TRIPLE POSITIVE GROUP

Hey Tresjolie! That is very thoughtful of you.

My suggestions are: pepto bismol and Imodium, mint tea and/or chamomile tea, a heating pad, miso soup (for belly aches - it helped me a ton), an extra soft bristled tooth brush, a cute hat or scarf (for hair loss), a drugstore gift card.

Wishing your friend the best of luck!

mactaz - that is a quandary, and the issue with neoadjuvent treatment - staging is sometimes uncertain. I would have been incorrectly staged if I had done neoadjuvent treatment since my large positive node - which was not the sentinel - was missed by imaging and not at all palpable, and my sentinel only contained IST (isolated tumor cells) that would have likely been wiped out by chemo and I would have been declared node negative when I really wasn't. When possible, I advise trying to see if you can get a SNB done when the port is installed, but I know that isn't always possible. Where I live a number of breast surgeons do the port installs - possibly because my BS, who had been head of breast surgery at the NCI center for many years, trained everyone under him to do them. That makes it easier to have both done simultaneously, but I know interventional radiologists and/or vascular surgeons sometimes do ports. Have you run the calculator with both negative nodes and one positive? I think your docs are likely reluctant because they can't definitely say, but maybe average your two calculator results and call it good. The thing with a calculator is that it is an amalgam anyway - there are those with a good predictive result that will recur, and those with a more dire result that don't - so while they are informational, they are not individual to you as a study of one. If you have done the systemic treatment, including extended Perjeta, plus surgery that would have been the same for a node negative or node positive situation, that is all good. Did your docs discuss rads because of the scarring in the one node? That, along with anti-hormonals, would be the only additional risk reducing avenues currently available I believe. It is hard not to worry, but every day out from treatment helps.

hapa - my result is about the same on Predict 2.1 at 62%, but Lifemath has me at 82%. In the Predict technical info it indicates the 15 year mortality predictions are not validated. Here is a link to that page:

https://breast.predict.nhs.uk/about/technical/technical

MACTAZ, I could not agree more about SpecialK! Even though I'm not a member of the Triple P Club, as I told SpecialK once in a PM, during the dark days of chemo when steroids prevented me from sleeping, I read this thread from beginning to end. I learned more about the HER2+ part of my tumor here than any other place, and primarily through SpecialK. What impresses me most is that she and others like her stick around to help those coming behind, and when you're first diagnosed, you need the voice of reason!

MACTAZ, you and I were diagnosed the same week and like you, I started treatment immediately because of the size of the tumor--so there's a lot we will never know. A year later, things are so much better, but it doesn't mean I don't have the rogue thought (for example), "What if there was cancer past the sentinel node?" I had my last Herceptin yesterday and I told my MO I never new I could behave so irrationally--mostly just between my ears and quietly--but hands down, it's the thing I loathe most about breast cancer. It messes with your mind, not just your breasts.

Tresjoli2 _ a blanket for chemo, silk pillow case for bald heads, small notebook to keep up with questions and information, water bottle for drinks,

warm socks with skid proof soles - easier to wear in the chair than shoes, snacks - salty and sweet, candies - I liked sour things.

Anyone taking HP - have you had any problems with cystitis?

Thanks SpecialK! I guess I won't drain my 401k to buy a motorcycle after all.

Tres - Your friend is very lucky to have you! I know that the single most helpful thing for me, especially when I was first diagnosed, was the support and understanding of one of my girlfriends who had been through at least some of what I was experiencing.

This board was way up there, too.

Pamela,

I’m late, but I loved Zilactin-B for mouth sores.

Special K - THANK YOU for the links. My doctor likes the Predict calculator too.

Tresjoli2 - I might suggest tea tree oil to put on her fingernails. I had TCHP and it can cause your nails to lift off their beds. I'd use it on toes too, as I did not, and I have trouble with two of my toenails now. What a very kind and sweet thing to do, you are a wonderful lady! Best wishes to your friend, and everyone.

Tresjoli, I found disinfectant wet tissues quite usefull during chemo, apart from the things already mentioned.

Hapa, for my case, predict says 75% at 15 years and Lifemath says 88%.

Thank you, Beesy_The_Other_One !

I just started Anti hormones today, After stopping the B complex, the cystitis cleared up. I plan on added a reduced dose back next week. We'll see what happens.

SpecialK, you can imagine my surprise, knowing how most women struggle to raise their D levels, that I was so high. Don't worry--you can't know this about me, but I defended myself adequately. I was diagnosed a year ago yesterday, and if they ever tested for Vitamin D, I am not aware of it, but he assured me he'd be checking my levels every time from here on out like I'm on Vitamin D probation now (😂). I was honestly dangerously high, and it will take some time to get this out of my system, but I'd done a lot of reading that convinced me that most women could take that much for a couple of months before being tested. After all I'd read about the link between Vitamin D deficiency and breast cancer, I could not imagine that I wouldn't be low. I mentioned it mostly for those reading who are thinking of taking it--to do over, I should have gotten a baseline first.

Autumn, my daughter fulfilled a lifelong dream when I had her shave my head when my hair started falling out, but throughout TCHP, my hair actually kept trying to grow back (not real amounts, just enough to look like a Dr. Suess character) so I would shave it now and then. Sometimes I wonder if I'd just cut it very short and not shaved it, even though I had two huge completely bald spots in the front . . . when it did start coming back, perhaps it would have come in faster as if it had a head start? I'm eight months post final chemo and I have just over 1 inch of hair, but as I learned recently on this thread, that's probably from Herceptin, which I just finished. Autumn, are you taking Claritin for the Neulasta bone pain? It helped me (not Claritin-D). Also, as an encouragement, my first chemo was the worst by far and only later I learned they gave me a loading dose so my side effects that round were magnified. I hope that's the case for you!

Autumn- I was diagnosed in July, I’m 35 years old. I shaved my head this past weekend, 17 days after my first chemo, it started falling out really bad and I was sick of having hair everywhere. It has not been as bad as I expected, no tears and I’m just wearing my shaved head all over the place. I bought wigs and head coverings, but haven’t used yet. I did take Claritin day before chemo and for 7 days after and it helped with bone pain I think, but it’s still pretty painful. Everyone seems to have side effects to a different degree I think. Mine almost all went away on day 10 post chemo, and I was able to go back to work, besides fatigue, still have that. Next chemo tomorrow.

Autum, so sorry you have to be here but it is the best place to help you get through. My hair started failing out slowly within 2 weeks and more around that 17 day mark. With everything you deal with in the beginning I was struggling the most with hair loss. So I went to a salon after the 2nd infusion and got a short haircut, they did it for free, so kind. Then my friend came to visit after the 3rd infusion and brought me a special package with a wig and several hats. With her help, we buzzed off the rest of my hair, I was so glad I did that. I felt a little strange at first going out, people do look at you but with kindness. People were always so nice and friendly. I’m now also 8 months out and my hair is about 1 1/4 inches, growing slowly due to herceptin but it is coming back. We are here for you.

Beesy, congrats on your last herceptin. Mine was three weeks ago today. It is weird after a year of going in every three weeks for infusions not to have that on my schedule. I’m still waiting for the darn nose drip to stop, not yet.