Calling all TNs
Comments
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Today's humor:
TERROR THREAT LEVELS:
The English are feeling the pinch in relation to recent terrorist threats, and have therefore raised their security level from "Miffed" to "Peeved". Soon, though, security levels may be raised yet again to "Irritated" or even "A Bit Cross". The English have not been "A Bit Cross" since the blitz in 1940, when tea supplies nearly ran out. Terrorists have been re-categorized from "Tiresome" to "A Bloody Nuisance". The last time the British issued a "Bloody Nuisance" warning level was in 1588, when threatened by the Spanish Armada.
The Scots have raised their threat level from "Pissed Off" to "Let's get the Bastards". They don't have any other levels. This is the reason they have been used on the front line of the British army for the last 300 years.
The French government announced yesterday that it has raised its terror alert level from "Run" to "Hide". The only two higher levels in France are "Collaborate" and "Surrender". The rise was precipitated by a recent fire that destroyed France's white flag factory, effectively paralyzing the country's military capability.
Italy has increased the alert level from "Shout Loudly and Excitedly" to "Elaborate Military Posturing". Two more levels remain: "Ineffective Combat Operations" and "Change Sides".
The Germans have increased their alert state from "Disdainful Arrogance" to "Dress in Uniform and Sing Marching Songs". They also have two higher levels: "Invade a Neighbor" and "Lose".
Belgians, on the other hand, are all on holiday as usual; the only threat they are worried about is NATO pulling out of Brussels.
The Spanish are all excited to see their new submarines ready to deploy. These beautifully designed subs have glass bottoms so the new Spanish navy can get a really good look at the old Spanish navy.
New Zealand has raised its security levels - from "baaa" to "BAAAA". Due to continuing defense cutbacks, New Zealand has only one more level of escalation, which is "I hope Australia will come and rescue us".
Australia, meanwhile, has raised its security level from "No worries" to "She'll be all right, mate". Three more escalation levels remain: "Crikey!", "I think we'll need to cancel the barbie this weekend" and "The barbie is cancelled" So far no situation has ever warranted use of the final escalation level.
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Titan: Thank you for the moring humor. Being Belgium and French it gave me a giggle but my other half is Hungarian: Drink lots of wine, dance and sing and hope it goes away is the highest level there. LOL!
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Teka: Interesting about the clinical trial you're on! See, it really just depends on the oncologist and their recommendations in terms of a treatment plan. It does seem as though TC is becoming more the standard of care, but if I had positive nodes, I would have pushed for a more aggressive treatment.
MBJ: I'm Hungarian too! Even have a picture somewhere of the boat my great grandparents came off of. Tried to trace roots to Hungary, got as far as the small town, but that was it so far. Thank goodness for the Catholic church records or I wouldn't have ever gotten that far!
Melissa: My son just turned 3. I see some good info for you above, and there's all kinds of info online regarding triple negative. When I was dx, I researched everything, literally. I read through several long threads here from people who had gone through surgery, chemo, hair loss, vitamins to take, and more. I wrote down a LOT of info, then had it fairly clear in my head the worst and best case scenarios as well as what treatment plan I thought I wanted. In the end, when all the pathology is revealed, that's when you'll go over everything with your onc and ask lots of questions. Many of us here get second opinions, which I highly recommend for peace of mind. As far as germs, the chemo reduces your white blood count, meaning you may have varying degrees of fighting off infection. It is generally recommended to use common sense, being careful to stay away from large crowds, small children, places where infections are likely to occur... such as doctors offices, hospitals, daycare centers, schools. I think of it much like anything else, the first thing coming to mind is the H1N1 flu... just do your best to use common sense, but still enjoy life while doing it. This is a scary road and right now you're just beginning to find out everything. As so many have said before me, just take it one step at a time, take deep breaths. Surgery was frightening to me, but the anxiety prior was 100 times worse than the actual event. So far, 2 days past first chemo, it appears to be about the same as surgery... waiting is the worst because of the unknown. Will this or that happen, will I have to go through this or that, and how will I react? The mind is very powerful and you have to keep yourself from going to certain places that you'll most likely never go anyway, stay as positive as you can, eat well, get sleep, drink lots. All of those things will help you maintain a good balance so you can think properly.
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cc4npg: I traced my Hungarian side to the boat arriving in New York and never got any further. They ended up in Pennsylvania as coalminers. One of them even ended up in the newspapers and died in a famous coal mine collapse in the early 1900's.
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Wow, that's interesting! Most of them ended up either in Pennsylvania or Cleveland it seems. Some came down to Columbus, which is where mine ended up. Their main objective was to buy property, which is what they did. My great grandmother was a famous cook for the governor, from what my grandmother told me anyway. She said he paid her really good money to come cook for him. They must have lived very well, because my grandmother would get all the change from her dad's paycheck and take it to the penney store... and those were depression times! She said all she had to do was see a dress in a window of the local store, make mention that she wanted it, and he'd buy it for her. Unfortunately, she passed away with nothing, not even any family who cared enough to be there except for me, whom no one knew existed until 3 years prior to her death. Funny how life works out.
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Hey Angela..I'm an Ohio girl too!..though I have never been to Springfield..I have heard of it though...I'm 1 hour south of Cleveland...1 1/2 hours north of Columbus...We are OSU fans..and of course Cleveland sports fans even though it hurts sometimes.
My family is German..all German...we are talking Hershberger (no..not Amish).and..Siegfried. Not sure how we got here... and no cancer anywhere..guess I'm the "lucky" one.
We have a new Hungarian restaurant in town..it's pretty good..stuffed cabbage, wienerschitnzel (I know I didn't spell that right)...good stuff...
So..have you guys read about the new Vitamin D study? I have to say I'm a little disappointed...here we are thinking that getting our levels up would help us...I don't know..don't think I'm going to stop taking my D3...will talk to the onc about it in January when I got for my appts...
So..MJB..how did you end up in LA?
I would love to be in a trial...how do you guys sign up for them..I mentioned it to my onc once but nothing ever came of it...do I have to do this myself?
I would love to get into the vaccine study they have at Ireland Hospital in Cleveland..
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German here... but married a Scotsman! Double trouble, I guess.
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Titan: My father's parents died when he was quite young and his 7 brothers and sister all had moved to Michigan where he eventually met my mom, got married and headed west. First to Texas where both of my much older brothers were born and then on to California where I was born.
I haven't heard about the new study but I also think Vit D3 is just one of many factors. The other one is lack of Iodine and nutrition in our foods.
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On preparing for chemo.... don't assume you'll be laying around all the time or throwing up. I worked through most of chemo, but I am fortunate to be able to work from home. I would go out to see customers on my good week, when I was on dose dense AC. On Taxol, I was able to do just about anything. However, I would go into a funk on Friday nights. I never threw up on chemo and I have a very sensitive stomach (and gallstones).
Make sure you take your anti-nausea meds, even if you don't feel nauseus. I took Emend before AC and 2 days after. I also took Compazine (which gave me headaches). So, the onco switched me to Compazine, then Zofran, then Ativan (all in the same day). I still take Ativan to help me sleep.
Find liquids you can tolerate other than water. I liked the flavored waters, Powerade & Gatorade (the diet kinds), gingerale and lemon/lime sodas and juice. I met with a nutritionist before starting chemo. She told me to eat, even if I felt nauseus and it would help (it did). I had a thing for mangos. My onco wouldn't let me eat raw foods, even fruits and veggies (unless they were peeled or cooked). I ate a lot of oranges, carrots, cucumbers, etc.
Get lots of rest (I could have used more). WASH YOUR HANDS ALL THE TIME!!! I carried around antibacterial gel for my hands, too. Since it's cold season, you'll need to be extra careful.
Most of all, chemo is no walk in the park, but it is doable! Join a chemo thread for the month you're going to start. That really helped me. Also asking questions here because a lot of ladies here did AC/T like me, so their advice was helpful.
Good luck!!!! (((hugs)))
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Just checking in ladies! I hope all is well with everyone. I finished my 3rd TC treatment yesterday and I feel pretty good. I can't believe I still have some hair left, but this maybe the last of it though
Sending well wishes to all.....
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Hey guys! I'm 3 days out from first treatment TC... so far, minimal SE's, seriously I'm doing really well in my opinion. But, it is only the first treatment too. My daughters just got their BRCA results today. My oldest, 22, is negative. My youngest, 19, positive. She also happens to have a ventricular septal defect (hole in the heart), mitral valve prolapse, irritable kidneys (feels like she always has a UTI since 16), and earlier this year we think she had a cyst burst on an ovary. So yeah, I'm down about the whole thing. I just keep telling her that this is kinda like the hole in her heart, we now know about it so we can watch things, but it doesn't mean she'll get cancer and all. Just more appointments to make and work out. I think her plans may be to do something prophylactic after she has children, and the only good thing about me going through what I am now is so that she'll know how well I've been with it, and that it's not as bad as it sounds to begin with.
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My heart goes out to your youngest...
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cc4npg: Sorry to hear about your youngest daughter. There are many preventative things she can do to beat the odds, even though she will still eventually have to do something because of the gene. If interested, you might want to check out breastcancerchoices.org. Lots of useful info there re BC and supplementation. I have been having health problems since I was 14. My husband had the same heart problem but it almost resolved itself by the time he hit 30. Now he just has to eat healthy and get checked every once in awhile.
fighter: Glad to hear you are doing well. If you have any constipation problems, get yourself some Mag07 and you will get that chemo leftover stuff out of you in no time instead of it just sitting in your insides doing damage.
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Let's not forget though that "damage" is just what chemo is supposed to do. If it didn't kill off the bad guys at the expense of some good guys no one would endure it. Collateral damage.
BTW, I recall reading that Cytoxan is excreted in the urine and Taxotere in the feces. And, the time most of us are/were constipated pretty much concurred with its maximum efficacy (@2-3 days afterwards).
Aren't you glad I told you this?
So, the moral is... (are you ready?)... sh*t happens.... eventually.0 -
HeidiToo: According to my Onc, the chemo does it's job in about 48-72 hours and then it's just poisons and toxins in your body. They all recommend stool softeners, the Mag07 just works faster and it's gentler.
Sh*t does happen but it doesn't have to stink! LOL!!!
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Hi Ladies,
Hope everyone is doing ok.
cc4npg: Sorry about your youngest... I am scared for my girls too. Doctor said they need to be tested at age 20. They are 16 and 13 now.
Just an update: Yesterday I had my Oophorectomy(removal of ovaries) it hurts!!!!! I feel more pain with this procedure than I felt with my BMX last month. ugh!
Next Monday I will have my first fill on my TE's . I will let you girls know how it goes. Lynn18: How are you???????
Have a great day everyone!
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You guys crack me up...these conversations go everywhere..from Hungary to "S**ht...in like two seconds.
Hey Monika..hope you feel better soon. Are you excited for your first fill?
cc4npg...sorry about your youngest..poor kid..that's alot for someone that age. I have a niece a little older than that that carries the brac gene also..plus has a heart condition..if it helps any she is fine and in perfect health!
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I have to apologize for mentioning money and health care.
I have been told that if I have a mastectomy with no lymph node involvement, I cannot get radiation. I assumed this was the general case and have been told so several times. Yesterday I met with a new ONC who said that due to the location of my tumor (under arm, close to chest cavity and lymph nodes) that it is a possibility. I was looking at the cost of radiation to help increase my odds if I had to. My docs thought as a french canadian that my insurance would pay for the BRAC1-2 tests, they won't. I think it might be good to know before surgery choice is made. 0 -
PinkPeeCA: The worst part of this disease is making all these difficult choices.
From my research, radiation is recommended for Mx patients with 4 or more positive nodes (perhaps less with trip neg), or a tumour that is close to the chest wall or skin surface. I know a few women personally who have been in this situation. So the idea that Mx precludes the need for rads is false, false, false. It depends on the individual.
Do you have family history? If so and BRCA testing is warranted, I don't understand why insurance wouldn't pay, but then I'm not familiar with the U.S. system. I also don't understand why being French Canadian would have anything to do with it at all! The only cultural risk factor is having Ashkenazi (Eastern European) Jewish background. This is from the National Cancer Insitute web site: "The likelihood that a breast and/or ovarian cancer is associated with a harmful mutation in BRCA1 or BRCA2 is highest in families with a history of multiple cases of breast cancer, cases of both breast and ovarian cancer, one or more family members with two primary cancers (original tumors that develop at different sites in the body), or an Ashkenazi (Eastern European) Jewish background."
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Hi Monika! Sorry your procedure hurt. Did you have that done because you are BRCA 1? I think that is good because ovarian cancer is very difficult to diagnose. I hope your fills go well on Monday. I am feeling well and start radiation tomorrow.
Pink pee: About your BRCA tests, if your insurance company denied it, did you appeal? Because mine first denied me, then my doctors office wrote an appeal letter and it worked! I was able to get tested.
Luah: That is interesting information that you quoted. My BRCA test showed I have a mutation of unknown significance. I have breast cancer on both sides of my family. My grandmother had both breast cancer and colon cancer. I guess that would be 2 primaries? I am starting to think my mutation might be one of the harmful ones.
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I just wanted to pop in to say hello.
Monika - sorry that you're hurting, hopefully you'll start feeling better soon. For now, rest, rest, rest.
cc4npg - sorry to hear about your youngest. My youngest has a rare neurological disease. It is especially hard as a parent to see our children struggle.
Hope everyone is well and enjoying the start of the Holiday Season.
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Hi All - just wanted to pop in and share some news with people that can appreciate it more than most. I got my PET results today and there were no other hot spots besides the tumor and the one lymph node that I've already had biopsied. I feel like I won the lottery as I had spent the days since diagnosis imagining that it had gotten far beyone the lymph node that was positive. Anyway - I know there's no guarantees but I am relieved at least for now. See my oncologist tomorrow and am hoping to get a port and start chemo next week!
Just curious - is testing for the BRCA genetic stuff standard? I haven't had that yet but plan to ask about it tomorrow at my appt.
MonikaV - a friend of mine had that surgery last year - she too felt the recovery from that was worse than her dbl MX. Hope it eases soon!
Donna
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hello everyone. Just wanted to pop in and say hello. I had my 18th out of 28 rads today. Tomorrow I will have number 19. I will only have 9 more treatments left. So far no bad SE. Little itchy, little red. Nipple sore to the touch. When I am done with rads I WILL BE DONE with all of my treatments. I am started to get VERY excited about being done. I wish everyone happiness and wellness during the holiday season.
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dlcw: That is great news about your PET. Good luck next week with your chemo!
Swanny: It's encouraging to hear you've gotten through rads with no bad SEs. Hopefully it will remain that way. How nice to almost be completely finished with all treatments.
Laurajane: How are you? I've been thinking about you and hope you are having a good week.
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Hi everyone. Just wanted to say hi. I've been reading all of your posts. This is definately an active thread. Well, I'm not Hungarian and my bowel movements have been pretty regular so I don't have much to add to the latest conversations...lol. Every day is a whole new ballgame on this thread...never a dull moment you with gals.
cc4npg - sorry to hear about your youngest daughter's BRCA results. With all the research being done, let's hope someday soon that they find a better means of early detecton or they develop medications for TN like Tamoxifen that can help prevent an occurence.
I'm taking tomorrow off as a vacation day. I can't wait to have a day all to myself. My DD is turning 11 so I have to get things ready for the birthday party on Saturday.
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Hello everyone:
Thank you to Kitty Kat for posting some tips on chemo.My surgery (lumpectomy / SNB) is scheduled for the 20th. But the oncologist told me that given my age (turned 38 yesterday) and TN status with grade 3 that it was unlikely I would dodge the chemo bullet.
Some other questions I had--it sounds like most people do a dose dense regimen AC / T...is this pretty standard? Is it the same for TN as for ER/PR/Her2+ ?
Thanks for keeping me so informed ladies!
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I did CTx4 every 3 weeks
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Slcst1- I think the decision to have chemo is based on your tumor size and the fact that you are TN. I had 2 areas in my right breast, one IDC one DCIS totalling 1.7cm. I opted for a mastecomy and am doing chemo TC x4. You might end up with just lumpectomy and radiation, but being triple negative makes me think chemo. I am certainly no expert and may be wrong. Only your oncologist can tell you for sure. Please keep us posted and best wishes!
Tiffany
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Hi DCIL and Moe 2079: Welcome to the exclusive club no one wants to join. I found mine 9/22, after three tumor boards (lots of doc friends) neoadjuvant was the choice. 4 x dose dense CA just completed, New exam yesterday and the tumor cannot be found physically, under left armpit, by lynphnodes and chest cavity. I start Taxol on Tuesday to be follwed by Zometa. 4 x dose dense taxol and6 month infusions of zometa plus pills. New news that Zometa may prevent re0currence and bone metasis. Then they will do surgery based on BRCA results. I just found that even with a mastetomy that I may be elgible for radiation and will do so if I can. I also have a 10 year old daughter and 14 year olds son. Blog about personal issues, little irreverent at http:pinkPeeCa.blogspot if you are looking for some top tens and humor. Good luck to you all and thank goodness for the upbeat mode of this serious discussion board. I feel like I know the woman who particpate and that I am not alone, neither are you.
SLCT> Three docs her in NO. CA feel CA+T dose dense (based on size and mine was 2cm) is the most effective protocol) Obviously they may find no cancer when you get to surgery, but the location is what will determine radiation post surgery. Good Luck. K
Lynn 18: Yes, my insurance denied it as there is no breast cancer in fam. But I opted to pay and fight after this weeks information. Clearly we need to know, and the sooner we establish a history of this mutation, the sooner their will be standard protocol for testing. (and prevention of unnecessary ovarian cancers. I will fight with Anthem as well. They just got hit with a suit for denying 20% of claims vs. the national average of 5-7%!
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Luah> I am reading these backwards! New news, google French Canadian and Triple Neg. 20+%. I see a trend.......It does says "certain provinces", and yes, thats me. I also tested positive with the Tay Sachs gene (Ashkenazi Jewish) and I am Irish Catholic from Boston so someone was messing around! Granted, you can find almost anything on the web. I stick to NIH, and Mayo and this one of course. K
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