Looking for Her2 Positive survivor stories
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with my Ac i had to stop my job. I had low blood cell issues and end up in emergency for fever and took antibiotics to fight something which foctitlrs fod not found what. I am starting 12 weekly taxol and I d not know if I will be able to work which implies meeting people and haveconcentration.
Anyone worked efficiently while on tsxol after a rough ac
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lovemyboyssand- I am on chimo now. Ac was so harsh that I had no even strenyabout recurrence. But when things get ohyomanagebale my fear about outcome and recurrence take over. I have a teenage son and what wanted support him love him enjoy his success. I thought I was very strong and I could take enything. But now when his friends parents give lift to their kids and I cannot and my husband has limited energy and patience, I feel a failure. But I am fighting for st least some severally healthy years with him. The recurrence scares me because even whith Herceptin no doctor can know how much long ca n be guaranteed. I âme Sad that This happened so untimely but it is what i
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margun - I don't mean to be intrusive. What is your history? Have you had any surgeries? What is your hormone status? If you've had surgery what is your stage? There are many women on this thread who have far more expertise than I do. I continue to learn from them. The more information regarding your pathology the better support and help you can receive. Best of luck to you. This is an uncertain and tough Journey but it is easier with support.
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It's now 14 years !!!!
here's my post from May 2014
I am writing this with enormous gratitude that I have reached this 9 Year BC anniversary. I've recently returned from my 6 mos check up, and finally had the nerve to ask my sweet Onc if he thought I would make it back then. He smiled and told me if anyone would, he thought it would be me. You see back then it was a recent development that an additional classification of C was added to the Stage 3 cases.There was only Stage III A. and B then. This meant for me that had I been diagnosed a few years earlier I would of been classified a stage 4 and would not have been a candidate for surgery, or the treatment I received.( My onc was part of the team at MD Anderson that pushed for this additional classification to provide an option of CURE for cases like myself) Anyway, to throw another ratchet in, I was also HER2 positive and when he told me that he looked really disturbed. I was actually happy since I knew I would probably get the newly approved Herceptin and just maybe it would work for me. He told me he had seen HER2 cases(BEFORE Herceptin) to be the worst BC prognosis and did not have any long term data for a case like mine. However, my dear Onc, held out his hand to me and said 'We're going for the Cure for you" I remember telling him then to throw everything he could at me. You see, I had just lost my Mom to Met BC and he was also her Onc. and we all had walked the long road of metastatic dx together.
That was 9 years ago and I am well. Living Large! I don't let a day pass without thanking God for my health and blessings I have in this life. I am blessed to share my life with a wonderful man who stood by me, while some members of my family ran for the hills. I have 2 beautiful girls and healthy happy grandchildren and a new baby boy coming in August! I am blessed to have my faith , and have truly long time dear friends. Upon my return home I went back to my career in research, but it would be Breast Cancer Research this time. How cool is that to be able to do that?! So many new treatments and lots of good outcomes.
Anyway. I am posting this to say hi to my old timer sisters on this board and also to let the newer sisters, know my story. There are lots of us out there.
I wish all a gentle road on a journey no one wants to go on.
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lkc,
Thank you for taking the time to come and encourage those of us who are on the road behind you! I didn't participate on this forum during treatment, but wow, did I find hope here! I noticed, lkc, that you were on an old Nerlynx thread and as part of your job, were involved in research, if I understood correctly? I am treated at MD Anderson also, and while I'm ER- and therefore not a prime candidate for Nerlynx, my MO will give it to me. He's actually running a trial right now on it, and while it was originally open to ER-, they just changed it to ER+ only. As a fellow ER-, higher staged gal with some knowledge of the drug at a deeper level than I do, would you have any insights? I realize the question is vague, but any info you could provide would be appreciated. By the way, the Big D issue is not of deep concern to me--I tend to run the other way, if you know what I mean. Also, my MO says they gradually build you up on it and have found fewer problems as a result.
Congrats on 14 years! The Lord has blessed you richly and I rejoice with you!
Beesy
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Ike- I loved reading your story. My doctor told me we are going for the cure. My tumor was completely gone with Chemo and the surgery of surrounding area and lymph nodes was clean.
I had TCHP and worked through the whole thing, but I could not do Nerlynx, I was vomiting and diarrhea even with the anti nausea and Imodium I ended up in the hospital ER very dehydrated. Maybe it would have been better gradually building up and not starting with the full dosage.
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misty eyes- did you had lumpectomy or mastectomy. My surgeon suggesting lumpectomy while I was thinking that mastectomy is more safe solution even though with more recovery time( do you know the recovery time time for mastectomy and lumpectomy?) . Explain me please why you chose what you chose perhaps helping with my decision. Thank
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- Since at my stage and grade there was no difference in reoccurance between lumpectomy and mastectomy, I chose lumpectomy. I will be 5 yrs with no reoccurance this summer. Love, Jean
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zjrisenthal- thanks for your reply. I am her2positive grade 3 as well. This is is tumor that apparently likes to spread and that is why I am going though harsh chimo 4 Ac and 12 taxol. First, which one was easier to handle? Second, congrats to be free for 5 year without reopening and I wish you many many more years of healthy life. I do not know your age or if you have young kids but I have a teenage son and I want so much to see him to grow into adulthood and if I am lucky to see his kids. I want also do not go to a radical mastectomy if that will not make a difference. I have s.till torn between lumpectomy And mastectomy but your explanation is pulling meto lumpectomy
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As far as AC and Taxol, neither was easier, just different. AC knocked me out physically. Taxol had more effects on my eating. Metallic taste mostly. Also longer with 12 weekly infusions and some lingering neuropathy in the soles of my feet. Just numbness, no pain. Everyone reacts differently. Most important is to keep your chemo doctor apprised of all side effects as most can be helped. Praying your treatment goes well and you clear. BTW, I am 76 yrs young! Love, Jean
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Margun,
I was thinking at first I would have to have a mastectomy because the tumor was large and I would be disfigured anyway. I had chemo first to shrink the tumor and it was completely gone after chemo. The surgeon did take quite a lot of surround tissue and some lymph nodes to make sure there wasn't signs of cancer. I don't know the recovery time for mastectomy, my surgery was not bad at all.
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Margun, I was diagnosed with ductal carcinoma in situ when I was 55 years old and I underwent a lumpectomy and radiation and remained cancer free until 2012 with recurrence to the same breast which required chemo, surgery and then radiation. I also take letrozole and have been on it for 6 years. I do believe that had I taken tamoxifin after my original diagnosis, that I might have avoided the much more grueling, life-altering treatments required. I wish you well in your pathway to recover your health. I am happy to say that I am seven and a half years out from my second cancer diagnosis and I am very grateful to still be around and to be as healthy as I am.
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My cancer was her2+, grade 3 also. I also had 12 rounds of taxol and 4 of AC. For me, the AC was harder---the first time put me in the hospital. After that, I got Neupogen shots and they helped. Taxol made me tired but that was the worst of it. I had chemo and was NED by the time I had surgery. I have had good checkups in the five years since, and I'm very thankful to the Lord for His mercies every day.
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goldengirl5, thanks very much for sharing your experience!!!
If you do not mind, could you share your profile like diagnostics, treatment plan you had? especially did you have lymph node involvement (before chemo)? your targeted therapy was herceptin or herceptin and perjeta? did you take additional adjuvant treatment after one year of targeted therapy? How large was the tumor? Sorry for asking so many questions, thank you so much again.
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I am encouraged to see Her2positive survival stories. Once the treatment is over how often a check up is conducted and how. Her2positive is systemic cancer and I do not think a mammogram that checks the breast only will be sufficient?
On another forum I saw some people removed their ovaries for precautionary measures. There is perhaps some connection between these cancers
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Ics- thanks for the encouraging post. I am her2positive and my surgeon is recommending lumpectomy. I read here some stories of recurrence after lumpectomy and it makes me rethink. Did you have lumpectomy or mastectomy? And also how the check ups are done once treatment is over? I heard a mammogram is done but that is for breast how they monitor the other parts of body?thank
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Ovary removal happens only with er+ and/or pr+ cancers.
I, too, wonder about checkups. I had unilateral mastectomy. Some have whole-body scans, and I am concerned about reoccurrence not just in the breast area on either side, even though my risk is low.
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MCBaker---I also had a UMX. I get a mammogram (digital) once a year on the native side along with an actual exam from my BS. I also get a breast exam from my gyn and from my MO. I have these 3 spread out so that I see one of them every 4 months. This was my BS's request so that if a lump came up we'd potentially find it faster. Then every other year my BS gives me an MRI to check the native breast for lumps and to check the integrity of the implant for leaks as well as any spots around it or on my incision line. I feel very comforted with this schedule.
By the way, all of my doctors have said they only do whole body scans if I present with some sort of pain or other issue.
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Thank you. Pain from neuropathy and arthritic pain can really confuse that issue. I may ask, maybe my MO will have something to say about that, since I am scheduled to see him next. Maybe ask PCP, since I have appt with her soon, too.
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Hi
Today is second anniversary of the month of diagnosis and mastectomy. I had chemo and Herceptin. Now on tamoxifen. I finally am starting to feel human again. When I got diagnosed I thought it was the end of the world, and now I can't believe that I am still standing. God is kind.
Prayers to all of you, my sisters in this battle.
It will pass. It will pass.
Much love
Saadia
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Hi everyone,
I'm 6 years and a few months cancer free. Her2+, stage 1A, no lymph node involvement. I had TCH and a bilateral.
I've been active locally in support groups and I can say the HER2 women I know are having amazing responses to Herceptin (and Perjeta if they are getting it)! I know several stage 3C initially who are NED after chemo. Keep the faith!!
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Dear Matchless,
what a bold and brave women you are to move to Boston. You have a new lease on life and a great story to tell. Keep going.
You have encouraged me. I am on my first year of no treatment after getting an all clear no more infusions of Kadcyla in January. Get my next PET scan the end of this month and see oncologist for 6 month check up and PET results.
Angelsgal57
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Angelsgal- I am 4 months out with no treatment. I see my oncologist every three months. I was very lucky with my new PCP because he has a Cardiology Certification. He is very familiar with herceptin side effects. Fortunately I've had no side effects. Aren't you still taking medications for hormone positive? For a whole year it was oncologists, radiation, chemo, labs, scans and surgery. Then one day, nothing. Initially, I found it to be very unsettling. Now I'm used to it. I'm so happy you're doing well.
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I tried to find a sport bra Thatis attached from the front. I found only one kind stopping at 1X when I need 3,. Do you know places where I can more selection. After surgery and breast reduction I will be probab'y Cup B. Do you I really need a bra during healing oeriod to be comfortable or without bra will be even more comfortable? After healing I can simply buy a regular Bra. Please advise
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Hi all,
Just 2.5 months away from 9 years post-diagnosis. Doing well.
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thank you Sydnaybased for taking the time and sending this encouraging post for us who are still under chemo. I am her2 positive too and after reading oninternet on it I was down until I read the posts of courages ladies that survived and going on with their life’s. I finished Ac and soon I will finish Taxol, then surgery, radota de based in pathology report herceptin and hormon pills for 5 or. 19 years. Did you have similar treatment? What kind of hormon pills you had? What are those pills side effect I must know and how long they were prescribed to you? Thanks
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Checking in. I am coming up on 5 years since diagnosis! I’ll have another mammogram and whole breast ultrasound in about a month. Good luck to all of us. :
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5 yrs from diagnoses too ! Jean Rosenthal
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zjrosenthal- thanks for your post to encourage us and congrats. I am triple positive just finished taxol ( 10 days ago). Still have some occasional nose bleeds and I hope they will end soon. I do not know why they happen given that my platelets are ok. I will have surgery soon. Then radiation, herceptin and hormonal therapy. How long you had to take hormon pills and any side effects? Thank
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I take tamoxifen. Started in Feb. 2015. Will be taking it for 10 years. Minimal side effects such as occasional hot flashes and I cry more easily. (Guess my heart has gotten softer.) Certainly better than a reocurance. Love, Jean
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