TRIPLE POSITIVE GROUP

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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited September 2017

    PauletteK, I am so sorry about your sister. I have always been supportive it is just now I do not want to be reminded of it by people who cannot understand what it is. I do appreciate they care but bc for them is just a one month of be reminded of more often than usual, for me it is a new reality.

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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited September 2017

    I have a question for those of you who already is on Tamoxifen, does it make the hair very thin? By now I have lost approx 50% of my hair and I expect the rest of it disappear next week. I have thick wavy hair that I cut into a short bob before chemo. Now it is so thin that I am thinking is it how I am going to look while on Tamoxifen? Cherry

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  • Saadia1
    Saadia1 Member Posts: 10
    edited September 2017

    Thank you Cherry-sw and Coach Vicky for your kind words.

    Coach Vicky - I am documenting everything as much as possible and will continue to do so. This forum has helped immensely in terms of helping me equip myself with the necessary information to deal with the chemo. Having said that, every situation is different. I have had a few side affects - body ache, fatigue, itching, had nausea twice but then it went away, some minor neuropathy in my toes. As I get closer to Chemo end date (Oct 4), I get both more hopeful and panicky. Does that even make sense?

    Cherry - when you talk about testing, are you referring specifically to testing for recurrence risk for her2positive? My MO used the prosignia test but honestly I really don't understand the basis of his risk assessment (From 24% to 10%) but I try to take whatever solace i can from it. Part of me is still fearful and disbelieving though.

    My KI was 5-10%. When I asked my MO about it, he said that as far as he was concerned it means nothing given that i am Her2positive. (sigh)

    I am trying to focus on being positive and live in the moment but it's quite hard right now. My MO said that it will get better with time. I hope so. I am already quite exhausted.

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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited September 2017

    Saadia1, I do not know much about testing frankly speaking, hope another ladies on this thread will be able to give you better answers. I know that Oncotype cannot be used for Her2 positive, Mammaprint can be used though but its results are debatable according to my oncologists, they say they are not reliable. I live in a country with governmental health insurance, all oncologists are following national standards, now I have seen several oncologists, two of them who I asked about testing said the same thing. It also could be a matter of cost.

    I also quite exhausted and cry several times a day. It is understandable, we are going through a trauma. My only tool so far has been telling myself that I will not dye from it today and therefore it is better to try to live than to lay in bed crying. No matter what future holds for us I feel like I would regret that I did not lived when I had a chance. It is not always going so well, but at least I feel I have figured out some way and will try to follow it. I am still though having pity parties very often and am enrolled into two different therapists. Just hang in there, you have done 2/3 of the chemo, you will be done before you know it. I wonder if depression may also be a SE of the chemo. Cherry



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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited September 2017

    HapB, this is what I am afraid of. Before I did not even care much about my hair, just had it in a pony tail and went to work. could probably fix it for some party. Now when it is shedding I really miss it.

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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited September 2017

    HapB, thank you, it takes time for hair to grow, some grow it very slowly, I am sure your hair will come back soon. I have been told by my oncologist that Taxol cannot cause permanent hair loss. You do have family too, I am sure your daughter will love to spend time with you. I mean I would have been there for my mom as she is now here for me. Do not feel lonely, you can always talk to us here. I am here very often, I work sometimes and I read the board sometimes. Other times I am doing things at home and go to my appointments. And the cats are very underestimated, mine is actually very good to be around me nowadays. She is a champ when it comes to sleeping and today I just looked at her at my bed and crushed besides her, we slept tight for a couple of hours, always something. Cherry


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  • Tess111
    Tess111 Member Posts: 58
    edited September 2017

    Hi Hap,

    I wanted to let you know that for some women, Herceptin slows the regrowth of our hair. I had my last chemo in mid-November last year, and by the time I had to have my driver's license renewed at the end of March, I still had only stubble and had to wear a wig! (By that time, my MO had me on letrozole, which I don't think helped any hair growth.)

    Because of some issues I was having, my MO held up my April Herceptin infusion. I had enough of a mini burst of hair growth after missing that infusion that I suddenly had enough hair to go out in public comfortably without any head coverings.

    Here it is August, and my hair is still only about three inches long on top and less on the sides. I have a few thin spots, but there is enough hair to cover those spots. I call it my gray "stuck my finger in a light socket" style, because it is very wild and curly. (But I swore, if I my hair ever grew back, I wouldn't complain. So, this is me, not complaining.)

    I was very concerned because I am over 60 and I figured my age might play a role in hair regrowth. Even more concerning to me, I knew that Taxotere sometimes causes a small percentage of patients to experience permanent hair loss, and I wasn't feeling particularly lucky at that point. However, I could feel small stubble and I knew that meant the follicles had survived. Fortunately for you, Hap, Taxol does not have that profile. So hopefully, soon, you will start to see some progress.

    I did take Biotin, but I have no idea if that helped or not. Patience, I am afraid, has never been one of my virtues, so I can certainly understand your consternation with seeing no regrowth. It is definitely aggravating, but I wanted you to know you are not alone.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2017

    Just wanted to come and say hello quickly - I live in Tampa and we are about to be affected by the hurricane, so I may not post for a while. As soon as I can come back, I will!

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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited September 2017

    SpecialK, I was thinking about you and your family when I was watching CNN this morning. Please stay safe and I hope this is over soon. I saw your other post on So, what's for dinner thread, I hope your house stands and you will be able to come back to it soon. Cherry

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  • coachvicky
    coachvicky Member Posts: 1,057
    edited September 2017

    Stay safe, Special K.

    Keeping you in my prayers.

    Vicky



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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited September 2017

    I found this article posted on another thread. I wonder what is genomic high risk for recurrence vs clinic low risk?

    https://www.news-medical.net/news/20170904/Even-sm...

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  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited September 2017

    SpecialK, what can you do to prepare?

    Thinking of you

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  • kae_md99
    kae_md99 Member Posts: 621
    edited September 2017

    praying for you Specialk

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  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited September 2017

    Hapb, you've spoken of your other cancers and I am wondering if you're ok sharing what you had? If not, I totally understand!! I was just wondering about your rare one where surgery was the only option. Your body truly has been through the ringer

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  • shelabela
    shelabela Member Posts: 584
    edited September 2017

    thinking of you SpecialK. Stay safe!

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited September 2017

    Hunker down, Special K!

    Hope the hurricane is not as damaging as predicted.

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited September 2017

    Thinking of you Special K

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  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited September 2017

    I just read about a head on collision in Florida that killed a Deputy and a Corrections Officer - all because of this hurricane. It's horrendous.

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  • Kimberbir
    Kimberbir Member Posts: 65
    edited September 2017

    Stay safe Special K

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  • shelabela
    shelabela Member Posts: 584
    edited September 2017

    Ladies that are done with chemo and wear glasses..... Have you noticed a huge change in your vision? I need glasses to see for away and since chemo my vision seems to have changed a lot.? Is this normal?

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  • coachvicky
    coachvicky Member Posts: 1,057
    edited September 2017

    My eyesight improved during chemo and has not reverted.

    Vicky


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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited September 2017

    Shelabela, Iam not done with chemo, but I felt that my vision impaired at once. I am near-sighted. I went to the eye clinic for two weeks ago, my GP wanted to check my retina issues. Before they give you a drop that makes your pupil large they do a short vision test. She just hold glasses against my glasses that are over two years old and were fine I thought. It was additional -1,5 on one eye and -1,25 on another. I have to get myself a new glasses but I will wait and see whether it will get better.

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  • T-Sue
    T-Sue Member Posts: 217
    edited September 2017

    Shelabela, I definitely noticed a slight loss in vision during my weekly taxol. Had trouble reading with my contacts and my glasses. (Just had eyesight checked a few months before diagnosis/treatment, so I know my prescription was current.


    I am now 3 weeks PFC and it seems to be getting a little better. In my oncologist office today and the nurse practitioner said it is the steroids as pre-meds that effect vision. They suggest that I wait until 6 months PFC for my next eye appt.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2017

    Hello all - reporting in safe and sound, came home to find my house intact, yard is a mess with debris, but nothing we can't handle. Thank you so much for the concern and good wishes! I know how lucky I am

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  • T-Sue
    T-Sue Member Posts: 217
    edited September 2017

    Great news Special K!

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  • Taco1946
    Taco1946 Member Posts: 645
    edited September 2017

    As my optician put it, there had been "significant change" since my eye exam 10 months prior. And almost 6 months post taxol, it isn't getting any better.

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  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited September 2017

    SpecialK, phew. I'm very glad to hear you have a home to come back to. My father and I were viewing some footage - so harrowing. But we were also remarking how much better Emergency Planning is in general but how many parts of the world have nothing. Devastating to imagine the toll it takes.

    I have noticed my vision isn't as great; I finished chemo late October.

    Another weirdo thing...probably not treatment related but I will throw it out there. I am experiencing all this chapped and redness around my lips. It was first in one corner of the mouth and is now better there, but now on the bottom lip with the redness on the skin right under. I can't figure it out and am not licking my lips. I am putting Vaseline on constantly. Was wondering if this is Angular Cheilitis (I looked it up)...anyone else? I know it's a weird one

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  • moodyblues
    moodyblues Member Posts: 470
    edited September 2017

    SpecialK.  Glad to hear that you are home and well!

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  • moodyblues
    moodyblues Member Posts: 470
    edited September 2017

    I keep having the blood vessels in my eyes bursting, has anyone else had this occur? Twice it happened in the right and twice in the left eye.  Only in the white area.


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  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited September 2017

    I have had the eye thing once a couple months ago...I did read of a reason why, but can't recall what it was

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