TRIPLE POSITIVE GROUP

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

    HapB, when they say stage 1 is nothing to worry about they just are ignorant and did not care to read about it because it does not affect them personally. Do not bbe afraid to ask for help someone who will not wave you away, maybe they do not know how much you need help right now. This is ok to feel this way, I myself have crises every day, nothing I can do about it, I'd rather not to, I'd rather stressed myself at work as I used to and drink my wine but the life has changed and people around you shall understand that this is important to help you to feel better, this is their only job right now. It does not take that much of an effort, it takes a little but it will be enough for you because it will make you feel better, Hugs Cherry

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  • shelabela
    shelabela Member Posts: 584
    edited September 2017

    Radiation simulation today. I have a few questions to ask them first. Wish me luck

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

    good luck, shelabela!!!

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

    Best wishes Shelabela!

    Remember, you are in charge not them.

    Vicky

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

    HapB, I am very sorry about your loneliness. I am not working now, I do some things from home but I am not in the office. I have not lost all my hair yet but it started shedding by now and I do not like it at all, I did not think it was going to be such a big deal, but it is.

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  • toughcookie_21
    toughcookie_21 Member Posts: 185
    edited September 2017

    Good luck Shelabela

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  • kae_md99
    kae_md99 Member Posts: 621
    edited September 2017

    goodluck shel!!! elaine therese, i am not very good at reading studies. does the study you posted means that even if pcr is not acheived there is still a high chance of no recurrence? i am not pcr, residual cells remain in my tumor and sometimes i think about this..

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  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited September 2017

    how did it go, Shelabela

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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited September 2017

    shelabela good luck. I found chemo physically demanding, but radiation was mentally exhausting. I hated radiation wayyyy more than chemo.i hope it's the opposite for you.

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  • shelabela
    shelabela Member Posts: 584
    edited September 2017

    I got through simulation! I do not think this is going to be fun. BUT I was approved for Proton Radiation. YAY! Downside to this is that the treatments are 40 minutes or longer. ugh.


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  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited September 2017

    such a positive group!

    I am also triple +. I got my port placed yesterday and due to the primary tumor size and the her2 I have to start with 6 months of chemo before mastectomy. I have all my scans for clinical staging on Tuesday. Then back to MO then chemo starts after. He wants the clinical staging to decide if he needs to add anything to what he's already planning.

    But from what I'm told being this amazingly positive is a good thing. We are very responsive to treatment! I'll try take that along with the insta yuck thrown at me

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

    Is there any difference in radiation? Now I have to read about proton radiation.

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

    Mojojennijo, welcome, I am sorry you have to join us but these boards are amazing in terms of support and advice. I do not know what I would have done without them. Cherry

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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited September 2017

    So my MO said, on Nerlyx, "No absolutely not. That is a terrible drug and I cannot believe the FDA approved it!" "You have no idea what will happen to yoi when you are 70 and the side effects are horrific. No one prescribes that here!"

    So that's that....no nerlynx for me.

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

    Tresjolie, two of the oncologists I met told me the same thing, that the SE were not worth it and the clinic I am treated at conducted their own smaller trial few years back.

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  • Jumpship
    Jumpship Member Posts: 305
    edited March 2019

    Tres- do you have any more data or examples you can share about Neralynx? I want to understand it more. Thanks.


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  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited September 2017

    Wow...thanks for the Nerlynx update, ladies. If all these oncologists are saying this, then it's important to heed that. I will still ask my oncologist about it, but guessing she'll say the same.

    damn. Wouldn't it be nice if there were another 'biggie' development!!

    On another note, a little random poll...how do you all feel as the Terry Fox runs and October comes round? While I appreciate it for the funds raised, I don't want 10 people coming to me asking to put my names on their bibs, etc. I'm not interested in joining the fanfare. Yes, perhaps I am bah humbug, but it puts me into a place I don't like. I guess you could say it's my version of PTSD. Others?


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

    I don't do "Pinktober." I just don't. But, my daughter likes to buy pink things, and I don't interfere. She wants to show her support, and that's fine.

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

    Before my diagnosis I never questioned the pink October, I used to buy a pin for my husband and none for myself. I felt great respect and sadness for women who had to deal with that but I basically lived my life and could not dive into it. The attitude was probably close to: it is awful, poor those ladies, but does it mean that I should only think about this and stop living. This I believe how the majority of people without cancer think, even if they get paranoid from time to time, they still think that cancer will not happen to them, which is true, it won't and they keep feeling good about themselves. Now when I got this diagnosis I can see the hypocrisy and tell myself that I will just wait this month out. It feels like the majority of people do not understand and what they are doing is just done so they could feel better about themselves. Therefore to me it looks like they are pretending. My family will probably buy the pins, because this year it will mean something else to them. But I will just mentioned that they will not be doing it for me but for themselves. Cherry

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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited September 2017

    ladies...i have a friend who is getting ready to do herceptin only. Her MO is giving her a hard time about doing it over 90 minutes instead of 30. Anyone know of any studies or articles that document that the slower infusion lessens side effects?

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  • Saadia1
    Saadia1 Member Posts: 10
    edited September 2017

    Hi everyone.

    I was diagnosed in may this year. IDC 1.5 cm grade 3 ER/PR/her2 positive. Had a Bilateral Masectomy end May. Started on 12 week Taxol / herceptin to be followed by 1 year of herceptin every 3 weeks. Just finished cycle 8 of taxol. Once that is done, I am expected to go on Tamoxifen. I am quite worried about side affects etc. I really don't want to live a life that is debilitating.

    I have been reading this thread and many other threads and they have really really helped me to calm down. I know this has been said before but I have to repeat it. The group of women i have seen here are amazing and very inspiring. You all give me hope. I am addicted to this community board now.

    I was wondering if anyone in this group who is triple positive had a prosignia Test done and what were the results. Mine came out high risk (24% risk of recurrance). My MO says that with this treatment I will bring the risk down to 10%. I know that there are a number of women on this forum who have had no recurrence for quite a while. That's very encouraging but I still get very panicky. Still trying to figure how to deal with it.

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  • bareclaws
    bareclaws Member Posts: 345
    edited September 2017

    Tresjoli2, I have Herceptin even slower than that. One third of a dose every week, over 60 minutes, instead of dose dense every three weeks. My side effects are pretty minimal. The MO's and hematologist thought that initial loading dose of H gave me acute ITP (platelet disorder), so being ultra-cautious now just so I can get through it. But it could have been the Perjeta-no one really knows for sure.

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

    tres - I don't think there is any documented trial data that slower infusion of Herceptin offers fewer side effects, the evidence is anecdotal - but there is enough of it that it can't be discounted. The dosing instructions from the manufacturer, Genentech, indicate that it can be infused from a minimum of 30 minutes to 90 minutes. Extending the infusion time to 90 minutes is not outside the instructions, but within in, so they shouldn't be giving her a hard time. I suspect they just want to get her in and out quickly. When I received Herceptin only and was done with chemo, I usually went late in the day when others had been and gone from the infusion room and things were not as busy. I needed no special permission to infuse more slowly, I just asked for it, and encountered no resistance.

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

    Saadia1,

    Yes, this forum has helped me so much!

    Sorry you find yourself here.

    Happy you will find help and support here.

    Try not to worry about your side effects. However, I urge you to document every change you might experience so that your MO can make changes if needed.

    I had 3 manufacturer changes to Arimidex. Third one is a charm and I can hardly tell I take it.

    Vicky




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

    Hi Saadia1, welcome to this thread, so sorry you had to join us but as you have mentioned one gets addicted to this board because here you meet people who are in the same situation. We have the same diagnosis, I also have 1,5 cm IDC that was situated very high in outer quadrant, Grade 3, Ki67 50% and I have exactly the same treatment, my 4th Taxol and 2nd Herceptin will be Monday next week. I was diagnosed in June after my mammogram and US in January were clear. I live in Europe and where I live they do not conduct any testing because according to my clinic there is no reliable testing for Her2+. I get panicky every day especially when I think about the children. This is an unbearable situation we find ourselves in and everybody here understands your fears and sadness. Cherry

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  • kae_md99
    kae_md99 Member Posts: 621
    edited September 2017

    coachvicky,

    what is your brandof arimidex?

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

    SpecialK, how is it going for you in FL, I read "So, what's for dinner?" thread and saw you posted there that you are expecting a bad storm there. I hope it will not be severe, causing no damage. I am also thinking about joining this thread, I love cooking and will try this kale salad with orange dressing. I just have not seen any newbies on this thread so far, maybe there is another thread about food for those who are in treatment.

    In Europe Herceptin is given as a shot, now I only had one but it takes the nurse ten minutes to give this shot. It must be really dense dose. I just wonder what is the difference between these two substances that the subcutaneous can be given so quickly and if it could cause more SE.

    Cherry

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  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited September 2017

    I guess I don't have the same feeling about people pretending, Cherry. I think that before something hits us, we live in our own world as it is. I'm not a race car driver, so I don't understand that world. And then, when it becomes your world, you learn so much about it and walk in those shoes.

    Likewise with breast cancer (or any cancer), people can't possibly know what it's like until it hits us (I couldn't have personally known). Also, you're quite right; people don't really want to think of this in general; from the time we are born, we naturally stay away from discomfort.

    In my opinion, when people give or wear the pin, they more often than not DO truly care. There are many empathetic people out there. So, I do see the best in the support out there, and we're at least fortunate that bc is very high profile.

    I just feel very different and isolated and when I'm called out by friends during this season of fundraising, it seems to set me back psychologically...like I want to distance myself from this hot oven burner.

    That's just my own feelings and I don't question yours! Just talking it out. I know where you're at and I am many days in your emotional space.

    peace

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

    PoseyGirl, I probably put it wrong about pretending, I am not a native speaker so I probably should watch how I express myself. I meant more how I perceive their engagement because they could not possibly know. Otherwise I will second your every word about our natural avoidance of discomfort. We used to be those people, we know what the difference is. No, I am not looking forward to October and I remember what shelabela told me in the beginning that I will find out who my true friends are. Now I have chosen to tell a very few people but those I thought will understand both let me down. And I mean the expectations were not that high, no one expected any help since both do not live here. I constantly asking myself how would I behave if any of my best friends were diagnosed, would I disappoint them in the same way or if it is just no other way and no healthy person can truly understand a sick one. My manager who I have been working with for several years in the same group and who was appointed my manager this year, he has managed to stay in contact with me and both be supportive and encouraging. So far I did not feel disappointed at him. On the other hand, maybe I expect too much from people, this is not their fault that I got sick. Cherry


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  • PauletteK
    PauletteK Member Posts: 2,205
    edited September 2017

    Cherry - I know how you feel about Pink October, i always support Pink because I lost my sister to BC 17 years ago. Even though know I will be a good candidate for this sickness I still didn't prepare myself well. BC got me and didn't find my lump myself. People won't understand what's like to have cancer, tbh I didn't know exactly how my sister felt until I got it myself. I knew she was in pains and I gave herthe auppprts I can, but the truly painful experience you need to go though yourself to understand

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