Calling all TNs
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my first taxol went bad. spent day two in the er checking out the chest pain,hard time breathing, swelling of limbs and neuropathy. Doc thinks i need to change meds for the week after, it was an allergic, toxic, reaction and sounds a bit like yours. hope you can check it out.
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*Longer post ahead regarding Neutropenic Fever* Guys, it's beel a hell of a week for me (excuse the language, don't use it often, but it's fitting). Before I go in to details, Diva... I have questions!! Will post them in a few minutes.
Anyway, Monday night... 7 days out post chemo.. developed fever 100.4, went up to 100.9 overnight. Tuesday morning 99.9, ate some bkfst, called onc office and left message with a real person about fever at 8 a.m. No call back by 11 a.m., called, left another message. Laid on couch literally ALL day with aches, mild chills, probable fever. 2 p.m. Tuesday, temp was a whopping 102.2! Now I'm a little scared. Called probably more than a dozen times before reaching a real person at onc office and demanded to speak to someone. Went to onc office for cbc at 4:30. Three people, one being the onc, come to the door after my bloodwork and usher me back. White count plummeted to 800 or .8!!! Gave neupogen and called hospital to get me directly admitted for neutropenic fever. Got to the hospital about 7 p.m., after a minor detour to get Aleve and Claritan. I was only supposed to be there 24 hours. I just got out yesterday afternoon...
While there, standard procedure I guess is to place a heart monitor on. Never had one and my heart tends to beat a bit faster, sometimes in the upper 90's, occassionally in the 120's, and if I'm highly aggitated or a major issue has just happened, it can go to 140. So I had one, and heart was racing. While laying in bed, it was around 120's. I had test after test for the white count... chest x ray, blood cultures, urine cultures. It slowly rose from .8 to 1.3 in 24 hours, then to 2.2 by 48 hours. The onc was going to release me, but the heart was still of concern. After walking in the hall, it went to 157, so a cardiologist was called in. I then underwent an EKG, CT with contrast, and Echocardiogram, as well as thyroid blood check. In the meantime, I was extremely frustrated and irritated with the whole thing! My heart is normally high, not quite like this, so what changed? It was high on arrival they said, so what happened? Neupogen happened. I came here and searched for neupogen and found it has done this to others... tachycardia. It's rare, but it's even on their website as a side effect. None of the docs had heard of this, and I don't think they still believe the chemo or neupogen has something to do with it. But I've read it here too. Anyway, long story short, I came home.
Now I have three specialists to follow up with: Oncologist (for BC), Pulmonologist (for lung nodules believed to be histoplasmosis), Cardiologist (for poss tachycardia)
OMG... 2010 cannot end soon enough! This is seriously nuts! I'm really thankful I've had so many people praying and thinking of me, but being on that oncology unit in the hospital was like being on death row. One person even died while I was there right who was right in my same area!
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cc4npg - what a nightmare.......I am so sorry you had to go through all of that, I can't imagine. I really like my onc, but I know that he wonders where I get my information or how I learned about certain things. I think that sometimes drs find it hard to believe that we do know what we're talking about. (((hugs)))
pinkpee - same thing for you....ugh....a day/night in the ER is not fun. I landed in the ER after my 1st chemo, then was "lucky" enough to get a nurse that actually said to me after I told him what chemo I had "that's above my pay grade, you'll have to talk to the dr about that". I thought my DD and DH would fall out of their chair. (((hugs)))
LJ - glad to hear you accomplished most of your To Do list. I have the week before Christmas off from work and plan on doing some baking then. I don't bake often, but always get the urge during the holidays.
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Lovelyface- I am er+3%, pr- and her2-. My onc tells me there will be no follow up medication. He says nothing will do me any good. Makes me wonder too because there are oncs out there prescribing follow up meds to weakly ER+ patients.
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Hello, Ladies.
I am 42 and was diagnosed with IDC in my R breast in Sept 2010. Had bilateral mastectomy in Nov and found out that I was TN a week after surgery. Was devastated by the diagnosis but did not let it keep me down too long. I am determined to live until I'm old and gray. I am going to grow old w/my lovely husband and watch my daughter grow up and get married and have kids. Will be starting chemo (ACT w/avastin - clinical trial) on 12/14. No radiation since my tumor is less than 5cm. My husband thinks maybe I should push for radiation after chemo. Anyone ever been in this situation? I am nervous about the effects of chemo but ready to get started. Any advise on preparing for my chemo would be greatly appreciated.
Thanks so much.
Amy
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Hi Ladies,
I usually don't post in this thread, but I am TN too. I did chemo before surgery... surgery is in 3 days, modified radical mastectomy and full auxillary dissection. For a month, I have felt pain on my chest. Onc. thought tumor pain. And just today I found a lump approx. 1-2 inches below my cancerous breast on my rib. It is approx. o.5-1 inch bean shape and is movable. It feels fairly hard and tender to the touch. What could this be?! What should I do?! I can't phone my onc. until Monday. Can I have the breast surgeon remove the lump during my mastectomy to have it biopsied?! Help me ladies! I am freaking out!!
Thanks
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Hi Ladies,
Just wanted to check in and be counted as a TN - just found out last Saturday, when my path report came in the mail.
Originally, my surgeon told me I wouldn't need chemo because of the size of my tumor, but I guess TN changes that. I almost feel like just when you think you know what's going on (because the docs tell you one thing), it doesn't necessarily work out that way.
Definitely a bad roller coaster ride, and definitely emotionally draining.
I take strength from this board - another reason I wanted to post here - because I'm tired of feeling hopeless.
Wish you all a great weekend.
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slcst12: I just didn't want the attention of a scarf plus I started chemo in November and it was too cold to not wear a wig. I got the filament type which doens't scratch and had it styled to look less fake. I received many compliments on my "hair" and most people still don't know I had BC.
Laurajane: If everyone of my crowns had a root canal I would be toothless. LOL!!! It's 11:45 am here and I am in work out wear but that is code for laounge around the house clothes. Oh, and I am in bed, too. Enjoy decorating and making cookies.
HeidiToo: Can't wait to see pictures of it all lit up! Sorry to hear about the vaccuum that won't suck.
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Done! All houses are up and lit. Will make video soon... get your popcorn ready!
Had a nice field trip today with my naturalist class. Saw otter, deer and beaver scat (that's poop in layman's terms). Otter has scales in it (fish eaters), beaver has fibers (bark eaters), deer firms up this time of year (eating more twigs than greens). Now, aren't you glad I told you that? lol
Then did a classroom session on skull identification. I got them all correct (using a key): wolf, fox (gray & red), muskrat, woodchuck, cougar, raccoon, opossum, rabbit, beaver, skunk, mink, etc. Does this mean I'm a bonehead? (that's our nickname for one of our Boston Terriers).
Watching Army/Navy now (hubby went to USNA). Beat Army!
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Hi, Teka.
The reason I am stage II was because of the size of my tumor. It was 2.5cm not 2.0cm as I had on my profile...sorry. Will have to correct that
I had the option of getting the lumpectomy also but opted for bilateral mastectomy just for my peace of mind. Am a worry wort. I think we are in the same clinical trial. I will be in the Phase III of the ECOG 5103. When they offered me the chance to join the trial, I just grabbed it. Pathetic...but I was willing to do whatever it takes to decrease the chance of recurrence. I know nothing is ever 100% but I'm hoping it will help. So you're in Arm D of the study? I'm crossing my fingers that I'm not the small percentage on the placebo.
Thanks so much for responding and the advice regarding the anti-nausea meds.
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Hi, Lovelyface.
Here's a link to my plastic surgeon's website which has some pictures of what reconstruction looks like:
http://drdumanian.com/pages/g-breast-reconstruction.html
Sorry, I don't know of a site where you can watch the procedure...I wasn't that brave to do a search for that
Hope the picture link helps. Have a great weekend.
Amy
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Amy, NannaBaby, and Michelle - so sorry you all had to join us on this website.
Amy - I was in E5103 trial but when it came to the Taxotere part I was allergic to it. They had to switch me to Taxotere and I had to decide whether to stay in the trial or get out. I decided to get out because at the same time they came out with a study for Stage IV breast cancer patients that the avastin did not extend life enough to be worth the SE's. I did receive 5 treatments of avastin before I got out of the study and the study is to determine if avastin helped people with non Stage IV BC. If I was not allergic to the Taxol, I would have stayed in the study. The more they can learn the better for future patients and since I was getting the normal chemo anyway I thought any extra chemo would only be to my advantage. Wish you luck. I had a partial mastectomy so I am now finishing radiation. I did not have a lot of bad effects from chemo but I was VERY lucky. Everyone is different. Some of us luckier than others as I am heard you have read on this site where some of the girls are explaining their SEs and how bad they are. I feel very fortunate.
NannaBaby - sorry for the stress you are going through. Talk to your doctors. They will know what to do. I don't know of anyone you can contact this weekend. Hang in there - you can do it.
Michelle67 - welcome but sorry you have to be here also. This is a great site for support. I can't go a day without checking it out. You will learn a lot. Wish I knew as much when I was first diagnosed but did not find this site until I was in chemo. Take care.
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Amy, NannaBaby, and Michelle - so sorry you all had to join us on this website.
Amy - I was in E5103 trial but when it came to the Taxol part I was allergic to it. They had to switch me to Taxotere and I had to decide whether to stay in the trial or get out. I decided to get out because at the same time they came out with a study for Stage IV breast cancer patients that the avastin did not extend life enough to be worth the SE's. I did receive 5 treatments of avastin before I got out of the study and the study is to determine if avastin helped people with non Stage IV BC. If I was not allergic to the Taxol, I would have stayed in the study. The more they can learn the better for future patients and since I was getting the normal chemo anyway I thought any extra chemo would only be to my advantage. Wish you luck. I had a partial mastectomy so I am now finishing radiation. I did not have a lot of bad effects from chemo but I was VERY lucky. Everyone is different. Some of us luckier than others as I am heard you have read on this site where some of the girls are explaining their SEs and how bad they are. I feel very fortunate.
NannaBaby - sorry for the stress you are going through. Talk to your doctors. They will know what to do. I don't know of anyone you can contact this weekend. Hang in there - you can do it.
Michelle67 - welcome but sorry you have to be here also. This is a great site for support. I can't go a day without checking it out. You will learn a lot. Wish I knew as much when I was first diagnosed but did not find this site until I was in chemo. Take care.
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Nannababy - it sounds to me like a clogged duct. I had one after my biopsy and it scared me right in the same place you are describing. After my mastectomy i had a few and the PT would stretch them until they sounded like they popped. Do you have a heating pad. Warm it up and gently stretch the narrower sides/ It will loosen the clog and send it on its way.
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Nannababy - so sorry for the scare and that it is happening over the weekend. I don't have advice to offer, but Claire's does sound like a good one. In the meantime I'm sending cyber (((hugs))).
Amy/Michelle- welcome to the place none of wants to be, but if you have to find a place to learns, vent, talk or ramble, this is the place to be. I couldn't have gotten through this without my BCO sisters.
I was in the Avastin trial, but in the end found out that I had been receiving placebo. However, just being in the trial will help other women down the road.
Heidi - looking forward to the video and/or pictures.
Well.....my DD is home from college and we decided to run some errands and get a few things done. I did what I needed to do, but running in and out of stores during the Christmas season is not easy. We saw one parking space steal and the subsequent fight, numerous baby meltdowns and were "assaulted" by the poor Boyscout kids each time we walked passed them - they were selling popcorn. However, on the upside I was able to get a few gifts that I needed and ran into a Mom that I hadn't seen in two years. Her DD is one year older than mine and both girls cheered together in highschool.
Here is the dilema I faced....we hugged and the first thing she said was "look at your hair, it's so curly, I love the new style". Then she continued on about "new" look. It was such an awkward moment and I finally said quickly that it was from having cancer and changed the subject to the girls, college etc. I felt bad for telling her it was from chemo, as it may have made her feel weird, but then I didn't know what to say and that was what came out of my mouth at that moment. Help??? What do y'all do???
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jenn3- I do the same thing you do. Tell them it's my new "chemo cut"-- then move on to something else because, as you say, it makes them uncomfortable (or shell-shocked) but I can't bring myself to skirt the issue by making something up. I figure, sh*t happens, so why make nice of it?0
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I cannot keep up with the pace around here! I need to stop by more often just to try to get to know the regulars!
So I posted a few days ago that we're going ahead with surgery, and someone (sorry - forget the handle) suggested its best to do chemo first. So yep - now I'm thinking and second guessing etc.. I appreciate the advice - I do. I am going to talk some more to my surgeon and onc before we proceed, which I would be doing anyway. I spent today up and down all day.. reading the stats fur TN vs. other BC.. survival rates and all that. Also been imagining that its in my brain cuz I've been having funky headaches and vision issues... paranoid and stressed out likely the explanation - but thinking about feeling this way for at least the next 5 yrs really sucks.
BUT I've turned the day around and did some time on the treadmill, had a healthy snack, watching Its a Wonderful Life and getting ready to do a little housework and shower before bed. Gotta fight this thing, ready to get started.
So sorry to hear some of the difficulties many of you are facing. I'm glad we've all got a place to come and share where others understand.
Amy
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Wow, this thread has certainly been busy. For those of you suffering complications I am hoping you recover quickly so you can resume treatments and get past this.
Laurajane: Sounds like you had a really lovely day.
HeidiToo: Can't wait to see pics!
Lovelyface: PM me and I can get you to the private picture forum. Also, go to Exchange
City and Breast Implant Sizing 101 where you will find a large support group of women either undergoing reconstruction or who are helping others through the process. It is amazing what they can do!0 -
Amy-congrats on taking control of your day today! You can get caught up in the stats, so read them once and then forget about them. There is no way to know how you'll fare until it happens (or not!) Stay strong and conserve your energy for the 'fight'. You'll need a clear head and it sounds like you have already figured that out!!
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Titan- my condolences on your team's epic fail today....
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Our QB sucks...once we get our boy, Colt McCoy. back we will be OK...
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I thought that chemo b-4 surgery was based on tumor size??? Or is it it different with tn's? My tumor was 1.8 cm..diagnosed on Wed., surgery on Friday, chemo 4 weeks later. They moved quickly with me.
Everyone is different in how they want things done..but dang it..I wanted that thing OUT OF ME..now...! It was right below my skin..I could see it...glad to have it gone.
Good to hear from you Nanna, Amy and Michelle!
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Titan - my reaction to the preadjuvant chemo was just like yours. I could not get that thing out of me fast enough.
My onco is heading up a study on preadjuvant chemo and triple negatives. She tried to convince me to do it. I pretty much knew I wanted to cut that thing out right away, but I listened to what she had to say and there are certainly some good reasons to do it (mainly for confirmation of the proper chemo for your cancer). However, one question sealed the deal for me:
Me: Is there any chance of it spreading while on chemo?
Onco: There is some chance. That is the downside.
Me: Ya think?!
Mine was triple negative with a 98% Ki67 score. I felt like waiting the 6 days that I had to wait for surgery was too long. After surgery the path report revealed metaplastic features (not a true metaplastic, but some features of metaplastic), which made me all the more happy to have it out of me.
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I want to thank all that post as just reading this thread has helped me emotionally.
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Hi Patty...reading and posting on here helps me too!
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...ditto. This thread is a great help to me too!
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I feel like I've been waiting FOREVER for something to happen!!! the people at the imaging center that gave me the diagnosis led me to believe it would be something like 6 days till surgery, but now its been almost a month - nothing has happened yet and surgery isn't even scheduled. I'm getting nuts about it. I can feel the damn thing - mine is right on the surface too, when I don't have a bra on the lump is visible. And now I'm feeling little shooting pains and its tender. The surgeon met me quickly, but then wanted to take a lymph node sample and get the HER2 checked which was not done on the original pathology. So good news - lymph node clear, bad news.. HER2 -,and here I am. Meanwhile - waiting for all that stuff and then the surgeon was out for a week and the onc couldn't see me for 2 weeks.
BTW - GO STEELERS!!!!!
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99Sporty - I know how you feel. I had my mammo on the 19th - the radiologist was pretty sure then. Had the biopsy on the 22nd, got the news the next day - so it's now been 3 full weeks! Have a chemo counseling appt. tomorrow morning, then meeting with the surgeon in the afternoon, but they don't have a surgery slot for placing a port until Friday - so that would make it a full month before I get the port - then hopefully chemo that following week (Merry Christmas to me!). It's making me nuts waiting.....I already know it's in at least one lymph node and I can just imagine that it's getting further every day. Anyway, I hope we boh get started soon!
Donna
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I went almost crazy waiting for chemo to be done so I could have surgery. After being on here for a year I realize how lucky I am that I responded so well to chemo--they wouldn't have been able to clear margins or get them out otherwise. Just goes to show how each of us is different.
I am so happy for this thread and to be able to come here and share. I have been in a blue funk now for a month. I think now that the biggest part is over I am now dealing with the loss. Really want to get past this.
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Ladies I need help and opinions...
hmmm....not sure how to phrase the question.....for TN women is it best to get a BMX or just have a mx on the side of the BC...My team hasn't mentioned having both sides removed, but will that decrease the chances of recurrence. I go back to visit with my team Wed., but wanted to see what other TN are choosing and what they are being told..Thanks in advance
Melissa
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