Need Help Finding Her2 positive, hormone receptor neg survivors

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  • Fitz33
    Fitz33 Member Posts: 243
    edited December 2011

    ALK, I had low WB cell counts too and had to wait until they came back up along with the platelet count which was very low.  They came back but the WB cells have always been a tiny bit low since but I finished rads in August and started A & Herceptin and feel great.  Don't worry, it all works out and you'll be thankful for your body letting the docs know when you're ready to continue. 

     I just had my first 6th mo post-surgery mammo and it came out perfect.  I've been offered an MRI since it's been over a year since I've had one but I'm not sure if I should have one now or see if I can push it off for 3-6 months.  Does anyone have any feeling about this?  I don't want to blow my chance at an MRI but since the mammo was clean maybe now is not the best time for MRI?  I'm not sure what to do.  Any thoughts would be appreciated.

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  • ALK
    ALK Member Posts: 46
    edited December 2011

    Fitz33-   Thanks for the boost in my emotions.  I really needed that.  Congratulations in finishing your Rads.  Did you have any side effects from that?  I've booked a cruise for the family last March to go on this coming March.  I look forward to it, but concerned about whether I will be fit to go.  As you can tell, I've turned into a worry wart.  

    As for the MRI, would it be on your mind all of the time if you didn't get it?  Personally, I would get it. However, the first mammo didn't show my tumor. Good luck with that decision.

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  • Fitz33
    Fitz33 Member Posts: 243
    edited December 2011

    ALK, I responded to your post but for some reason I see that my response never posted-??  Anyway, to try to respond again, I didn't think I had side effects from the rads but later found out I did and do.  They weren't anything that kept me from taking a trip about 2 or 3 weeks after I completed rads and had a great time.  Then another month later I went on a 3-wk trip and that was a lot of fun as well.  I had some LE problems but that didn't stop me or let me be bothered.  I wouldn't worry about taking a cruise in March if I were you.  So many people on cruises take naps that if you get tired no one will think anything of your taking one too.  You may be surprised to find out how much energy you have for vacation after you start on it. 

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  • Girlstrong
    Girlstrong Member Posts: 438
    edited February 2014

    I think this is an interesting topic, looks like it's been a couple of years since a posting.....let's see if we can get some activity :) 

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  • annika12
    annika12 Member Posts: 433
    edited February 2014

    hi girlstrong , just finished chemo and surgery In the middle of radiation but by path report came back complete response , no cancer found after neoadjuvant chemo :) Herceptin every three weeks til September 

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  • Girlstrong
    Girlstrong Member Posts: 438
    edited February 2014

    Annika12; great news!!  I am a couple of months behind you. I just finished chemo and surgery and looks like rads in March. How are you tolerating rads and what areas are you getting radiated? 

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  • ALK
    ALK Member Posts: 46
    edited February 2014

    Annika 12 and Girlstrong,

    I just wanted to give the both of you some hope.  I finished up my treatments in August of 2012. I have had many follow up appointments and all is well.  

    I had decided not to have reconstruction.  Part of the reason was because I was concerned about the possibility of cancer coming back in my other breast. The other reason was that my husband said that it wasn't my breasts that defined me. What a terrific guy.

    As for side effects of RADs, I have had issues with my salivary glands not producing.  I just have a water bottle with me at all times.  Other than that, no noticeable effects.

    Stay strong.

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  • DizzyBird
    DizzyBird Member Posts: 9
    edited February 2014


    Hi all, I was diagnosed last May with 35mm tumor stage 2B with 1 lymph node out of 23 affected - HER2+, ER+, PR-.  I had a left mx last summer with no reconstruction (like ALK, I'm worried about the cancer returning in my other breast) and just finished six months of chemo (3 mos on FEC and 3 mos on Taxol).  I'm due to start radiation treatment at the end of March, and am on Herceptin until November.  I'm worried about the rads as it's on my left breast, but I am going to learn a breathing technique so that should reduce any risk to my heart - thankfully it is just on the breast site and not around the lymph nodes.  Be strong everyone!

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  • Girlstrong
    Girlstrong Member Posts: 438
    edited February 2014

    anyone out there who did neoadjuvant chemo and didn't get a pathological complete response but is still doing OK? 

    Dizzy bird: thanks for your info and let me know how rads goes . I think I am starting sometime in March too

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  • ALK
    ALK Member Posts: 46
    edited February 2014

    DizzyBird,

    Don't worry about the RADs. Technology has come a long way. They have everything down to an exact science.  I had a rt. mx and haven't had any issues to the heart.  My ticker is still going strong.

    Continue to post updates everyone on this site.  I don't get on here very often, but when you post I get notified. Would love to be your positive partner as you go through the next step.

    God Bless you all:)

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  • Jan72014
    Jan72014 Member Posts: 7
    edited February 2014

    Hi, I am 61, live in Australia. On 7th Jan 14 I was diagnosed with 2.2cm IDC plus extensive DCIS in my left breast,had l mastectomy 16thJan, Grade 3 HER2+++, ER-,PR-, node negative. Had an infection in the drain wound, due to start 3-weekly TCH on 21st Feb. I am in a training course, and have to go to Melbourne, Sydney and NZ for long weekends regularly. The first is on 22nd Feb, so I cannot go. The second is on 28th to30th March, and my chemo/herceptin treatment is on 14th March. I wondered how other people feel by day14, and if you think it is possible I may be up to flying a 4hr flight on day 12 and attending a very interesting 3 day class with 30 people or not or not.

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  • ALK
    ALK Member Posts: 46
    edited February 2014

    Jan72014,

    Welcome to our family.  I can honestly say, though, that I wish you weren't part of this family.  I know that you are going through much apprehension right now; especially since you haven't started treatments yet.  Be rest assured that HER2 has come along way in treatment. Herceptin seems to be a drug that has changed this type of cancer.  

    Now as for how  you are going to feel; it is so dependent on the person receiving the treatments.  Some manage this quite well. My suggestion would be that you decide whether or not you want to try to plan it.  My drawback would be that your immunities will be down, and being in such close proximately to others that may have a cold or are sick would have a negative impact on your health.  

    Talk to your doctor and see what they think.  I thought I was going to continue to teach school. However, after my first treatment, I decided that I needed to take the year off and concentrate on making me healthy again.

    If you have any other questions or concerns, please send me a message.  I would love to try to help you through this process. Internet is great. I'm from Iowa, USA, and yet we can write and support each other.  Best of luck.  

    Better go ask I am going to be speaking this morning at a Valentine's Luncheon and Style Show to raise money for our Breast Cancer Dragon Boat team, Life Is Bliss.

    Take care,

    Arlyce

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  • lkc
    lkc Member Posts: 1,203
    edited February 2014

    Oh My I guess I win the cake! I  was dxed with ER/PR negative, and Her pos IDC with  12 positive nodes out of 14,  and both my axillary and sentinel nodes were totally replaced by tumor  AND after my final surgery I still had a small area of affected margins. Blh.. blah .. blah. I was dumbfounded at I am a nurse and was just getting over the loss of my mom to BC.. anyway.

    Now the good news! I am coming up on 9 years WELL in May. Doing the happy dance everyday.

    I try to come here as often as I can to give you all support.

    God Bless!

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  • annika12
    annika12 Member Posts: 433
    edited February 2014

    girlstrong - so far so good !! I'm half way done with rads. 16 out of 33. No redness , itchy ness or swelling YET. I'm not using anything. I have twice used the cream they gave me cuz I was dry....but so is the rest of my winter body :/ Its really a breeze so far com paired to the last 7 months. I'm back to playing soccer :D life is good for now !!

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  • annika12
    annika12 Member Posts: 433
    edited February 2014

    ikc- yeah !! I love hearing good stories like yours :) thank you !!!

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  • annika12
    annika12 Member Posts: 433
    edited February 2014

    girlstrong - just noticed you are in Michigan , so am I :) 

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  • Girlstrong
    Girlstrong Member Posts: 438
    edited February 2014

    hi everyone, thanks do much for your posts. This disease is as much of a mental as physical thing and so I love hearing your positive words. Thank you :) my MO is not the best communicator and never really gives words of encouragement; although I trust her and her knowledge, her bedside manner leaves room for improvement and so that's all the more reason I am thankful for all of you.   Annika12; yes I am in Michigan and getting through this incredible winter we're all having. I'm also busy recovering from BMX and rubbing my head in hopes it helps my hair to grow. LOL!! 

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