TRIPLE POSITIVE GROUP
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yes, take it one step at a time, and hydrate your body tillyou think you are going to float away. So many people think that it's not important, it is one of the most important, and you will be happier in the long run...
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Just posting about ooph. I am 35 and my MO was for it all the way. Had it done. I don't regret it, but am a little sad for some reason.
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Many here have donated . Thank you !........Wandering around and cheerleading again
Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs
https://community.breastcancer.org/forum/110/topic/834331?page=1
Link to the mainboard donation page
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Okay girls...it's not something I'm proud of but I want you guys to know.. I failed Aromatase inhibitors
Finished. On a 3 week holiday to make sure it's not something else going on and then onto tamoxifen. To all you girls in the throes it's a reminder that we all have some difficulties along the way with treatments. I sailed through TCH and Herceptin, surgery and with a bit of a blip on rads...I hit the wall with the hormonals. Hang in there
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ashla - you can only do what you can do - hoping for SE free days on Tamoxifen for you.
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Ashla, you aren't the only one. Arimidex and Aromasin were bad for me. I started on Femara, and it too was pretty bad, but before starting Tamox, the Onc and I agreed to try a half dose of Femara - so far so good - not great, but I'm hanging in there.
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SpeciaK, Trish-Anne
I'm wondering if maybe there's a dosing problem. One size doesn't fit all. I'm in that Dr Susan Love clinical trial that is investigating just this issue.
I felt that at this point , it was becoming dangerous. I nearly sliced a finger off while chopping garlic when my hands cramped. The icing on the cake was when I got stopped by a State Trooper while driving home from a night baseball game two hours away. My left leg was so cramped I was massaging it and must have gone over the line ! It was Saturday night . Thought I was drunk
Feel kinda like a kid in school who didn't finish their homework assignment.
Thankfully my MO is wonderful abou it.
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Ashla,
From your signature, it looks like you made it through three years. That's pretty impressive to a newby like me (who has only done about six months). Hope Tamoxifen is gentler on you!
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Elaine There,
I had all the classic symptoms from the start but it was very manageable. For some reason at the 2 1/2 year mark I hit a wall. It's been a struggle for the past year..
Hope you have a better experience
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My ooph has made all the difference in the world with tamoxifen. Wish I had the ovaries out two years ago. My arthritis and plantar fasciitis are gone. Mental fog greatly diminished, feel like me for the first time in almost 2 years. Have a feeling MO will keep me on the tamoxifen at this point. Why introduce the possibility of new SEs? Add to that my osteoporosis was stable but in need of monitoring and I am happy to stay where I am.
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There is a new drug for preventing reoccurance for her2+ . You can check it out in the forum below.
Topic: Anyone see the phase3 for puma (neratinib)?
Love, Jean
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I had a mammogram done yesterday, My results just come in negative for cancer another year down !!!
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ang - yay!
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I've been on Arimidex for over 3 years now. Have joint pain and neuropathy. The worst part is trigger fingers. I had a cortisone shot in my dominant hand because my fingers locked when I picked anything up. I had o physically open my grip with y other hand. I have 2 trigger fingers n my left but they don't bother me as much so I didn't get the cortisone shot for them. I have joint pain and neuropathy from other things so can't blame them all on Arimidex. LOL
I've stuck with it as better the problems I know. I have diabetes and a pacemaker and take meds for the big D still giving me issues 3 years out from chemo. I am low on magnesium and still take 4 supplements a day and still below normal so I feel sluggish. Oh well. I get along pretty well.
Someone was asking about cutting doses on Carbo. I had to have my TCH cut by 30%. When i asked my MO if it was still going to work he said, and I quote "You have to be ALIVE for any of this to work!" Good point! LOL
We all do the best we can do with what we've got. My EF dropped from 60% to 42 right after I started Herceptin only so I had to stop after my first H only infusion. Since all the studies show it works best with chemo I have to hope it's enough!
I just lost my SIL to mets last month so I know anything can happen but I WILL LIVE MY LIFE. I don't know how long I have but then no one really knows that anyway. So ill just live.
Much love to all
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Congrats Ang.. Love to hear good news..
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Good news, Ang! I know I must be crazy, but I really don't mind getting mammograms.
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Thank you! everyone
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I am still wating for my suppression meds. They are doing a bone density scan first. What does this entail or tell them as far as my options? I am 35.
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The bone density test will provide your MO with a baseline reading of where you're at right now. It will be compared to future readings so that your MO will know whether you need meds to bolster your bone density. I was found to be osteopenic after three months on Aromasin and Zoladex. My MO told me to up my calcium intake at that point.
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Besides taking calcium and vitamin D, weight bearing exercise like walking is one of the best ways to keep bones strong. Love, Jean
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As always, check with your doctors particularly your MO before taking any supplements. There has been recurring discussion that is now being revised with recent trial data that anti oxidants speed the growth of cancers. Ask your doctor
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Hi all,
I'm newly diagnosed (10/15) with stage II, grade 3, +++ bc. Not quite sure how to dive in here, and generally feeling a bit overwhelmed.
Treatment plan from the local community hospital's cancer center is neoadjuvant TCHP, then surgery, then rad (depending on type of surgery). I have a second opinion at a nearby academic medical center on Wednesday, but it sounds like the plan I have is pretty much standard of care for this kind of cancer.
I'm 39, and very worried about the long term effects of chemo and other drugs. Research usually calms my fears, but when I started researching, I thought hair loss was going to be my biggest problem! Now I'm trying to find a balance between being informed and totally freaking myself out. And mostly failing! Ha!
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Furiosa, we all seem to struggle to find a balance between needing to know and scaring ourselves, especially at first. My only advice is once you choose where to be treated, try to trust your doctors and come on here to share with us. We understand. Love, Jean
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Furiosa, I understand completely. I have a research brain, and since my diagnosis in early July (followed by a UMX four days later), I've learned more than I ever cared to know about BC, +++ BC in particular. Sometimes I freak myself out to the point of near-paralysis; there's a fine line between full-immersion research/learning and obsessing. I'm still trying to decide what to DO with everything I've learned (I'm a pragmatist in a lot of ways), too. If it matters, I'm 36 and have had similar thoughts/feelings regarding the long-term effects of chemo, but here's the thing: with +++, chemo is a given. We pretty much just have to do it, because the other option is much worse than long-term effects of chemo.
I second zjrosenthal's sentiments. Build a medical team that you trust, and don't be afraid to ask your questions--that's part of why they're there. Given that the treatment for +++ is relatively standard (the big variables are neo-adjuvant chemo or adjuvant chemo, AC-THP or TCHP as the chemo itself, rads in certain circumstances and not in others), what may be most important for you is feeling a rapport with your MO.
I, for one, went with the academic medical center, but several factors figured in to that decision. Go with your gut.
This board has been fantastic. I've learned a ton from reading through this entire thread, and from asking specific questions and getting answers (thanks, SpecialK, Iago, and others!). In short, you're in the right place.
My own dilemma: I've all but decided to have my other breast removed. I've always had dense, "lumpy" breasts, but I've noticed the remaining one smoothing out since I started chemo, which freaks me out a little. The big question is how to get my insurance company to pay for a surgery that isn't "medically necessary." Since I don't plan to do reconstruction, I wonder if any of you have any advice; perhaps I could pitch it to them with an argument for symmetry? My partner, family, and friends seem to think I'm being a bit over-zealous with this plan--in their minds, we're treating the cancer that was there, so why not just wear a prosthetic?--but losing lumps that I've had for years makes me wonder if those lumps were made of cells that had sinister intentions. Thoughts?
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kate - I have never imaged well - mammography missed my palpable 2.5cm cancer, and MRI missed my 6mm cancerous node - I had already decided on a BMX - even though my BS offered a lumpectomy, and even though I only had documented cancer in the one side. I didn't feel I could trust imaging going forward and I didn't know about the positive nodes when I made that decision. Turned out that I had loads of ADH and ALH in the "prophy" breast - and I had busy breasts for years. In fact, they had been watching the prophy breast more closely in the lead up to the most recent mammo, not the one that actually had cancer. I always had multiple cysts in each breast, had a large one adjacent to the tumor, which made self-exam pointless. I think your plan has merit and is not an overreaction, and if your insurance company covered your original MX they have to cover "symmetry" surgery even if your plan is not to reconstruct. With an aggressive dx like TP, they shouldn't give you push-back. Dealing with family and friends is another matter, but unless they have walked in your shoes they won't understand. This is a decision that you have to make for yourself.
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Kate
There is long established federal law regarding mastectomy and reconstruction. My understanding is that you have legal right to have the other Breast removed and reconstructed
Don't recall anyone in the forum having a problem with insurance on this matter .
My Breast surgeon actually told me that if I changed my mind. Now...4 years later..I could have double mastectomy approved by the insurer.
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Kate, I'm right there with you! I have my last round of chemo on Nov. 2nd. I'm looking to meet with the surgeon on Oct. 27 (Tues) and I'm already decided on BMX, unless there is some radical change in my MRI after this last round... They found a "shadow" in the good breast when they did my MRI, biopsied and found A-typical cells, but not cancer in that breast. At this point, I can't see having UMX and then waiting to see if the other breast decides it wants to kill me. I'm not going to do reconstruction either, and it's the docs who are giving me push back.... "You're only 47, you're young, do recon" Uh, no. My husband is fine with my choice and so am I, so Tuesday will be an interesting meeting....I agree with Special K, your insurance company shouldn't give you much push back, as it's for symmetry, even if you choose no recon. I'll be praying for you about that....
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Kate,
Even though contralateral breast cancer is pretty rare, lots of women choose to have their "healthy" breasts removed. They often do so because like you, they don't trust mammograms or other scans to pick up any new cancers. Some also don't want to get regularly scheduled mammograms and to endure the anxiety that such tests entail. Finally, some want to achieve symmetry -- either matching implants or matching flatness -- in their appearance. Of course, BMX is no guarantee that there won't be a local recurrence because there's always some (small) amount of breast tissue that remains. However, some women who get BMX end up worrying whether they are getting enough "follow-up" care because they no longer see their medical team as often. As a triple positive, you will probably be seeing your medical team plenty, because of that year of Herceptin. By the time you finish that year, you might be happy to have limited interaction with your team.
For me, I opted for lumpectomy out of sheer laziness. I wanted to have some boobs present but didn't want to undergo reconstruction, which can entail several surgeries. I do have to get mammograms every six months, but that's OK with me. My MO is also a heavy scanner so I will probably have an annual MRI as well. I've always figured that if I have a local recurrence, I can get a mastectomy (or BMX) then. But, once a boob is gone, it's not like you can grow a new one, so I held on to my "healthy" breast.
Best wishes! I agree with the others; you shouldn't have any problem getting insurance to pay for an additional mastectomy.
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It's been a long road. I don't post often but please know that I am reading, grateful for your wisdom. I am at the point of treatment where I'm having herceptin only ... Until March. My question is about pain ... Feel like it's everywhere- head to toe. Still have neuropathy that started with the Taxol. Have severe joint/muscle pain and weakness ... So much so that my PC is also treating me for Lyme/ tick borne illness (MO agrees to treat this). Have had 2nd shot (every 3 months) of Lupron to suppress ovaries... And started the AI Aromasin so now headaches and dizziness have started. I am starting acupuncture, love reiki, and committing to practice mindfulness meditation. I'm so sick of talking about how sick I am.... Especially when everyone I know is so happy for me that I'm "almost done" (I know they mean well but this drives me crazy). Pain is so bad I don't know how I'll continue some days. I see my MO this week.... Any recommendations that I should discuss with her
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Well, definitely tell MO about the joint/muscle pain and weakness, and see what she says. Has it been definitively determined that you have Lyme/tick-born illness? I also developed mild neuropathy on Taxol, but it went away. When are you taking your Aromasin? I have to eat before I take my Aromasin, or I'll have a headache.
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