TRIPLE POSITIVE GROUP
Comments
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FLyjune, if you are still looking at this post and thinking about your question, I'd steer clear of Cedars and pick btwn UCLA and City of Hope.
I have family out in LA and unfortunately they have had various surgical needs and advanced cancer situations. Cedars Sinai has not been very good with any of it (3 different family members...). I think no one in my extended family will ever go there again, actually!!! We actually wonder why so many 'stars' seem to get treatment there, given their limitless resources. We've concluded, rightly or wrongly, that it is most convenient to Beverly Hills and that is the explanation!
I understand when people don't live near major NCI centers, or have insurance limitations. But you need I think to be at an NCI place and given the choice of the 3 can easily narrow it to 2 on that basis...good luck.
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maureen - I think most of us triple P's did surgery, then chemo, or chemo and then surgery, continuing Herceptin, some did rads, and did hormonal therapy starting after chemo and/or rads ended. Tamoxifen is given to pre-menopausal women (and some post-meno, for other reasons) because it does not suppress estrogen production. Younger women need estrogen in their body for the benefit of other processes, like heart and bones. Tamoxifen works by blocking the receptors on breast cells so that estrogen cannot feed them and encourage their growth. This drug is given for recurrence prevention by executing that mechanism. Those of us who are post-menopausal receive aromatase inhibitors (Arimidex, Aromasin or Femara) which work by suppressing aromatase which converts androgen into estrogen. The assumption is that our other sources of estrogen are no longer functioning, and these drugs are not prescribed unless you are firmly post-menopausal. If your receptors changed, or some of them changed, they would not be affected by Tamoxifen. Insomnia and hot flashes are more likely related to chemo and not Herceptin. If you have received Herceptin only in combination with chemo up to this point, it is impossible to tell what is causing it, but neither is listed as a side effect on Herceptin's website. I don't recall too many of us who linked these SE to Herceptin after ending chemo. Also, it is standard to begin hormonal therapy about 4-6 weeks after the last chemo, but during Herceptin. Some oncologists delay the start of hormonal therapy until after radiation for their patients who need rads, some start it during rads. I am not sure about your question regarding questionable benefit of Herceptin for ER+ patients, maybe pbrain can address that - but since 80% of BC patients are ER+ if Herceptin did not provide us benefit I think that would have been borne out statistically by now since it has been used in early stage patients for more than 5 years.
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Thank you SpecialK and PBrain- very helpful. I am pre-menopausal, although feeling menopausal with all of the hot flashes. I hope it was the other chemo drugs doing this and not the Hercepting because if so, I'm in for a very long and tired year. I really like my oncologist, but he recently suggested seeing a psychiatrist because everything he's given me for insomnia hasn't worked. He thinks it's anxiety, and of course I'm anxious, but I really think it's something chemical. I've had plenty of anxiety in my life and this is different.
Should I be worried about only having 4 TCH instead of 6, which seems to be the norm. Not that I want two more, but just want to make sure I am trying to do everything to prevent recurrence.
Thank you so much for your support and information!
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maureen - hard to say on the four treatments versus six, but you had a smaller mass with no nodes, which has already been surgically removed. Chances are that the Herceptin and hormonal therapy are the things that will provide the most benefit for you long term. One thing a psychiatrist might be able to provide are some alternative methods or medications to help with sleep that your onc does not have the expertise to provide - something to consider. I also have had long term problems with insomnia that pre-dated breast cancer, and I didn't sleep much during chemo. Things did improve over time, although I have never tried any medicationto help me sleep. I still have the occasional sleepless night, but I did that before diagnosis too.
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Ho Ladies, surgery done on August 19 and I returned home at 5 pm yesterday. Minimal pain, in good spirits and just relieved the surgery is behind me. I had really been feeling anxious about it and worried that I would experience horrendous pain. My BS told me to make sure that my drains stayed supported so I would not feel pain. My daughter removed the bandage and plastic wrap today and I actually had the courage to look at my concave chest. Steri strips still on. When those come off is when I will freak most likely. Have had little pain medication though I did rely on the morphine every 3 hours until after breakfast yesterday. Controlled pain beautifully. Now I have to heal and move on to radiation. Will see surgeon next Monday and get pathology report. Hope it will contain news that I want to hear.
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honeybair ~ Glad to hear that surgery went well and that you are having minimal pain. I will keep you in my thoughts and prayers while envisioning a good path report. Hang in there!
maureen ~ I am getting a different treatment, but I have read that the new standard of care with TCH is 4x as it hasn't been proven that there is a benefit to getting the 2 bonus rounds. As for herceptin not working as well on hormone positive tumors, I really hope that's not true. :~) I know standard chemo isn't supposed to be quite as effective on ER/PR+, however, I believe many of us disprove that as well. Thank God for hormonal drugs, however, icky they may be and thank God for herceptin!
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Honeybair,
I'm really glad to hear you're home and doing ok! I was thinking about you 😊
Maureen,
Glad you found us, sorry though that you had to! As you've already discovered, the wonderful ladies here have a wealth of information.
I'm sorry to hear you're suffering from insomnia. Hopefully you'll find something that works for you soon.
Nicky0 -
Also, Maureen, can you ask your doctor if you can try melatonin for sleep? It's a wonderful sleep aid AND it's supposed to be good for ER/PR+ breast cancer {based on some research that shows melatonin to reduce tumor size}.
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Oh Honeybair I'm so glad it's over--what a relief. And certinly hope the path report turns out really good. I knew u'd be surprised about how no pain is involved, cuz I was too.
Hi Maureen, I was always a good sleeper--but I lost plenty of sleep I used to blame it on steroids now I just blame me---but I take drugs to help--and I was the type that didn't take an aspirin, now I push drugs as a hobby. And these women on here are incredible, any questions, fears, rants this is the place to come.
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Yay Honeybair! You go. I was oddly surprised by the lack of pain from the lumpectomy and node biopsy. The only thing that bugged me were the steristrips. ;-)
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I had dinner with oconnor2450 tonight. What a pretty lady. Really sweet woman too.
maureenb herceptin works on the HER2+ part. The hormone therapy works on the ER+/PR+ part. Chemo kills everything. I had hot flashes on chemo because I went into chemo-pause. They got better once I was off chemo but still doing herceptin. I was peri-menopause before I started. Sounds like you might be younger than me. That's why your hot flashes may be more intense. I doubt it's the herceptin that is causing your hot flashes. Talk to your onc about Effexor. It's usually used as an antidepressant but for us chemo/cancer gals many oncs prescribe a lower dose and it helps with hot flashes. I also sleep with a sleep mask so when I do wake up I can fall back to sleep quickly.
I'm on anastrozole not tamoxifen. I had 6x of Taxotere/carboplatin with a year of herceptin. My tumor was much much bigger than your so that's why I probably got more rounds of chemo.
The Tamoxifen for 10 years has been shown to starve off those floaters… if you have any floaters. Chemo might have got those floaters too. Also, you had no node involvement so between having a smaller tumor and no nodes you have a smaller chance of having floaters.
Yay Honeybair!
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Miss Honey...glad you are home and safe...rest easy and take care of yourself!
Miss Maureen....I was originally prescribed 4x TCH, then at my 4th one my Onc came in and said she would
like me to stay around for 2 more....ugh....I am just crawling out of #5.....my take was she really always intended a total of 6 and just sprung the last 2 on me after she knew I could handle it.
Miss Nicky.....I think my port should possibly be named "pita princess"....princess is my work nick name as I have been at the same law firm for 30 years now!
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honeybair - yay!
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Maureen,
Have you tried meditation/relaxation techniques for sleeping? My infusion center puts out these guided meditation mp3s to help deal with the anxiety of surgery, chemo and just in general for relaxation. I uploaded them into a dropbox account, and I could send you the link if you feel it would be helpful. Then you download them into your ipod and listen away!
Just PM me your email account if you want them. I found them to be very soothing and helpful for the stress of dealing with cancer.
Good luck!
PS If anybody else wants them, feel free to PM me your info as well.
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This helps.
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Lago how nice that u had dinner with oconnor yesterday. It's really nice meeting with people. I'm sure u had a nice time
woke up way to early, meaning I'll sleep 1/2 the day---especially since Joey's back to school--it's so quiet in the house. OK BBL
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Maureen - I opted for 4 TCH's instead of 6 because the invasive portion of my tumor was tiny (IDC portion 3 mm) and chemo was controversial in my case to begin with. The side effects go up generally with rounds 5 and 6. I did have my hands on one small study that showed minimal difference in efficacy between 4 and 6 rounds, so that helped me make the decision to decline rounds 5 and 6. It was a small study, though, so there is not a lot to go on. Oh and the study didn't look at TCH; I believe it looked at AC-T for non-HER2+ patients and ACTH for HER2+.
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More progress in breast cancer research...
Sorry can't get aa better link going here...
http://www.business-standard.com/article/pti-stories/proteins-behind-breast-cancer-growth-identified-113082100500_1.html0 -
Twin Mama Heather and Dancetrancer- thanks for the reassurance! If you know where I could find those studies, I would love to see them. Thanks so much everyone!
Still no sleep last night, but I am going to try relaxation tapes and melatonin.
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I think when Im done going to ask doc for 10 years instead of 5
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Maureenb,
I really sympathize with you on the insomnia issue. I was always a great sleeper....my forte. They tell me I fell asleep standing up when I was 4 and waiting for Santa to hand out presents.
Since dx and beyond I've had on and off problems. Yoga has helped me tremendously but it took some time. Best wishes.0 -
Welcome home Honeybair..
Another....BIG...step along this road ....0 -
Goutlaw, My oncologist said that 10 yrs on Tamoxifen is the new standard..
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maureen - I searched and found a link that describes the study pretty well:
http://www.medscape.com/viewarticle/734367
Keep in mind, it is only one study, and only 20% of the subjects were HER2+, but they did do a subgroup statistical analysis on them. And, they looked at AC-TH, not TCH - so you will be extrapolating these results to TCH...but it did make me feel better about doing 4, so hopefully it will you, too.
Salient excerpts from this article:
The answer is now in: "Six is no better than 4 for the general population in the study [or for the] subgroups," said Dr. Shulman.
That is to say, in women with good-risk invasive breast cancer (0 to 3 positive lymph nodes), relapse-free survival at 4 years was 91.6% for those randomized to 6 cycles and 91.8% for those randomized to 4 cycles (hazard ratio, 1.10; (95% confidence interval, 0.87 - 1.39; P = .42). Relapse-free survival was the primary end point of the study.
At a median follow-up of 4.6 years (range, 2.5 to 8.0), the number of relapse-free survival events is 288 (138 with 4 cycles and 150 with 6 cycles). The average age of the women was 52 years.
Overall survival was a secondary end point, and both durations of therapy were, again, roughly equivalent in terms of percentage (in the mid-90s).
And specifically about HER2+:
The investigators of the multicenter trial also looked at subgroups of women. There was no comparison of women with positive and negative lymph nodes because 94% of patients were node negative.
But 64% of participants were estrogen-receptor positive and 20% were HER2 positive. Still, there was no statistically significant difference between the 4- and 6-cycle subgroups for either relapse-free or overall survival, reported Dr. Shulman.
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ChickaD,
Pita princess it is!!😉
Nicky0 -
Finished my cyber knife radiation yesterday. Saw my MO who said that due to my heart MRI confirming my lower EF rate of 45, I would not be starting the herceptin ,perjeta,taxol treatment like we had planned. Instead, I will be starting just 9 weekly doses of taxol.
It has been almost 4 years since I last had a herceptin treatment. Is it normal to have the decreased EF rates this long after completing herceptin?0 -
Dance: Thanks for that information. I too only had 4 TCHs.
BabyRuth: The EF is a tricky thing. Darn Herceptin. The studies now say it impacts the heart, I believe, 5 years out.
Did they put you on any medication to increase the EF?0 -
They did put me on coreg but I am having a really hard time with it. I do not have high blood pressure at all and I think it must be dropping my blood pressure pretty low because I get really tired and tend to fall asleep right after taking it. I am a fit person who is used to exercising and now I have no energy to do that. I am hoping over time, maybe my body will adjust and I will be able to tolerate the coreg better.
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Yes, Babyruth, Arlene is correct about the latest studies showing heart damage can show up later on (studies went out to 5 years later, but didn't go farther b/c Herceptin has not been around long enough for longer term follow-up). Did your EF drop in 2009 when you first had Herceptin? I was just wondering if you had issues then, and it never recovered, or if if was fine then and you just now discovered the drop. I'm sorry the Coreg is not going well. I exercise a lot, too, and that would be really tough.
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Babyruth===I was looking at u'r dates--it's still so early to heal properly--u need time, I think.
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This helps.