TRIPLE POSITIVE GROUP

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  • Blownaway
    Blownaway Member Posts: 760
    edited July 2015

    I'm not smart enough to play those games!!!! Knit,Purl,Knit,Purl....need I say more????

  • Suladog
    Suladog Member Posts: 952
    edited July 2015

    Tonia,

    I'm really glad for the Herceptin it's really a miracle drug. 25 years ago when I was in my 30's Inwas triple negative and that was pretty scary for that time there weren't a lot of choice

  • Tomboy
    Tomboy Member Posts: 3,945
    edited July 2015

    Debiann, that is a lot of stuff gone very wrong! Weren't they aware they had a fever? Oh man, that's just wrong, but all the papers we sign say there's a chance of problems, up to and including death. I absolutely hate signing those papers, and I have never been given a chance to read them before any procedure, only after, when I am home and coherent, do I read the canary copy. The one time I tried to read it before signing my consent, the doc doing it and his assistant became very uncomfortable very quickly, to the point where I couldn't read, I kept reading the same sentence over and over. But I crossed out and initialed the part about where I wouldn't hold them responsible for injury. I don't recall, but I do think they made me do a new one before proceeding. it was only a biopsy, a year after surgery on this pesky so called re- active node. But he did scrape my rib when he missed. once. he said its like chasing a grain of rice in a bag of jello. I would say, give it a go. Your turn to be happy! and we will all be pulling for you!

    I played plants vs zombies, read magazines, watched people. solitaire.

  • IndyGal35
    IndyGal35 Member Posts: 340
    edited July 2015

    This may have been posted a while back, but it's a quick, illustrated video that explains how the HER2 protein is implicated in breast cancer and how Herceptin works:

    https://player.vimeo.com/video/12434125

  • lago
    lago Member Posts: 17,186
    edited July 2015

    debiann there is risk with every surgery/procedure/treatment. There is risk crossing the street too. Oh wait it it comes. one of my speeches…

    What If
    Remember the word "if" is in the middle of the word "life" for a reason. As long as you have life you will always have "what ifs". It's your Doctor's job to worry about those "What Ifs"

  • wpmoon
    wpmoon Member Posts: 270
    edited July 2015

    Iago, I love that.

  • sherry67
    sherry67 Member Posts: 556
    edited July 2015

    I am happy to say I will be 4 years NED on July 28th. That was the day of my surgery. 😊😊😊..I'm good for another 6 months...

  • Cheesequake
    Cheesequake Member Posts: 264
    edited July 2015

    lago, I love your quote. I hope you don't mind, I added it to a photo I took this morning!


    image

  • Gretagirl
    Gretagirl Member Posts: 182
    edited July 2015

    Hi. Thanks for all the support and well wishes for today. I have been here since 1030 and the herceptin is almost finished. I froze my finger and toe nails right before and during the Taxotere but as soon as it was finished I pulled the ice off! I used homemade ice packs that stayedcold the whole time (hour and fifteen minutes). The idea is stay cold cold correct? Not iced over lol! The Carboplatin was next and that gave me heartburn and gas shortly after it started but better when finished . I did 2 hours of pre meds 2 anti nausea and steroid plus I was on oral steroids yesterday and will be tomorrow too. Tomorrow I take two steroids in the am two in the pm Zofran every8 hours antihistamine for the Nuelasta injection Advil or Aleve and Compazine at bedtime. I stay on antihistamine for 5 days following Neulasta injection. Any of y'all doing this?????

  • debiann
    debiann Member Posts: 1,200
    edited July 2015

    Gretagirl, glad your first time went well!

    I did oral steroids 2or 3 days before chemo and an anti nausea for 2 days after. The only pre-med I had at the infusion center was 2 Tylenol. 

    My MO asked me to NOT take the claritin after the neulasta shot because everyone does not get pain from it and he wanted to see how I reacted first. No pain so I didn't need to use it at all.

    Pay attention to how you feel on which days. You'll likely follow the same pattern for all your tx, so you'll know when to expect your good or bad days. I learned that steroids constipate me, so I started taking stool softner the day of chemo. I also found that I needed to go back to the infusion center around day 3 or 4 for extra fluids. That helped me feel so much better.

    Good luck to you and wishing you minimal side effects.

    I had my first post chemo cut & color today (staying gray but added lowlights). Its 10 months pfc, not counting herceptin of course.

    Felt great to sit in a chair & be fussed over without needles involved!

    image

  • IndyGal35
    IndyGal35 Member Posts: 340
    edited July 2015

    Greta, each round was different for me. I agree that you should keep track of symptoms by "days post-chemo" as well as a rating (1-10) of how they are. Your chemo staff will go over this with you, and it will help them to help you better.

    I found that getting a liter of fluids on day #3 and #6 post-chemo really helped me bounce back better. Don't be afraid to ask for it if you feel rough later this week! (Also, if you feel like you need an IV anti-nausea med, they can usually give you that then too.)

    I also got a taxotere rash after every chemo. This is pretty common. Go ahead and call your onco at the first sign of a rash. They can call in a 5 day dose of 10-20 mg of Prednisine to knock it out. I suffered way too long with the rash the first chemo. If you see redness or itching, call and report it right away. There's no need to suffer more than necessary.

    Gentle hugs


  • alice12
    alice12 Member Posts: 55
    edited July 2015

    debian: it looks like your hair has grown a lot since your last chemo. you looks great

  • lago
    lago Member Posts: 17,186
    edited July 2015

    Cool Cheesecake

  • debiann
    debiann Member Posts: 1,200
    edited July 2015

    Thanks Alice. I have to admit, I am pleasantly surprised at how fast my hair grew back. The whole bald thing really wasn't as bad as I thought it would be. I didn't buy a wig. The one I liked was $600, way too much, so I settled for a couple hats and scarves. I'm glad I didn't invest a lot of money because during chemo I was too sick to care what was on my head and afterward the new hair sprouted rather quickly.

  • alice12
    alice12 Member Posts: 55
    edited July 2015

    debian: when did you complete your last chemo?

  • debiann
    debiann Member Posts: 1,200
    edited July 2015

    My last taxatore and carboplatin were in the beginning of September (2014), and by the end of the month peach fuzz was growing. The last Herceptin was in the beginning of May (2015). Here's a pic of the back of my head right before Thanksgiving.

    image

  • alice12
    alice12 Member Posts: 55
    edited July 2015

    debian: your hair grew really fast in just 3 months. I hope mine will grow as fast as yours, You gave me hope 😀.

    Thanks a lot

  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited July 2015

    still mad the hair on my chin is growing faster than head, and a beautiful shade of white and visible of cou

  • debiann
    debiann Member Posts: 1,200
    edited July 2015

    Wishing you lots of hair, alice!

    My aunt, a hairdresser, gave me Nioxin cleasner and scalp therapy conditioner for chemically treated hair. She said she had some customers use it and not lose their hair. I used it from the start of chemo, but alas, I went bald anyway, however I continued to wash my scalp with it weekly and I used it for the first few months till the hair filled in nice. I don't know if it helped it grow, but it felt soothing on my scalp, especially in the beginning when the hair was first falling out.

    I also tried to be kind to my hair when it started to sprout so I didn't break off any new growth. I didn't overwash it. I never bothered with a wig, and only wore a hat or scarf for work or shopping. I stopped covering my head as soon as it had some fuzz covering it. People at work told me I looked like a rock star, lol.


  • Gretagirl
    Gretagirl Member Posts: 182
    edited July 2015

    Good morning. Feeling shaky this morning and red faced probably due to steroids they usually do this to me. Will be needing laxative ugh!

    Debiann your hair is very pretty. Looks like it came back thick and healthy.

    IndyGal I am keeping note but didn't think about rating the issues thanks!

    Jerseygirl I asked someone if my chin/neck hairs would stop growing too but was told no, guess I will kept wheezing!

    Leaving soon for Neulasta shot. Have a great day everyone


  • oconnor2450
    oconnor2450 Member Posts: 58
    edited July 2015

    Hi Girls, so much happening here. Some newbies, sadly. But, this is a great go to group and I wish you all a smooth chemotrip.

    I have a question..been on Arimidex/generic Teva for 13 months, SE's tolerable, foogy brain, hurty thumbs and bone loss pretty intense. Now talking about/rec the switch to Tamoxifen for a while, then probably back to AI.

    I am hesitant as I prefer the devil you know type thing... and the 1st 3 months on the AI were bad. Anyone ever do such a thing? Any experience with Tamox. I am post meno.

    Thank you,

    Bridget

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2015

    oconnor... I started Arimidex a year ago after having been on Tamoxifen for just short of three years. I had a bad pap smear that showed endometrial cells there that were not supposed to be. Both my onc and my Ob/gyn thought it was tamoxifen related so switched me immediately. On Tamoxifen the major side effect I had were really horrendous, horrific hot flashes. On Arimidex, I have significant joint pain (combatted by taking a low dose of Cymbalta which almost eliminated most symptoms), the same thumb issue which required wearing a brace and getting a steroid shot. I have some bone loss but already had that starting so have been on Prolia for a year. I'll get a density test in December to see if there is improvement. Lots of weird arthritis issues which I never had until I started Arimidex.

    My aunt who is 94, was diagnosed with BC about 8 years ago. she is still chugging along. Never had a lumpectomy or anything, but they switch her up between Tamoxifen and Arimdex all the time.


    Debiann....I was going to get some surgery to tweak a few issues in the shape of one of my foobs, and had also talked about additional fat grafting/lipo or a slightly larger implant. Then Special K had some surgery done that went south. that was all it took. I decided to be happy with what I have that is working and stick with it a while. Scared me straight. I decided the ones I got rid of that were big were not really too great looking anymore so maybe I was being a little too picky with my new small perky ones. I do plan to go to get my nipples tweaked up with the 3d look by Vinnie Myers in the next year, but that is about it.

    Like you, Ive had some people die of weird unexpected things and I have decided not to tempt fate and ask for trouble.

  • goutlaw
    goutlaw Member Posts: 283
    edited July 2015

    Where did all the Stage 3 Survivors go? Anyone know where Camilla went?

  • debiann
    debiann Member Posts: 1,200
    edited July 2015

    Fluffqueen, I'm still undecided, leaning a bit towards be happy with what I got. I see the PS again in September and we'll make the final decision. Besides feeling like I'm tempting fate, I don't know that I want to put my body through the wringer again. 

  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited July 2015

    Lj I am her2 positive with a very small tumor (1.5mm) plus a single focus of microinvasion in my dcis. My her2 is very very strong. (fISH 4.8). I am in Boston and poured over the Dana Farbwr studies on early stage small rumors with no nodal involvement. I had great odds without chemo, but recent research shoes the results with taxol and herceptin are spectacular. So I am doing chemo. My her2 was just too strong not to. I might have made a different choice if I was her2- but I'm not. It's a tough choice. I have had few side effects and work full time. Just some really bad heartburn and some Bone pain.my hair is thinning dramatically, but I cut it short and have no need to wear anything yet and I'm half done with treatment. My period also stopped.


    Greta my face is red on the weekends too from the steroids.

  • KateB79
    KateB79 Member Posts: 747
    edited July 2015

    Hey ladies,

    Met with the first oncologist today. I liked her a lot (but won't let that influence my opinion of the second, whom I'll meet next Wednesday). I'm looking at TCH--six rounds of TC+H and then Herceptin for a year, no radiation because my nodes were clear and I had a mastectomy. She's planning to do baseline labs (CBC + full metabolic panel) and an echo. She also mentioned Neulasta, which I think I'll probably do, given that I teach mostly university freshmen and they're like petri dishes!

    She's amenable to complementary medicine as long as she can see the ingredients. She nixed my green powder and protein powder, but everything else is a go, including my multi, magnesium, vitamin D, and melatonin. She said I can ice my hands and feet if I want to; for some reason the Taxotere/nail thing is freaking me out a bit, and I'm not very excited at the prospect of neuropathy. She suggested B6.

    Any advice?

    Also: welcome to the other newbies. Sorry we have to be here, but we're here together. :)

    Happy weekend, all.

    -kate

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2015

    Hi Kate!

    Some ladies take L-Glutamine to prevent neuropathy. Special K knows about the dosing and all. I, personally, did not take L-Glutamine. I got some mild neuropathy (tingly toes and fingers) while doing Taxol-Herceptin-Perjeta, but it went away once I finished chemo.

    Ha ha ha -- yes, students are germy, no? When I was doing chemo, my favorite was the student who kept visiting my office to update me about his mono. Really, I thought, just email me about it!

  • Suladog
    Suladog Member Posts: 952
    edited July 2015

    Kate,

    I cold capped through 12wks of taxol/ her spring and did very well, lost almost no hair in fact I've had two hair cuts since finishing chemo in April... It grew that fast! I didn't ice anything but my head and had no nail or hand or foot issues such as neuropathy or blackening

    I took l- glutamine daily along with B6 D and biotin

  • Kb0041
    Kb0041 Member Posts: 2
    edited July 2015

    I am wondering how many Triple+ decide against chemo? I am 58, mytumor was 9mm, high grade(3), Her2FISH 2.2, I had a bilateral mastectomy as I am BRCA1 and there was no node involvement. Any opinions?

  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2015

    Kb - I would wager not many, this type of cancer is too aggressive and dangerous to skip systemic treatment - mainly the targeted monoclonal antibody drugs, which are thought to work better with chemotherapeutic agents.

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