the diagnosis, or even the impending treatment. It's this loss of control and feeling like a low status number that is getting to me.Surely I can't be the only one with this sort of experience.

Cherry-sw

Still-in-it, just hold on and hang in, give us some more info and breathe out. You are going to make through it, it is going to be fine. Sorry you had to join this thread, but you will be fine, hugs

Jstarling

I had my visit. Good news is that the margins are now clear after the reincision. The very disheartening news is that the Oncotype number was very high (11.5). So there will be chemo in addition to radiation and Herceptin. I have a date with the oncologist on Tuesday. I am devastated but will forge ahead. Thanks for listening

Lita19901

Is 11.5 actually high?

Cherry-sw

Jstarling, as Lita pointed out, Oncotype 11,5 is not high fot TP, not at all, it is actually quite low

ElaineTherese

Still-In-It,

How frustrating! Are you using your current doctors/facility because of location or insurance? All of my doctors were technically part of three different entities, though two of them practiced at my community hospital. Nevertheless, they worked well together.

In general, your breast surgeon (BS) is an expert on surgery, so he/she should be able to answer questions about that.

Your medical oncologist (MO) is the expert on chemo and hormonal therapy, so he/she should be able to answer questions about that.

Finally, your radiation oncologist (RO) is in charge of radiation, so he/she should be able to answer questions about that.

Good luck, fixing your medical records. When my family doctor switched from one computer system to another, my kids' immunization records got all messed-up. I mention this every time to the nurse when I take my kids to the doctor, and their records are still a mess. ((Hugs))

Still-In-It

Thank you for the words of encouragement. It's not all bad. I am blessed to have loving and supportive friends and family. And, both the surgical oncologist and the radiation oncologist have been very helpful. It's just this one component of the chemotherapy clinic that seems to be making the situation more stressful. I don't have high hopes if something should go wrong or I need anything after hours. But, I'm trying to keep an open mind. Maybe the experience will get better.

Jstarling

cherry, what does TP mean. I was told it was high

Taco1946

astyanax66, Just-in-It, and Jstarling - welcome to the place none of us wanted or planned to be. It is scary and way too much information comes at us to be able to really process it. Once a treatment plan is in place, it does seem as there is a little more control. You can also drop in on other threads on this site as your diagnosis and treatment plan is clearer. I strongly recommend those related to your specific treatment plan and diagnosis. For instance, I started in the "lumpectomy lounge" , then was told about the HER2 so I came here. I still drop into "weekly taxol" although I stopped mine last March after 8 doses. I have gotten fantastic support from my "starting chemo Feb. 2017" group (and I know there is a thread of "starting rads on..."). We even set up a private facebook group. And now I read the Arimideix and Femera posts.

Sorry, about the mixed messages and confusing information you are getting, Just-in-it. ElaineThere outlined who's on first. But it's important to remember that you can change providers if you don't feel acknowledged or your questions answered. Some programs have a "nurse navigator" or someone with a similar title who can also help you coordinate your care.

Most TP get chemo (what and how much depends on diagnosis) with herceptin. You probably won't be put on hormone suppressors until you finish chemo and rads and which one you get is related to whether you are menopausal or not. I had no trouble with the herceptin although painful neuropathy on Taxol. I have minimal complaints about my AI but it is my second one. Your MO should work with you on that when it is time.

I'm glad I had a port (just had it removed last month) as I'm not an easy blood draw either. Do try to have some time - I had 10 days - from the time it is put in until your first chemo.

Sorry this got so long. Happy weekend everyone.

PoseyGirl

Hello Hap, if I am on your list of people you'd like to block (don't think that's possible here), to clarify:

1. I agree that diet and lifestyle matter. Many studies show the importance of adopting as healthy a lifestyle as possible and I have made changes. I don't believe that “some women" here are sticking their heads in the sand

2. I have never said - personally - that I disagree with asking about risks and benefits of treatments. I am not sure anyone else has disagreed with this, either.

3. I have stated a few times that I respect your personal journey a great deal and appreciate your individual experience and why it's been so difficult to determine which way to go. I don't believe anyone else has debated that point, either.

My ONLY concern has been that the tenor of many of your posts has been swerving toward anti treatment and has been moving more and more towards “treatment won't help you; it will in fact hurt you" as well as “don't trust the system; it's evil". When commentary starts to live in this place more and more, it just seems that it's a discussion better suited to a thread that wants to explore that topic more. I don't believe a single person here does not want to hear ideas on diet and lifestyle, or encouragement to ask their MO's questions.

My impression - and I speak fully for myself - is that you might not be understanding the nature of a few peoples' reactions here. It may not be fun for some entering treatment to log in and keep reading about all the ways treatment will fail. In that vein, I will rigorously try to offer balance. For instance, in the article you have linked to, nowhere does it offer any conclusion about diet and it’s role in cancer reversal. I’ve not read one study that concludes diet as a weapon against cancer in any definitive way. But prevention? Sure, yes! I wholeheartedly agree it plays a role. So again, it’s just a balance thing for me, because a) I believe some of your conclusions about treatments are skewed, and b) many of us - as you have said - do not walk your path and may not have the choice but to take every bit of treatment they can. You have said several times that you have a low possibility of recurrence. Welllll, I have different numbers than you. As do others. So just please note that for many, treatment is what we need to live.

I come here for information, support, and encouragement given the path I have taken. I don't know about others. I try my very hardest to always respect others and a comment such as how some women have their heads stuck in the sand was - quite honestly - antagonizing for myself as a reader. You were angry and felt ostracized when you wrote that, I am sure. And I am sorry you felt that way. But I truly feel that as a community, we need to try and offer an emvironment that the majority of posters want and need. If I happen to be in the minority with my views here, then I will respect everyone and either vacate or just shush myself.

Sorry for the long post, but I wanted to clarify what is specifically troubling to me personally. I don't want to foster any animosity whatsoever. I just don't want one kind of view to overpower and frighten others.

You’re so right that we can agree to disagree.Have a lovely weekend, everyone!

coachvicky

astyanax66 - My Surgeon asked me to sit in the sun in a topped strap swim suit. I got enough of a tan line to see where in most clothes my port and the scar afterwards would not show. He also placed it somewhat low. Pretty smart guy, wasn't he?

Still-In-It… - See if your center / treatment place has a Patient Advocate or Ombudsman. Meet that person and get your records straight. Cherry is right ... it is going to be OK.

Cherry - Remember when you first joined us? Look at you now! I am so proud of how you have made this journey and are now helping others.

Vicky

shelabela

Happy Saturday ladies! Ok let's see if i can hit everyone. Lol

Hapb, please don't feel as though you should leave the thread. We are all adults, if i start reading a post and disagree i just skip that one, we all should do that.

Welcome Astyanax66, Just-in-it, jstarling----- sorry you have to join the group but you are in a great place for info. Such a scary time when your first diagnosed. Some things that helped me, Take notes, ask questions, accept help!

Suburbs, hope your infection gets better.

Cherry, i always knew you were strong and would kick a** in this.

Special, vicky, taco and all you other lovely ladies hope you are doing great.

Thursday i had my "survivorship " clinic appointment. It was interesting. I did get a referral for acupuncture, ( my MO thinks it will help with my joint pain and hot flashes) heck i will try it. I talked to a counselor about emotional health. She says I'm doing incredible (i blame you ladies for that). I also got info on diet, drinking and exercises to do. (She gave me the ok to have my occasional beer or wine😀) yay. Confirmed that i couldn't of prevented my cancer.

i seen my MO yesterday about the horrible SE I've started to get. After 2 hours of talking this is what we have decided to do.

Take 2 weeks off to give my body a rest. Yay , but what's 2 weeks gonna do?

Report back if my massive hot flashes subside, and joint pain, and headaches, and vaginal discharge.

If they settle down then when i start back up i will take effexor? (Sp) and then tamoxifen butt she recommended splitting the pill. 10 mg in the Am and 10 mg at night. I know this has been brought up before on here so i mentioned it. She says she's done that in the past and found no problems.

Hope all you wonderful ladies are having a great weekend

Geez i think this could be the longest post I've done.

bareclaws

People come to this topic because they’ve been diagnosed with triple positive and want to know what it means, how it’s treated, how to move forward. They don’t need to be blamed for their cancer.

I, for one, would like to hear if anyone is planning on starting Nerlynx/Neratinib after Herceptin. It’s so new that there is little discussion online about it. There’s a dedicated topic here but it’s not very active, I assume because so few are taking it. Or they can’t crawl to the keyboard to enter their thoughts about it. Sign me, Worried.

deni1661

Astanaex66, still-in-it, jstarling welcome to our group. You will find amazing support, inspiration, encouragement and helpful information.

Astanaex66 - I got a port because I have terrible veins. I thought the surgery was easy and I had my first infusion the same day. I don't think that was a good idea but I did OK. The recovery took me longer because I had a torn rotator cuff muscle on the same side they placed the port. I LOVE how coach's doctor placed her port lower. Mine is pretty high but I have a halter top swim suit which covers it just fine. My opinion on the AI is, according to my MO it is a must have for triple positive so I take mine religiously. I had to switch because of terrible pain but now my side effects are very tolerable. Make sure to tell your MO of any issues you have and they will provide solutions. I am big into acupuncture, massage and essential oils to help with pain - each of us has to figure out what works for our individual bodies. Good luck at your planning meeting next Tuesday and ask lots of questions!

Still-in-it: all I can say is get a second opinion. You really must trust and feel good about your medical team. I was not comfortable with my original team; some were great and others were just lacking. So I went for a second opinion and immediately felt the right connection. I have a care management team - maybe you have someone similar that you can talk to? My medical team made the whole cancer journey less frightening. I actually looked forward to going to my treatments because of the wonderful care I received (my husband thought I was nuts). I pray you find peace as you begin treatment. Please tap into this community for support whenever you need it!