Calling all TNs
Comments
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Karen and others who live along the East Coast: Holding my breath that the monster storm somehow misses you. It looks so seriously dangerous. Good luck. Jan
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Ditto to your post Jan.
And to all the rants... rant away. I think I have ranted on every thread at some point, somedays the same rant... but boy does it feel good. We all need to be able to have pity parties - and we will always bring chocolate, martinis and whatever else you want. (((hugs)))
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Melissa - I am a few months post treatments and I was having a lot of anxiety not knowing anything, so my MO used a few symptoms I've been having (coughing and weight loss) to order a CT/PET scan. Otherwise, they don't do scans here either. I had it Tuesday and haven't gotten results yet even though he said it would be 48 hrs for results. I don't know if I should call. I am guessing no word is good. I just want to know it is all gone so I can hopefully move on.
I also still have neuropathy in my feet and hands from Taxol. Taxol was the WORST! AC was much easier for me. I am started to get used to the tingling feet. I may have to live with it since it has been 6 months since taxol.
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OBXk - Thanks so much for your response, it's just nice to know someone is listening. I made an appointment with my Family doc for next week. Hopefully I can get some help there.
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Hope everyone who is in the path of Sandy, stays safe!
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Note: RANT......
So I just finished my 4th week back to work and with Hallowe'en coming up this girl on my team sends out an email to my whole team including manager and says "I think we should all dress up in pink and put on make ourselves bald and go as the pink ribbons in honour of Meredith". ARE YOU F*$KING KIDDING ME RIGHT NOW?! BALD?! Not to mention the fact that when I came back to work I wanted no special anything, I just wanted to come back and move back into my role. So why would I want to parade myself and my team in pink let alone bald. Work has been my "safe" place where I can just come and be me the Social Worker and not the "cancer patient" or anything else and I feel like she took that away from me these last 2 days. AND....while I was off a worker on another team died of cancer. So why would we parade ourselves and trigger everyone in the agency?!
I cannot move past the bald part. It's just SO wrong and disrespectful on so many levels. You can't say things like that whether it's an illness, a racial thing or whatever. MY GOD!!! And the best is she sends this from home and hasn't been in since she sent it on Thursday. Also she sends a follow up email 2 hours later saying that she hasn't heard anything about the "pink ribbon idea" so could someone please get back to her because Hallowe'en is Wednesday. GRRRRRRR!!!!!!!!!!
I have been sad, mad and all that for 2 days. I just can't get past this. You can't fix stupid.......
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Oh born.. you really cant fix stupid eh? Cant you respond to her and politely point out how offensive and sad her suggestion is? I am sure as a social worker you can do it in a very 'gentle' fashion. Otherwise a slap upside the head can work too
Grrr!I was at a workshop for my job yesterday and a manager who I haven't seen since being dx'd actually, after a little chat and bear hug from her asked me if I was dying !!! Just said not today I aint.
Yep... you cant fix stupid and they walk among us and sometimes breed ?!
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Born, sorry to hear. People just don't get it. When I returned to work, my hair was very, very short. A few months later when my hair was longer, one of my co-workers commented that she prefetred my hair that length much better than when it was shorter. She sat right beside me and knew all about my situation and why I was off work. Therefore, she also knew I really had no control nor did I have a choice to wear it really short.
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Thanks so much, QueenKong - will write more tomorrow - long Onc office day today. Was quite disappointed as my blood counts "took at dive", as my PNP stated, after only one infusion of Carbo-Gemzar. Darn - was hoping my body could handle it as other side effects are not bad at all, so far. She assured me that there are other opitons for triple neg. - I was hoping we found the magic bullet - oh well - will keep trying. The good news is that I was able to spend time at the beach today - yep, the beach, in Upstate NY, at the end of October - 68 degrees!
Will be on thread tomorrow
Sherry
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Does everyone have a bad experience with taxel drugs? They sound horrific - I don't like the idea of the pain in the toe nails - ouch!!
Love reading all the rants - I guess I will be doing some of my own if I decide to have chemotherapy.
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Here's a hair comment I just could not believe - especially considering the source of the comment. My rad/onc PNP occasionally sends me emails to say hello and to let me know about seminars and other up-coming events. She is very supportive and I know that it is very kind of her to take the time to correspond with me. I rarely initiate an email conversation with her as I know she is very busy. I did, however, email her concerning my mets dx. Her reply was, of course, very supportive and upbeat until the part where she stated that it was "too bad" I shaved my head as my current chemo meds usually do not lead to hair loss!!!! Even if she thought this, how in the world could she say it to me? To the contrary, my MOPNP advised me to shave my head as she knows I do not want to deal with the sporadic shedding and thinning spots that the meds often do incur. I'm glad I shaved it - one less thing to deal with and I like winter hats.
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Hello adagio - Please note that I sent you a private message. Please excuse the typos in the message - I did not proofread it before sending. (You would think I would know better as a retired English teacher! lol) In addition, my 3 cats were trying to "help" me type.
Sherry
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adagio..I had Taxol x4 treatments every 2 weeks...it was my first chemo drug. For me my toe and fingernails changed a bit in color and thickness but none came off or hurt. I also had no nausea from it just some pain in the joints and bones as well as alternating constipation/diarehhea...never knew what i should be taking haha. Just wanted to reassure you that your doc will tell you all the possible side effects but it does not mean that you will experience them all.
Leaving tomorrow for NOLA for my recon. Driving 4 hours tomorrow to stay with friends in N FL and then onward to New Orleans on Monday. 1 Full day to play then a day of pre op appt on Wed then Thursday is the big day! Will be off the boards for a little bit. Will miss you all--my lifeline during this aweful storm. A storm by the way that feels like it is finally passing on..so for all the newbies....it really does get better!! Life if waiting for you too
Maggie
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I had taxol (4 rounds) after my AC. Other then a bit of numbness at the very tips of each finger, I kept all my nails and had no issues with them. They discoloured a bit (yellowish) but stayed fine. I found taxol to be MUCH easier then AC. I felt a bit fluish (achy) for about 2 days post taxol and that was it.
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Maggie - good luck in NOLA!
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Welcome, Jag - this thread is very supportive.
Maggie - my thoughts are with you.
Sherry
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adagio, I had NO side effects on taxol. I had 12 weekly treatments instead of the dose dense shorter regimen. The overall dose is the same, but since treatments are spread over 12 weeks, the possibility of side effects are less. This is very do-able!
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Wow thank you so much for this positive info..
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born - unbelievable insensitivity with that Halloween idea from your co-worker. So sorry you had to deal with that.
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Mags thinking of you and hoping all goes well. Hurry up back will miss you.
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Hi- new here
I am 32 and am starting my triple negative battle tomorrow with chemo. I already have gone through the lumpectomy and sentinel node biopsy but it is the chemo and it's effectiveness that has me worried.
It is comforting to see a group like this exists and I am sure I will be checking it often.
Blessings to all!0 -
Monday morning giggle
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CS- you outdid yourself with this one! I am laughing soooo hard. Thanks.
Mags - safe travels and best wishes for your trip to NOLA. I hope your surgery goes well. Hurry back.
Hanging out here waiting to see what Hurricane Sandy will bring to Virginia. It is almost like waiting for the chemo treatment...that sense of the unknown and knowing you can't do a damn thing about it except take whatever precautions you can. I hope everyone on the east coast stays safe and sound.
For all the newbies - welcome to our sisterhood. You'll get amazing support here from women who "get it." Just sorry to see more added to our TNBC numbers.
Inmate and Hope - thinking of you often. hope you'll soon check in so we know how you are. Hugs.
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OMG, CS! That is hysterical!!!
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Adagio/Bishops - I will complete my 12x weekly Taxol treatments on Tuesday. Taxol was a lot easier for me than A/C, but both were very manageable. With Taxol, I have minor joint aches and numbness in the tips of my fingers and balls of my feet. The nail beds are yellow/blue with occasional pain that passes. So far, no lost nails..... Fingers crossed. Good luck!
Mags - Good luck tomorrow! We are with in spirit!
Born - Sure she meant no harm, but what a stupid thing to suggest....
CS - Hysterical!!!
Everyone - I don't post much these days but I think of you all often..xoxoxox0 -
CS - bloody hilarious !
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Tazzy - So glad you checked in. I've been thinking about you and the earthquake. That was a big one! I'm a native Californian and have been through many, yet prefer them to what the east coast is gearing up for. An odd bit of irony or some such word: My brother just sold his homes in Florida and Long Island New York, ahead of Sandy. They moved to Santa Barbara, CA in time for a brush fire near their new home. And now they are on vacation in Hawaii. presumably wondering about a Tsunami.
DH fixed me a frozen Lean Cuisine for lunch. Bubbled over in microwave. I'm going to take a nap and deal with it later.
East Coasters - hang on! Jan
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CS -cracking up - great!
Hope everyone on the east coast stays safe with Sandy - looks like it might be a nasty one!
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Has anyone here ever heard that it is better to do Taxol before other chemo drugs? I do believe I saw a study somewhere in my dr.google searches. But for the life of me, can't find it.
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Bishops - I am totally in agreement with you on the chemo issue! It is quite terrifying, and yet it really doesn't seem like there are many options for tn out there. My margins after surgery are so tiny on one side 0.5mm and this area is right against the chest wall, so the surgeon cannot really go anywhere to get a bigger margin - this fact alone is steering me towards accepting the chemotherapy in the hope that any cancer cells that are in that small margin get zapped!! Of course the worst thing is that the good cells all get zapped too and that is the worry!! Do you have a port in your chest? This is also a new thing I read about and that in itself scares me. I guess we have to let go and trust the medical profession - they are the experts after all. However, I still think it is a good thing to go in with lots of information and many questions. Let us know which drugs you have to take and how it goes tomorrow. Good luck.
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