TRIPLE POSITIVE GROUP
Comments
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ElaineTherese, thanks for the tip re food with Aromasin. I'll try that. I had been taking it at night before bed.
I have been telling my MO, RO, and Primary about the pain which is how they ended up with the lyme designation. At that time the pain felt a lot like lyme (I had it a few years before). They opted to not do any blood tests as they are notoriously inaccurate and instead relied on a clinical diagnosis. My neuropathy got better for a month or two but now is back and really bad at night in my feet. My hips and back are so severe. I've reached my limit!
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Lakeside,
I would ask MO about whether or not she could order some scans to try to determine the causes of the hip/back pain. Also, she may be able to refer you to a pain specialist who might have some ideas about how to manage the pain you have. I'm not sure about what can be done about neuropathy. I have a friend who has been diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and he's being treated with intravenous immunoglobulin (IVIg) therapy. Best wishes!
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Sorry I've been MIA. Went to NYC to meet 2 of the gals in the October 2010 chemo thread. One came all the way from Australia. We had a blast. It was like we were old friends. We were celebrating 5 years of life and more to come.
FYI I was on Anastrozole for 3+ years before I made the switch to Exemestane. Been on Exemestane for 1.5 years now. Spoke to my MO about the 10 years on AI study. She says that nothing had been released yet. If something significant happened it would be published but it takes time to publish. We might know more at the San Antonio Conference but maybe not. Even though the group may have finished the 10 years on AI we still need to see how they do in subsequent years. I don't believe it's been that long after the 10 years.
Will be seeing my MO in 6 months. We'll discuss the 5 more years again then but I know she wants me to do the 10 due to tumor size making me high risk for recurrence.
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lago - just the 10-year convo with my MO in June - he wants to do the Breast Cancer Index test to see if it indicates continuing AI benefit for 10 year recurrence prevention. I am not sure how my insurance company will feel about paying for this, I don't believe it is currently FDA approved - so I have a feeling they will consider it "experimental", but he may have some thoughts about how to get it paid for if they deny. I did broach the subject of changing to Tamoxifen after five years on AI drugs, but he was meh about it. He did mention that we have to weigh whether benefit from Femara outweighs any damage it may inflict past the 5 year point. Here is a link to the BCI test, I am curious about other oncs feeling about it:
http://www.answersbeyond5.com/
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When I was considering quitting AIs and switching to Tamoxifen my MO's reaction was "Well, it's better than nothing." She really hates Tamoxifen. Let me know if you find out anything about how to get this paid for, or at least some of it. I doubt my insurance (United Health Care) will cover it.
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Will do! One of the better things about Pinktober here in my area is that organizations are starting to donate directly to oncology treatment facilities to be used for things unpaid for by insurance, and I know my center has one of these funds. When I first got Prolia they had not yet received the auth from my insurance company, they had me sign up for the drug maker replacement plan - it covered replacement of their supply of Prolia if my insurance company denied payment, so I would not be out of pocket for it. My center's folks seem adept at the workarounds. The Prolia was covered so it was a non-issue, but I know my insurance denied my Mammaprint test early on due to their interpretation that it was "experimental" even though it was FDA approved at the time, so who knows.
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First time writer... wife was diagnosed with Triple Positive breast cancer back in May 2015. She went through 6 rounds of TCH and has Herceptin to go every three weeks until next summer.
Next week we go back and see her OCN about the next steps -- Tamoxifen, etc treatment. I have seen things such as ovary removal and tamoxifen, or zoladex w/adromasin. Just curious to some of the pros and cons of each or other treatments that might be out there for estrogen therapy. Seems to me her OCN is set on Tamoxifen right now.
Right now being under 40 we (she) isn't real sure about having her ovaries removed (she is BRAC-1 and BRAC-2 negative)
thanks for your input/insight and keep your head up everyone.
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Amstar a friend of mine is doing Luprin with Anastrozole (generic Arimidex) and doing fine. She's now 54. Can't do Tamoxifen due to blood clots. I switched from Anastrozole to Exemestane (Generic Aromasin) and found the side effects to be less on the Exemestane. I was peri menopausal and kept my ovaries. Be sure to ask about taking a bone density test before making a decision. I was osteopenic before chemo but I felt the Anastrozole/Exemestane, etc had less serious side effects than Tamoxifen and a little more effective. I did not do the ovarian suppression because my oncologist felt I was close enough to menopause she also tested my estridial levels to be sure I stayed in menopause for 5 months.
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Last Herceptin today! Port malfunctioned for the first time and they had to inject something to breakdown fibrous tissue buildup. Figures it 'breaks' the last time it gets used.
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Lucky you, Amylsp! Congrats! I'm still weeks away from my final Herceptin. I'm supposed to get an infusion tomorrow, but something went wrong at my local infusion center and I'll have to drive to a different branch in the city. Then, they keep changing the time of my appointment. Argh!
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amylsp - yay!
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Congrats --- amylsp
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Amylsp....Congradulations!
Love, Jean 
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amylsp, congratulations!!!
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Thanks for the info on BCI SpecialK, I see my oncologist for the 5 year next week, interested in seeing what he says, I was not node negative, and I'll have to check the pathology to see if I was N1 or N2. I think I was N2, so he'll probably just recommend continuing. I'm thinking of taking a couple of month break though to see how many of my "issues" are really from the AI, and if they would even go away if I quit taking it. I watched the little video and the increased number of serious side effects from continued endocrine therapy were all related to tamoxifen - endometrial cancer and blood clots, Did I see that right? I printed out the brochure to take with me. Linda
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Dang just checked my pathology, I was N2, so I believe that automatically puts me in the 10 year category, since the BCI video stated that it was for node negative or N1.
I still may take short break from the AI, then start it again after the first of the year. 0 -
linda - typed out a response on my phone and then lost it, lol! I was not node negative either, so I am not sure how that factors in - my MO does not feel it is an automatic 10 years because not enough of the data is in yet for AI drugs like it is for Tamoxifen, and he is worried about deleterious effects - I am already receiving Prolia injections for the worsening in bone density. I think his plan is to do a cost/benefit analysis next year, with one piece of the info the BCI test. I am not sure if they are starting to extrapolate data applicable for node positives from the BCI test, much like how Oncotype Dx was originally for node negatives also, but docs are starting to use it for 1-3 node positives. I will discuss in Dec with my MO at my regular 6-month check. I still have another 8 months to go on Femara until I reach five years and a decision point. One thing I did discover is that Medicare does pay for the BCI test and many insurance companies follow suit if they cover it.
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Very interesting article regarding a possible link between personal care products and Breast cancer...with a particular link to her2 pos and ER pos BC.....
FYI only...not definitive by any means....
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I finished my chemo in May and radiation in July, is it ok.to have a massage to relieve the muscle and joint pain? The massage therapist in my townrefuses to do massage on me as I am out of treatment just a couple of months.
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I'm actually a licensed massage therapist and there is no reason, in general, that a cancer survivor no longer receiving active treatment would be contra-indicated to receive a massage. You would want to avoid deep, aggressive work, of course. And anyone with metastatic cancer would need to be careful. But light Swedish, trigger point and/or acupressure, and gentle stretching and range of motion are all wonderful for dealing with joint and muscle issues. I wouldn't survive without my massages!
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Thanks to minivan and amylsp, massage can really relieve my muscle and join pain/stiff, I will try s4om website
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Thanks for the information SpecialK. I may have to consult with your onco as mine isn't familiar with the BCI.
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Arlene - come on over, lol!
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Countdown to last chemo on Monday, November 2nd! Whoohoo! They tell me that due to SEs tearing up my body (i.e. Big D, hemoglobin dropped so much needed tranfusion, and giving me really bad neuropathy), I'll only be having Herceptin and Perjeta for this last treatment! Boom! Then done with chemo and onto Herceptin only before surgery. Meet with the PS on Friday, Nov. 6th... we'll see what happens then... Warrior on, women! Warrior On!
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I certainly may SpecialK but I still have until next September for my 5 years on the Arimidex. When I'm closer, I'll get your docs information.
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SpecialK I printed the BCI brochure out to take with me to my Oncology appointment next week, I had 5 nodes positive, and they were matted, etc.. so it bumped me to N2 :-(. My husband watched the video, it really helped him understand a lot more, he's kind of the "natural" cure guy. He sells hearing aids so sees lots of older people, he's always coming home with the stories of the lady that had breast cancer, refused treatment and is fine 20 years later.... the video did a good job of showing that there's a huge group of people that wouldn't benefit from additional treatment....and it helped him understand why some people can get away without treatment. Interesting thing though is that he talks about natural cures, but when I said that I might go off of the AI for a while, he freaked.....
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....SpecialK...and I don't have any osteopenia/porosis happening, my dexa's have been good. My issues are severe pain and fatigue. My daughter is getting married in January, and it would be nice to see if I can feel better for the next couple of month. Plus taking the break will enable me to figure out how much of my issues are caused by the AI.
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linda - congrats on being the MOB, I am sure you would like the time leading up to the wedding to be comfortable and enjoyable! Glad the BCI info was helpful, and yay on your good bone density!
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Ok ladies, I'm going to throw this out there and I'm ready for the bashing but I'd feel remiss if I didn't mention it. My surgery breast has been in pain for the last 4+ years since my surgery and the hormone sucking drug. This week, I started on a turmeric paste and I woke up this morning with no breast pain and no stiffness from the Arimidex? Could be a fluke but matters not, I'll take it.
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Name of the Tumeric paste ArleneA?
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