Calling all TNs

greenae

Yes, a Pizza Party! NY has the best

Shopgal2

Notdoneyet congrats on the immunotherapy trial. Sounds promising.

Arlene already have spoken to a lawyer.

anotherNYCGirl

Meadow and Arlene, - yes, pizza! just say when!

I am actually escaping the cold for a few days, - heading to FL tomorrow. This trip was scheduled for last January but had to be cancelled the day before departure when PS saw a problem and I had to go for emergency surgery to remove implant . I am hoping that THIS time we do get to FL!

greenae

Enjoy your trip, another!

You're going to miss Big Snow

Shopgal2

anothernyc Florida sounds really nice and good that you get to go before the snow.

Arlene I'm in philly so snow for us here too. I was in ny Times Square 2 years ago during a big storm in Jan. Got stuck there during a work trip. Nyc was really beautiful during the snow, esp when it was coming down. I remember I had no boots and hat. Brr. Cold but pretty

Lookingforward66

Ladies,

I am in close to about as south in Florida as you can get. Miami. There is Homestead & The Keys but we say we're South Florida! It is our Winter now (highs below 70 degrees).....😎 Yes spoiled & I know it as was born in Ohio!! I wish all of you could come enjoy Our Winter. If in my area give a shout out. Stay warm & keep smiling (it confuses the grumpies) best to all. Keep looking forward & maybe we'll all just beat this Big "C" worry!!!

Marsha

Meadow

Lookingforward, you live in paradise! We feel the warmth from here. The Midwest has an ice storm tonight, schools closing and roads are very slick

Lou53

I am in Ohio and yesterday it was a whopping -14 below with the wind chill! Never knew how much my hair kept me warm! Brrrrrrr

CarolinaAmy

Notdoneyet, I'm excited about the clinical trial for you. I'm so excited about the discoveries being made in immunotherapy!

My Taxol #9 is done, so I only have three left. Now focusing on preparing for surgery and feeling a little strange about the shift in treatment. I kinda had the rhythm of this, so it feels strange to let that go and have to absorb a whole different phase. I get why the end of treatment and surgery can be such a disorienting and anxiety-provoking change!!

anotherNYCGirl

Thanks Arlene and Shop!

Stay warm everyone! (Marsha, - I know that even FL is 'cold' tonight, - but it will still be a nice change from NY

CarolinaAmy, - good to be moving ahead! You'll see!

Allydp

Navymom - hope you're enjoying the nice warm weather down there...and the sun on your face and sand in your toes!

Amy - (((Hugs))) You've been through too much. I'll be sending you good thoughts and hugs that the final Taxols are easy going. You're almost there! Stay strong! And thank you for the reassurance on the nodule.

Julie - PCR...fantastic!!! Hope you're resting up and healing well.

Luv - huge congratulations on 3 years!!! Give those pups a squeeze from all of us! They're incredibly lucky to have you! xo

Shopgal - I can't believe your company is treating you this way! As others have said, it's sad companies no longer value their employees as they once did, and the loyalty is gone. My husband was passed over for a promotion he was told was his after I was diagnosed...and they told him exactly that to his face. It's unfair these things still happen. I hope you're able to work something out and keep your benefits. You shouldn't have to worry about such things on top of everything else. Sending you big hugs. Please keep us posted.

Ruru - thank you so very much for your encouraging post! Stories like yours really keep me going.

Notdoneyet - YAY for the immune trial! I'm wishing you all the best and hope it brings you back to NED!

Arlene - I'm so happy to hear your wonderful news! Congratulations!!!

Marsha - enjoy that warm weather and long overdue vacay!

I had a setback with the GERD. Called my onc to let her know and she told me to follow up with my PCP. Very disheartening since she's the one who told me to call her back if the pain persisted, and specifically said she's send me for a GI workup if need be. So into my PCP today I went. Due to "chest pain" they did a quick in-office EKG which was normal as expected. I have an echocardiogram (just to cover bases) and abdominal ultrasound (checking for ulcer) scheduled later this week, and she's going to have a look at the nodule on my chest CT herself. She RX'ed Zantac and Nexium. I'm to take both religiously for a week and follow a strict GERD diet. I was taking both before, but in all honestly I'd miss a day here or there. And I wasn't doing that great of a job on omitting spicy foods...and had a glass of wine the other day. It's hard to understand how I could all of a sudden develop acute reflux out of nowhere, which makes me think I can get away with those cheats once in a while. Clearly I can't. At least not until I get the acid under control. Anyway, I see her again in one week by which time she should have all the results and I'll have an idea how the meds are working. If no change she'll run more tests or refer me out, didn't really say which. I'm half tempted to just make an appointment with a GI specialist myself, but for now I'm just going to go with the flow and hope the next week brings relief again.

Shopgal2

Allydp thanks for the hugs. Hopefully I should have a final answer today on the job. Just sucks cause I could have had my ro keep me out until the end of rads next month and return in March. But I felt OK and wanted to return to work. Staying home since th end of August is driving me crazy.

Can I ask how did you get GERD? Was it from chemo? I only ask because I developed it too after my second ac and was in agony until my mo put me on protonix, which gave me bad SE's after I was on it for 2 weeks. Then I switched to an otc med. Now during rads I had a pretty bad episode sat where I had horrible heartburn, reflux and felt like I was having a heart attack. Yikes! I did tell ro about it yesterday at my visit and wonder if I need to call mo to get a different reflex script. I do hope you feel better and seeing a gi doc sounds like a good idea.

Allydp

Shopgal - I have no idea how I got GERD. I've never had it before. The only thing I can figure is the aspirin in the Excedrin PM I took for a couple months back caused it. Although I've never had a problem with NSAIDS before, I'm in medical menopause now so my body is different now. Please do keep us posted about your job today. Again, I'm sending lots of good thoughts yours way.

Mamiya

On the GERD topic, I've had it for years but chemo really aggravated it! I have to be careful about eating acidic foods (tomatoes are especially bad, red wine is problematic etc.) and I have to be careful about eating anything too close to bedtime or I will get midnight acid reflux that wakes me up and is a bit scary.

Ag23

As of today, we're stopping Taxol since the tumor seems to be growing. AC didn't really work to shrink the tumor either. Since I didn't have much shrinkage, my only choice is a mastectomy on the right side. The surgeon seems set on just doing the right, but there are a few reasons why I'm considering doing both at the same time (1) I have an 11 month old and a 4 year old and my family has to fly into for a few months to help - don't want them to have to do this twice when I finally get around to the other side (2) I don't think I could mentally handle only having one side done - having a cup size D on one size and nothing on the other will be tough...I'd rather be flat, and (3) I think I'd have constant worry about the left side developing a cancer. However, there are some pros with only doing one side (1) I could maybe hold my baby with the left side is the main one. What would you do? My concern is that my 11 month old is 23 pounds. I've seen that you can only lift 10 pounds after the 8 or 9 week recovery time. Will I ever be able to pick up or lift up my kids again? Is this a life long lifting restriction? What can you share from your experiences please? I'm at a loss on what to do! Thank you!

CarolinaAmy

You'll definitely be able to pick up your baby again... after the restriction period is over. I am SO sorry to hear that you're not responding to the chemo. Is there a different protocol your oncologist is going to try after the MX?

Peabrain

@Ag23 - Here's my two cents based on my experience (I have no medical training so someone else might have more details) Unless they are taking your pec muscles (which is rare and only if the tumor has crept into them somehow), you will be able to lift stuff (like kids) once you heal. It's the time to heal that is the consideration. I had a BMX in June and am able to lift about 30 pounds so far. But I couldn't lift anything for a couple months, not even lifting my arms, Note that my healing was stunted by five months of chemo after surgery and implants behind my pec muscles. If you went flat the healing would be faster. And if you've already had chemo, the healing time will be shorter.

Some other women who went through this with kids might have some better insight,

Ag23

I will need a lot of radiation post surgery, so I will be flat for a while - yipee ) I'm really hoping for implants - don't want another invasive surgery, but that all still has to be figured out. My tumor is close to the chest wall. My oncologist is trying to get me a spot in a trial for cisplatin during rads, but I'm not sure if I'll get in. I was already rejected from one trial because although I'm triple negative, my PR receptors are at about 30%. I'm a strange case so they say...yeah me! I'm hoping that I can add a platinum based chemo...I've read that some folks respond better to those. I guess I won't really know though since the tumor will be out by then. My MO told me that they can only add carboplatin or cisplatin if I'm a part of a trial, but it looks like a lot of people on these threads get it standard?

NYinshocked

ag23, here is my 2 cent, I had uni prior to chemo. My MO added carbo to taxol and it's tolerable. Please talk to your MO, adding carbo seems to be the new standard for T

Allydp

Age23 - I am so incredibly sorry you're not responding to chemo. My MO added Carbo to my Taxol and I was not part of trial. I tested positive for BRCA and asked her to add it in. She did. Never had any insurance issues. You will be in my prayers that your team comes up with a good plan moving forward. xo

Ag23

Thank you Allydp and NYinshocked...Ally I know you're BRAC positive. NYinshocked are you too? Is Carbo now standard for most everyone, or just those who are BRAC positive?

I know how important pCR is in long term survival, so needless to say, I'm quite worried about my long term prognosis since pCR is now out of reach for me. We talked about Xeloda or Cisplatin trials post surgery...but then how do we know they're effective?

JulieAggie03

Oh Ag23 so sorry you are not responding...I am BRCA1 and did not have carbo but was told the same thing only if you are in a trial....that being said I have seen lots of ladies get it added in without being in trials and it's covered by insurance, maybe push a little more for it if you want to add it and try something else. I think the doctors just have to get your insurance to cover it as a necessity since it is not yet in the standard of care or something like that. As far as the limits on lifting goes, I had the BMX and will be able to lift my son again in a according to my docs how quickly just depends on how fast I heal. I opted for the double all at once, in my opinion why take the risk and worry about the this coming back in the other side? As young as we are we have a lot of life left to live! Hugs

Meadow

Thinking of you Ag, I am sorry you are going thru this. Hugs

Luvmydobies

Ag23, so sorry to hear your chemo issue. You will be able to pick up your kids again. I'll keep you in my prayers!

Ally, thinking of you and praying as you have your other tests this week. I also developed GERD/gastritis after treatment. Due to my C Diff history I can't take any PPI's though, so I get by with Zantac and Tums. It's so annoying at times. Mine was diagnosed via upper endoscopy by my GI doc. He also checked for H Pylori, celiac, and ulcers and thankfully those were all negative. I am supposed to stay away from all the food culprits but I cave in more than I should and suffer later. Check with your doc, but I think you can take Tums after meals while taking Nexium and Zantac. It helps take the edge off sometimes. Just FYI. Keep us posted!

Mamiya

Ag23, I am thinking of you and hoping you get a good result from whatever you do next. I am also triple negative and not getting a good response to chemo. I am about to start a phase 2 immunotherapy trial. Have you discussed clinical trials with your doctor? I can't know what will happen but I am hopeful that the trial drugs will be effective enough that I can have surgery (I have skin mets so we have to clear that up before surgery or it will just get stitched into the scar and continue to recur). When I do have the surgery I am going to insist on a bilateral because I do not want to go through another surgery, and also would not be happy with a DD on one side and nothing on the other. Because I have IBC I don't plan to ever do reconstruction, but that is just my personal choice, I could do it after two years if I wanted to.

CarolinaAmy

Luvmydobies, what's the connection with C diff. and reflux meds (PPIs)? I went through that nightmare for a few months just after I started chemo, but I wasn't told anything about contraindications with any medications, etc.

CarolinaAmy

And here's one more question for y'all: do your doctors run tumor markers in your bloodwork? I see so many talking about this but mine doesn't do it, and I thought perhaps it was one of the many things we don't get to do because of triple negative. Otherwise, I'm going to have to ask why in the world we aren't doing that...

Angtee15

Carolina Amy--mine doesn't. I should ask her again but I thought she said it's not something she would do while I am on chemo.

littleblueflowers

My MO does tumor markers...has all thru treatment too.

Luvmydobies

Amy, an Infectious Disease doc told me PPI's totally block stomach acid and we need some acid to combat the bad bacteria in our guts. Also, it says there's an increased risk of C Diff with taking PPI's online. With that said, some folks must take them! So anyone who reads this and needs them, by all means don't stop! Any medicine has increased risk of something, as you know. He also told me to never take an antibiotic unless it's absolutely necessary, and to try to avoid broad spectrum antibiotics. He said everyone should really follow those guidelines, because of all the super bugs, and he said C Diff is on the rise. Some consider C Diff a super bug because it can be hard to treat. I have major PTSD from C Diff. I had it three times, twice during chemo, and hospitalized both times. I'm terrified of antibiotics now! I haven't had to take any since C Diff over two years ago, knock on wood, but I have IBS, and have diarrhea when I have a flare and my mind still goes to C Diff! I'm a bit OCD about washing my hands and cleaning with bleach because of it. Ugh.

My Onc doesn't do tumor markers either because he says in his experience, they aren't reliable, due to false positives, because other things can raise them. I was treated at UNC in Chapel Hill. My Onc is considered one of the best and has won many awards for breast cancer research so I feel like he knows his stuff, for what it's worth.