TRIPLE POSITIVE GROUP

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  • kae_md99
    kae_md99 Posts: 394

    when did your hair start growing after chemo? did you use any shampoo/ supplements to help ? thanks

  • specialk
    specialk Posts: 9,299

    It took me 4 months to have enough hair to go without a wig, and I took Biotin, 5,000mcg a day, I also used Bosley shampoo from my hairdresser.

  • kae_md99
    kae_md99 Posts: 394

    Thanks SpecialK. anybody here with experience with Rogaine?

  • elainetherese
    elainetherese Posts: 1,640

    Four months is about right. I finished chemo in December and was going wig-less by March. It was quite a shock for my students as I went from someone with shoulder length-hair to a very short do in a few days.

  • kae_md99
    kae_md99 Posts: 394

    Thanks Elaine , my kids are freaked out with my bald head ,they run away if i don't wear my beanie in the house and i cannot wear a wig... so a little help speeding up the growth after last chemo will help.

  • Tresjoli2
    Tresjoli2 Posts: 579

    Kae my kids couldn't handle it either. I had to wear scarves all the time.

  • specialk
    specialk Posts: 9,299

    hap - an LVEF of at least 50 is considered normal, and is usually anywhere between 50 and 70. When monitoring heart function during Herceptin doctors look for a 10 point drop, or a 10% drop between quarterly echos or MUGA scans. If you sustain a drop that is deemed unacceptable, Herceptin can be postponed or discontinued.

  • HelenWNZ
    HelenWNZ Posts: 404

    I finished chemo in October and went hatless in January. It was summer and so hot. My hair was so short but I thought it's the other persons problem not mine. Last week I had my first haircut. More like a trim really to try and sort out my grey poodle mop of hair. My echo results are considered normal at 58 a drop from 64 to 68 in the beginning. I only have 4 herceptin to go so if I keep plodding on she'll be right. I'm so looking forward to finishing the herceptin as I will then find out what side effects can be attributed to letrozole. Actually today is one year since my surgery what a crazy journey I'd much rather not be on. Take care everyone

  • suburbs
    suburbs Posts: 398

    Hi all. The lesion found on a CT scan was removed last week via an out patient procedure under general anesthesia. I won't get my results until next week. The waiting is torture.

    I have a BMX with reconstruction scheduled in a few weeks. I'm not sure if the one surgery and outcome will put the brakes on the plan for the second. This is rather ironic as I had started out convinced I would not have reconstruction. I am on week three of Prozac. Appointments with surgeons and more waiting are upcoming.

    TCHP number 6 has put me out of commission for two solid weeks moving from couch to bed in a state of total inertia. That cumulative effect of chemo really sneaks up on you. My eye brows which had been thinning slightly basically fell off after TCHP number 6. I will lose only two nails, one on each hand, soon.

    Today, I feel some energy returning, ready to get back on my tread mill and join the land of the living while avoiding looking in any mirrors. Thanks for listening to my tales of woe as it's been cathartic to post them. Onward.


  • shelabela
    shelabela Posts: 327

    I did not lose any nails! I had one that started to lift but that was it. Now that I have completed the 12 weeks of Taxol it is back to normal.

    I am on AC right now and it is totally kicking my butt! But I only have one more of these and I am done! Yay!!!!!

    After my last Chemo on June 12 I have a few weeks of "rest" then I have a total Mastectomy on July 19th. I am told I will need to have at least 4 nodes removed and then they will test the others at the time of surgery to see if more need to removed. Then I will have rads for 5 weeks. When I started this journey I never thought I would get through Chemo, Seemed like so long.

    My MO talked to me yesterday about what would come after all this. Herceptin for a year then Tamoxifin (SP) for 10 years she said. Maybe talked about removing my ovaries, So many things to think about. If they remove my ovaries will I not need to Tamoxifin for 10 years???? If removing them doesn't make a difference why do it? Anyones else dr talk about this? I am only 43, and where as I am done with having kids and could care less about anything like that.

  • bareclaws
    bareclaws Posts: 246

    shelabala, good about the nails! I've got six Taxol done (after AC, so ours was just the opposite) and nails seem OK so far. They have changed shape somewhat, but no darkening or lifting. I keep them short, still trimming them every week, and unpolished. I'malso icing during Taxol.

  • elainetherese
    elainetherese Posts: 1,640

    Suburbs, sorry to hear you're waiting for test results (again). My eyebrows have never fully recovered from chemo; I just pencil them in a bit. And, my poor eyelashes are still thin and stubby.

    Shelabela, Yeah, AC was worse than Taxol. The SOFT study showed that ovarian suppression (or an oopherectomy) + Tamoxifen was more effective than Tamoxifen alone for younger (pre-menopausal) women. You could do ovulation suppression (monthly shot of Zoladex or shot of Lupron every three months), but an oopherectomy accomplishes the same thing. The SOFT study also showed that ovarian suppression + an aromatase inhibitor was better than tamoxifen or an AI alone for younger cancer patients. I'm currently doing Zoladex + Aromasin, but will talk to my new OB/GYN about an oopherectomy on Monday. My old OB/GYN was not a fan of oophs; he said that overall, women who kept their ovaries lived longer than women who didn't. But, I'm not sure that I want to take Zoladex for several more years. Hope this helps!

  • shelabela
    shelabela Posts: 327

    ElaineTherese,

    Yes that does give me some more to go off. Is this SOFT study online yet. Can I check out info about it?

  • elainetherese
    elainetherese Posts: 1,640

    Shelabela,

    You can Google "SOFT study and breast cancer" to find info about it.

    Here's a link to the journal article:

    http://www.nejm.org/doi/full/10.1056/NEJMoa1412379#t=article

  • kae_md99
    kae_md99 Posts: 394

    i started Lupron more than a month ago and now i am feeling the SEs. joint pains,insomia,cold/hot flashes. i did wonder today if its just better to have oophorectomy, will have to ask my OBGYne. i will be on Lupron and AI for 5 years and i will turn 45 in a month....

  • sportsmom16
    sportsmom16 Posts: 23

    Hi All- posted last week about anti-depressants and interaction with Tamoxfin-apparently almost no one else is having these concerns so I am going to broaden my question as to what folks did to fight depression- wonder if everyone else just toughed it out-

    I am crying everyday and not sure why- the remaining Hercepton treatments aren't bad and don't think the reconstruction will be as hard as the mastectomy so not sure why I am completely breaking down now. Did anyone else take anti-depressants to get through that - is it a bad idea-- I cant go back to work crying every morning- tried meditation, journaling, exercise, writing gratitude lists- not moving forward - just cried the entire way on my walk- at my wits end

  • kae_md99
    kae_md99 Posts: 394

    hi sportsmom, i am like that sometimes. i will have my last TCHP on friday and chemo was brutal which caused my anxiety. my PCP gave me anti anxiety pills, clonopin and it helped a lot. just wanted to share. i dont know though if it has interaction with Tamoxifen...

  • suburbs
    suburbs Posts: 398

    hi sportsmom. I avoided anti depressants for a few months but a couple of days of intermittent crying helped me realize that I needed the help. The multitude of treatments and steps one faces when triple positive make a tough journey even more difficult. I haven't taken them long enough to know if they are working but I am glad I started.

  • sportsmom16
    sportsmom16 Posts: 23

    Thanks Kae md99 and Suburbs and all who replied-- Honestly for me, the emotional toll has been harder than the physical. Everyone is kind but they think now that the mastectomy is done- its over. They forget about the reconstruction, the rest of the medication, the still having not much hair, the worry.

    Someone told me just get over it- I would love to get over it. It will be so much better when my hair grows back and I can get rid of that hot wig.

    I guess you have no idea until it happens to you. Thanks for being kind.

  • moodyblues
    moodyblues Posts: 393

    My first Chemo session went very well, no allergic reactions, thank the Lord!  Feel very tired from the Benadryl but, it may also be from the lack of sleep last night from the steroids.  Long day, arrived at 9 and left at 4.  Neulasta at 6:30 tomorrow evening and I have been taking my Claritin to offset some of the pain that is associated with that.  Felling good, feeling positive.

    Cross posted 

  • deni1661
    deni1661 Posts: 425

    Hapb - I sympathize with your angst over the chemo or no chemo decision. I am participating in a clinical trial taking Herceptin and Perjeta only, no chemo. I had great results, just had mastectomy and recon. Path results no cancer in lymph nodes or margins and a few single cancer cells in the breast tissue. I posted a reply previously with the trial details. I can post again if you want more inf

  • deni1661
    deni1661 Posts: 425

    moody - glad to hear your first chemo went well. Stay positive, take care

  • kae_md99
    kae_md99 Posts: 394

    sportsmom, i totally agree with you. you don't have an idea unless you have cancer. hang in there...

  • moodyblues
    moodyblues Posts: 393

    HapB   Thank you.  I am on Taxotere, Carboplatin and Herceptin.  Once every three weeks.  Feeling pretty good this a.m.  A tiny bit queasy so I took my anti-nausea meds immediately.

    Deni  Thank you!  I am going to keep positive and try and remember all of the tips everyone here has given me and all that my ONCO nurse gave me. 

  • kae_md99
    kae_md99 Posts: 394

    hi all. can you tell me your diet to help prevent recurrence? like no soy, no dairy products,etc.also any good book to read regarding it?

  • bareclaws
    bareclaws Posts: 246

    kae, the only diet change I've made is to eliminate my beloved wine and margaritas. That hurt, but I haven't had a drink of any alcohol since November. Having said that, I had what I think is a really good diet before BC-mostly vegan, with the addition of eggs and occasional fish. (Marijuana is a vegetable, right? 😎) I read about a recent study which indicates that soy is NOT a problem. Sorry, I don't have a link, but maybe someone else does. Not sure how much our diet has to do with it. Exercise seems to have the biggest influence in preventing recurrence.

  • wabals
    wabals Posts: 192

    Bareclaws I will never give up my wine.

    Rarely eat sugar and meat

  • coachvicky
    coachvicky Posts: 984

    A friend with BC said to me "they let you drink wine?" I didn't ask. Some things I am just not going to change, LOL!

    BTW, I did an interview for genomic testing. I said I thought it was medical malpractice to give us hormonal pills when no test exists to truly measure our levels and it was also malpractice not to give EVERY woman genomic testing if they wanted it. Got real quiet on the other end of the line.

    C Vicky

  • kae_md99
    kae_md99 Posts: 394

    so i know cooking meat by grilling is bad.does it also include broiling in the oven? i love broiled fish.:

  • elainetherese
    elainetherese Posts: 1,640

    wabals and coachvicky,

    I've had a hard time giving up alcohol. I've focused on reducing the amount I drink. If I have only one small bottle of wine in the house and I share it with DH, I don't drink much, maybe a glass with dinner. Some days, I completely abstain. I'm like the person who tries to quit smoking by buying my cigarettes one box at a time......