HER2 Positive-anyone 10 years out?
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Grace.... I had nosebleeds frequently during herceptin. I actually still get them more than I used to, but not like during treatment. Gotta love those optimistic oncs. My MO doesn't like to give statistics, and always puts a positive, though realistic, spin on my chance of recurrence!!! And lago is so right - cup half full is so much better!!!
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8 years ,2 months from DX. Stage 2B multifocal, 1+ node (4mm met)..Like AA I have SE's that are troublesome. Glad to be here but I want to "keep it real" and "honest".
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What sort of SEs did you get left with Soccermom4force?
I'm still struggling with a few but it's early days for me yet...
Jenn0 -
I am approching my 5 year mark in March and trying to decide what kind of celebration I want to have.... I definitely want to do something even if simple like dinner out. I used to think about cancer all the time, every day and now-- even with a mastectomy, chemo, radiation,neratinib clinical trail and a hysterectomy--- so I have visible scars---- I DONT think about it all the time, even when I see those scars! Im going to France this summer with a girlfriend and my daughter- we are staying a week and then dropping the dd off for her French immersion school for 7 weeks.........................all this to say, hang in there, it gets better and life and even LOVING life will continue!
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@KristyAnn: Love your attitude! And I agree: "hang in there, it gets better and life and even LOVING life will continue!"
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Thanks ladies
Good to know its the Herceptin and not something else for the nose bleds.
I like my surgeons prognosis...there's no more cancer, we got it all, clear margins for the breast and lymph nodes...and I'm keeping it away!0 -
Graceembraced,
Herceptin can cause nose bleeds I had a few when I was in treatment..0 -
Jennt,
Since treatment my bones and joints have aged rapidly. Apparently any area that was going to become arthritic did so rapidly. In my case my feet and spine cause significant pain daily.Cognitive functions also affected.
If I had to guess I'd say the culprit (s) are AC/Taxol dose dense and 5 yrs Tamoxifen and or Arimidex.
That said I'd do it all again if needed. Being alive trumps pain!
Warmly,
Marcia0 -
soccermom - I soooooo agree with your statement - "being alive trumps pain", though some days I have a few doubts!
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Soccermom4force - I have those arthritic changes too! Came out of nowhere... Dr has put me on an NSAID (Mobic, once every 2nd day, 2 weeks on, 2 weeks off) and the pain is gone :-)
Jenn0 -
None of the NSAIDs have helped me, so glad it's working for you Jenn. My thumb joints have both disintegrated since starting AI's, I had a steroid injection in one, that helped for a little over a year, but it's back to a lot of pain again now.
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Hi,
I am 8 years since Dx. Did not do Tamoxifen for more than a month, if that long. Herceptin for one year and monthly Lupron shots, still. Many aches and pains here and there, but glad to be where I am at the moment, NED.
Keep going, you'll be this far, and beyond, in no time.
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Congratulations, PinkEst!
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Thank you! I always leave this site feeling inspired by all the warriors that share their courage, compassion, fears, victories, challenges, honesty and hope.
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I just now saved your post. I have a folder of feel good posts that I often look to for inspiration. Thank you for sharing your story!
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PinkEst That's awesome! Keep it going girl
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Pinkest,
So nice to here ...Big congrats to you0 -
Thank you lovely ladies! All of you inspire me to keep going for the gold
( I guess the gold would be a life of no recurrences or new Dx in my / our case?)
Sending each one of you a warm hug and wishes for a long and healthy life!0 -
N.E.D. for more than 7 years...!!
Diagnosis 2005, Her2+ ER/PR-, Stage 3
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CONGRATULATIONS, Gabriella5!!
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Gabriella5 not that I'm religious or anything but:
"7-Seven is one of the greatest power numbers in Judaism, representing Creation, good fortune, and blessing. A Hebrew word for luck, gad, equals seven in gematria. Another Hebrew word for luck, mazal, equals seventy-seven." read more…
congratulations!
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Gabriella, congratulations and thanks for the HOPE!
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Gabriella, what great news. Thanks for sharing it. Seven years!
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It is so wonderful to read of your successes Pinkest and Gabriella. I hope and pray that that is all of us at one point and here for those that come after. Thank God for the researchers! Hugs to all!
Marilyn
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Thanks for posting Laurieish! We have a similar diagnosis - except mine was one node, rather than 2. My tumor was also 4.5 cm. Your 5 years of NED gives me great hope that I truly need right now.
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just posted this on the Stage III boards (her2 board wasn't up way back in 05 when I was dxed!)....anyway:
lkc wrote:
Hi Ladies.
It's eight years for me!!! I can't express how grateful I am to the ladies on these boards. Coming on here was so comforting in the early days when I had to move away from home and DH for my surgeries and treatment.
I didn't have a clue of how to make it through those 8 months.
I found a sisterhood here who soothed my fears and comforted me always even when I went to the " dark side"
Thank you, I love you all!
For my precious oldsters, my heart is filled with joy when I read your posts and are doing so well. I have learned that although we are a tough bunch we have moved on to a wondrous place of laughs, loves and specatacular gratitudes.
For the newbies. I wish I could wipe the fears and anxieties away you have now. It is truly a journey that no one wants to go on, but take heart you will get through this time and you will too join us as an " Oldster".
Be Gentler with yourselves, time will pass and things will get better.
I have been transformed by BC and feel honored and blessed to be here today LIVING LARGE EVERDAY.
Linda
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3 for me - I just saw my BS for the 3 year follow up and he said that with my stage and type of cancer, if it's going to recur it does it in the first 2-3 years, and from his experience he thinks, with cautious optimism of course, that if it was going to recur it would have done so by now - so YIIPPPPEEEE.
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LindaKR -
Based on everything I've read in articles, here on these boards, and have been told, both by my oncologist and fellow young survivors support group members, the highest risk of recurrence for triple neg BC is 1-3 years. This same window of greatest risk is generally (I emphasize generally because there is some debate!) applied to survivors who are ER- & PR- but HER2+, since hormone positive BCs, notably ER+ (I guess it gets the most attention/press), tend to recur later, and the risk doesn't fall exponentially after five years...they see recurrences 8 years out, 12 years out, 18 years out, etc.
I note this not to dash anyone's optimism, no matter how cautious, nor to alarm anyone who may be hormone positive, because the reality is that we still know so little, and even hormone negative BCs can recur further out; it's just that with hormone neg BC, we're MORE LIKELY to recur in that 1-3 year window. There are some good research articles floating around that show how hormone neg/Her2+ rates of recurrence drop after the 5th year to about what the rate of recurrence is for hormone positive BCs.
That said, my current understanding is that the 2-3 year 'highest risk' window is determined by one's hormone neg status. If hormone+, excluding the HER2, your risk would be more in line with that of other hormone+ survivors. Of course, I may be wrong. We may all be wrong and confused. I'll try to post some links to research papers later. I write this only so that survivors who are hormone+ and Her2+ don't assume that after years 1-3 they're out of the woods and then, ill-prepared, risk feeling devastated, betrayed or crushed if 8 years, 10 years down the road, or later, their BC returns. Personally, I just live with the understanding that I'm never cured. It can always come back, and so I live my life as if I have the rest of it to live.
All my best.
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I agree with what AnneMarie has stated: Hormone negative (regardless of HER2+ status) tends to recur in the first 2-3 years. My onc confirmed this.
I have also read that those that are er+/pr+ that do recur late tend to be a lower grade. Also as we have all learned, you have a higher risk if you have node involvement and a larger tumor (5cm+).
Here's the article about the late recurrence lower grade. Note this article is 5 years old. I have not read the study. linky
But the MOST IMPORTANT thing you can do to prevent risk is EXERCISE. This is one of many oncologist who will support this based on the research. linky
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Lago,
I'm one of those who is not AT ALL an exercise fanatic, but does share the belief that exercise makes a major difference for us. I think of one particular benefit of exercise as being that it does physiologically force us to both take in fluid and excrete fluid, and in the process that movement of fluid flushes through our body cells and gets rid of the stale buildup of wastes. I did physical work for much of my life rather than doing rote exercises or going to a gym. (To each their own...) I don't enjoy losing so much of my time to exercise, but I still do it because I think it does help.
Going on 11 years out from dx,
A.A.
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