Calling all TNs
Comments
-
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.
0 -
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.
0 -
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!
0 -
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?
0 -
@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,
0 -
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?0 -
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
0 -
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
0 -
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?
0 -
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
0 -
Thinking of you Ag, I am sorry you are going thru this. Hugs
0 -
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!
0 -
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.
0 -
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.
0 -
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...
0 -
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.
0 -
My MO does tumor markers...has all thru treatment too.
0 -
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.
0 -
May I join your group? Although I am not completely TN since my hormone status is ER- PR+ HER2-, I am being treated as though I were TN because of my ER-. My oncologist feels that my hormone status is so rare that I am closer to TN. I will be started 4 rounds of AC every 3 weeks, and then Taxol every week for 2 months. Is this the usual protocol for TN? He said that he feels this is a better and more aggressive treatment (my tumor is Grade 3, and my Oncotype is 51), and is better suited for TN patients.
Any suggestions are welcome, and I hope it is okay that I post here.
Citrine.
0 -
citrine, of course! You are welcome! The treatment plan you have described sounds very much like what many here have done. Wishing you all the best and look forward to following your progress as you go through treatment and beyond
0 -
Hi Citrine,
I may be similar to you. I have triple negative, but but PR receptors were estimated at 30% when I had my biopsy. They gave me the standard TN treatment - ACT chemo.
Ally
0 -
Ally, Notdoneyet, thank you for the welcome and the info. I am just waiting for the hospital to call me to tell me when my first chemo is, and I will also be having scans (bone, organs, etc). The onc doesn't think there is anything to worry about there, but he wants a baseline. Has anyone else done that?
0 -
Ag so sorry chemo didn't work yet for you. Tn is nasty and stubborn. I hope that surgery will go easy for you. I am a DD and if I need to do mx in the future I would do bmx. And you will be able to pick up your little one again.
I got a response back about my job. I was offered a lesser position at same salary. What sucks is it isworking for someone for used to be my assistant a few years ago and this person was very confrontational towards me then. I did ask human resources if I could possibly work for someone else due to the history and am waiting for a response back from them today. Meanwhile my doc wrote my return to work for 1/18 and I am in a holding pattern now. And no pay this week because my Ltd pay ended as of my return date. This work thing had me so upset that I am not sleeping, can't keep food in and have lost even more weight because I am just not hungry. arrg, stress is not good for bc. I need a break.
To make matters worse I had some jack off almost side swipe my car on my way into the city for rads yesterday. Jerk rode my bumper then passed me on the left and almost take off my bumper and mirror. I thought at the time that he missed my car. Nope. Went food shopping last nite for the blizzard coming and saw a soft swipe on my front bumper. Like I need this crap now too? Went to dealership this morning and they quoted me $600. I didn't want to turn into insurance as my deductible is $500. Then I went to a place my brother in law takes his cars to that said to let them try to buff it out. Turns out it could be buffed and they didn't charge me. Owner had someone in his family that had bc and chemo, rads so felt he needed to help me. I was crying I was so happy. Nicest thing that happened to me in this shitty week.
0 -
carolina - no markers here and I'll never know if they'd be accurate since we didn't do it from the start with the tumor still there i have no baseline.
0 -
Ally, it totally sucks that your tumor isn't responding to the chemo. Mine did, but I didn't get a pcr (autocorrect tried to put in "prize" - hah). I hope you can get carbo. I asked my MO about it as I was finishing up chemo, and he said It was still being tested. But I've also seen people on BCO who seem to be getting it without being in a trial. Speaking of trials, I'm in one too. Testing NeuVax, a BC vaccine.0
-
Notdoneyet, sucks that chemo didn't work for you, too! I hope your trial goes well.0
-
Thanks Bluedog, it's been a lot of running around and not nearly finished with that before I even start the trial! The crazy thing is that I think taxol and carbo did work, but then being on FEC (which didn't work) gave the beast time to come back in the skin and lymph node - the pet scan says nothing about the breast except for the skin! Arggggh!
The good news is that I should get my hair back. I think I will keep it short because I have a sneaking suspicion that I may have another dance with taxol at some point, but we'll see, maybe the trial will be a smashing success.
Citrine, I had EKG, bone scan and CT scan before initial chemo to get a baseline and check for mets, that seems to be pretty standard (some people get a PET scan but not many).
0 -
Citrinetiff, we are glad to have you with us, sorry for the reason. We hope you find tons of info and support here!
Notdoneyet, I have found short hair to be the best thing ever. So much easier, and I would not have gone this short if it were not for this whole journey, One good thing!
0 -
Shopgal, so nice for them to get your car fixed, I love stories like that. As for your job, I hope you get to work in another area. If not, you are not the same person as before. Cancer and treatment has a way of making us tougher, and I suspect your former assistant/now supervisor will see that you are not a target for their bull crap. Hang in there.
0 -
thanks meadow you knew just what to say to make me feel better.
0
