HER2 Positive-anyone 10 years out?
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HER2+ Ladies
I finished Herceptin yesterday and am so glad to be on the next part of my journey. My husband says "you're not a survivor you're a warrior" so I plan on being a warrior for others. I found so much support and wisdom on these boards. I will continue to offer my support to others.
Looking forward to an amazing fall...treatment free!
Have a blessed day0 -
When I first met with my oncologist, he told me "you will live to a ripe old age", At 59, I already felt I was at a ripe old age
but was very glad to hear him say that with such conviction. I'm almost finished with chemo and after researching and learning more about BC, I know that even with a good prognosis, re-occurence can happen to anyone, especially for us with aggressive tumors, so am realistic about the "ripe old age comment" . However, I am optimistic about my chances of living for years to come. My onc also said I was lucky to be ER+ as the hormonal treatments available really were effective and would go a long way to keeping me alive.On a side note...anyone on herceptin should watch the 2008 Lifetime movie called "Living Proof" with Harry Conick Jr. It's the story of Dr. Dennis Slamon who developed the drug and his difficulty in bringing it to approval and wide spread use. As with most tv movies, it's a little cheesy at moments but gives real insight into how the drug came about and the untold number of women it has helped. It's not on Netflex but my teenage son was able to download it for me....I think from a website called utorrent. After seeing it, it gave me great respect and gratitude for this drug in my arsenal that I consider liquid gold.
Annie
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Annie I didn't see the movie but read the book:
Her-2: the making of herceptin, a revolutionary treatment for breast cancerBook by Robert BazellI was in shock when I read about the outside lead oncologist who was leading the trail and how she broke the double blind study to save this woman's life… OMG it was my oncologist! I was still doing hereceptin at the time. I had no idea.BTW August 31st will make 3 years since the start of treatment for me! You'll be posting the same before you know it.0 -
lago,
That's so cool about your oncologist.....you are in such great hands! I look forward to being down the road and looking back - and always with gratitude for all the women who went before and allowed the new drugs to be tried on them. They are my heros....
Annie
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Was having one of those mornings --
Anyway, made a last minute decision to get a pedicure at my local beauty school. Had my LE sleeve on and a student (prob about age 42-45) stopped and asked if I was a BC survivor.
She then told me she just had her 10 year cancerversary, Stage 3 Her 2 Positive. She was on the clinical trial for Herceptin.
She said she kept waiting to go back to school because she thought she might die. But once 10 years hit, she decided it was time to go back! SHE SURE MADE MY DAY!!!! Now I hope I am making yours!
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Denise-G - That is awesome!!! If you see her again, please give her a hug for being part of that clinical trial!!
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Denise-g,
That's great to hear because I was in a clinical trial as well..Thanks for posting0 -
JulieLynn and Sherry67 - thanks for posting. I feel like I have to go back and see her and give more thanks from us all!!
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Awesome
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I read and reread and reread and reread Denise's post because every time I read it, I felt better. Thanks!
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Oh my!!! How nice to hear it. If you see her again, please send her our thanks for participating in the trial. Her assistance is making a world of difference for us Stage III Her2 positive folks.
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Hi ladies! Just checking in to say hi and let you guys know that there is always hope.
This year marks the beginning of my 12th year!
I didn't have herceptin either, just surgery and chemo then tamoxifen.
Stay strong ladies!
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LisaH,
What a wounderful thing to hear thank you so much for posting...0 -
LisaH -- Congratulations! It is always good to hear from those ten+ years out! It does give me hope! And helps me deal with the SE's along the journey.
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LisaH (and all)
I didn't have trastuzumab either, and here I am too, diagnosed the previous year. (My chemo was CAF x 6 and I refused blood boosters.) I did 1 3/4 years of tamoxifen.
AlaskaAngel
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Alaska Angel,
I am 5 years out from diagnosis-- will be 5 years of taking arimidex in December, and I'm so looking forward to stopping it! I was interested that you did 1 3/4 years of tamoxifin -- do you recommend the hormonal treatments for more than a year? And -- please -- you seem very intelligent and well versed in the pathology of all this -- I've just been told I have rapid onset esotropia (double vision), and am being sent for a MRI to rule out brain mets. Do you know anything about this?? Does anyone. I'm a bit frightened. Thanks!
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siisis,
Looking at your 2008 diagnosis certainly doesn't reveal any high risk likelihood. And you completed one therapy commonly used for it, as well as prophylaxtic surgery and are almost done with the recommended 5 years of an AI.
You have done more than most early stage patients do, especially considering that the tumor analysis was grade 2 and nodes were negative. But your fear is understandable. HER2 (for any of us) can involve brain metastasis.
My knowledge is limited, and in particular I am not knowledgeable about double vision or the various causes for it.
I have shared some knowledge here about research done that indicates that the degree of breast density that a patient has could be meainingful for those who are taking tamoxifen, in terms of measuring the effect of tamoxifen that could then allow patients to stop taking that drug at the point where the density diminishes significantly. At this point that research does not discuss any application to the use of any aromatase inhibitor.
I wish I could be more helpful, especially in your situation where you are dealing with an unexpected, sudden, and very frightening new physical change like double vision. At one point I had an MRI because I of significant vertigo and because of the risk of brain mets for any of us, and I haven't forgotten what it was like to wait for the news. Although as HER2's we ARE at risk for brain mets, we also need to remember as humans that whatever is causing the problem could also be due to something entirely unrelated to our breast cancer for which other treatments may be available. In any case, I too hope your exam will provide answers that will help you to deal with such difficult circumstances.
AlaskaAngel
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Alaska Angel,
How kind of you to reply so quickly. Thank you for your words of support. I'm trying to prepare myself emotionally for bad news. Intellectually, I know that the best we can do in difficult situations is to approach them with courage and dignity. Hope I can. What is, is, after all.
I'm hesitant to involve friends or family in my fears at this point -- so the connection to you means more than I can say.
Thank you.
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siisis,
We are kindred spirits, I think.
Of course, there is no one "right"way to respond to sudden indefinite and threatening information and we each choose our own way to deal with it. In this instance, your reaction is very much like my own. When I was initially diagnosed I received the news over the phone just as my husband and I were leaving for a long-anticipated trip to the Grand Canyon. I felt at the time that I needed to learn more to understand and make choices for myself, and I didn't want to spoil a trip for him that both of us had been looking forward to for so long. So I didn't mention anything to him about it for a number of days, until it felt "right" to tell him. Along the way we stopped in bookstores and I bought what little was available then, primarily Dr. Susan Love's Breast Book. I hadn't even told my sister. There is a sense of dignity and personal control in that decision, even if we don't have full knowledge yet about the situation.
With you in spirit,
AlaskaAngel
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AA, Yes, I believe we are similar. There's more than just nobility of spirit involved in our not telling others or asking for help, of course!! It seems we both need that feeling of self-reliance and competence that refusing to be a "victim" -- or, god forbid, asking for sympathy! -- entails. In 2008 I received the news that I needed a biopsy the week before my husband and I were scheduled to hike in the Dolomites in Italy! Like you, I saw no point in ruining his vacation with worry, but, unlike you I was not facing the certainty of a cancer diagnosis. But I did struggle alone with the worry for three long weeks before we got home and the biopsy confirmed the cancer. I have absolutely no regrets about this. Everyone is different, as you say, but I don't see the point in increasing the misery of those you love just because you need a shoulder to cry on. Love hearing from you.
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Congrats to everyone on their recent cancerversaries! I will be 10 years out from DX on 10/20/13. It's humbling to even think of this and I don't think I've fully grasped it yet. I tend to be relatively private about my cancer history so it means so much to be able to share this here with all my sisters. I'm happy to see quite a few familiar names here, such as lago and Aussie Sharon.
I remember how I struggled through chemo and all the other personal challenges I had to face during cancer treatment and recovery. It's so true that what doesn't kill you makes you stronger...eventually.
If you are just beginning the journey, take care of yourself, ask questions and seek answers. I think I'm alive today because of research I did based on some leads from other ladies in my support group (who also asked tons of questions and advocated for themselves)...which led me to obtain Herceptin treatment prior to FDA approval, 10 months before the trials were completed. Don't listen to the naysayers who may want you to tend to their needs rather than your own need to survive. Get second and third opinions if you feel you need to, if you can. I was fortunate to have excellent insurance when I went through this but with my current insurance I'm not sure I would have been able to access the care I needed.
The boards have been an invaluable source of information and support. No one else knows what we go through unless they have experienced it themselves. So thank you to everyone and wishing strength and courage to all of us!0 -
Thanks Soccermom for posting such an inspirational story to give us all encouragement to go on and that we can do it ...0 -
+++. 12 years out. Enjoying life.0 -
congrats cottonwood, may you have many many year ahead!
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Thanks everyone for your inspirational stories...you give us all hope!0 -
Thank you to all for the encouraging stories as I start this journey down the same road...0 -
9 years on Dec 2 2013!!
Hope springs eternal0 -
Thank you for sharing-congratulations!0 -
Yea Soccermom! Congrats......love hearing it!0 -
Thank you Annie- if I can do it, anyone can! Wishing you all the best..0
