TRIPLE POSITIVE GROUP
Comments
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Nice to read some good news tonight
Questions for anyone with tatts - I'm getting tattoos in a couple of weeks. I'm getting them at the PS office that did my implants. I also had nipple reconstruction out of the scars - looks amazingly good. But I'm wonderig how they know size, color, etc. and if it hurts.
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cypher, karen and moon - good news from all you, so nice to hear!
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shore I had my PS redraw my areolas 2x because I wanted them small (like my old ones) before he inked them. He based the color on the photo he took before. My nipples are just below the BMX scars because I went a little bigger. If he put them in the same place as the scars they would look to high.
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Well some good news, done with chemo as of 2/19/2013, done with rads as of 4/8/2013. Now my questions; is anyone being told anything by their MO's? If you are at or near the end of treatment, what are we supposed to be asking? Are we in remission? How is it determined-remission? Now we just go for periodic checkups? I have not seen this addressed on the boards. Maybe there is a thread out there?
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Waiting- I here ya feel the same way I will only see my doctor every 3 months for awhile. But I feel lost, and don't know what to do with myself, And of course I still think of cancer. Does anyone know when this fades away? Anyway I was told nothing but congrats from nurses. See ya in 3 months. It is real scary in my opinion.
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Cypher, Moon and Karen,
What joyous news to share with us. So very, very relieved and happy for you, Cypher. Finished #10 Herceptin today. . . only seven of those suckers left. Hope you all have a great weekend!!
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Gratitude, I wonder if we are kind of on the same schedule? Shockingly I don't knwo when my last herceptin is -- haven't been counting them. I started late july so I assume I'll end in early July. What was your start date?
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So, so happy for you cypher and moonflwr and also very happy to hear your surgery went so well, Karen!
Ditto to TonLee - what a wonderful way to start the weekend!
Happy dances all around!
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Not so happy dance for tryng on swimsuits at home tonight. Chemotherapy and swimsuits do not mix well. This, too, shall pass (I hope!).
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Good...no... great news Friday! Keep it coming. Congrats to cypher, Moon and karen. Sigh ....
Condolences to Moon's family too.0 -
Waiting and ang..
It is definitely a strange and uneasy feeling when the treatments are finished and no my mo didn't give me any instructions. Even tho my last herceptin was Oct 15 , this past 3 mos was the first time since DX that I had gone 3 mos without any medical visits.
It was both a cause of apprehension and relief. We're being pushed out of the nest.
Now, however, I have them all lined up...mammo, mo, ro, cardio etc!0 -
Lago - good info. God knows I don't want them too big - I might be getting used to this barbie doll look I have goin on. Too bad they don't show us a catalog
Waiting, I finished herceptin in Nov 2012 and now its been every 3 months seeing the MO. Since my BMX in Aug. 2011, I see BS every 6, but of course I saw PS very often for expansions. So after H ended, even though it was hard to get used to not having some type of doctor check me out every few weeks, I'm starting to feel better about it now. I still write down my questions for my next visit, and would call if something really bothers me, but the longer time in between appointments is sort of helping me not focus on BC all the time. They will still watch you carefully, and they will tell you what the plan is for follow-up - from what I can tell here, it varies, like everything else BC.
LeeA, trying on bathing suits sucks on a good day. I'm dreading it, and will need to set aside an entire day to shop for just one. Just buy yourself something extra fabulous not bathing suit related - shoes always look good no matter how bad you feel
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Cypher, Karen and Moon - so happy for all of you!
I've been going to PT to help increase my range of motion. I asked yesterday if she thought I would have this pain forever and she said she hoped not. It's been almost a year since my surgeries and it is frustrating to think that this tightness and pain might be permanent. I also got my orders to get a LE sleeve for flying. I don't have evidence of LE but she wants me to wear one if I travel.
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Waiting4 & ang speak up! seriously ask your onc or rad onc they should be able to tell you what follow up is. In my case it was every 3 months the first year I would be seen by someone. My places splits the visits between the onc and BS but that isn't typical. Most people just see their onc. Then year 2-5 it goes to every 6 months but again some places stay with the every 3 months for 3 years. I think after 5 years it goes to every year. 10 years every other year…and I had to ask to get this information.
You are considered NED (no evidence of disease) if you aren't stage IV or have distant mets. They rarely use the word cured until about 20 years have passed. Most places will only scan if you have symptoms. In my case my liver was scanned for 2 years because they thought they saw something on the initial scan my BS order. I think I got scans because my tumor was so large and my BS assumed I'd be stage III (not that normal to have a 6.5cm HER2+ fast growing tumor not have node invasion but I fooled them) and we had so much time before surgery. I think if they knew I'd be stage II I might not get scans.
When does the scare go away? It takes time but as you start to feel better and more normal the less you think it's going to come back. Initially you might be scared that every ache or pain is cancer but over time you will get to know what are normal aches and pains. Give it at least a year to calm down. I'm almost 3 years from diagnosis and I don't think about recurrence that much.
To feel scared or not know what to do once treatment is over is normal for most. If you have time I highly recommend volunteering. That's what I did. I'm about to join the planning committee again this year for ACS Strides Walk, Chicago. Great experience and I raised a boat load of money for the cause too. Never did that before.
Shore you can also look online. Take a look at vinnie myers site and maybe bring a picture to your PS. linky1 and linky2
linky1: vinniemyers.com then type: /section/105672_Nipple_Areola_Tattooing.html
linky2: community.breastcancer.org then type: /blog/qa-with-vinnie-myers-3d-nipple-tattoo-specialist/0 -
Cyper, Karen, Moon......fabulous to hear the good news:):)
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Waiting: June (6th to be exact) will be 2 years since my last chemo and August will be 2 years since last rads and my onc sees me every 3 months for bloodwork and a thorough breast exam. I am back to once a year for mammo and US of the bad breast. In reading Lago's comments, I believe both breasts should have the US but the radiologist seems to argue that point.
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Arlene if you have dense tissue and depending on how dense this could sway the decision… but if your onc orders it I would fight like hell to get it. My onc doesn't do blood tests. She feels tumor markers are unreliable.
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Arlene,
My center doesn't image the MX side ever. They give me a once a year mammo on the left side, and that's it.
I was told that all the tissue is gone with MX, so if it comes back on the skin or scar, that should be caught with the 3-6 month checkups.
I guess I'm the oddball here. I dread going in for checkups. I was supposed to go every 3 months the first year, and I went twice. Now it's every 6 months, and I've been once, and go again this month so twice in over a year. I check myself everyday in the shower, so if my schedule is full, I tend to blow it off.
For those of you finishing tx....I do think it takes time for people to adjust. And there is data out now that suggests women who are first diagnosed have PTSD (for real!). Some people can work through PTSD with coping skills they've learned over a lifetime. Others need a little help. Don't hesitate to go and speak with a counselor about it. I'd advise seeing someone versed in PTSD.
PTSD has many forms. Depression, and usually with men, anger.
I'm glad they're finally recognizing this in the medical community. Perhaps it will push Oncs to address (or debrief) women better, rather than just waving and saying SEE YA!
T
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Cypher,
Yes, we are on similar schedules, having looked at your treatment regimen, not identical, but similar. I began Herceptin on Sept., 28, 2012, receiving it every 21 days. For the first three sessions, it was given at the same session as the chemo session (Taxotere, hideous drug!!!). I finish in early August 2013. Am considering skipping that last one as a big part of me thinks this way, "Hey, if the chemo, radiation, Tamoxifen and 16/17 Herceptin sessions haven't eradicated all the cancer cells by the end of July 2013, then why expose my ventricles and body to that final session." Is is great, logical thinking?? Probably not, but I am not one who enjoys going to the hospital often. On a very positive note, the neuropathy in my feet has vanished--yahoo!!! Have been at the running track these last two weeks, and it feels wonderful.
Waitingforthenextstep, I have my three-month check-in/check-up appt., with my MO on April 16. This month I also have a mammogram scheduled and, of course, the Herceptin treatments continue to be every 21 days til mid-summer 2013. When I asked my MO, "How do you know if the treatment plan has worked?" he replied, "Honestly, Elizabeth, if you have no symptoms of metastases and all imaging tests are clear, then we consider that the treatment has been successful, but with each year that passes it strengthens the notion that we have hopefully eradicated all cancer cells. We can't say we have cured it til 20-25 years have elapsed."
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Surgeon called to check up on me today. She's been great. And she said that things are looking as good as can be expected at this point, just waiting for the pathology report, due Monday. I'm already feeling better, not as painful or wobbly. Thanks everyone for the encouraging words. I really appreciate it.
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Thanks Lago and TonLee. We just keep learning, don't we. I'm thinking at the next mammo/US, I'll move to 6 months. She runs the full spectrum of blood work every 3 months including CHOL because I'm told the Arimidex can cause your CHOL to increase. I get a whole CBC with Absolute Differential including Vitamin D and the CA.27-29. I had the Circulating Tumor Cell test done right after finishing Herceptin but not since.
I have a new cardiologist who seems to uderstand chemo/herceptin and it's toxic effects on the heart and will send me for Echo's every 6 months which I think is overkill but hey it is an easy test. I'm thinking once he begins to see a pattern he might lighten up on that. No MUGA unless he sees something he doesn't like in the Echo. He wants to avoid all the radiation from the MUGA. Now he asked me if my oncologist has a new mortgage.
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My BS said I only have to have a mammo once a year and I will see my MO every 6 months. I worry when I see how often you ladies see your doctor,but I do trust my doctors. Going to a Breast Cancer Survivor Group Meeting on April 15th. Hope to be able to share and learn from this group. Hope everyone is well and that soon we Ohio gals will begin to enjoy some nice weather.. Have a great weekend everyone.
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I'm not done reading but I have to say-----YYYAAAAYYY Cypher, Karen and Moon---I love hearing good news.
And usually when u are done w=and u bcome back in 3 months they should tell u if u'r NED or in remission both good news. Just ask
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Just wanted to add another "yay" to the list for everyone that got good news this past week!
regards Jenn0 -
U can't have enough yays on this thread.
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Lago - Couldn't open links, but good idea to go back and check out Vinnie's site again. Did he do yours? I've read a lot of good things about him.
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shore not sure why those didn't work but I edited the post to add they exact links so you can put them in the address window. Vinnie did not do my tatts. Not in my budget to fly and get tatts. My PS did mine. I'm quite happy with them. He did an amazing job on the color. I do think a bit of 3D enhancement might be nice but mine are small and light (like my old ones ) so really not all that noticeable that they are somewhat flat. I do believe my PS did use more than one color. He took quite a bit of time mixing. His offices staff says they need to leave him alone when he's mixing color. Guess he needs to be in his zone.
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I'm right handed and bc on right side.
Tomorrow I'll have my 3d treatment of TCH, 1/2 through!! As far as 1 in 7 women getting BC. I work with 7 women in an office, so I was the 1 of 7??? Makes one wonder.
Good luck everyone.
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It's actually 1 out of 8 (12%). Sounds like they need to hire one more woman at your place.
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Is anybody here taking metformin, either on or off the clinical trial? I was rejected from the trial, so I asked my primary care dr to prescribe metformin for its anti-cancer potential, and for its weight loss (hopefully!!) properties, which she did.
Just wondering what any of your experiences have been, especially if you aren't diabetic to start.
Thanks!
PS Posting something similar on the metformin clinical trial thread, but in theory, those women don't know if they are actually receiving the drug or getting a placebo.
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cgesq - I asked my onc about Metformin. He said I wouldn't qualify for the trial (not sure if he said why) and that it wasn't proven to provide any benefits so he wouldn't prescribe it for me. I just saw my primary care doc, and didn't ask about it (too many other issues to discuss...). I will be very interested to hear how it goes for you.
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