TRIPLE POSITIVE GROUP
Comments
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i'd like to know the same thing, arlene. i forgot to ask my onco after my last tx monday.0
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All - I finished chemo in June, had surgery in July to replace my left TE which had been out during chemo. As soon as I was healed from the surgery I started taking Femara. I am still getting Herceptin every 3 weeks until February. MO wanted some time to elapse after finishing chemo and healing from surgery so that if I developed any significant SE from the aromotase inhibitor it would be obvious. I believe this timing is pretty standard.
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Arlene and Yaya My MO had me start Tamoxifen as soon as I finished Rads so that there would be no overlap/confusion about SEs. I finished Rads the first week of August and started Tamoxifen 9/1 so that I'll be able to remember the date:)0
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Me too finished rads and after a bit started tam.
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Hi everyone!!!
I know it's been ages since I've been on here but I just wanted to share a couple of pictures of me and let you know that today was my FINAL day of herceptin. I started the day after Thankgiving with TCH, chemo ended March 11th and today is when herceptin ended. I was so happy!
After I was finished all the oncology nurses came and were shaking pom poms, blowing bubbles and making noises to celebrate my last day. Silly me started crying like a baby! I have hardly cried at all during any of my diagnosis, surgeries etc but I was just sooooo dang happy it was tears of joy and total relief!
Just wanted to share a couple of pictures of the happy occasion. (Plus my post chemo hair that I'm sporting now) I hope all of you are doing well. Things here are going good. My port will be removed on Wednesday. I have an echo to do in 2 weeks and other than seeing the oncologist in 3 months for follow up and blood work and then every 6 months after that, I am DONE! Yipppeeee!!! (well there is anastrozole too but that is nothing compared to what we all been through!)
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Whooo Hoooo Nora - Congratulations!!!!0
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CONGRATS Nora. Gorgeous! Did you use the cold caps?
Thanks everyone for your feedback about tamox/armidex. I was beginning to think we were supposed to wait until after Herceptin. Monday will be #10 for me and I will be more than half way done with it.
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My onc wanted me to start Anastrozole 1 month after I ended chemo (but was still doing Herceptin). I waited another few weeks because my NP suggested I start on March 1st… so it would be easy to remember when to stop in 5 years. She said that women who do rads wait 6 weeks too (till rads are over) so waiting a few extra weeks was no big deal. My last Herceptin was Sept 6th.
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Why did you onc start you on anas. And not tamox.
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I was peri menopausal and 49. My sister had just finished menopause (she's 2.5 years older than me) and my mom started menopause at age 50/51. My onc felt that given my age, family history, I was peri and probably a former smoker (quit 6 years ago) that my period wasn't coming back.
She had my estradol levels tested for 5 months. She prefers AIs to Tamox because their are fewer serious SE. Granted I do worry about my bones given my family history, I'm thin, white, osteopenic but so far I haven't lost too much bone density.
I know my avatar makes me look about 30. That picture is me almost a year ago (last December) wearing my wig after 2 weeks after my 4th chemo.
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Congrats on you big day. A never heard of anas. Im on tamox. Do not lke it made my face very puffy and achy all over onc said its normal gained over 15 lbs. I would love to switch to something else but shes not giving me any other options . My onc also told me to keep my port in for one yr after hercept was done. That will be in December. First she ordered a PET scan in dec then if all clear i can get it out. I think enough waiting though. As i see from others i dont have to wait a year. Maybe I should just schedule removal without it. And any help on other options to tamox. Im her2 +. Thanxs kinda confused here
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Arlene,
I started Tamox BEFORE Rads.
My Onc left it up to me. I chose to start right away because I planned on postponing rads longer than the literature recommended. Ended up starting rads within that time frame anyway, but it wasn't my original plan.
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Kay-I had to talk with my pcp today anyway, and I believe I can get the script if I want to. It is really cheap to get at Walmart and I would not even work through the insurance company, so would not have it on my records. That sounds appealing. I'm going to think about it for a few days and then decided. Sorry about all the typos in the post, I was sitting in a restaurant eating lunch and typing at the same time. Clearly not a successful effort.
Arlene and Yaya-I did not have rads, but started tamoxifen roughly two weeks after I finished chemo, on July 1. Still on Herceptin until next March.
The hormone panel my PCP ordered last week along with a ton of other blood work, showed that I am post menopausal, so I anticipate my oncologist moving me over to armidex or something around the first of the year. I don't think I will start anything new until after the holidays. I am enjoying feeling really good right now and trying to build back up stamina, etc.
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One more questions what are AIs and Avatar or are they one in the same. I too am having no ment. Cycle and 45. WHAT DOES AVATAR DO FOR YOU FOR THE GOOD. ANY HELP WOULD BE SO GREATLY APPRECIATED. Others think Im just dreamin about the se of tamox but they are horrible. Its kind of like oh well your supposed to take it so just bear with the side effects.IDK confused again
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Thank you!!!!!!
No, no cold caps. This is my hair from the end of chemo on March, 11th. (I was bald!)
It seems to be coming in fast now. I even had the stray ends cut for the first time last weekend.
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AI = Aromatase Inhibitor, generally given to post-menopausal women with ER + BC instead of Tamoxifen.
Avatar = the picture in the box on the left of your comments
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Thank you. I have just learned a lot with all the posts. I will keep reading and writing down all info I will ask my onc. THANK YOU.I wish I found this site earlier for all my questions.
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mommy4 Anastrozole is generic Arimidex. My onc wants me to keep my port in for 2 more years (after herceptin). I get it flushed every 3 months. She said if I want to remove it I can but she likes to keep it there for a total of 3 years. The thinking is those of us that are HER2+ have our highest recurrance risk in the first 3 years. If you remove the port it can't be put back in in the same place. I just schedule my port flush on the same days as some of my doctor appointments. The chemo room is open at 7:30 so I can get it done before work too.
My guess is that since you are only 45 your onc will want to wait at least 2-3 years before switching you to an AI. The other option is to use medication to suppress your ovaries so you can take an AI or removed your ovaries. I know I wasn't interested in removing my ovaries unless they were causing a problem or I was high risk for ovarian cancer… which I am not.
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Arlene and YaYa--I started the Anastrozole a couple of weeks after my last chemo. So I have been taking about it about 4 months now. I can't really report any bad side effects. No problems besides achy joints, but they go away after I get up and get moving.
Congratulations Nora!!! you look wonderful!!! I will probably be in tears @ my last Herceptin too!! I'm an emotional type of gal
. I can't wait to put my wig away for good!!0 -
At my recent MO check in appt. I asked again about Tamox v. AI for me since I had a hysterectomy early this year (was premenopausal at dx at 43 and never did have another menst cycle during/after chemo). I am on Tamox and she says that I will stay on that for a total of 2 years and then do 5 years of an AI.
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For a total of 7 years? Did she say why?
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She said something about it being more coverage. I honestly don't even get it. So confusing.
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I think the idea is extended coverage, or a longer period of protection, because you can do the full five years of an AI after Tamox because it works with a different mechanism. Tamoxifen is blocking and the AI is stopping production. As long as the SE's are not bad I think it is a good thing.
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I started tamox during rads and am on them for 2 years, then am switching to an AI for 5.
Congrats on the last herceptin!! It is wonderful to get back to normal.
It is so much fun to me to be able to put faces to names!!
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I have a question - Tamoxifen blocks the effect of estrogen on breast cells but acts like estrogen on other tissues, like the uterus. For many of us who are triple positive our tumor grade was 3 which means that our cancer cells have deviated far away from normal breast cells. SO, if any tumor cells (grade3) are out there in the periphery and we are only taking tamoxifen to block estrogen fueled growth, how do we know that the estrogen receptors on any cancer cells in the periphery are still of the breast cell type and haven't mutated to the uterus or other cell type where tamoxifen stimulates them???
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Good question. I am grade 3. I will pose that to onc.
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http://www.medicalnewstoday.com/releases/237967.php omega 3 to the rescue...0
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omaz - isn't that why some ladies on Tamoxifen have developed uterine CA? I have a good friend who had BC about 12 years ago - took the five years of Tamoxifen (and surgery/chemo) and was diagnosed a couple of years ago with aggressive uterine CA, more surgery/chemo and is now stage IV. It sucks. Her gynological onc feels it was from her BC treatment.
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Omaz: I've been trying to wrap my head around this, and similar queries. I've only recently come to comprehend the full extent of my diagnosis, and the relevancy of metastatis, for eg (in terms of survival rates / treatment etc). Though I understand that I'm benefiting from advances in treatment therapies, I'm having trouble grasping what the big-picture actually is, and my physicians have been reluctant to provide any such insight. I guess the thing is that I'd like to be more apart of the decision making processes, and don't feel like I can do that if they aren't straight-up about the pros/cons and various options available for treatment, with an eye on that 'big-picture'...
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Omaz I remember reading a couple of (old) studies before I met with my onc over a year ago saying HER2+ ( triple positives) don't do as well on Tamoxifen. Not sure why of if maybe it's because many of us triple positives are not highly positive. Here's one of them:
http://www.ncbi.nlm.nih.gov/pubmed/12618500
(I haven't read this in a while so it might not pertain to early stage. It 's also an old study from 2003).Granted I'm pretty sure my onc put me on Anastrozole because of my age and chances of not staying in chemopause were very slim given my history AND she feels the AIs have fewer serious SE. I never discussed the issue of Tamoxifen resistance because she didn't prescribe that as part of my plan… actually I went in there already thinking I should have TCH & Arimidex. She probably wondered why I didn't have any questions about what she was recommending.
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