TRIPLE POSITIVE GROUP

Jumpship

So with that link for Komen where they are staging things differently...if I move from a stage 2b to 1a does that mean that my likelihood of a long life got better? Or still rely on what cancermath says? Thanks for helping me to understand

JaBoo

Jumpship - that's exactly what I don't understand about the new staging. When I look at szrvival percentages, shall I look at my new stage cathegory? Under the new staging I would be IB which is way better than IIB... but komen doesn't say anything about this... and I couldn't find any hint somewhere else

SpecialK

This staging criteria is new, and old survival stats and treatment paradigms based on the previous system are not applicable to this way of staging newly diagnosed patients. The survival stats we look at now are based on patients from a minimum of 5 years prior when this system didn’t exist yet. Also, those of us already staged under the old system are not restaged under the new one. I’m also guessing that unless your pathology report indicates it is being pathologically scored using the new guidelines it may very well be done using the previous one.

Jstarling

THANKS, coachvicky, these words boost my spirits. I’ve finished 5 chemo, one to go and feel low and pretty beat up. Now I am just hoping my next Echocardiogram allows me to resume the Herceptin and get back to the original plan. The information and support on this board is incredible

Moderators

Hi All, This page may be helpful on Staging.

JaBoo

Thanks for the input reg. staging...

As I see it now from the links - being triple positive is a good prognosis. Am I right? (I think I don't want to know if I'm wrong) Acc. to the models from AJCC (link by SpecialK here on July 9th) - the odds are better for triple positive than for TNBC and even than for HR-/her2+. almost the same as for HR+/her2-. I've been looking at grade3 tables...

I had a visit today of a lady 37years who is just before her last Herceptin shot (we get shots in Europe). It was a huge encouragement for me, since she had exactly the same chemo as I'm starting on Monday. I also wanted my small kids to see her - so that they see somebody after the treatment. she looks beatiful with new hair and all smiles and has kids almost the same ages as mine. all in all, a great help. women help each other, soooo strong feelings for me... she even contacted me herself through friends, so it was her idea. such a help, it brought me to tears.

whywhy

Went for another Herceptin and Perjeta infusion today. I have two questions and wonder if anyone can share their experience. Thanks!

1) Tumor marker. Found out that I got tested for CA 27-29 today. Googled it and it's tumor marker. Result came back normal. Is it something that doctor should check regularly for recurrence detection?

2) Bone density. Did not get my shot for bone density today because my onc is on vacation. But found out he plans to use reclast instead of prolia. Reclast is once a year. I saw most people seem to get prolia. Anyone else use reclast?

Ingerp

JaBoo--I was told that HER2+ is a more aggressive tumor but has better outcomes, specifically because of Herceptin.

coachvicky

Jstarling ... Thank you. That beat up and low feeling is your body telling you that it is tired. So ... go for a nice long walk with some fresh Georgia air. You may still feel beat up but I bet the low feeling just may go away. I don't know why it took me so many decades to finally understand that exercise does energize the body. I went to a Wellness Seminar at our Military Health Center probably 15 years ago. A Physical Therapist spoke. I remember him saying that he was not asking us to be runners. He just wanted us to stretch first thing in the morning and to move throughout the day. You know, the first things my dogs do when they wake up? They stretch.

All ... About staging ... It was about four months after diagnosis that I asked my Oncologist to (once again) explain my staging. He did. I think early on it is just hard to wrap our heads around all the numbers identifying our cancer.

JaBoo ... I hope you have the opportunity to do for another BC Woman what the kind 37 year old did for you. What a great gift she gave you! I think what is "good" about triple positive breast cancer (if there is a good) is that our treatments work and we have available treatments that are tailored to us. I remember when my Breast Surgeon and his Nurse told us it was 3+ cancer. They both said this is a good thing. I didn't know why but I trusted them to know why.

Yesterday was another anniversary date for us. It makes two years since the mastectomies. In all honesty, I did feel sad in the morning. It wasn't sadness about not having my original breasts rather sadness about all that happened. I spent some time in reflection and prayer. I realized that is was an OK anniversary to acknowledge because if I had not had the mastectomies I would not be where I am today. And today I have a really nice rack ... I am alive ... I am healthy.

I want to thank all of you from the bottom of my heart for responding to all my questions and posts during this journey. You have made such a difference in my life and recovery. I remain grateful.

Vicky

JaBoo

ingerp, yes, I see it now too... more aggressive kind if tumor but with more tx options

Coachvicky - exactly what I thought too - I hope to be able to help someone in the turmoilt of the first post-dx weeks... I woved I will, when I hear about somebody

SpecialK

Her2+ tumors have better outcomes than they did before the advent of targeted monoclonal antibody therapies like Herceptin and Perjeta, but this brings them even with Her2- tumors in terms of treatment outcomes. In essence, for the most part, these drugs have leveled the playing field. There are always outliers for whom these medicines do not work, or resistance is acquired after receiving them for some time - including during the year of initial treatment.

whywhy - regarding your questions - some oncologists do tumor markers regularly - mine does - but others do not because for some patients they are not reliable for everyone - will either show false positives in terms of the numbers climbing due to a non-cancer reason, or false negatives in terms of no change in numbers but metastasis is present. Many other factors can drive these numbers up - for me, any type of inflammation has triggered a rise in CA27/29 - well above the high end of the normal range. I did not have mets, but rather inflammation from chemo (my CA27/29 was double high normal right after chemo, and had been normal prior), and at the 5 year point when I also had an abnormal PET that was due to four different types of inflammatory process bi-laterally from issues with reconstruction. My counts returned to normal after surgery. Reclast is the IV form of oral bisphosphonates - it is less expensive then Prolia, so some insurance companies prefer to start with it. Bisphosphanates also show protective action in the form of strengthening bone to provide a less hospitable environment for bone metastasis. Reclast has been around for many years, longer than Prolia.

whywhy

SpecialK, Thanks for the info on both CA27/29 and reclast! Good to know that CA27/29 goes up and down. Otherwise, I might get scared next time the number came out high.

lg10

Today I finished my last taxol, herceptin, perjeta treatment. I have 2 taxol only treatments left and then I will be on the HP regimen until May of next year. One thing I was really looking forward to after chemo was starting on some whole food supplements (mushroom powders in coffee, lots of green tea, etc—all based on books/research I’ve read throughout chemo). However, my NP said that I should not start any herbal supplements during HP only. Her explanation being that they just don’t know what may react to the medications. She has approved biotin and probiotics. Does anyone have any experience or thoughts?

coachvicky

Did someone post (a long while back) that they took Gabapentin for neuropathic pain and had to wean yourself off of it? Please PM me.

Thanks,

Vicky

Taco1946

Coach - I tried to PM you - not certain it went through. If not, let me know.

Taco1946

Tresjoli2

coach I did that.

Suburbs

lg10, I had a similar experience with my oncologist. During TCHP, I was asked to limit supplements to a multivitamin. Then,with H only and prior to surgery, I started a regimen of biotin, arnica, vitamin c, and bromelain along with impact, a liquid designed for presurgery healing. Eventually, keeping track of all the pills became difficult which led me to go with just a multivitamin.

If your treatment center has a nutritionist, you might ask to meet and discuss your concerns. I found the nutritionist at my center to be very helpful in navigating what could be allowed and suggesting whole food alternatives to supplements.

Hang in there

JaBoo

I'm thinking constantly about what to take during chemo....

vitE - found a scientific paper talking about it and suggesting it helps with neuropathy from taxanes. it was specifically dealing with SE of various chemo regimens. (it's not in english, otherwise I would post a link of course). Are there any risks from vit. E? any thoughts?

I've asked my MO specifically about Mg+B6 supplement, since I'm taking it because of occassional back ache (spasms). She confirmed I may take it during chemo. Has somebody heard/read something else?

Vit. D - I'm going to take it. I will ask about it, of course, but has somebody here read something against it? I'm concerned about my bone health with my age. I'm receiving my first shot to block my ovary function tomorrow (forgot the name, maybe zoladex?) with the first chemo.

melatonin - I have read various texts, positive as well as negative, so I don't know. anybody had been taking it during chemo? (I'm really not sure about the english in this question... 🤨 sorry)

fish oil/omega3 - I believe there can't be any harm in it during chemo, since eating fish is not discouraged - on the contrary it's encouraged I think...

I have purchased this small box with separate places for each day... to organize my pills/supplements. I'm not sure I'm gonna use it, but it may spare some RAM space in my chemo brain 😀

SUBURBS - your MO was OK with you taking a multivitamin? that covers just about anything, doesn't it? I mean vitamins, minerals are often also included...

Homemadesalsa

Jaboo that's awesome that you're doing your research, taking charge of your experience. I did something similar as I really didn't want the neuropathy that often accompanies Taxol. I used the weekly divided pill holder and took all of these, which were all vetted by my MO: multivitamin, Lysine, L-glutamine, L-carnitine, B-12, and Vit D. No anti-oxidant supplements such as turmeric or fish oil, as they can protect the cancer cells as well. I only had twinges of neuropathy 2-3 days post taxol, then none the remainder of the 3 weeks (I did dose dense tph) and no neuropathy now.

tld2017

Hi Ladies, I have a question regarding dizziness. I am currently receiving daily radiation and also getting Herceptin/Perjeta infusions every three weeks. I have found myself extremely dizzy in the last week or so (I got my last infusion last Tuesday). Sometimes the dizziness is accompanied by nausea. I plan on calling my oncologist's office tomorrow but wondering if anyone else has experienced this. I don't think rads cause dizziness, right? Could it be the higher dosage of Herceptin that I'm now receiving? Or could it be because they lowered my dosage of Gabapentin last week to just 300 mg nightly? I'm trying to drink enough so I don't think it is because I'm dehydrated. Thank you in advance!

Taco1946

Sounds like your blood pressure may have dropped. Have you become diabetic? My father was an insulin dependent diabetic so my primary has watched mine for years. He put me on metformin last visit. I had also read that for some reason it also helps with the joint pain so it seemed like a win-win. I also carry hard candy with me.

Hydrate, hydrate, hydrate. I have switched to carrying gatorade rather than just water when I play golf or walk. I've learned living in the desert that by the time you feel thirsty, you are already in trouble.

Your MO may want to slow down your infusion. Some people do have trouble with the denser dose although I never did. Consider a claritin generic as part of your arsenal if you aren't already. I started during taxol and have continued.

Another thought - I was taking 1200 gaberpentin at the end of taxol and my neurologist told me to taper it off. You didn't say what dosage you were taking before but that might be worth discussing with MO too.

Feel better.

SpecialK

tld - also, have someone take a look at your ears - dizziness can be an equilibrium problem due to inner ear issues.

tld2017

Thank you, Taco1946 and SpecialK, for responding! I saw the oncology nurse practitioner this afternoon and she ruled out most things and thinks it might be vertigo caused by some sort of inner ear issue. She prescribed a medication and gave me a print-out with some "maneuvers" to try to correct the issue. She said if it is still bothering me in another week or two, I might need some more imaging of my brain, which is scary. I had a brain MRI in February and it was fine. Not sure how quickly a tumor can grow in the brain or how quickly it can start causing problems. Hoping it is just something simple that is causing my dizzy spells/vertigo.

shelabela

tld, vertigo is horrible, I've had it for years. Did they give you meclizine to take? And yes those exercises work so do them. Also a chiropractor helps some. Watching your salt intake will make a difference.

Sorry I haven't been around much, having a hard time adjusting to the "new" me. I've started seeing a counselor and it's helping some. I have gotten rid of a few friends that were dragging me down. One of them was always asking me if i was worried I could die. She would text me 3 or 4 times a day mentioning that "evidence shows most women with my type die or have a reoccurrence within 2 years"

I have also been fighting with insurance

Trying to figure out if my memory will ever be what it was before. Anyone else having this problem?

Hoping my sex life gets back to normal soon

Scared shitless about my upcoming exchange surgery tomorrow.

Stressed about bills

Ladies everything is just getting overwhelming.

Ingerp

(((shelabela)))

coachvicky

shelabela

Keeping you close in my prayers, Girlfriend! I bet everyone in this forum is sending you warm, loving hugs!

Glad you are seeing a counselor. If this one is not a great match, find another one. My Primary Care shared that finding a Mental Health Professional was the "most intimate" of all medical / patient relationships. I think he is right. I had always thought it was my Gynecologist. Guess that shows were my priorities were.

Have you asked your insurance for a Case Manager to help you?

I dropped a "friend" who asked if I had considered natural treatments instead of chemo, LOL. You can not fix stupid but you can get rid of stupid "friends."

So your exchange is today, yes? Remember don't look at them. It takes a few weeks for everything to settle and adjust.

Vicky

ElaineTherese

shelabela

Best wishes for a successful exchange surgery! I'm with coachvicky -- a counselor sounds like a good idea. I'm sorry that you're feeling overwhelmed; I feel that way too, sometimes. Do you have a nurse navigator at your cancer center? Mine helps patients with their financial challenges. ((Hugs))

shelabela

Thanks ladies! My exchange is tomorrow! I will keep you updated

hapa

shelabela - send me your friend's email address and I'll send her a nasty email!

Tresjoli2

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