TRIPLE POSITIVE GROUP
Comments
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Hap I'm sorry you feel you need to leave this forum. I never said that my view was the only view, and I never said that you couldn't be a contributor to this forum. But, you are continually giving your view that conventional treatment for breast cancer is not the best for you - and you have that right - but this forum isn't the right place to keep posting links to information that goes against conventional treatment.
You will find more receptive ears in the complimentary and alternative forums for that. I would never tell someone to leave a forum, or that their view is inferior to mine. But in this forum, we need to support the people who are undergoing chemo for triple positive breast cancer.
I promise to shut up on this now!
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Hi everybody. Well, things have been really busy on the board here. Welcome to the newbies. I hope you find your participation here as much of a lifeline as I have.
I am dealing with a post-surgery infection that simply does not want to go. I'm in treatment mode running from appointment to appointment and test to test. It feels like deja vu and reminds me of the early days of 2017, waiting and wondering and googling. I have a good team of care takers and will have to try not to go down the rabbit hole with worry and anxiety. Easier said than done.
So, to the elephant on the coffee table... Communication on a board like this, mostly nameless and faceless, can often be difficult. If we met each other in person, like SpecialK and Coachvicky, I am sure that it would end up in one big, life affirming, and profound group hug. Everyone's input here is very important to me personally. I hope you all continue to participate knowing that other nameless and faceless triple positives need and want to keep this thread being the virtual community that it is. Group hug.
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Good morning ladies, wish me luck. In a few hours I go in for the post surgery visit and to get the oncotype results which will start me in on the next path- wherever that takes me. I’m so frightened but I see you all here, strong, vocal and vital, with those same abbreviations next to you that I have been given, and I have hope
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Best wishes for today.
Take paper and pen. Make good notes. Make sure everyone explains everything to your satisfaction.
Ask for a clean, paper copy of any labs / tests (not faxed or hard to read).
Vicky
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Suburbs ...
It was wonderful to meet SpecialK in person.
Again, I would be lost without all of you on "my support team.!"
I hope your infection clears up quickly.
Vicky
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Alrighty! Good news/bad news. Good news is I got the FISH results Bad news is I'm officially a member of the group. :-) and :-(
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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
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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.
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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
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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))
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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.
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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.
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Suburbs, I'm sorry to hear about your infection! How irritating for you.....
Cherry-sw, Congrats on finishing rads! Hope your armpit heals soon.
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Trisha-Anne ❤️, I am sorry about all your friends. This is all I have to say about that.
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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)
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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 :-)0 -
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.
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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!0
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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.
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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 WI0
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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!
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Suburbs, I am so sorry, I really am( I hope this infection of yours just go away, just does. Hugs to you too
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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.
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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
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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
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Is 11.5 actually high?
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Jstarling, as Lita pointed out, Oncotype 11,5 is not high fot TP, not at all, it is actually quite low
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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))
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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.
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cherry, what does TP mean. I was told it was high
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