TRIPLE POSITIVE GROUP
Comments
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Welcome back Special K. Glad you had such a great time! You know, I signed up for that army of women and never heard anything from them...
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Welcome back SpecialK, sounds like you had a fabulous trip!
Welcome to the new ladies. I am sure this is not where you want to be, but I hope you find this group to be encouraging and helpful.
I had my Echo last week, and saw the MO before my Herceptin today. EF is 63, so no Herceptin holiday for me. I had to see the PA before the MO and go over everything with her. I was left wondering what the point of the PA is if I then have to go over everything again with the MO! I had a lot of questions about staring either Tamoxifen or an AI, so it was a long meeting. (PA was no help whatsoever) Bottom line was that I agreed to start on Anastrozole and give it 3 months and see how I do.
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Welcome back Special K!
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Thanks everyone! I am finally feeling I am back in the right time zone!
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Welcome to the new people. Very interesting discussion. I think with more and more histories on electronic records, these kinds of studies will begin.
If the MO is going over the PAs stuff, may the PA is new? Mo doesn't quite trust the PA yet. Been, glad your EF is holding, I wish mine had, is really have liked to finish mine! .Specially, glad you are back. And happy you are back in sync at home, LOL. And, Cami, you really know quite a lot, and knowing when to say you don't know, makes you much smarter than people who dont know THAT! LOL. Much love to all.0 -
I'm doing the 70/30 rule.
5 days a week I'm good. The weekend I have a food orgie (OK well maybe not that bad).Awww the interns are so cute
littlev are you sure it's only 4TCH and not 6TCH?
Yum SpecialK
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Hi Cypher,
I was referring to any factor that is considered a risk factor for recurrence, such as obesity, lack of exercise, overuse of alcohol, etc., BUT if you are asking about smoking specifically that is a good question because I'm not certain that people who smoke actually have a higher rate of bc or a higher rate of recurrence of bc.
You were seen by a geneticist and so was I, in regard to family history. (I am a participant in the trial for early detection of ovarian cancer, to try to develop a better marker for that since one aunt had OVCA and I have so many family members with bc.) I raised the question with the geneticist about having no recurrences of bc across all my relatives (other than a new dx of IBC for my older sister) and the issue of no added risk for me based on that history, and he did not have any answer to my question about it. I asked why medical providers and geneticists would be so careful about collecting the breast cancer history, yet not at all interested or careful enough to also ask whether any of the relatives with bc had ever died of it or recurred. I know he was surprised by the question.
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Alaska, the thing about those risk factors is, I didn't have any of those and I still got bc -- quite a few of us didn't have any of those and still got bc. However, it would still be interesting to see recurrence data in terms of those risk factors. Good point about the family history and the nonrecurrence -- if they actually included that they might find that there is a gene which makes you likely to get it but not likely to recur, in which case those who had it could a) have some peace of mind and b) might reasonably opt for less treatment.
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Cypher I agree but that to me seems very far off--it's just I can't imagine (well not in my lifetime) that that willl be don--See to me it's like what came first the chicken or the egg. Cuz I think by now they should have found a cure not just treatment or sometype of vaccine I know I think quirky I say it myself but that's how I feel--cancer had been around for how long--it was around forever, research has been going on for almost as long--so in my mind how far have they really come. I'm such a downer. LOL
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Cypher I agree but that to me seems very far off--it's just I can't imagine (well not in my lifetime) that that willl be don--See to me it's like what came first the chicken or the egg. Cuz I think by now they should have found a cure not just treatment or sometype of vaccine I know I think quirky I say it myself but that's how I feel--cancer had been around for how long--it was around forever, research has been going on for almost as long--so in my mind how far have they really come. I'm such a downer. LOL
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They are doing studies to see who is more likely to recur. Some of the tests now like Oncotype are designed (but not fool proof) to do this but there are so many things we don't know yet. In spite of what some think oncs do not like to over treat. Also the company that can create this test, the cure for cancer or even a vaccine will make a fortune. They really would like to find the answer.
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Breast cancer is everywhere in my family - my mom, her two sisters, my paternal grandmother and her sisters...yet no one has ever recurred and no one has ever died from breast cancer. Treatments were all over the place - some received the works, others the minimum. Some were drinkers and smokers, some were obese, some were active, healthy and ate well. I hold this info close to my heart and it boosts me in darker times. It helps my attitude.
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There are soo many studies on who will recur and I'm in one of them. MY BS used Mammaprint and I am in an observational clinical trial with Agendia the maker of Mammaprint. All of us will be required to have neoadjuvant treatments whether hormonal or chemotherapy. At the outset they know precisely how we responded to treatment. They have our DNA and RNA and they will follow us for at least five years to see how we do.
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Unfortunately, it is usually the patients and not the providers who have to be the ones to nail down the criteria for the most effective treatments, because they ARE the actual end consumers.
That means having to be more involved with the decision-making process, including getting educated and asking questions. We aren't experts ourselves, but that still is what it means when it comes to getting better treatments.
I sympathize with the people here who feel like there is no end to the research and no great result in sight, yet our intelligent and informed involvement IS what it will take to get there.
The problem with designing yet more tests that use genetic information alone is that it will continue to leave us in the position of knowing which patients are somewhat more likely or less likely to recur, yet still subjecting most patients to treatment "just in case", due to failing to include risk behaviors as well as personal environmental influences, in advising patients about treatments and for patients to consider when they are choosing treatments.
A.A.
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Is vitamin D3 over the counter or do you need to ask your doctor for it? Do u take this after chemo to lower the chance of it recurring or during chemo?
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D3 is over the counter and I believe that most of us started it after chemo was done. Depending on your Vit D level you may need to take a larger dose than the RDA to get your level to come up.
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Speaking of being a downer, this morning I finally had that ultrasound and needle biopsy of the pelvic lymph nodes that have been palpable for several months. Feeling very anxious about it. I keep trying to get reassurance from dr. google that it's something like arthritis or whatever (arthritis can cause that and I do have arthritis). It is symmetrical -- same lymph node on Rt and Left side is palpable. It could also be lymphoma or something even scarier..... Aiiieee!!!! I won't find out anything for sure until next week, probably not until wed or so.
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Cypher waitin is awful I know I teuly hope all is well and please take something to calm down--see there I go again pushing drugs or anything that helps relaxation, ANYTHING--Cypher u know better than to google things, it can be terribly depressing if we googled all the things that bother us. So no googling and think like u'r fine and don't google anymore--Who made up that word google? It sounds like something I would make up so don't trust it. (((HUGS)))
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thanks Cami. I appreciate it. I am hoping Bren chimes in, I think she knows something about this kind of thing.... Sometimes dr. google can be reassuring you know.
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goutlaw before I was diagnosed my PCP diagnosed me with low D. I was in the single digits! He put me on prescription D for a while but then switch me to OTC. I'm just on OTC. My D was high (79) last time I checked but no one seemed to be concered. High normal is 70.
cypher time to step away from the google button. I mean couldn't even be an infection?
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If it's an infection I've had it for 3 months and it's otherwise asymptomatic. It could apparently be arthritis related, and it's also possible that I have had a low level asymptomatic infection.... I was hoping dr. google would come up with something b9 for me. : (
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sorry cypher, I have no ideas for you. But I agree with Lago, step away from Dr Google! I think this one might be best left for the professionals.
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Cypher,
There's nothing worse than waiting for results! Sorry you have to go through this. I hope it turns out to be nothing - but in the meantime listen to the advice. No more dr google!!!
Nicky0 -
OK one of my strange (to me) stories, I'm watching a program from 1994 and it's abut cancer--it's odd to me cuz they are quoting the same %'s then that are available now with certain treatments and the types of cancers and they are all the same as now--I told u I pay attention to strange things. I didn't realize 20 yrs ago this was known.
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CAmillegal if you get a chance read "Emperor Of All Maladies" It's a history of cancer including all the politics. Big book. I have yet to finish it myself but very eye opening about cancer, cancer politics and the business of cancer. I bought it used on Amazon at the time but not that $$. Other places might sell it for less online.
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Goutlaw: Prior to diagnosis, my D level was extremely low and I too went on the prescription dose and then maintenance of 3000 IUs, then 2000 IUs daily and at my last checkup it was 86 so onc took me off of it. We will see what it is like in a few weeks when I go for my 4 month checkup. My daughter just found out she has low D as does my husband.
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I was told most of us that live in the Northern states tend to have low D. All adults should be checked. That's why my PCP did it
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A number of years ago I wrote to a number of different entities that had influence in the process of determining the amount of vitamin D that is recommended, asking that they re-evaluate the amount, as I felt the specified RDA was far too low. Whether or not my letters made even the slightest difference is rather irrelevant but eventually the RDA for vitamin D was raised somewhat. During those years I watched as my PCP began to recommend more daily vitamin D to patients on a regular basis. However, I don't think the present RDA comes close to being realistic for maintenance purposes. One has to be careful not to overdose, so periodic monitoring is important.
A.A.
P.S. http://www.nlm.nih.gov/medlineplus/ency/article/002405.htm
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When I was diagnosed with low D, I was living in Nevada(lots of sun there) and I'm a Florida native and run, boat, everything in the sun so you'd think I wouldn't have low D and my daughter lives in So. Cal and is in the sun a lot and she has it.
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