TRIPLE POSITIVE GROUP
Comments
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Vicky. To your words I say AMEN!
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Hap, the CDC keeps track of cancer incidence by several factors - there is a query tool on there website
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Hap, one of the reasons we’re not hearing about cancer clusters as we did in past years - like what happened in Woburn - is there have been major clamp downs on environmental pollution. The CDC website chronicles other clusters that have been identified in more recent times and sometimes a cause can’t be identified.
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Hap, one more thing - It’s odd that no one could tell you if your cancers were reported, since Massachusetts, like all states, requires physicians to report all cancer diagnoses for the express purpose of being able to identify possible clusters.
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Lita and Hap - I am a downwinder from a radiation accident in the late 50's (Santa Susana - July 1959) - my dad, my brother and I were all diagnosed with cancer, my brother and I diagnosed two years apart and we were both 54 - they both died from their Stage IV de novo cancers of differing kinds, and my mom had a rare degenerative neuromuscular disease. On our street of 10 houses there was cancer in more than half, and the cases of lung, liver, stomach, bile duct and breast are just the ones I know about - a number of these neighbors moved away. The CDC definitely tracks this cluster, and because I am a military spouse, I am included in the US Military Cancer Registry. California also has a Cancer Registry, but I am not included in that one because I didn't live there at diagnosis, but both my dad and brother would be. The CCR reports in conjunction with this radiation accident so there is coordination. I believe most states have a cancer registry - I live in Florida and there is one here.
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SpecialK - What was the source of the radiation
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Fluff,
Happy to read about your positive news!
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Chemo #2/ Day #1
Uneventful. So far. Trying to get ahead of the BIg C by taking Senokot/Colace/ Fibercon pills & Fiber Cereal Today. and if nothing happens by tomorrow I'll bring out the big guns ; Maralax.Hi whywhy - I see that we have the same chemo Treatment. Hope you have easy SE's/ Yes, Drink water and never ease up! one of the ladies posted she put frozen fruit in her water - I like my water Ice Cold - and I added a frozen big strawberry. Yummy. Or mixed 1/2 water and 1/2 Power Aid. Or I drink a lot of Seltzer water. But I still love plain old water.
Take care,
rj
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Fluff...super awesome news! So happy for you.
Special..your street sounds like the one I grew up on in NJ. Of the 14 houses on my block, 10 had someone diagnosed with cancer and 5 houses had two or more with cancer. The two blocks surrounding my block...pretty much the same. It was breast, stomach, ovarian, lung, and head and neck cancers for the most part. Marcal Paper Mills is in my town and we wonder if it was that factory.
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hap - numerous sources and tracking studies - examples, links:
http://dtsc.ca.gov/SiteCleanup/Santa_Susana_Field_Lab/SSFLCancerStudyExposureAssessment.cfm
http://ssflcag.net/resources/Cancer_Studies/%5BCDHS%2C%201992%5D%20DHS_Cancer_Study_1992.pdf
The CDC also tracked it, and yes, there were settlements - $30M from Boeing, but they were made a few years prior to my diagnosis. The area where I lived was very much a bedroom community just a few miles southeast of this site - the first classmates started dying of cancer by our 10 year high school reunion. However, 1 in 3 Americans will have cancer in their lifetime, so direct causation can be a sticky wicket.
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Hap...nope. Isn't that bizarre?
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i don't post often but i always check in
fluffy that's awesome! Love hearing good news.
Things are going ok here, Im on Tamoxifen and herceptin every 3 weeks. So far the Tamoxifen is giving few SE.
My radiated side actually looks better then the non radiated side. I hope that means they will do the exchange earlier. These expanders suck. Can't find a comfortable bra. Any ideas?
I have a hard time following everyone on here but, i will try
Cherry, glad things are going as good as can be! I knew you could do this, we find strength when we didn't know we had it.
Suburbs, if i remember right we are dancers? So i talk the
Coach, glad you are moving right along
Special, as always i love reading your posts, so much information.
Hap, i hope your heart is improving
And geez who else. Rlges, glad you are having minimal SE so far,
Lita, how are you?
Have a great day ladies
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Hi all. Busy board here. It's hard to keep up. : )
Fluff, great news. Very happy for you. rest easy.
cherry-sw, for nausea, I drank coca-cola occasionally with the bubble stirred out and ate saltine crackers. More often the nausea was caused by reflux. Daily nexium helped. Hang in there. It may make sense to go back to see your MO and get a different Med. Bland food like bananas and rice may help.
Moodyblues, what a beautiful story of fellowship and support. Thank you for sharing. It reminds me that we are not alone. And suffering in silence is not necessary. For anyone thinking that they are complaining, just imagine we all met at the grocery store and shared our common perspectives.
Ventureval, welcome to the board. You are doing great if you can shave your head, don your wig, and head to work on the day after your second chemo. Bravo. And you are so right that a wig is much easier to wear when it's not hot. Good for you. Triple negative or triple positive, you will never find a better place for support than here.
Bjquilter, let it rip. We have all been there and can support. If you've gotten through taxol 8 and are still keeping up with commitments then you are a super star. Please give yourself a break and ratchet back your activities. It gets worse before it gets better so please give yourself a break. Many of us gained weight during chemo. It happens. If you are not taking an anti-depressant, now may be the time to start. Ask your care team.
Simbobby, I hope you get a good echo result and can resume treatment soon. This is a tough problem but it sounds like your care team is doing their best to monitor you. Hang in there. Please keep us posted.
Finally, HapB, I hope you get a turnaround very soon and things get back on track. It's your turn for some good news. I know your grocery cart is full of good healing stuff. Next time I go to the store, I will try to channel some of your good habits. No doubt there is plenty of room for me to improve. Thanks for sharing links about nutrition. It's on my list to learn more over the holidays.
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And one more thing, shelabela, Hello and good to see you posting. Very glad to hear that you are not having awful side effects from the temoxifen. Hope you get your switch soon. Just the word expander is like a form of medieval torture. The things we have to deal with!
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I totally agree Hap, as a matter of fact...we can send satellites to other planets but we can't stop cancer in its tracks? It's a big money maker and I don't think we will ever see the cure. Just my belief.
Sheila, I am in the same boat. Expanders are driving me crazy. I bought two bras from Amazon, Yanira post surgery bras. Comfortable but still ugly. I am now going to buy a Coobie. My friend said they are very comfortable and you step in to them, you don't have to pull over your head. Another friend swears by jockey bralette.
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KimCee
I wore tube tops from Amazon when I had expanders. They are preyty inexpensive and come in various colors. I wore my surgical vests at night.
Vicky
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Hi Shelabela, it has been a while, glad to hear from you, sorry about the expanders, I have no experience of those since I had a lumpectomy, so. Glad you have no SEs from Tamoxifen.
moodyblues, thank you for sharing, I still have nobody I know except you guys who had bc, nobody has ever approached me anywhere and in every waiting room I am the youngest one. If it wasn't for the blogs I red online and you guys on these boards I had still thought that no women gets bc at my age.
Suburbs, about the Coke and nausea, glad you brought it up. Today is six months since they told me that the lump in my breast that I found in the end of May looked like bc on both mammo and US. Five months before that I had a clear mammo and an extensive US of the same breast. Go figure. Today is also the third day since my second EC. I am on steroids and I crave burgers. I did some homemade the other day after my infusion but was nauseaus and did not eat any, yesterday in the morning I was nauseaus again but after I took my pills I got so hungry that I ate two burgers but nothing in the evening. I even been productive and went to Christmas market with the kids and the eldest DD's BF. Today I was nauseaus but again so hungry after I took my pills and I had the last burger, we just kept frying those, and some soup and then went straight to bed to watch Unbreakable Kimmy Schmitz only to realize that I wanted a burger! What is that?! The eldest DD went to get a hair cut and I did someting I have not done for the last six months, I asked her to bring me a full menu from Max, I do not even like Max, I used to be a fan of Burger King, and only when I had hangover. But Max is the only burger chain we have on the island where we live so she got everything and I devoured a whole hamburger, onion rings, chicken wings, pommes and, wait for it, a medium size Coke. I had nothing of it in six months, I did not drink anything except for tea, water and occasionally a coffe for half of year. After I ate all that JUNK, it did taste good though, especially the Coke, who came up with this divine beverage idea (!) I could not even sit up, I only laid down. What is wrong with me?! 😩 I have to get up and do some things and as soon as I get up I am nauseaus and it is like gravity, it pulls me down, so much for the Emend and these steroids pills. Ok, a rant again, it seems I cannot do any better on this thread. And I really need to go up and get some work things done, there are people waiting for me to respond and I am a meathead today! Thank you all for listening.
Coachvicky, have the best holidays of your life!
HapB, I really hope your heart issue will resolve. I red somewhere on this boards and completely agree with it: I would rather die of heart failure than bc. It seems to me a better way to go, but this is me. So after this EC I hope I can resume Herceptin, I would rather choose more is more than less is more. The only thing I dread is actually rads, I do not know why, or I probably do, radiation, the fear of it, it is a bad connotation to me since I have been worrying about the consequences from Chernobyl accident my whole life. So rads to me is a life-sucking procedure I am subdueing myself to, cannot help this feeling, but I will start on Feb 5th, more is more.
Great holidays to all of you, although I will hang here anyway, hugs from dark and cold, especially dark, Stockholm, Cherry.
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SpecialK - That whole cancer cluster information that you posted is very interesting. I've always wondered if something similar happened to me. We were stationed at RAF Woodbridge a year after the Chernobyl incident in 1986. Many people believe that the radioactive plume that passed over the UK may be the origin of mad cow disease. I lived there for 4 years and ate British beef (among other things). I'm still unable to give blood because I lived in the UK for longer than six months between 1980 and 1996. It makes me wonder.
We also lived near a nuclear power plant (Sizemore) when renting a house in Leiston, England for a year.
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TampaBayBucsGirl - It is definitely something to think about - I also wonder about all of the chemicals in use at any operational flying base. My husband crawled all over nuclear bombs in the B52 bomb bay during the 7 years he sat alert - then I washed his flights suits, so I was handling that material. Not to mention de-icing run off, among other things. I have a few friends who were stationed in Great Britain and Europe who can't donate because of their time there - when, and if, they develop a screening test for donated blood that detects Mad Cow that restriction will be lifted.
For all - as far as donating blood - as a former blood banker who administrated the units of donated blood and the patients who received them, I would discourage donating by all of us who have been diagnosed with cancer. We never know if we are in the midst of recurrence and it means that even at the five year point (declared safe by some blood collection agencies, including the one I worked for) I do not feel our blood is 100% safe for the sick, other cancer patients, anemic, injured, elderly, frail, newborns, etc. - who receive it. Imagine if your sick infant in the pediatric ICU needed a transfusion - would you want it to come from a "former" cancer patient? That is the yardstick I use, and there is a reason that we cannot donate organs regardless of how many years have passed. I don't believe anyone is tracking donated units of blood - by individual donation number - transfused where the recipient later develops cancer, the exception is organ transplant.
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Yes, and we shouldn't forget about Water Survival Training at Homestead AFB. LOL! My husband still talks about how he got dropped in the bay with all the pipe lines from Turkey Point. OMG, I totally forgot about the flight suits. Yeah, I guess we were all exposed to a lot of bad stuff over the years.
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Hap, enjoy it while you can; it goes away in 2019..
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Hap, you’ve posted before that airing one’s political beliefs are not appropriate here.
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Hap, I understand your frustration about medical costs from cancer, but that is not what I was addressing.
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Hap, I wasn't personally offended; my reaction would be the same regardless of the content. On any public board where people of all stripes gather it seems disrespectful to me when potentially polarizing comments are made.
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Today's tax reform is what it is. I'm glad that some (like HapB) have found financial relief in it. Our taxes have become so complicated (thanks, DH) that we've become a shoe-box couple who drops our stuff off with the accountant in February.
I hope that all who are still undergoing treatment can find relief and peace this holiday season. I will be visiting my parents in northern CT with my daughter and my (more peaceful) son, while DH stays home with my anxious and more aggressive son. I am so thankful that my oncologist extended my Ambien prescription by one month. I find it impossible to sleep at my parents' house without some help.
Many blessings to all!
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Thanks, Hap B, and enjoy your time with your daughter! I was so glad to hear that she would be spending the weekend with you. I will see my Mom, Dad, sister, brother, their spouses, and my nephews. Time with family is precious; I hope you enjoy yours! Heck, we might not be that far away from each other as my parents live on the CT/MA border (I went to high school in Springfield, MA).
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I just read through three pages and can't remember who posted what, but I will try to guess.
Cherry-you are correct that it just never leaves. I recently read an article somewhere, maybe the Army of Women site, where they had done a study and women with breast cancer basically had PTSD type symptoms many more years after diagnosis than was thought.
I kind of thought that this year was a little better for me, but I also feel that if I quit thinking about it, I will become less vigilant about potential issues. This one literally threw me right back into it. I really couldn't hardly focus. I have prepared myself for potential recurrence, but always figured it would probably be somewhere that your could take treatment and live ten years or so. Not 2-5.
Even though rationally, I know I could get hit by a bus tomorrow, or have a massive heart attack, that just doesn't have the same effect on me, maybe because it hasn't been a reality. I don't really know the reason, but wow, it as bad.
As far as if I am comfortable with the diagnosis...I had the followup ultrasound today. Same tech as a week ago. I went through this whole past week with her and asked how her first one could have something that has a potential dismal reading. She said ultrasounds can pick up weird things that can be the way something is laying etc. she was so apologetic. But she said that the CT scan is what to go by and it was good. So I am better there. Ultrasound today shows thyroid slightly enlarged but nothing really in particular. Maybe the start of a goiter (such a gross word lol). Just going to watch it.
Expanders-whomever mentioned them....ugh, worst things ever...but if I was ever going to have stripper boobs, that certainly did the trick. I rarely work a bra. I had some tanks that had the bra lining in them and they worked great. Wore a really soft surgical thing at night too.
Hapb-I noticed you are just doing hercepting with no chemol Is the becoming more common now? When I was diagnosed, it was only given with chemo because that was what the studies were based on but they were looking at the potential of just herceptin.
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fluffqueen, once again I am glad that it turned out to be nothing and hopefully will continue this way. You and I have the same stats, approx same size if tumor but I have done lumpectomy, and I asked SpecialK once about your exact stats when I was at crossroads whether I should add another chemo regimen to my treatment or just do weekly Taxol and Herceptin. I decided to add EC, Ellence+Cytoxan, because of my age and high KI67, the oncologists at my clinic said that we can try even this. I will resume Herceptin in February, I have already done weekly Taxol and have the last EC infusion left. What I am trying to say, since we had the similar tumors I took your post about the enlarged node almost personally, I know, it is crazy but I am still new to this and this EC regimen is really tough. Have great holidays!Cherry
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KB870 is so right.
It is hard for me to believe what a difference a year makes both physically and emotionally.
As for the cost of cancer, my insurance has been billed over $800K. I stayed within network except for one doctor who agree to my network's payment so I have been fortunate with my out of pocket expenses. Early in treatment, I asked the nurse on my Oncology Team why I wasn't scheduled to see anyone before treatment. She said most people can not afford seeing the doctor and treatment so they limit the doctor visits. I didn't know.
I went to the dermatologist yesterday. I am still having difficulty with my nails growing and I think my rosacea may be coming back. Chemo gave me great facial skin. She prescribed the following:
NUVAIL NAIL SOLN 15ML
SOOLANTRA CREAM 45GM.
Both are somewhat new products.
Merry Christmas to all.
Vicky
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