TRIPLE POSITIVE GROUP
Comments
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Hi shelabela, a friend of mine is trying to wean herself off Effexor under the care of a doctor. Everyone is different but the withdrawal can be pretty brutal and it can take months to be weaned off it. If the Effexor is not for depression, then that may not be a problem. For people suffering from clinical depression, Effexor can be a godsend because it works a bit quicker than most anti-depressants; however, it can be a nightmare if you need an anti- depressant and have to stop taking it for any reason. Is the script for an off label use? Anyway, I hope you were warned about the side effects thoroughly. It's not my intent to scare you.Best wishes.
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shela,
i take celexa both for depression and hot flashes.but i heard effexor is good too.i used to feel like i am going to faint from hot flashes.now they are pretty much rare...
to all,
what do you take for snacks? i am curious...
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hap - yes, I participated in this MBSR study at the University of South Florida and Moffitt Cancer Center shortly after I finished chemo. My breast surgeon was one of the study authors. The study was designed around Jon Kabat-Zin's book Full Catastrophe Living. I was in the class arm of the study which included different forms of meditation and yoga andwhich was also quantified by blood and saliva samples measuring stress hormones.
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Kae,
I also take Celexa for hormone-related moodiness and hot flashes. I'm not really worried about weaning. I was on Ambien for several months and was warned about the weaning. But, when I decided to go off it, it wasn't really a problem. I just switched to taking Melatonin and that's been doing the trick.
Since I was Stage III, I wouldn't be surprised if I'm in for 10 years on Aromasin. I definitely don't want to spend the next 7 years of my life sweating like a pig and feeling down. I'll happily go off Celexa once I'm past Aromasin. It is what it is.
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Suburbs, the Effexor is for hot flashes. I am being monitored very closely while taking it. And was told to never just stop taking it. Thanks for the heads up
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Good morning everyone!
I'm new to this group, as I just found out my HER2 positive status yesterday ( I already knew I was hormone positive) at my first oncology appointment after waiting for FISH test. I was hoping to pick your brains
I have my DMX surgery scheduled with immediate reconstruction for April 23rd. At the onc appointment yesterday, I was expecting an introduction to possible treatments, depending on the pathology after surgery. He said that the HER2 coming back + status means that chemo will be needed no matter what, and that because i'm young (34), multi focal, he wants to be aggressive and start asap. He wants to start 2 weeks after surgery, and thinks that it's already been too long; it will have been 6 weeks by the time I get my surgery, from diagnosis. I was told by surgeons that 6 weeks is not too long to wait.
Meanwhile, the surgeons are saying that 2 weeks after surgery to start chemo is crazy, and that I have to wait until I heal, at least 4-6 weeks!
For chemo, he's suggesting 4 large doses every 3 weeks rather than smaller ones every weeks. He said it will last about 4.5 5 hours/ treatment. The combo is Taxotere (DOCEtaxel) and Procytox (cyclophospamide), with Herceptin partway through, the latter lasting for a year. When I've read through the HER2 positive threads, I've noticed a lot of people are on Taxotere and Herceptin, but instead of Procytox, people are on Carboplatin. Does anyone else have experience with the combination my oncologist is suggesting. I've looked a lot online as well, and haven;t seen that combination much.
I'm going to look for a second opinion in the meantime, but I'm hoping some of you might have some insight. Thank you in advance!
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Hi ladies,
Thanks again to all for chiming in re my lumpectomy vs mastectomy dilemma. I was just reading that famous post by Beesie. One point she mentions is that you need to know the risk of your cancer returning under both options, and I don't really have that. It doesn't sound like my oncologist or my surgeon, who are giving me conflicting advice, have the story straight for my type of cancer and stage, and they are giving me a recommendation based on how they think I will feel, or the generic approach.
On Monday morning at 9am I will go for a second opinion at a major cancer center. Hopefully they will answer all my questions.
Welcome root. Sorry for your diagnosis. I just completed chemo, first Adriamycin+Cytoxan (4 times, every 2 weeks) and then Taxotere+Herceptin+Perjeta (4 times, every 3 weeks) and I am making decisions about surgery (my plan was neoadjuvant chemo first, then surgery); I cannot really tell about your treatment, but I wish you best for your surgery and the chemo. And I second your decision of going for a second opinion.
LaughingGull
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hap - this study was designed to take women straight out of treatment, for me it was right after chemo, and I had already had five breast cancer related surgeries - I had one expander and one prosthetic due to my removed expander on the left, still wearing a wig and receiving Herceptin. The way this study was implemented was to learn about relaxation and focus techniques to assist in the immediate aftermath of the acute (surgery and chemo) phase. Formal meditation where you have eyes closed and are quiet and focused was taught, but information meditation was also taught which is more about emptying the mind of extraneous thoughts and concentrating on whatever you are doing at that precise moment. Formal meditation is pretty self-explanatory, but I found more value in the informal - instead of cluttering the mind with a million things, to really try and just do one thing at a time - kind of the opposite of multi-tasking. It helps to de-stress and calm. The biggest takeaway I got was also that I really have very little control - there is no point in regretting the past because you can't change it, and no controlling the future beyond what the choices you make bring you, I only have the current moment I am in. If I am constantly in a state of worry about either the past or future I am wasting my current moment - it sounds so simple, but is harder to put into practice than one would think. Because I needed many more surgeries, although I wasn't aware of that at the time I did this study, I found what I learned to be essential in proceeding through a lot of bad news and challenges that came afterward.
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Mindfulness: My nurse navigator directed me to these podcasts (accessible to all; you need not be a Kaiser member): https://healthy.kaiserpermanente.org/health/care/!ut/p/a0/FchBDoMgEADAt_iAzYZEYfFmhH6hhdsGiZIIGELt99seZ9DjC33hO-3cUy18_uxCLD22md9bqnCnLVZ8okd_Nd4zoysVAocj_o9bT-GM6IzVap2MBamlBCGsgEWPBohoUkKp8UErXjnTZxmGL2IKPpI!/
These particular podcasts turned out not to be my thing, but others may find them useful. There are many mindfulness apps for smartphones; here is an NCBI/NIH study evaluating them: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4705029/
I printed out the following quote and posted it at my desk at work: "If a problem is fixable, if a situation is such that you can do something about it, then there is no need to worry. If it's not fixable, then there is no help in worrying. There is no benefit in worrying whatsoever." - Dalai Lama
I find it a good reminder, which of course applies to things one is stressing out about in a workplace environment. But also to other aspects of life, including health issues.
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Laughing ...
What is this, please:
I was just reading that famous post by Beesie.
Vicky
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coach:
check ruthbru's post on Jan 2, 11:51 for Beesie's post about lumpectomy versus mastectomy:
https://community.breastcancer.org/forum/91/topics/851551?page=1#post_4874453
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elaine,
we are both on zoladex and AI.. have you ever considered removing your ovaries to get off zoladex? i give it to myself every month and also did you ever have your estrogen measured? what level should it be if the ovarian suppression iw working? thanks
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Hi Kae!
Yes, I have considered an oopherectomy, but my OB/GYN isn't wild about removing ovaries if there's nothing really wrong with them (no cysts, not painful, etc.). We've been talking about going on a month-long Zoladex/AI break to measure my estradiol levels (to see whether I'm post-menopausal), but I haven't gotten around to it. (Spring is always a crazy semester, but this year it's crazier than ever with a new university president, a new college dean, a new departmental chair, and a new office manager, who I've been breaking in.) After chemo, my estradiol levels were a mess; no one could make much sense of them. My OB/GYN speculated that my ovaries could already be fried, but I did get my period through AC. (It stopped during Taxol.) I'm OK with the Zoladex + AI because the hospital is 10 minutes from my office.
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HapB, our local public library has classes on Mindfulness, see if yours does. It’s a nice place to sit quietly and practice this. Ours has some basic yoga and this at the same time in the library.
We in TX are going from 83 high today to 45 high tomorrow. I’m going to light the fire too
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thanks elaine! well i have endometriosis and i certainly dont want kids anymore.lol.. my onco did suggest it as an option. will see my gyne at the end of the month and see what she thinks. my Mo thinks that at age 50 ( when i finish OS and AI) i wont be menopausal yet.
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Roots, welcome and sorry you are here. Ask your MO and your surgeon to get together and discuss your plan together. What you describe is crazy. They should be on the same page. I am surprised you are not getting chemo first. Was this discussed.It's often recommended with early BC and triple positive with a tumor over 2 cm. SpecialK is the expert here on standards of care. Perhaps she can weigh in. You are asking the right questions. I hope your treatment plan gets settled soon and that you can be comfortable with your decisions. All the best.
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SpecialK
Thank you for the link. WOW. What a post!
Vicky
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Welcome, Roots.
Suburbs is spot on ... SpecialK knows the standard of care and I hope she will reply to your post.
As for a timeline, my BMX was 12 July and I started chemo 14 August. My diagnosis was in early June of the same year.
I would think your surgeon would have to "release" you to start chemo but I don't know the protocols for where you are being treated.
Coach Vicky
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roots - responded on your other thread
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Roots, sorry you have to be here but welcome. I agree with the others, your entire medical team should be on the same page. My surgeon didn't release me to resume Herceptin and Perjeta infusions until I had at least a month to recover. Surgery takes a lot out of your body and starting chemo too soon doesn't sound good to me but I'm not an expert. I would seek out a second opinion.
Best wishes for finding the answers you need and please know that we are always here for support.0 -
Suburbs I'm happy you're making progress in the right direction! I will continue to pray that you have complete healing very soon.
Baby steps on the shoulder rehab but I'm happy with the progress so far. Thanks for asking0 -
roots welcome to the group and sorry you have to be with us!
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Today is my husband's birthday. When all this began I did not know how many birthdays I would have to share with him.
Cancer has made each day a gift to embrace and each celebration one to be grateful for.
The things I once took for granted I no longer do.
Oh how I wish I could have learned these lessons an easier way.
Vicky
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someone was posting about watery eyes/herceptin...when I showed my onco's PA (never saw my onco after he found out the study he wanted me in was not funded) my watering eyes, she said your eyes are actually dry and are watering due to the dryness. Never figured that one out...
Mindfullness??? What mind? I left mine at the infusion center 4 years ago
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When your eyes are dry, from whatever source, the lacrimal glands may respond by producing a surfeit of tears which overwhelms the normal eye draining system, thus the eyes are watering even though they are dry.
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My Optometrist "plugged" a tear duct in each eye. The first ones were permanent and they kept coming out. The ones in now slowly dissolve and will be replaced every 5 or so months. It didn't hurt and is an easy office procedure. I think these have helped me with my dry eyes.
My insurance referral reads for "Keratoconjunctivitis Sicca Not Sjogren Bila." What a mouthful!
Vicky
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Hi--and welcome to the new folks. Sorry you have to be here, but of the communities I'm on, this one is good for talking!
Just had hubby shave my head. He did a pretty good job! There are a few uneven spots, but nothing too bothersome. I'm wearing a cotton cap. Chemo starts Tuesday. Our problem is the whole family got bronchitis. I'm well on the mend (finished antibiotics, no fever, just a bit of clear sniffles--and the pollen here is awful, so I think that's the culprit).
I was on an SSRI around 2004-6 (Zoloft), and it worked well for what I needed--and I titrated off slowly without any real issues. The oncologist mentioned using Cymbalta to combat side effects from AI (won't start for a while), especially bone pain. I'm not thrilled, but I don't have many options since I can't take Gabapentin or Lyrica. So, I'm just going to wait and see when the time comes. I have spinal stenosis and had 2 cervical spine surgeries before age 48; hence, my concern about bone pain.
Hope you have a good week,
dee
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I took an antidepressant for about 7 months. I believe they are critical for people at certain points. But when I wanted to wean off, my MO told me 15 days!!! Well, being naive, I followed that. It was awful...I had the worst dizziness. So, a slow weaning off is critical..
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Thanks, will do!
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Thankful for Prozac everyday. I waited months and finally knew I needed help. I was warned thoroughly about side effects and long-term consequences. I think cancer patients benefit greatly from anti-depressants.
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