Calling all TNs
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Good morning ladies--I am really enjoying this site! I can hear and relate to sooo many things I am hearing, it really does help to hear others are feeling the same way I am. My latest scans really knocked me off my feet! I really felt I was going to have good scans, and it just didn't work out. I AM a fighter, but has been a LONG journey, and it just wasn't how I pictured this summer. But I will do the chemo, and whatever else the doctors ask of me, I am holding out for the cure!!!! Kimn, I would love to get to know you better, too, and hold on to that hope and good feeling about your prognosis, you are doing all the right things!! Stay positive, positive, positive!! And when you can't be positive, take a day, a DAY, to have a pity party, cry, do whatever to get it out, then pick yourself back up and put those fighting gloves back on! Aimee, hugs and prayers for you today, stay strong!!
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Just wanted to pipe in ... PARP in hibitors!!! are a new drug!! So ask your docs... where ever you are. Dana Farber def. should have that stuff. Also anyone near Marga Massey should check out her web site... she does stuff in New Orleans as well as South Carolina!! Great Surgeron.. Lots of info about her on this website.
Remember to ask about lymphadema and get prepared for that before surgery. No matter what the docs say get the info.. Almost all of us TN have chemo before to shrink the fast growing monster.. it usually works very well. The PARPs can be used before or after!! So ask.. ask.. ask..
Make sure you ask for the CTC blood work Circulating Tumor Cells or something like that. Just say CTC and they SHOULD KNOW WHAT IT IS. IT IS A NEW BLOOD TEST ALL THE BIG DOGS ARE USING.. VERY ACURATE... Good luck to all. TN is scary but all of it is doable!!!
Educate yourself. Noreen Fraser web site Stand up for Cancer has info.. Triple Step for the cure as well. Lots of these people will answer questions for you.. Dr. Melind Telli is an expert TN she is in CA.. she will answer your e mails!! Very nice!!! She has been working with PARPs for a while now!!
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Parp? CTC? What's new about those? Have I missed something?
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kathrynn - welcome, although I am very sorry you are here. Neo-adjuvant is becoming more common, especially with TN. It is a good way to judge response to chemo, and gives your doctors the chance to switch things up if the first isn't working.
Lynn - congrats on your son graduating! You must be so proud. I totally understand the meltdown, it must have been building for awhile. Be gentle with yourself, and let them come as they come.
rella40 - I'm sorry to hear about the less-than-good scans. That sucks! I hope your next round of chemo treats you well.
Heidi - I believe Towny is recommending that we TNs look for a PARP inhibitor trial to participate in, as they are showing some promise for us, although more so for BRCA+. They are hard to come by unfortunately. The CTC is an experimental test that a few hospitals are using - Mass General is one - that can locate tumor cells in the blood. They are hoping that it can prove useful for determining which chemos work, if there are extra cancer cells floating around that can go metastatic, etc. I'm on the fence about that one - I don't really want to know about CTCs if I'm not Stage IV (head in the sand). Also, it has been suggested that everyone has cancer cells floating around, but not everyone gets cancer. The CTC can lead to overtreatment possibly. Anywho...
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Guys, I'm getting nervous and scared about my liver MRI. I had sharp twinges all weekend, and I feel like I'm a little bloated and tender in the area, though that could be from me poking at it a lot. If I didn't have cancer, I would say gallbladder, especially as it seems to start after eating. But ugh. I'm hoping they will schedule it for this afternoon or tomorrow, but am waiting to hear back. I'm trying to keep busy.
Moving forward with our car purchase! Have a mechanic going to check it out this week, and as long as there is nothing catastrophic with the engine, I'll have it this weekend! I'll definitely post pictures! It has been a nice diversion, and something DH and I will enjoy together for a little alone time
. Plus he likes to work on cars, yay!0 -
Suze, deep breaths. As my onc says, we can still get all those ordinary (non-cancer) things after BC... just good to stay on top of symptoms, which you are. Also, I don't know about you but while waiting for scans and results from scans, my head did a real number on my body, I felt all kinds of tweaks and twinges... and they mysteriously went away after the all-clear. Fingers crossed it's the same with you.
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Luah, thanks. I'm trying to remember that these things can overlap, it just sucks that the symptoms are often the same!
I'm meeting with my doctor tomorrow AM and she'll check my liver functions and order an MRI. She is also working my insurance company over for the Avastin, should have an answer from them by the morning. She asked for 12 weeks to see if it helps, and if not, we can stop it.
She told me "pray for gallbladder problems!" - yea, cause I'm hoping for liver mets. Sheesh! I do love my doctor though.
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Suze- yep, that's what I had heard also wrt Parp and CTC. So, nothing "new" per se.
Good luck with the MRI... always something to think/stress about with this disease.
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Hi All:
No pains other than an occasionally stress headache, but I do worry about the what if.
Argh, but such is life.
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every pain I know have freaks me out. Can cacer grow while doing chemo???
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Kymn: Some cancers can respond and then start to aggressively grow again, though this is usually not the case in many of us. This is why the onc & bs keeps such a very close eye on us. I think it is very important to report anything that seems out of the ordinary or that is new. Mine was continually checked and it kept getting smaller. This is what we all hope for--a good response.
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Kymn..you are having the neulasta shot right?..or if you aren't..chemo can cause alot of different aches and pains...taxol but not AC caused alot of leg pain and arm/shoulder pain..also pains in my abdomen...I would just ache..it was like having the flu...my skin hurt...it wasn't unbearable..it was just there...
Suze..praying for gall bladder problems for you..or can I say this out loud..maybe just GAS????
So..this CTC test..how do we go about getting it?
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Oh and hey to you Kathryn..glad you joined us..
Research on TN survival..seriously..I haven't found much research on this...on this board it states we have pretty much the same surival rate as the positives do..Our issues are the fact that we reoccur earlier..oh yeah and we all know that it's not good for us if we do that...facts are facts so we all need to just hang in there and hope for the best.
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Titan - oh I'd take plain old gas in a heartbeat!! I swear if this scan comes back clear, I will stay away from the MRI machine for at least 3 months, lol. Unfortunately, I have a bad feeling about this one...too many symptoms, not enough options. Sigh, each day is an adventure.
Kimn - stay on top of anything different going on. If you are concerned that your tumor isn't getting smaller, push for an MRI. Don't let them put you off. I let myself be placated at the end, and should have pushed harder to move my surgery up. But mets while on chemo that can cause pain would be very rare - and chemo plus Neulasta really messes with your body. I'm sure what you are feeling is very "normal." Just be vigilant and you will be okay. Only 2 more to go!!!0 -
Heidi - I should have "Titanic" tattooed on my chest, lolol. You find the best pictures!
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MBJ -Last week, I had to stop at treatment 5 of 6, due to neuropathy. Always something!
Wishing you well, Karen0 -
Kymn- Just stay positive. Also I was told to stay off the internet unless you are on cancer.org or breastcancer.org. Too much false info out there. good luck stay strong!
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So I have a start date, and a chemo combo - yay!
My doctor isn't convinced I'm having issues with my liver - the pain I pointed out to her is too high. She also couldn't feel my liver at all when checking it, so it isn't swollen. She is leaning towards scar tissue - huh, wha? But I'd take that! Anyway, she ordered a CT from neck to pelvis because she does want to check everything anyway, including my lungs. That should be tomorrow most likely. I'll know about my blood work by the end of the day.
She is also having my original tumor checked for EGFR, and one other (can't remember the name) but she said both have more targeted drugs that would be helpful even if I do progress. Because my pathology is at Mass General, she said it will be easy to get it done.
On June 20 (my birthday, yay me) I will start Xeloda with Avastin, and we will add in Iexmpra on June 27. It is very aggressive - and I appreciate this. Her rational was solid - we both see where this is heading, but she is in the camp that if we catch it very early Stage IV, and hit the right chemo combo, it can put me into remission for a long time, and dare I say it, maybe for good. Studies are showing that treating aggressively initially with Stage IV is improving survival benefit. I'll take all I can get.
Will keep you posted about my scans! I'm not convinced it is as simple as scar tissue, but whatever. I'll know soon enough.
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This dx is very complicated, confusing, and unforgiving.
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Suze: It sounds like you are in excellent hands! Kudos to your docs.
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Suze35 you are in good hands. Fight hard and take care of yourself. We are here when you need to vent.
Dare I say treating aggressively at any point w/ TN is the best approach.
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Suze - sounds like a good plan for your treatment. Fingers crossed the scans show nothing!!!
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Here's a link to a good brochure all about TNBC. I found it interesting and learned a few new things...
http://www.tnbcfoundation.org/State-of-the-Art%20Treatment%20for%20TNBC.pdf
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Hi ladies, been lurking a bit lately but following the trials and tribulations of our TN sisters. Last year, tomorrow, was my last and final chemo treatment. The date burned into my brain. I just kept thinking all those months: If I can just suck it up until that LAST round... So for you ladies in the midst of it, or starting your chemo journey, it ain't no picnic, but hang in there!!
kathrynn: I also had neoadjuvant chemo and wasn't every really staged - fortunately because the chemo shrunk my tumor to nothing dead cells by the time surgery came around. I too had whirlwind diagnosis/treatment plan; was at the Mayo, and they got quickly to the business of gathering data and resources, conferencing my case clinic-wide (I had a somewhat (in)famous badboob for awhile), and keeping me so busy but reassured that the time went quickly. That helped, or at least helped me. You're at a great facility!
kymn: I too worked through chemo, which kept me from sitting at home and overthinking it (my tendency). Some nurses questioned me about keeping up full work (& travel) schedule; actually made me question myself! But my rockstar onc pointed out that, being young (as we both are), we can tolerate chemo probably a little better than an older BC (mostly non TN) counterparts - so encouraged me on doing what I felt I could do. I didn't always feel like clicking my heels down my firm's hallways, but it was good to have the routine and keep my mind busy. Although I admit, some days, I would sit in front of my laptop screen, guzzling gatorade, deep in my chemobrain fog
I see pictures of myself from a year ago, rocking a Michelle Obama-ish wig, and I thinking, wow, absent the non-existent eyelashes and brows, you can't even tell I was sick and tired. But I was. Was I in denial? Maybe a little. But getting up, working, getting dressed up, helped me cope and feel occasionally 'normal.' (with, of course, the help of miralax, the miracle drug) LOL
Best wishes to you all for a SE free week.
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Suze: I love your dr's and I am glad you now have a plan. Hoping your scans are all clear and you can move forward! Hugs!
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Suze35: Your doctor sounds smart--we do need to be very aggressive with TN. I like her plan. I am sending you positive thoughts for clear scans.
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Hi ladies,
Swift bird thank you for the encouragment. I have wanted to give up and stop at 4 treatments instead of doing all 6.I just hate the depression and sickness and I want my hair back damn it. I want my life back. I am today sitting here at work very tired but your right if I was home the whole time I would prolly be deeper in depression than I already am. I do tend to over think.Although there are certainly days when I really dont want to get my lazy butt out of bed.
I had my tumour removed so I am not worried about it growing but was just wondering if cancer can grow somewhere else during chemo. I am guessing yes ? Was just curious I wasnt sure.
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McCrimmon324,
I'm sorry it took so long to see your post - please feel free to PM me anytime you want - I just had my fifth TAC treatment on the 23rd with one more to go. My side effects have been mostly limited to 6-7 days following the infusion. I am self employed so I usually go back to work full time about day 7 and work every day including weekends until the next treatment. I shaved my head before treatment and it hasn't grown back at all except tiny stubble. The chemo has caused a lot of stomach upset - acid reflux (I'm on 3-4 prilosec daily now) and nausea - (for about a week) - I take Zofran every 8 hours when it is bad. I've had numb fingers on my left hand only - no problems with feet or right hand. Days 3-4 I am extremely weak - usually there is one day I miss a shower. I've had some facial tingling that goes away - and hot flashes - I'm in "chemopause" at 50 after regular periods before treatment. This last time I had some minor skin bumps come up about Day 8. It is very hard, but necessary - but it is also definitely doable.
Stupidboob, I get neulasta - it causes bone pain for me so I take hydrocodone for about six days each cycle (just 1/2 tablets x 4 daily) and I'm fine. It has definitely helped my counts even though I've gotten low 3 times but bounce back more quickly.
Welcome, umater, blondelawyer, and rella40. I'm sorry you have to be here, but you'll find a lot of information and support from all these wonderful women.
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Suze35,
I hope everything goes well for you - and it sounds like you are in excellent hands with your doctor. Please let us know as soon as you hear something on your MRI.
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christina1961 - Thank you for the reply. I still don't have a start date but my oncologist appt is Friday along with my "chemo" class. Did you drink alot of water and exercise on the days that you could? I'm surprised you have stubble, I thought TAC was so aggressive it would take a long time before anything would sprout. I'm really nervous about my hair, I know it's going to happen and I know that it's going to grow back I'm just terrified of my reaction when the time comes to shave my head. I have such anxiety, I'm afraid I'm going to have a meltdown. That this is going to become "real" for me. Thankfully, dr is giving me xanax, seeing a therapist on Friday as well, and I'm looking for some anti-depressants too. I know I sound a bit crazy I just think it will help with the stress of everything.
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rella40- you sound like an amazing women! You have found the right place......welcome!
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