Calling all TNs
Comments
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Thanks for all the well wishes on the storm damage. Still haven't gotten down to Hatteras. It just opened to non-resident property owners, by ferry. Last week, I stayed with a friend who is in end stage of liver cancer. Dx last Sept. - they never found her primary. It was hard not to sit there, thinking one day, this will be me. CANCER SUCKS!
I decided to get the BRCA testing. They had to stick me 3 times to get the sample. 2 week wait. Seems we're always waiting!
Wishing you all well...0 -
OBXK dont say that! Stay positive, we are NOT gonna let this cancer get us!!!
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Hi All,
I just wanted to share my good news. My test blood test results from my three month oncology check up came in and they are all normal:) Yay:) Now I can exhale for three more months! I am trying really hard to go about my life "normally" and focus on my recovery. I wish those of you still struggling with treatment and recovery well!
Take Care,
Lisa
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Lisa - great news! Living in 3 month chunks isn't a bad way to start... soon you'll find yourself doing 6 months, then a year... one step at a time.
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- Ooohh- I am so jealous! I have never been to NYC. Somebody please take pictures and post them please!
I've got my next 3 month check up coming up later this month. I have some tender spots on my ribs, but can't tell if it is bone or muscle. I have no pain (other than usual low back pain) unless I push on the spots. Should I ask for a scan? Which one? I have only had a CT before chemo and nothing else.
Thanks for your input ladies- Happy Tuesday everyone!!
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My PET/CT scan is scheduled for 9/19... one week.
Tif - I have/had a lot of tenderness still from rads, it is pretty normal. If you feel like you want a scan, CT is probably good, maybe a bone scan? But just to give you peace of mind, I think tenderness can go on quite a bit.
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Suze- Thanks. I didn't have rads though- maybe leftover chemo issues?
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TifJ
Wouldn't have any idea why it wouldn't be okay for you to ask for whatever you need to help you in your journey with this. You're certainly not putting anyone out because you need or want a scan to make sure things are okay. You ask your health care providers for anything you feel will help you pass through all of this. You have good reasons to be concerned right now and I'm sure they will completely agree with you. Keep on keepin' on.
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Tomorrow's my annual mammogram. Last Sept. was my first one out of treatment and cancer boob was fine but they found something to watch on the other one. After checking six months later this past March, it was deemed benign and back to annual checks. To get me on a coordinated schedule, my doctor is having both done this time. Wish me luck!
LJ - you look fabulous in your photo!
Take care...I hope everyone is having a good week.
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Lisaorock - great news! Enjoy it.
TifJ - I agree with Jazz3000. Hope you too, get great news.
Titan - 4 inch heels? I am green with envy.
KSMatthews - you are right! It was a momentary low.
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Last night, I fell and broke my kneecap and banged my face, resulting in an ambulance ride and emergency surgery. This pain, rivals childbirth. Tomorrow, I have to stand. I am so fearful of the pain. I have allergies to a lot of pain meds. It's always an issue. If you have some spare energy , send it my way tomorrow!
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OBXK - sending you healing vibes!
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Oh OBXK, I'm so sorry. I've had knee surgery and can sympathize about the pain.
Ladies, I had my 4 month check up today, only blood work, and all was well. I had tender spots on my ribs, and have had an upset stomach, and of course I still have pains in my breast (lumpectomy was 4/10), but I was actually just fine.
My Doc, who is an Onco. and Hematologist, and a PH.D in genetics, said to me "I tell all my triple negative ladies to decrease their calorie intake by 25%, and cut out alcohol." He said he thought that limiting calories and alcohol was as effective as the medicine the hormone positive ladies take. I quizzed him about the alcohol, and he did say he thought one or two glasses of wine a week was "probably okay".
I'm already "normal weight" so he told me to watch the calories, and stay slim.
I'm just throwing this out to all of you, in case it could be helpful, but of course different Oncologists have different views and ideas.
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Yay for B9!!!!
Sugar: Great new avatar!! You look beautiful!
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obxk so sorry to hear about your fall! Praying for a speedy recovery.
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Titan - I'll look forward to getting some leftover champagne, but I'm guessing after all of the planning and stress that goes with a wedding you may not have a drop to share
LJ - Have a wonderful time in NYC.
OBXK - Ouch, I am so sorry to hear that you broke your knee cap. I've never heard of that. How do they repair a broken knee cap? Pins? Sending you a big cyber (((hug))) and positive vibes....
Mitymuffin - Yipeeeeeeee, so glad to hear you had a great check up.
Sugar - Good luck, positive thoughts headed your way.
Tif - If you are going to ask for another scan, ask for a CT scan. CT scans have caught everything for me. After the CT scan, if the onc needs to see something in more detail he orders a MRI.
Shoes, did someone says shoes? Shoes, boots, sandals, oh my....... Which ones do I love more? Yes, I always need another pair of shoes. Just because I have 5 pair of black heels in the closet doesn't mean I have a black pair like these.......... Can we talk purses? I can't go into a store without at least doing a mini walk by.......purses are like shoes we never have enough.
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Hello everyone - I'd like to thank all of you for the support you have given me since I joined your thread. Please keep me in your prayers (as I do you) - Round #2 of T/C begins this Friday, Sept. 16. This time I am prepared to eat tons of All-Bran cereal and take many Pericolace (my oncologist told me that I might need to take 2 in the AM and 4 in the PM!) during the first week. I hope for no C/D.
I am determined to finish my Master's Degree next spring and "walk" on May 20, 2012. Today I filed the paperwork to graduate. Because having cancer is considered a medical disability, my PCP submitted documentation and requested extra time for assignments, relaxation of the attendence policy (if I am side-lined by SE), and recording of the lecture/discussion if I cannot make it to class. I will be turning my first homework in shortly, on-line, on-time! Also, because I applied and received a temporary handicap state parking tag, I was permitted to apply for one at my university, so I will not need to walk so far, up-hill, to class. I will be able to park close to the building where my class meets every Wednesday evening.
So thanks so much for everything, ladies. Best and no SE's!
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A little humor:
An elderly man in Tennessee had owned a large farm for several years. He had a large pond in the back. It was properly shaped for swimming, so he fixed it up nice with picnic tables, horseshoe courts, and some apple and peach trees.
One evening the old farmer decided to go down to the pond, as he hadn't been there for a while, and look it over. He grabbed a five-gallon bucket to bring back some fruit. As he neared the pond, he heard voices shouting and laughing with glee.
As he came closer, he saw it was a bunch of young women skinny-dipping in his pond. He made the women aware of his presence and they all went to the deep end. One of the women shouted to him, "We're not coming out
until you leave!" The old man frowned, "I didn't come down here to watch you ladies swim naked or make you get out of the pond naked." Holding the bucket up he said, 'I'm here to feed the alligator.'
Some old men can still think fast
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LOLOLOL good one. I bet they moved fast after that statement. Thanks for always making us laugh!!
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LMAO!!!!!!
flautalee: Yes!!! Go for it-you can do this!!!
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thank you Heide...I finally laughed on a morning I have done nothing but cry.
Maggie
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(((((((((((((MAGGIE)))))))))))))
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Well Obxk - I always say if your going to do something do it right, and it sounds like you did just that. Wishing you well in prayer and thought. Hopefully it works to get your dishes done and your floors vacuumed while you supervise. LOL
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Hey Ladies, just a quick question for you. I'm sure this belongs on the chemo thread but I'm pretty sure everyone here has been thru or going thru chemo. I've got my last chemo next thursday, so I'm still in treatment. On Monday I had a fever or 100.5 and called immediately, they put me on Cipro, other than the temperature I feel fine. It hasn't gone up that high again (taking tylenol) but I called the nurse again today because it remains in the 99.?? range without the tylenol. She said it's just my body fighting something off and just keep taking the Cipro, it will run its course in a couple of days. Now, I was sick last week, tummy and diarhea issues, I assumed from treatment but I guess I could have caught something and my numbers were good last week, due again tomorrow to get checked. Anyway, I guess I'm just freaking out a little bit, I'm not used to having fevers or temperatures. Sorry I rambled, I tend to do that all the time. Also, could this have anything to do with chemopause, my hot flashes and night sweats are horrible. They seem to have gotten worse over the past couple weeks.
Thanks for any input.
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Well I had my pre-surgery consult today and will have my right breast removed friday. I was under the impression I had one tumor in the breast and she said no there were three. She also told me the intent is to remove at least ten nodes from under my arm but not more than 20. Say what? Guess the pathologist will determine to what extent the cancer has traveled and though the biopsy of the node that is swollen didn't show any cells they are pretty sure the cancer is there. Okay...but why 10 nodes or more?, if only one is inflammed? I'm not to use my arm for 2 weeks, and then I go to physical therapy and to another specialist on lymphadema? I will then have a 6 to 8 week reprive and begin 2 kinds of chemo. AC and something else. ( Still catching up and am unsure as to what the other one was.) I asked if I was this triple negative and it had no hormone receptors if it was possible to use hormones? NO! Okay I'm confused? This type of cancer is not caused by hormone therapy but it's a bad idea to use them anyway. as other types of cancer are. I think I get that. Add another cancer to the list and I am really in trouble. Just waiting and cleaning house and preparing for the oncoming invasion to my body.The surgery and loss of the breast doesn't scare me but the thought of the chemo after is starting to sink in. Okay mine is not curable but it is treatable. Hmmmm??? LOL well I have to say I admire all of you at the otherside of this as I 'm knowing you've been here and done this. God bless and keep you. Keep on keepin on.
mccrimmon324 - I'm sorry your going through all of this worry and concern. Your in my prayers and thoughts, and here's hoping it is just a bug that's setting you back this week. We do get sick on occasion. Did you ever think you'd be happy hearing, "You've got the flu." Feel better.
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Jazz, have you already had a sentinel node biopsy that came back positive and that's why they're taking more nodes? Otherwise, I got nothin'.
As for the 'curable' vs 'treatable', I think that's the 'new' tendency in terminology. Some docs still use the word 'cure', others refuse to because BC doesn't conform to the 5-years-without-relapse-and-you're-considered-cured mantra so common with other cancers. You can be cruising along at 10-15 years out and suddenly find out you have mets. Triple-negative BC is more likely than hormone-receptor positive BC to pop back up as mets than as a local recurrence as well.
It scared the bejesus out of me when my BS told me that they didn't like to use the term 'cured' for BC any more, and that if this thing kills me, it will be mets that do it, not the tumor in my breast. He went on to explain that my odds of a recurrence or mets continue to go down the further out I get from diagnosis, but that there aren't any guarantees and he didn't want to give me false reassurance that I'd never have to worry about it once I got to the 5-year mark.
Also, if a TN tumor does recur, it usually happens in the first 3 years from diagnosis. And after 5 years, our chances for a recurrence drop below those with hormone-receptor positive tumors.
One more thing - TN tumors are overwhelmingly grade 3 aggressive, but that also means they are more susceptible to chemo as more aggressive tumors tend to absorb the chemo better than slower-growing tumors.
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Hi to everyone, haven't been well lately. Feel like i've been hit by a bus, reaaly run down and so tired. Is this normal three weeks after last chemo?
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Hi BernieEllen,
Just read your post...Taxotere made me extremely tired and by the 4th cycle SEs dragged on for ages..and now after 4 weeks out, although I'm generally well, my legs still feel really heavy and I climb up the stairs or walk uphill as though I was at least 100 years old! What chemo are you on?
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BernieEllen- heck, I'm two years out from tx and didn't feel like I had sustainable energy until about 18 months post tx. Frustrating, but it will get better.
As for "cure"... my Sloan-Kettering BS used that word, but my (local) onc defers to a 10 year time-frame. He agrees with the 3 year recurrence consensus, but likes the 10 year to feel totally reassured.
Let's face it, every year you continue to live is a win-win... who needs time-frames?
Maria- that's exactly the way my legs felt too--- like they were made of lead.
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Thanks Riley. I had 3 biopsies. The first showed cells, and I was sent to a surgeon within 15 minutes after the patholgist did the aspiration. The surgeon put me on a table and did a series of 12 core samples. They told me to come back in the next day as the radiologist had to do another series of small needle aspirations and sure enough she did with the help of the ultra sound tech. She pulled me into her office and said we've found cancer and your to be here in 3 days to meet with our team and the surgeon who will help you from there. In that three days, I had a series of blood tests and a nurse who did a scan of my heart with a speciaal dye. The diagnois I put on my profile was the first biopsy they did and it's results?
I met with the surgeon, the oncologist, the radiologist, a social worker who specializes in BC and two nurses in their surgery department. (Everyone of these specialists are women), and they gave me a load of info and a surgery date.Yesterday was the first one on one I had with the Doctor and she explained all of the info I shared on my previous post. I asked about being TN and she confirmed it, and said there are many unknowns with this type of BC but what they did know was it was invasive and they would hit it with everything they had and if it pops up somewhere else we would deal with that as well. She didn't leave me feeling hopeless, but more so aware this isn't going away any time soon and that the diease may not be cureable but my life would be extended because it's controllable within limits. How I chose to live that time was up to me, but they would be there.
I'm still trying to catch up with and piece together the change in vocabulary this all brought on. Terms I've never heard and how they fit this particular cancer would take a six month course in college. I went from metaplastic to Triple Negative in a few weeks and am hoping after the surgery tomorrow I'll have the time to process it all.
I think all the women in this team have connected with each other because they've all been touched by or had BC. As I was passed from one to another it was like they tagged each other and moved me through a medical system that usually requires days, weeks and months to get through. They were so well syncronized that I'm left going what just happened here. Haven't had a lot of time for self reflection or fear. I don't understand it all but I feel very sure their doing what they collectively feel is what will give me my best shot at future health. They were familiar with this site and happy I was here,
I get the feeling Bette Davis said it best with her famous, "Fasten your safety belts, it's gonna be a bumpy ride." , line.
Still and yet the carpet cleaner is on his way so my carpets are clean and all is sterile on my return from the beginning of this "Great Adventure". Very very grateful for you all and your guidance and direction in all this. Women are a wonderful species.
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mccrimmon, just read your last post....after my 2nd and 3rd Taxotere I had diarrhoea for a few days, and also temperature of about 100 F for one or two nights after about one week after having taken chemo... didn't have an infection and am pretty sure it was a SE.
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