Looking for Her2 Positive survivor stories
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I have been dx with ER/PR/ Hers-2. I had 2 Hers-results The 1st was pos during my needle biopsy and the 2nd. 2 wks later was negative
My oncologist researched this and feels I may still have microscopic cancer cells. I am being treated with 12 weekly chemo treratments.
Then I will continue with one treatment every 3 wks. I will also have 16 radiation. This will increase my chances by 10%
I am pertified about the treatments as I have fibromyalgia and already am in pain daily. I am also afraid of the naseau
Please share your positive experiences with me. One last question what do I wear for chemo?
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Hi Lindar. Your treatment sounds like what I had but it's hard to tell because you haven't completed your profile. Is the cancer hormone positive or negative? Do you know the staging? If it's early stage HER2 positive and hormone negative, you'll likely get 12 weekly infusions of Taxol with Herceptin, then continue receiving Herceptin every 3 weeks to complete a year. As chemo regimens go, the 12 weeks of Taxol is quite doable though you'll likely be hairless and tired by the end of it. The steroid they administer at the same time help (Decadron) Herceptin is immunotherapy, so a lot easier on the system. You'll find lots of discussions about the Taxol/Herceptin regimen on breastcancer.org. All the best.
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Almost forgot. Wear something comfortable that will allow the nurses to easily access your port or veins.
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I'm not sure if it's helpful or not but I was diagnosed at age 33 more than 15 years ago. Satge 2a. 1.5cm tumor and 1 positive node (23 removed). ER/PR+ and Her2+. Herceptin was not approved yet but I got it 'off label' for 18 months (after A/C and with Taxoere.
Unfortunately I was just diagnosed In feb with a single bone met in the rib (am now 48) so my story may not offer as much hope as you would like.... but I had 15 good years and honestly it's the Hormone positive side that can cause the recurrence years down the line.
And right now I still feel great, having started all of my treatments for this rib met. I am hopeful that my long term survival since original dx is a good factor (studies show this) ingetting this bone met into remission for many years to come.
Hope that helps - maybe.
Lauren
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Hi Evergreen9,
I am her2 triple positive and I have a question. Did you do hormone blocking therapy after you were finished with everything? I am on a hormone blocker and it is causing me alot of PMS type symptoms, crying spells, hot flashes 3-4 times a day, and I have to be on these blockers for 5 years. I dont know if I can handle living on the edge like this every day. I have talked to my Oncologist but he doesnt really understand being a man....
I went through all the treatments with such confidence and faith and this is really causing me alot of difficulty.
AngelsGal57
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angelsgal - I am not really hormone positive, but read Lauren H post above yours. You need to take the hormone blocker. Tell your doctor your problems and find out if there is another type you can take or if your system will adjust.
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Hi ladies!
Just wanted to check in here. I was diagnosed in December of 2014 at 37. At the time, I had a six month old and 1.5 year old child. I had ten(yes ten!) tumors in my left breast that covered a ten cm area. I was astounded and so worried that my regimen would not work.
I did TCHP, followed by a double mastectomy and then radiation. I also had a PCR!! I could not feel any tumors after the first chemo.
My hair has grown back, I feel great, and my children remember nothing. I did fat grafting in November and might do another round in the future.
We were about to try for a third child when I was diagnosed. I was devastated that breast cancer had interrupted my child bearing years. Now, three years later at 40, I am miraculously pregnant again. Big surprise!
I hope this gives some hope to other women going through this!
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raleighgirl- congratulations on your pregnancy. That's wonderful news. And it does give hope to a lot of women out there who are diagnosed during their childbearing years. Thank you for sharing
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Angels gal, so sorry to hear you are having such misery with your hormone blocker. My original diagnosis was similar to yours. I had a lumpectomy followed by radiation 17 years ago. Then, 6 years ago, in same breast I had cancer recur. You can read my diagnosis and treatment. Had i taken the hormone blocker as suggested by oncologist, perhaps my cancer would not have recurred. I would strongly encourage you to remain on a blocker, but you may need one from a different manufacturer. The lingering after effects of my treatments the second time around are really difficult and have changed my body drastically, not in a positive way. You do not want that cancer to come back! Wishing you the best.
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Happy for you, raleighgirl!
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Hi all...just chiming in to hopefully bring a smile to your face. You can see from my bio that just like many of you..I've been through a lot!! Her 2+ is scary and I heard all of the scary stories that are out there. But Today I am happy, healthy, have a full head of hair 😉, am almost 5 years out from diagnosis and am cancer free!!! I'm so thankful every day. Looking back I was so sick, depressed and fearful. With cancer you never can predict the future but keep moving forward; you can do it, Many blessings to you ❤️❤️
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Thanks for coming back to post Girlstrong. It gives me hope and confidence about the future.
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Thanks for posting girlstrong - that's such great news. Wishing you continued good health and happiness
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Girlstrong Thanks for coming by and for encouraging us!
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Raleighgirl Woot, woot....Congratulations on the pregnancy! Thanks for stopping in and sharing your survivor story and for offering us hope.
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girlstrong- thanks for sharing your positive story. It's always appreciated.
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Hi! Checking in to say that I was diagnosed August 2014 and completed all surgeries and treatments in April 2016! I've attended three (3) follow up appointments and so far, all is clear!!!!!
My next check is May, 2018. I struggled with HUGE anxiety, PTSD and fear of recurrence [have been identified as high risk for same]. Letting you know that, for me, I am JUST NOW starting to feel a little less afraid. My life is FINALLY starting to feel less gloomy. I am starting to feel as though I WILL see my children become adults and possibly even be a grandmother one day!!! That would be sweet.
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I am cheering for all of you! I always have been. We are all strangers here and yet.....the connection and support is MIND BLOWING! I definitely care and I am sincerely happy to read your posts!! Keep them coming!!! Some days....this site is a true lifeline, isn't it? For some parts of my experience.....you folks were the ONLY support I could count on!!!
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Perangusta. I agree, this site had helped me so much. Just to know I wasn't alone in this and that others were there to walk me through it. Thanks for stopping by and checking in with us.
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perangustas- I agree this side has been very helpful. Continue to enjoy those beautiful moments.
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Invasive Lobular Carcinoma, Nottingham Grade 2. The tumor is multifocal, the largest focus measuring 50.0mm in maximum dimension. Florid Lobular carcinoma in situ with necrosis. Positive for Angiolymphatic invasion. 10 malignant /20 lymph nodes removed. Estrogen receptor positive, progesterone receptor positive and Her2 positive. Just had a Right Modified Radical Mastectomy and a Left Simple Mastectomy with a sentinode biopsy on two nodes which were negative. Saw oncologist today and I am staged at 3C and she wants to begin treatment on June 4 of 6 cycles of Chemo Carboplatin, Taxotere, with anti Her2 meds Perjeta , and Herceptin followed out for a year. After 6 cycles of chemo then followed up by 61/2 weeks of radiation and a hormone pill for 5 years.
I am HORRIFIED to say the least. I would like to hear some stories of people who took these drugs and their experiences... NEED ENCOURAGEMENT0 -
Setfree52- on January 29th I had a bilateral mastectomy with 1/18 nodes. I was prescribed 6 rounds of TCHP., Rads after 8 week interval from chemo and then herceptin and perjeta for a year. Friday a week ago I completed Round 4 of tchp. I have tolerated the chemo very well. The only work I have missed was post surgery and chemo day. I lost my hair Within three to four weeks. After round 2 I developed a metallic taste for food and liquids. After around 3 I developed one mouth sore and chemo burn on both hands and arms. The chemo burn look like a bad sunburn. It did not itch and it wasn't painful. I dealt with it by wearing long sleeve shirts and using Eucerin red relief. It went away after a few days. After around 4 I felt a disconnect from my brain and body. It's difficult to explain but synchronizing things took a little longer. Some women experience severe diarrhea or constipation. I never had any real stomach issues except for 1/2 day after round 2. Each person is different and experience side effects differently. Chemo is not fun but it is doable. Fortunately I've been able to work, travel, run and exercise almost daily and spend quality time with my friends, dogs and family. Fatigue can be an issue but for most of us manageable. There are those who do experienced severe side effects but that doesn't mean you are going to. The people on these sites are wonderful. When I was going through any difficult time I would seek their advice and support. There are also plenty of positive stories to share. But if you need to vent we're all here for you. There are so many individuals on this site who are more knowledgeable about chemo, radiation and side effects. They will generously share their knowledge with you. Hang in there. It is scary. But remember chemo is doable
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SetFree. I highly encourage you to join the triple positive thread. You WILL find encouragement there. Support. Tips. Love and Light.
As Jo said above, this is doable. You can do this and it helps with support from those who are going through it or have already gone through it. Hugs to you.
(edited to add link below)
https://community.breastcancer.org/forum/80/topics/764183?page=1210#idx_36279
Melanie
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Hi all,
just back from my 13 year annual Onc visit and I am blessedly well. This after such a dismal prognosis, stage IIIC, axillary and sentinel nodes totally replaced by tumor and extra encapsulated 12 positive nodes, no clear margins, her 2 pos. etc, etc, blah , blah blah.....
Lost my mom, her mom, and her only sister to this beast...
and scared sh**less looking at the sad , pitying faces of so many looking back at me... back then
but here I am today ; happy, healthy, having belly laughs every day. retired to a tropical paradise and living life LARGE with daily gratitude and the love of my life!
There is so much hope now, many of us are out there living our lives way beyond this.
Wishing you all that this sucky experience will be a distant and fading memory.
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lkc - CONGRATULATIONS on 13 years! You ALWAYS have given me so much hope and
encouragement! I cannot thank you enough for staying on these boards to give newbies that
same encouragement!
Keep living large!
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lkc - whenever I'm going down that scary “what if" path I think of you - and then think - what if I can get the same wonderful outcome as you?! Thanks for showing the way
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ikc- it's always great hearing that you're doing well. Continue to live large in your Tropical Paradise.
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lkc, Thank you for sharing, it means the world to us to hear success stories!
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ikc, so happy for you. congratulations are in order.
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I had a small HER2 positive tumor, but it was triple positive and highly aggressive. Today marks 5 years since diagnosis, and I am doing fine. My only post-surgery treatment has been tamoxifen, which I will finish taking this summer.
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