Calling all TNs

Meadow

Geeper, Loved your happy post. Makes me happy that you and your family are doing so good. Yoda! lol

Bethdawn, Hang in there. And yes I agree 100% with Jen, do the PT. It helps so much! You will not believe how much better you will be. It will get better, I promise!

CarolinaAmy

jenjenl, I'm insanely jealous of moving to Charleston. I met my husband when he was stationed there as a squadron commander, and we got to live there for a year after we were married. I think I left part of my heart there and have told hubby many times that I still want to go back someday. It's one of my favorite places on earth.

HausFrau... I think we're living twin lives somehow. I'm originally from Pennsylvania, husband went to Carnegie-Mellon and is a rabid Steelers fan; we got married and lived in Charleston, SC; then we lived in Germany for two years while he was stationed at Ramstein (our daughter was born in the German hospital there and has dual citizenship); now we're settled in Charlotte! We must have passed each other on the road somewhere as we moved around, LOL.

Thank you all for reassuring me about possibly having to cut treatment short. I really hate this but understand why. Oddly, while the neuropathy hasn't worsened in the last several days, the joint pain in my hips and knees is VICIOUS! I'm having a terrible time getting around the house and hope this is just passing. My husband seems to have a strong opinion that I should stop chemo now, which I find odd. Either he's trying to kill me off early or he has reached his limit of watching me struggle. I'll have to wait until Tuesday and see what my MO says. It's a little anticlimactic because I wanted to celebrate a bit on my last day! I'd been making plans to bring gourmet cupcakes in for the infusion center nurses, flowers for my MO, and something quite special (I haven't landed on it yet) for my MO's nurse, who has been my rock all through this. *sigh*

CarolinaAmy

ACK!!

I meant to say hello and welcome to Geeper! I'm sorry you had to find us, but this group of women is fabulous.

cassylou, I'm heading in for a DIEP on March 18. Are you happy with how things have gone so far?

Geeper

bethdawn - Wishing you well and a speedy recovery. I am on a weekly dose of Taxol for a total of 12 weeks and so far I've been doing okay. I hope you have minimal SE's from Taxol.

Meadow -  I am glad I made you laugh. Laughter is good for the soul. 

CarolinaAmy - I am sorry to hear that you are in pain, I am certain this will soon pass. Your DH loves you and I think it pains him to see you suffer, he just wants to take the pain away. Please don’t beat yourself down if you don’t complete the full round of chemo. I think that you should still continue with your plans of celebration.

Polarpegs

Hi All just new here. I was diagnosed last August after I found a lump. I had two surgeries, one to remove lump and margin. The margin came back positive for invasive cells so I had a second surgery to remove more margin and 4 lymphnodes. Second surgery came back with all negative results. I just finished 4 rounds of chemo. I was on Cyclophosphamide and docetaxel every 3 weeks. In March I will start radiation. 16 treatments and 4 boosters. I live in Canada with my husband and 5 children.

Allydp

Geeper, love your positive attitude so much! I'm so sorry for your diagnosis and that you have to join us, but sending you a warm welcome.

Cass - sending you hugs. All those surgeries aren't easy I know. I'm so glad to hear you're doing well!

Haus - Beautiful picture! I agree with others, don't let the AC stories scare you. Everyone has a different experience and there are many who do very, very well. Also, my husband and I lived in Charlotte for a short time and enjoyed it very much.

Jenjen - good for you for going after the life you want and taking that leap of faith! I'm sure you will love Charleston and have no regrets! I hope your company cooperates and allows you to work remotely. And have a wonderful, wonderful time in Hawaii! You deserve it!

Beth - welcome. I can't say enough good things about PT! It helped me gain full range of motion back and she even worked on my neck, as I was very tense.

Amy - I think you could still do something special for your team if you'd like. I gave all my infusion nurses angel wing keychains. I still pop in to visit them every now and then and some of them actually do have them on their keychains. I think they appreciate the thought and won't mind that it's not on your actual "last" day of chemo. And so sorry to hear about the joint pain! I hope it subsides very soon!

Polar - so sorry for your diagnosis, but welcome. This is a wonderful group.

Allydp

I had a 6 month check up on Friday with my gyn onc who did my prophylactic BSO/hyst. They always do a CA-125 ovarian cancer tumor marker check and physical exam. CA-125 is good, but she found a palpable node just above my left breast (cancer side) in the upper outer quadrant. It's small...the size of a pea. It's tender though because when she pressed there I winced a little, which is how she eventually found it. I'm trying so hard to stay positive and move on with my life, but these scares are too much! I was supposed to call my breast surgeon as soon as I left the appointment, but I couldn't do it. (My gyn onc is at a different hospital from my breast cancer team.) I don't think anyone will do much at this point and I don't think I can bear to call with yet another complaint. My husband is adamant I call in the morning, but I might give it a week and pray it goes down. I did find out though that the hospital (University of Michigan) has an entire pysch onc practice on campus - psychologists and psychiatrists who solely see cancer patients. I got a referral and I'm hoping to get an appointment soon.

LoveMyVizsla

((Ally)) Hope it goes down

CarolinaAmy

Polarpegs, welcome, though I'm so sorry you have to join us. Get this--I have a good friend who is actually from Kelowna, BC! She has lived in California for quite a few years due to her husband's job, but I remember this being her hometown.

Meadow

Ally, first. ....well crap! Ok, now that is out of the way, you are just outside of a year from end of treatment, we are monitored closely during the first year and even for 3 years for just this reason. ...to find areas of change and suspicion. So do not feel embarrassed or timid about making an appointment next week. You are following the advice of your team. This is exactly what you should be doing. Of course you are weary and frustrated. Your body takes monitoring right now. You have been through so much, I am so sorry. And wish so much for you to be able to forget BC. And I believe that you can one day, just not yet. Time will pass and you will not be monitored so closely. So check out this new lump, do what that sweet hubby says. Keep us posted and do something you enjoy today. Are you watching the Super Bowl with friends? We are having wings and dip. ..Yes! Sending much love to you.

anotherNYCGirl

Ally, - hope you see the dr and get the 'all clear' asap so that you have peace of mind!

A giant superbowl get together would have been fun!! (Although I am not a football fan, - I saw a quote that said "My idea of a super bowl is a toilet that cleans itself!" THAT i can relate to!

Hugs to all here!

Allydp

Vizsla - thank you!

Meadow - thank you so much. I'm 2 years out from dx almost to the day. My husband and I ran errands around town yesterday and had some lunch while out. It was a really nice day. We're heading to our friend's Super Bowl party tonight so that should be fun too. I haven't even told my closest friends about the node. It's embarrassing at this point. I might just call and see if I can talk to a PA next week and ask what she wants me to do. Maybe she'll say wait anyway. Wings and dip sound awesome! I'm making mexican pinwheels and mac and cheese bites to take tonight! Sending much love to you as well. Thanks again for your unwavering support. xo

Luvmydobies

Oh Ally, I'm sorry to hear of your node scare. Maybe it's not a bad sign since it's painful! This cancer business is BS! I hate the fear it brings after treatment! I remind myself when I have an issue that if I never had cancer I wouldn't be so anxious about it and probably wouldn't even call the doctor for these pains I experience off and on. So I'm hoping and praying this is just something simple that will clear up for you. You're in my thoughts and prayers. (((((HUGS)))))

bluedog

Sending you a hug, Ally. Hope it's just a little infection somewhere that's causing the node to swell.

TNBCDad

Hello all, just joined the other night, excellent site, lots of good positive vibs from you girls. But I'm the fella looking for info and support. My wife was diagnosed with TNBC in Aug, lump in the breast and several nodes on the one side. We've been through Paclitaxel,AC and Cisplatin/Gemcitabine. We've had good reduction in the first weeks of Pac and Cis/G, but then stopped. AC allowed it to grow....Getting more then a bit frustrated and more scared.....we've done another round of C/G, and will ultrasound after 7 days...if no reduction, then that's it for chemo....on to pre surgery radiation.....we are thinking about starting Hypertherapy after the radiation, or maybe with the next round of chemo, if we have one. also not really thrilled with having to wait for several week for a radiation spot with no systemic treatment in her system. Thinking seriouly about going on the Vit C treatment with Mistletoe as well.

Hello to PolarPegs, we are just north of you near Vernon with 2 rug rats of our own

Meadow

polar pegs and TNBC DAD, Welcome!

HausFrauMi

Hi Ladies and Gents! Hope the weekend was well. Super bowl party was fun and forced me to clean and organize a bit in prep for surgery on Wednesday and start Chemo 19th Feb- Friday. I will go home after AC infusions with a Neulasta button on my belly to deliver meds 27 hrs after chemo on Saturday ==saving me a trip to the hospital. At least I only have to do that 4x!

Ally--hoping that it "gets better" soon!

Geeper-- YODA rocks!!!! Awesome you are

I ordered some head covers today! Thank you amazon prime. You may be my best friend for the next year...cause lets face it chemo, surgery then radiation will end close to November and time for Xmas presents shopping.

I signed up for a Look Good Feel Good class at the cancer clinic March 14th. I figure worst case my daughter will have some free make up for dance recitals in June. I won't be able to rely on my dazzling hair by then so maybe I can learn some neat tricks for my eyes and lips.

Shopgal2

polar pegs and tnbc dad welcome.

HausFrau sounds like you are doing all the right things to prep for chemo. We are all here for you.

Oh ally oh no. A node would worry me too. You need a break.

As for me I am crushing away in rads. Only 7 whole breast and 5 boosts left. I have been back to work 3 weeks tomorrow and am exhausted from the travel to & from rads to work and then home. Came home tonite and am feeling like I am getting a sore throat. Yuk. I see my ro tomorrow and I'm sure I will get told I need to rest more, eat more, and drink more water. I am really struggling to eat. I am on a clinical trial for a calorie reduction to lessen the toxic effects of rads. So far I've lost 15lbs and barely am eating 900 calories a day.

ScotBird

Hello, just joining you all as a recently diagnosed TN. I am 49 with 3 daughters who are 16, 11 and 10. I noticed a lump just before Christmas. I think it must be really fast growing as it seemed to get enormous between me noticing it and getting it scanned a couple of weeks later (Christmas got in the way). Since then my world has become a surreal and scary place. I started chemotherapy last week, and am awaiting BRCA test results pre surgery.

I have no family history of cancer: my mum and her sister are both super fit and well aged 87 and 91. I am just beginning to learn about my new reality. Like lots of people I didn't know there were different types and grades of breast cancer: TN meant nothing to me. I love your discussion boards and have found all your stories a great comfort and source of information since discovering this fabulous organisation. It's also reassuring that the treatment is essentially the same wherever in the world you happen to live. The hardest things so far have been telling my daughters and mother and seeing my husband age about 10 years in a month as he is so worried about everything. I hope things will start to feel a bit more normal as we all adjust to this new reality. Sorry to be joining you but you do all sound lovely and so supportive. Thank you!

LoveMyVizsla

Welcome ScotBird. Sorry you are joining us.

Shopgal, that is a hard road to go! 900 calories??

Meadow

Haus, I did a Look Good feel Better class, and I was really glad I did. There were some ladies in there who were deep in treatment (I was like you, just starting) and it was obvious they did not feel well at all, but were pushing through the rough times, doing something girlie and pampering, while looking in a mirror at a reflection that did not seem to be theirs. I was somehow made stronger by them. And I got some really fantastic make up too!.

Shopgal, I was starting to say, "Good Job!" on the 15 pounds lost, the realized you are not trying to drop weight. Sorry you do not feel well. Hang in there, and do eat when and what you can. Hugs.

Scotbird, welcome! I am so glad you found this thread and are with us. You are right, things will settle in to a new normal. Our support people sometimes take our diagnosis so hard. I know my husband did too at first, then he got over the shock and was, and still is, so steady and supportive. again, welcome!

Cathytoo

Hi ScotBird...welcome to the World of TN breast cancer. It's not good to get a lump for Christmas! We're all here to answer questions and support you in your journey.

anotherNYCGirl

Welcome Scotbird, TNBCDad, and others, to this group of wonderful friends.

Ally, I, too, am thinking that the node is probably a sign of a cold or virus. Keep us updated!

Shopgal, - hang in there, - rads will be soon done! I never heard of dieting for rads. I found rads to be easy enough, just a hassle to get to after work.

Haus, - the Look Good Feel Better class was very informative, and yes, - some good things in addition to the good ideas! enjoy!

hugs to all from nyc

TNBCDad

HI ScotBird, sorry to hear about your Xmas, ours was a mess too as we found out on the 23rd that the AC chemo had backfired and the cancer had grown. Yours sounds like ours as well, found the lump, grew fast....but at least your into treatment and on your way

Welcome to the group, it seems pretty good, lots of info and some people to chat with that actually get what your talking about!!

Shopgal2

thanks meadow and anothernyc. I am just feeling yucky the past 2 days. Kind of run down. I know it will pass.

Luvmyvizsla the 900 calories is what I am actually able to eat. I still am not hungry 9 weeks post chemo The clinical trial is a 25% calorie reduction overall that has me at 1150 calories. The study is called Carefor and is run out of Thomas Jefferson university hospital in Philadelphia. My mo is lead investigator on the study. She said that they are looking at how calorie reduction can help lessen the toxic effects of radiation and skin breakdown. She said most patients on the 10 week study lose 10lbs on average. The study includes using my fitness pal to track calories and includes weekly lessons on nutrition & managing stress. The plus sides to the study are learning lifestyle changes to develop better nutrition to keep healthy. I had gained alot of weight in the past few years and never exercised in life until I joined a gym in Jan. I gotta do everything in my control to prevent reoccurrence.

Hi & welcome to scotbird.

HausFrauMi

Shopgal I swear by hot tea, honey and cinnamon for the sore throat. Helps get fluids in and the antibacterial properties in the honey helps kills the germs. Cinnamon is anti inflammatory. Been doing this for years and I am not a health food/natural diet food type person. There are also some other honey mixes if you don't mind some "heat" that include cayenne. Pinterest has recipes. My chemo binder includes honey as a good source of calories.

Rest up and feel better soon! I ordered protein powder yesterday for my chemo treatments in case I lose my appetite.

Hi Scotbird. I would have "ruined" my Christmas If I wasn't being fiscally frugal--new deductible in January so I put off my biopsy til new year (11/30 ultrasound). Just imagine this Christmas will be better knowing you have kicked cancers butt!!

cassylou

Welcome PolarPegs, TNBC Dad and Scotbird. You have found a mountain of support, experience and knowledge here.

Ally - I hope you can put the lymph node out of your mind. I've had a swollen and sore lymph node for 10 days. I've been trying the 'see if it sticks around for 2 weeks and if it does, then make an appt' but I couldn't quite make the 2 weeks. I called yesterday and made an appt for next week and guess what. The node pain and swelling started going down this morning. Sometimes I think this fear of recurrence is going to send me potty. Anyway, I'm still holding onto that appointment.

CarolinaAmy - I am definitely happy with how things have gone so far with the DIEP. I had the immediate reconstruction so I went into the operation with my breasts, and woke up with slightly different breasts and no nipples. I think I actually took it for granted initially. My PS is wonderful and the first time he saw me, he asked if I was happy with my new breasts. I commented that I preferred my old breasts and that I'd been completely happy with them until they tried to kill me, and also my old breasts had nipples so were far superior.

Now that I'm a bit further down the line, I truly appreciate what I have. I am not in any pain, I'm wearing my old clothes and day to day, no one would ever guess what my body has been through this last year. In fact, I often forget about my new body and it feels normal now.In fact, I think they look great. If you have any questions at all about the procedure, or any concerns, just let me know. Send me a private message. I don't check this so regularly so I can send you my email address. Cass x

ALHusband

At the request of the hospital where she works, my wife is speaking to a group of Doctors and Nurses tomorrow about her "Breast Cancer Experience". Good that they are interested in hearing about the experience from the patient's perspective. This will be her 2nd year doing it. So proud of her!

Shopgal2

ALHusband that's really great about your wife. What a nice honor. Thanks for sharing that. it warmed my heart to hear about paying it forward.

CarolinaAmy

TNBCDad and ScotBird, welcome. I'm so sorry you have to be here, but this is a wonderful and supportive group.

Ally, keep us posted on what happens regarding the lymph node/lump.

I was on a local PBS show last week regarding the changes in the American Cancer Society mammogram guidelines. I'll try to find the link for it, but Charlotte Radiology here is doing a GREAT job in speaking out against the changes. (Here it is: https://youtu.be/p8OO2n2ok4Q?t=6m40s)

My MO allowed me to have Taxol #11 yesterday because the neuropathy improved enough with the week off. It's up to me whether I have the final one next week or not, based on how I do this week with the neuropathy. In her words, "this final treatment is not the one that's gonna make the difference". Meaning, I think, if we're successful or we're not, it's not the final Taxol that is going to make or break it.

Good news, though! I had my previously scheduled post-chemo mammogram and ultrasound, and there's very little tumor left! I'm still hoping for a pCR come surgery, but at least we're in the right direction. My BS questioned whether I still wanted to go through with a BMX, which kind of upset me, but after talking to me and realizing I had thought this through very carefully and diligently, he supports the decision and feels it's not an overreaction. So I'm off to surgery on March 18.