TRIPLE POSITIVE GROUP
Comments
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In the original trials seeking FDA approval trial sponsors and designers would not have data on a shorter time period if it was not looked at. In the HERA trial both one and two years were looked at, but not six months. How could they publish any data on a time period not included? The drug makers have done their due diligence in completing the FDA approval process, they have developed a safe and effective drug according to the accepted parameters. I view the subsequent studies, and there have been many for Herceptin, as refinement that has helped provide insight into changes in duration of treatment, infusion and injection, etc., and improved upon the baseline for treatment established in the original trials. I see trials and studies working hand in hand, the drug comes to fruition in the trial, and treatment is improved by the studies.
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Here is a link that shows 2018 awards and grant funding by NIH, the largest public biomedical research funder in the world - this includes many universities, medical schools, and organizations. NIH does studies in addition to the oversight of clinical trials by drug companies.
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SpecialK - Thank you sincerely for your continuous, evidence based, unbiased, non-judgmental, kind, informative, fact filled (rather than fear fueled) much needed, supportive posts. We have a ton of misinformation, as triple positives, to sort through. I know that newcomers will quickly realize, as I do, that your posts are validated by facts and experience. I hope you know how much you are appreciated!! Jul
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Thank you, Juli. I agree 100% and add my thanks to/appreciation for SpecialK's wonderful, helpful posts. It is amazing to have someone so articulate and well-informed who is willing to give so much of her time and energy to benefit others.
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Special K, I wanted to add my voice to the chorus of appreciation. We are very lucky that you lend your knowledge so generously to this forum. Thank you for being there for your BC sisters (and brothers.)
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Please add my voice to the kudos for SpecialK. I have been lucky to have followed her on this thread since it was started in 2011.
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I too am very grateful to you specialk for all the knowledge and experience you share in this group. Thank you so much for your dedicated support and encouragement!0
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Ingerp - I’m so glad to hear your first treatment went well!
Suburbs - sending prayers that your infection is getting better each day!
Cherry - I am so glad you posted. I have been worried about you. Please know we are here to help so don’t hesitate to reach out. Sending hugs....
Kimcee - I hope you are doing ok, keep us posted on your heart issues.
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deni1661, I'm doing better everyday and my wound is nearly closed. I can barely pack it any longer and have graduated to packing strips rather than gauze. I'm very hopeful that we have this thing nearly beaten.
I agree with everyone. SpecialK has a magic clipboard with encyclopedic recall. We are blessed to have her here supporting us.
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Suburbs, glad to hear you finally starting to heal. Our bodies have been through so much. It takes me 3-4 times longer to get over a simple cold anymore. Hopefully soon our bodies will be back to strong.
Hope everyone wakes up and rocks this Monday!
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Yay SpecialK! You know I'm a big fan.
Thanks much, deni. If I had to look for something I'd say I felt a little foggy yesterday (Day 3) but am really fine. Haven't really had any tummy/GI issues (my biggest fear!), so. . . yay? I'm plowing through work, don't have too much going on this week, and then will gear up for #2 on Friday.
Can I just give a shout-out to everyone we have in our lives who hear what we have going on and come closer? I have a couple of friends/acquaintances who have been checking up on me much more than I would have expected, in a very sweet way. I can't say they are my closest friends but have come forward to offer support/assistance. This has been interesting to me--it certainly speaks to what fine people they are, and I won't forget the comfort they offered. Kinda cool. . .
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THANK YOU SpecialK. You are obviously very knowledgeable.
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Ingerp,
I'd say that with cancer, you find out who your friends are. Since active treatment, I've tried to make a special effort to provide support for those who supported me. Yes, they weren't always the "obvious" people, but they were there when they were needed.
Yes, many cheers for SpecialK. We're lucky to have her here.
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Thank you all - your appreciation is beyond sweet - I continue on this site in support because I want to be helpful, just as people were for me when I was new here. I remember well the feeling at the beginning of this experience, overwhelming and frightening, trying to gather as much knowledge as possible to make sure I was doing what I needed to treat my cancer proactively and be able to live beyond my diagnosis. Now that I am a number of years out, my perspective has evolved from where I was when I was in treatment. I too experienced the frustrations of the unavailability of treatments, the seemingly slow progress of research. I experienced a lot of side effects and complications that were, and are, difficult to manage. What I also saw during my time here was the introduction of new drugs that improve the outlook for us, new genomic technology that helps determine who needs more treatment, and who needs less. There are surgical advances that help those of us with lymphedema, radiation that can be finished at the time of surgery, many advances that have helped us. All of this represents progress, it just seems slow to us when we are in the acute phase of treatment. I am optimistic for the future, but understand that current treatment advances and change in treatment approach never seem to move fast enough when we are in the trenches.
hap - I am not sure what you think we disagree about - I never said that government entities shouldn't research and independent research should not be done - I said it is being done and provided a link to show that. I have participated in a number of breast cancer related studies done by university based programs to further look at how treatment can be improved with existing anti-hormonal drugs. I have also participated in a clinical trial done by a pharmaceutical company to bring a Her2+ recurrence prevention vaccine to the market. Dr. Brawley's quote also included a line that indicated that drug companies have no issue with studies by others on their drugs, but they can't undertake them once drugs are approved because that is a disservice to their shareholders. That is business, and like it or not, medicine is business. I believe that the mission of the NIH is to research, fund other organizations who do research, and promote treatment. NIH is part of Health and Human Services, and is not the agency responsible for drug approval, that is the Food and Drug admin. - not sure there will be a level of interagency involvement beyond what currently exists. I am also not sure there could be mandatory tracking of side effects when there already exists an avenue for reporting these - by both patient and doctor. I understand your frustration with the status quo in light of the complications you have experienced. Having one treatment cause another serious problem is scary, I have been there, I get it and I sympathize.
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hap - I am glad that anything I offer is helpful to you, and I am very happy that you are feeling better today - I hope this signals that you have turned a corner to feeling strong!
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Ingerp, I want to agree about thoughtful friends being there quietly in the background who just seem to know when you need a call, a text or a cat picture! I have been so grateful for so many these past few months and I hope I remember to pass kindness forward when this is just a memory. So many of you ladies are doing just that for us
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I am +++ and 95% ER. I gave myself a 3 month break from Tamoxifen and gradually weaned myself off gabapentin and Cymbalta that I was taking for Tamoxifen s/e's. All s/e's stopped except the hot flashes that are so bad I literally pass out with a drop in b/p and racing pulse - for which I intend to see an endocrinologist (I'm 61 and went through menopause before 50 so this is ridiculous). About 2 months ago, I restarted Tamoxifen at 1/2 dosage and last night, I gave up... Laying in bed with my bones aching down upper spine, down arms and into hands, and considering the weight that I had dropped was sneaking back on, several joints will be needing surgery soon and all the hair I left in the bathtub...I just gave up. Most of you know that my onco stopped T/C after 4 infusions (was supposed to have 6) and Herceptin gave me heart failure after 7 infusions (3 alone). At my most recent MO appt, she commented that I must be a great metabolizer of these drugs. Has anyone ever heard of such a thing? I haven't been able to finish a single form of treatment
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blownaway - yes, metabolization of these drugs can be connected to degree of side effects. For Tamoxifen, there is a test of the pathway CYP2D6, to see how strongly you metabolize it. Here is a link:
https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0048548/
This pathway is also used by a number of other drugs. Here is some additional info:
https://www.pharmacytimes.com/publications/issue/2008/2008-07/2008-07-8624
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hap - most MOs do not test, but some will if asked. AI drugs work differently, not through this same pathway, I believe it is CYP19A1. I believe you can do Kailos testing which provides information on a number of drug, linked below, on your own.
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hap - be prepared for your MO to indicate no credence in the CYP2D6 testing. The testing is not well supported among most in the oncology community - I believe having to do with the modality, not the concept. My assumption is that since there are not an abundance of alternative drugs the expectation is that you just take what is available, however how a patient metabolizes Tamoxifen may determine how well it works in preventing recurrence. If you are seen at a NCI center it may be next to impossible to get your MO to order since their hands seem to be even more bound, that is why I mentioned Kailos. I believe it is more encompassing in the number of drugs it tests for anyway.
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Hap - I've had both elbows injected twice this year but only got about 2-1/2 months of pain relief each time. More recently, my jaw seems to be "crooked" or out of position causing my teeth to not meet as they normally do. My knees were the first to give me problems but those have improved since I gave myself a break. Hopefully, my joints will get back to normal and these effects are not permanent.
SpecialK - Wow! That explains a lot (even though most of it was over my head). I have always "over responded" many to medications. Thank you for the links. I'll mention it when I see an endocrinologist in July (when I have insurance again)
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hap - you can do the Kailos yourself, the test that looks at the medications is $299
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HapB - I haven't seen an endo yet. My PCP was taking care of me. She kept me feeling great but she's also the doctor who had me on HRT for so many years battling menopausal hot flashes...hence breast cancer. Since I stopped working and lost insurance, I switched to Obamacare, which she was not in network with. Ive more recently been going to Kelsey Seybold where the PCP there decided not to make any changes and continue with the status quo. My old PCP also had me taking both Synthroid and Armour thyroid because I apparently don't convert T4 to T3. I was also on a b/p med called Clonidine (which has a s/e of helping with hot flashes)but that was changed by MD Anderson cardiologists who specialize in Herceptin induced h/f to Lisinipril and Carvedilol. KS cardiologist didn't make any changes there either. My glucose goes up every year (but may be a s/e of Carvedilol) and is pre diabetic at 108. To make a long story longer... between the hypothyroid, the pre diabetes and continuing hot flashes, I just think it's time to pull out the big guns.
I also don't take pain Meds. When I come home after surgeries, I don't even bother filling the prescriptions. I just take Tylenol. Even justNyQuil makes me feel like I'm walking 2 feet off the ground.
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Hi triple positive sisters,
Joining the chorus to thank SpecialK for always being there sharing expertise and interpreting research findings.
Blownaway, sorry you are going through all these side effects. You are very early stage and hopefully the treatment you did get will kick your cancer's *ss and not allow it to return.
I have questions on prophylactic oophorectomy. I will turn 49 in six months, and I was peri-menopausal when my cancer was diagnosed last fall. Finished chemo two months ago and my period has not returned yet. Will get radiation therapy for 6 weeks, starting next week, and after the radiation therapy I am supposed to get hormonal therapy. Since I am pre-menopausal that would be tamoxifen. Another option is getting an oophorectomy (prophylactic ovary removal) and then an AI instead of tamoxiphen. My MO said I can do one or the other but does not lean against either option. I will have a consultation with a gynecologist today to discuss oophorectomy.
I am about to turn 49 and I was in peri-menopause before my breast cancer diagnosis last fall. I was having painful, heavy periods every three weeks or so, and regular ovarian pain mid-cycle, apparently due to benign ovarian cysts that would appear during ovulation and resolve after. I also had an episode of abnormal uterine bleeding last year that scared the daylights out of me because the uterine ultrasound/biopsy revealed thickening of the uterine lining compatible with uterine polyps, although subsequent hysteroscopy did not find any polyps or masses in my uterus. Still, the uterine bleeding required a month of HRT to resolve.
I had hot flashes with chemo, and if the symptoms after my ovary removal are the same I experienced during chemo, I'd much rather have those than the heavy periods, ovarian pain and uterine bleeding. I am really tired of dealing with these symptoms, and every period when I have this ovarian pain that feels as is my ovaries (particularly the left one) are about to explode, I keep worrying about something being wrong and ovarian cancer.
So, I am leaning towards getting an oophorectomy, but I am not sure I have my facts straight about the side effects, and if this makes sense or it would be an overkill. I have read about osteoporosis and heart problems, but how common are these, and is there any way to prevent them or minimize them? Since my MO didnt lean against either option I am totally confused. He sent me to the gynecologist but I am not sure what to ask because I suspect he may not know about the breast cancer side of it and what could be better from that perspective. What should I ask him?
Help!
LaughingGull
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And should the oophorectomy be accompanied by hysterectomy? Why and under which circumstances?
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Laughing--I was going to ask about a hysterectomy as well. I have *no* personal experience with any of this, but several close friends/sister who lived with the awful bleeding (sometimes to the point of passing out) for years. I *can* tell you I've never known anyone who regretted getting a hysterectomy--easy surgery, immediate solution to the bleeding problem, . . . . Re: oophorectomy, these are hormonal changes that will happen eventually anyway, right? Any history of OC in your family? If it were me, I think I'd want to get rid of all the plumbing. That said, take your time, do your research, arrive at a decision you can be at peace with.
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Hi Ingerp,
Thanks. I dont have any history of OC, but I didnt have any history of BC either. The natural hormonal changes that will happen anyway (menopause) are not really the same as removing your ovaries, from what I have been reading. Keeping your ovaries has health benefits even after menopause, protecting your heart and such. I have the same gut feeling as you: lets get rid of all this plumbing, since I dont need it anyway, but I am not sure I have the story straight. My research does not resolve the question of whether the ovary removal would be an unnecessary overkill that will create more problems than it solves.
I hope you do well on chemo. I have reading about your chemo concerns, I had taxotere rather than weekly taxol, so I didnt chime in. My worst side effects were dry mouth that made it hard to eat the two weeks or so after treatment. This is something you can deal with, by having the fridge full of juicy stuff that you are comfortable eating. When I started doing that my life improved. I also used biotene mouth wash for the dry mouth.
LaughingGull
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I couldn't stand my gray roots anymore so dyed my hair with Madison Reed color 4 1/2 weeks post-chemo and cold caps. Just couldn't mentally handle getting ready for mastectomy on Friday looking so ragged. Hopefully my hair stays put. Has anyone else colored earlier than the cold cap companies recommend?
coach Vicky - Thanks for sharing the link to the eyebrow site. My normally thin brows are gappy now so I may try that. Any ideas for eyelashes?
SpecialK - Thank you, thank you, thank you for always sharing your knowledge with us. You and the ladies here are beacons of light and hope!
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As I have written before ...
I am too old to Tampon shop at the grocery store. My GYN took everything. He told DH if it was his wife, he would do a complete hysterectomy.
Never looked back Ladies.
Vicky
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