calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
Comments
-
Always appreciate reading the latest studies. Thanks for your diligence.
Monday will be #5 of 17 Herceptin-only infusions. It's been going well. Time for the follow up EchoCardiogram.
When I was making this treatment decision, my MO at Hopkins provided a list of research articles to review because I was interested in looking at this first hand. I realized early on that I was going to have to make this hard call myself. For anyone reading this thread, my suggestion is learn as much as you can, get the medical opinions you need, and make a decision based your unique factors. (For me it was 5 tiny IDC tumors found in a large area of DCIS, and micro-sized IDC in found in the sentinel node.)0 -
Alright girls...its been a LONG month!!! I'm not gonna lie...it's been crazy here. Does anyone know why we rush? We've got cancer. In this thread, it's small and the idea is to get it gone before it gets big. But how long before it gets big!? Anyway, my advice to anyone who is scared is...wait. Take a breath and try to let all this info settle. Apparently we should not make big decisions in the middle of a crisis...BAHAHAHAHAHA!!!! So, at this point (of crisis
), my family has experienced another family surgery, a family death, Thanksgiving, another surgery, and getting ready for Christmas. BRAIN OVERLOAD!!!!But get this!!!...I am almost at peace with no adj therapy. It's my understanding that I have a 10% chance of recurrence...either way. I don't like it. With Tamoxifen it goes to 7-5% chance of recurrence. That means within the next 5 years I have a 90+% chance of not having to deal with cancer. Those odds are better then my chances of getting breast cancer in the first place (we have a 12.5% chance of getting breast cancer within 80 years (or 87.5% chance of NOT getting cancer, depends on how you look at it!) HA!). So, with all these numbers and data flowing through my brain, I am realizing that trust is essential in these decisions. I'm going with trusting God. He has placed you, my family, my friends, and even cancer in my life. Through all these things, He has shown me I'm not in control. So, I figure if He's placed these docs in my path and you ladies and all this info...I'm going with a beat-up body, no chemo, tamoxifen for many years (at least 5...maybe 10), and no promise of tomorrow. I'm going to work on taking care of myself and those He places in my path (family, friends, survivors...). I'm treasuring every moment with my kiddos and ready to have no excuses to not be there with and for them. This weird cancer has caused enough chaos and crisis in my life. I am not going to give it any more opportunities. It's a part of me and has kinda helped me get back to basics. If it does return, it will be bad...I get that. But I believe I am only promised right now. So, I'm gonna live for now. I'll be back to let you know how things are going and check with newbies. Headed to a tamoxifen thread now
...Thanks again girls! This has been a great way to get some info from those who have "been there, done that"!!!
0 -
Heisforme - so glad you have come to a decision and are at a place of peace with it!!! Yay! That is such a great place to be. Wishing you all the best, and everyone else here as well.
0 -
I have found these post so interesting. My MO presented my case twice at two different cancer conferences. I was told my prognosis was "problematic" and didn't fit into any known "box". Age 77, tiny, tiny tumor. Surgeon said " I cleaned up what was left from biopsy (hollow core". Ki67 of 3%, and a mamma print with high risk of reoccurrence. I chose weekly Taxol x12 with Herceptine every 3 wks x1 yr. I just completed #11 of Taxol . Almost no SE at all except hair loss, slight anemia and fatigue.
I find myself hoping this will be the future of all Her2+, stage 1a's.
0 -
Hi Everyone. It's been a while since I've posted but wanted to share good news - 3 yr mammogram on Dec 23 and no evidence of cancer. Was a bit apprehensive because of the 3 year mark and anxious to pass that milestone. Am very, very grateful to God and everyone for this news. At my oncology appointment six months ago, my doctor at Duke said the regimen I had (12 weekly Taxol/Herceptin, followed by Herception every 3 weeks to complete a year of treatment) was now pretty much standard for 5mm Her+++ hormone negative cancer. This was inside larger DCIS. I had a lumpectomy, a 2nd surgery to expand the margins and 30 radiation treatments. As I said before, the experiences people shared on this forum that helped me decide to do the whole, offered treatment. And I feel very blessed to have had the opportunity to even have treatment when so many people don't have it available. I know it's an individual decision, no guarantees either way and we all have to accept what's next whatever it may be. I'm very grateful to have gotten to 3 years and I know anything can happen anytime that changes that. I have some residual, very mild effects of treatment, but at this point they've waned to stuff so minor it's not even worth mentioning anymore. I'm off statins and my cholesterol, triglycerides are back to normal. My AIC is fine. I think taking 200mg daily ubiquinol helps my heart (I'm over 40 so that's instead of ubiquinone) and I've taken Host Defense Turkey Tail mushrooms and Host Defense Community mushrooms among many other supplements since my treatment. Reading through some of the posts here right now I researched tumor-infiltrating lymphocytes a little, looked back at my pathology reports and couldn't find them mentioned anywhere. But the act of reading and googling and thinking about this for the last hour reminded me I haven't done this in a long time. What's going to happen is going to happen. My hair is back. I'm a little overweight. I eat too much sugar too often. I exercise some but can do more. I don't worry nearly as much about cancer as I used to and unfortunately worry has been a part of my nature since I was a small child. 2016 is yet another reminder to get better at not worrying. But mostly I'll "be better" about health stuff for a while eating healthy, exercising, engaging in stress-reducing strategies, then backslide, then step up again. I realize I've drifted into a bit of stream of consciousness here and could hit the delete key, but won't. Very long way of saying again, I'm very grateful for right now, don't want to take it for granted ever, don't want to worry either, am glad treatment seems a lot longer ago than it actually is, and want to wish everyone abundant Goodness always. You all have helped me, even if I've been here sporadically. I know I'm not alone. Though I'm sorry anyone has to go through this at all. But if I do, I feel fortunate to have options and help from others in the same boat. Peace and Blessings to everyone.
0 -
Congratulations Montana, so great to read your post of making it past the 3 year mark. Woo-hoo!!!!!!!!! That is a fabulous milestone!!!
You made me recall that I just passed another milestone myself. I had a follow-up with my breast surgeon in December. Even though I had a BMX, they have been following me with breast MRI's every year because I had close margins bilaterally (it is rare to be followed with any imaging after BMX, I only have it done due to the close margins). All was clear!!!! And the biggest news of all - my breast surgeon discharged me! No more MRI's, no follow-up EVER with her again (unless I develop any issues/lumps).
Cut free at 4.5 years - whoop, whoop! I still follow up with my RO and med onc, but it is such a great feeling to be discharged by at least one of my docs!
0 -
Yea!!!! This is sooooooo wonderful!!!!!!!!! So many, many Congratulations to you as well Dancetrancer!!! 4.5 years with no evidence of cancer AND being released from your breast surgeon!! No more MRI's and that nagging wonder of what it may show - at least worry is how it is for me for every test I have. (Have CA125, vaginal ultrasound, every six months for issue the doctor is following because I'm not ready to have ovaries removed - actually hysterectomy he thinks is called for now but if I don't do it I need to check every six months due to increased risk for ovarian cancer from breast cancer. Not to get off on that - but I was so ready to have it done a few months after finishing BC treatment until he outlined the risks and benefits of doing it, not doing it and so I'm waiting until I past 60 (3 more years) if I can due to increased risk to the heart doing it before that. Although the CA125 is not remotely definitive either way, he does it as another check because it the numbers were too, too high, the that would say something and would be a reason to just take everything out.) Anyway, I know how monitoring something for me gives me the worries - and I'm very happy for you you're down to 2 oncs and hopefully in six months that will move to every two, three or 5 years after that. Also coming up on 5 years after everything, wow!!!! That must also be an amazing feeling. Thank you for writing dancetrancer and sharing yourself and making a place for us to help each other.
0 -
Hi all!
This thread hasn't been very active in a while, but it was a lifesaver to me when I was making my decision about treatment. I chose Taxol/Herceptin and just finished my first treatment yesterday. I was wondering about white blood count dropping on Taxol/Herceptin protocol. Have any of the taxol/Herceptin veterans out there experienced a drop in White blood cells?
0 -
So glad this thread was so helpful to you Nolagirl! Huge congrats on being done with tx! I will let the Taxol/H gals reply to the WBC count Q!
0 -
nolagirl, I did not have any problem with white blood cell count during my taxol/herceptin treatments My hemoglobin dropped into the 9's, but otherwise my blood tests remained fine throughout.
0 -
I didn't have any trouble with my white cell blood counts either! Good luck with treatment!
0 -
my white counts went down to 1.1, well below normal but not low enough to need shots and I never had to delay chemo and never got sick. Best of luck to you
0 -
Great news, thank you all! I really didn't want to delay a treatment. Trying to get this finished in 11 more weeks :-)
0 -
8 years out today. Very small HER2+ 1.2 mm. No Chemo no Herceptin
0 -
Dejaboo - what a great day for you! Huge congratulations!!!!!
0 -
Thanks Dancetrance
0 -
congrats Dejaboo!! Such great news
0 -
Thanks Nolagirl1126
0 -
This isn't research about small tumors, but it is about Herceptin without chemo. Glad to see more targeted protcols emerging. I've been doing Herceptin alone since Sept.Half way done my infusions without side effects.
0 -
That is a great article Horsegirl! Thanks for sharing! Would love to see Herceptin only become the established treatment protocol for our size tumor...maybe this study will help.
0 -
thanks Horsegirl for the article! I am on Taxol/Herceptin, which also seems to benefit the "T1a -T1b tumors that are Her2 positive". Bit of course the Taxol is still chemo. This is very positive news for the future!
0 -
Hi. I am 42 years old and was just diagnosed in May, had a double mastectomy and am getting ready for treatment. My doc was uncertain about additional treatment because my invasive part was small, 6mm, but I am glad that they are being aggressive so I will get chemo/herceptin. I am terrified of chemo and am wondering how bad it is going to be. Can some of you ladies explain how it affected you? Thanks!
0 -
Hi Cwhitney. What chemo will you be getting? Most women who get weekly taxol/herceptin find it's far "easier" than expected going in. Myself included. I tolerated it very well - never felt nauseous, continued to work throughout treatment and exercised 3 days a week (just moderate exercise like walking on a treadmill, riding a recumbent bike, etc.). As treatment went on my blood count declined (which is normal) so my energy level declined. I had some issues with constipation and diarrhea at various times - used over the counter remedies for that. I had a little bit of neuropathy, but took l-glutamine and B6 which helped counteract that. I used cold caps and kept all my hair (on my head - I lost it elsewhere!). Everyone reacts differently, though, so your side effects might be different/worse than mine. But I think everyone would tell you - there's no need to be terrified!
0 -
Thank you PatinMN for responding. I have an appointment next week to find out. I am so happy I found this thread because most of my her2 sisters from my support group are stage 2 and 3. They are an awesome bunch of women but since I was node negative with 6 mm tumor, I am definitely the odd man out!
0 -
Hi Cwhitney and welcome! When I was diagnosed, they hadn't completed the Taxol study, so I had TCH. I so wish I had had Taxol, as like PatinMN says, it is apparently in general much better tolerated. They usually do 12 weekly Taxols with Herceptin and then continue Herceptin for a year. I, too, did cold caps and saved my hair, even on TCH. Wishing you the best!
0 -
hi dancetrancer - I'm starting TCH next week but I have heard that Taxol is much more tolerated. I guess I need to ask my doctor why she chose the treatment - I'm just curious.
0 -
Heathnet, probably because of the size of your tumor (3 cm). The Taxol X 12 is used for smaller tumors (I forget the range exactly). Good luck with the TCH. I had a rough time but several of the gals in my chemo group had no issues (practically) with it. Really varies by person/DNA, etc. I for sure was jealous of them! Hopefully you will be similar to them.
0 -
Thank you dancetrancer for responding. Your posts have really helped me during this difficult time. I was afraid that my doc was going to tell me no chemo (even though I'm scared to death of it!) and I would have to get a second opinion. But with my size 6mm tumor, it looks like it is the new standard. So happy to hear you are cancer free!!!
0 -
Nolagirl112, would you mind sharing your experience with chemo? We have similar diagnoses and I am meeting with the oncologist to discuss my treatment next week. I am hoping that I will just be doing Taxol with Herceptin.
0 -
Thank you Cwhitney...can't wait to reach the 5 yr mark! Only a few months away. These milestones mean so much, and I am so very grateful to still be cancer free.
0
