September 2013 Chemo Group
Comments
-
surgical oncologist
-
glad I asked.
-
LH, I'm sorry to hear about your friend and also the extent of nodal involment after your neoadjuvant therapy. In terms of your friend, I find it really sad when I hear of anyone, with any kind of cancer losing (or beginning to lose) their battle. I just hate that. In terms of your nodal involvement, it's good you are ER+/PR+ so that you can have targeted therapy after your initial treatments are over. That can go a long way in fighting any cancer that may be left in your body. As someone with triple negative breast cancer, I wish an option like that was available to me. I've heard those drains can either come out easily or not. Hopefully, your other two drains won't hurt when they come out.
AC chemo is making me very sleepy. I think part of it may be from the phenergan I'm taking for nausea. I didn't notice it making me sleepy while I was doing my Taxol infusions, but it seems with the fatigue from AC that the phenergan puts me right over the edge into needing to sleep a lot more. I think I slept about 16 hours total yesterday. That's a lot of sleeping!
-
KJ, i am glad that you got answers from your docs. And you can have a meltdown anytime you need.
LHL, I am so sorry to hear about your friend. I lost a good friend (my age) to leukemia about a month ago, and it is so very, very sad. I am glad you had clean margins and a clear right side. Bummed for you about the nodes, but it seems like they have a good plan in place with the rads to address that. Dr. Au...that's funny ; there is a cardiologist in our area named Dr. Hart.
shaycpa, welcome! Sorry you have to join us, but you've found an awesome group here!
Last night at drill (training) at the FD, we were putting our gear on and off for time over and over...which meant no wig or hat. I think a few of them had nit seen me wigless since we all shaved our heads together in September! Even so, a bunch of them are bald by choice, so I didn't have the shortest hair. Of course, I am the only girl there, so I shouldn't have the shortest hair! It is nice to be around a group that just don't care one bit about it. I thought I would be more self conscious, but I wasn't. On an unrelated note, I can always tell when I had a hot flash while driving when I get in the car the next time and the window is down! Brrrr.
-
Lhl- sorry about your friend.
Kbee- I am not enjoying the hot flashes either.
Welcome ladies
-
sorry to hear about your friend LHL, that's rough. I hope everyone is well and completing their last chemo soon.
We met with BS today and still no answer as to whether we can do lumpectomy. I asked question about 5 different ways but all I got was we have to wait for MRI. Can't you give us a percentage based on your medical experience? Physical exam confirmed lump is gone but she says we have to wait for MRI, which is not until 1/30 because nat has last chemo on Tuesday.
Don't feel like that's a lot if time to make a decision if it's borderline and we want 2nd opinion as well, especially since RO was adamant not to do anything drastic.
Did anyone have to wait that long for post chemo MRI?
I also just want to thank everyone for helping me these last few months. It's made this situation a little easier.
-
LHL - I too am sorry to hear about your friend and my heart goes out to her boys. I recently learned of a college friend with two young girls who passed away from breast cancer (diagnosed Stage IV from the start at 33). The parallels to me were so scary and my heart aches for her girls. It is so scary to confront our mortality - I know in some ways it is a gift but in other ways it is paralyzing. I wish there was more I could do/say....
Simplelife, My lump & SNB was supposed to be in and out but I needed a ALND which then required an overnight stay (at least in my hospital). Every place is different....
Speaking of...I got schooled yesterday..showed up to support a friend starting chemo and was chatting about what helped me. I guess her nurse got upset that I was giving suggestions and basically claimed that I was confusing her and every place does it differently.... Well duh I wasn't pushing my agenda just wondering if she was offered certain premeds (for nausea like I was in my IV so I didn't have to take the orals, etc). It got a little tense. It was probably not the best time to be bringing it up I see in hindsight (just cause that first chemo is such a stressful whirlwind and not a place to process new info) but the nurse's bedside manner left something to be desired. Kinda glad I didn't choose to do my treatment at this place. But I am constantly surprised about how the standard of care is not standard and how if you don't know the questions to ask you are at the mercy of the medical system. Now I love that my docs take time to answer my questions (otherwise I wouldn't be seeing them) but there are some who obviously prefer patients who don't know anything and take what they say as the whole truth. I guess that is a lot of people in many professions but not with as much influence over our personal decisions maybe.
That's why I treasure this site so much because it gives me awareness to ask those questions and determine the course of my treatment.
-
LHL - also congrats and sorry about the path report - always a mized bag I guess. Celebrate the good stuff within - NO BC On RIGHT (and prevented further surgery - good decision) and clean margins!!!! Radiation wasn't fun but the worst part was having to go everyday - the treatments were not hard and while my skin's reaction wasn't fun, it was hardly horrible. I didn't put much stuff on either - with everything I got going on I just kept forgetting and only remembered right before going to radiation - and can't have anything on the area for that. But with a MX, your dose will be significantly less than mine and you might walk out of there with no changes whatsoever! Here's hoping.
KJ - that is so interesting. I wonder now if that was why mine turned out to be so expensive. I thought I would pay the normal hospital payment too but then ended up paying about $900. Too late now but wish I had asked! Way to go on being your best advocate. Best wishes on the surgery - I will be thinking of you today....strength and easy surgery....
-
josgirl - I agree with you 100%. I learned so much more from this site and my friends who have been through this than from the doctors and nurses. I think I knew more than them sometimes! I think it's frustrating for doctors when their patients are armed with so much information and ideas because they are used to doing things their way. Sometimes I thought it would have been easier on me if I was a little old lady who had never heard of the internet and just took my doctor's word for everything.
Good for you for trying to help your friend. I can just picture the nurse getting all huffy... LOL
-
it is SO nice being in the infusion room for only 90 minutes instead of 4 hours!! Just here for Herceptin today. Sweet!!
Josgirl... Thank you!! Surgery is next Thursday. :-)
-
Josgirl, thanks for the info on your surgery turning into overnight. I have to get a ALND because I was clinically node positive at the time of diagnosis, so I'm thinking mine will be overnight too...but I should find out for sure when I meet with the surgeon on Wednesday.
Kbee, I think that is cool that you felt so comfortable around your co-workers without your wig. It's clear you have a good relationship with them.
-
KJ - I can just imagine.... you must have felt like you sat down and got right back up. LOL
Kbeee - I have been a little more lax about not covering my head. The only person who has seen me bald is my Hubby... but after coming out of surgery & having countless nurses and aides see me uncovered, I didn't even flinch when I got home and my mom washed my head for me.
Those of you who've already had surgery.... did you have any issues after you had drains removed? I had two drains removed yesterday (one on each side, still have one on each side) and my left side is so puffy... it's like fluid is building up. I figured the remaining drain would pick up the pace and drain more, but it hasn't. I hope the swelling and puffiness go down, otherwise the nurse said I'll have to come in sooner than my next appt (Thurs), and I'm not really up for a trip to Dallas again just yet. She told me to wear a sports bra for compression 24/7 and man, it feels like it's cutting off my circulation in parts. Anyone have any advice?
-
lighthouselady,
I wonder if a wide ace bandage wrap might be more comfortable and offer more uniform compression? -
KJ - by the time I got most of the way through the Herceptin only infusions I had been going to the infusion room for so long I felt like Norm from Cheers - I would walk in and they would all yell "hi" - it was pretty comical. I still have my port so I have been there every six weeks since the end of Herceptin in Jan. of 2012 also - I was there today for my friend's first AC chemo and I was talking to her nurse and all of a sudden I hear from over at the nurse's station - "I thought I recognized that voice..." It was interesting to be there and not be the patient. I was happy though because I greased getting her BRCA results (positive for BRCA 1, but we expected that with a triple negative diagnosis at 35 and a boatload of family history of BC and ovarian - both SO and MO felt this would be the case) and her SNB results (she is doing neoadjuvent but we asked for a SNB beforehand when they put her port in to accurately stage nodal status) which were negative - yay! She would have had to wait until next week to get both, so I was glad I asked her doc to see if she could get the results for both. The surgeon's office is downstairs so they faxed the BRCA and the MO was able to log into the hospital's site to obtain the pathology because she also has privileges there. My friend goes for Neulasta in the morning so I also asked about extra fluids afterward, so she ordered not only extra fluids but extra Aloxi and Emend to be available to have with the fluids if desired. I felt like a good advocate today because I don't think any of those things would have happened if I had not been there to ask for them, so it made me happy.
-
SpecialK, yup, I expect to be in the same boat with becoming such a regular. I have to go every three weeks through August.
Sorry about your friend's bad news. Glad you were there to be supportive.
-
KJ - she didn't really view it as bad news - the node status was great news, and she was expecting the BRCA. In some respects it allows her to not ask herself whether she predisposed herself to breast cancer with where she lived, what she ate, whether she exercised enough, etc. - like so many of us do. She knows it was just a bad genetic hand that she was dealt. She was happy to have the specific mutation info so that her brother can be tested too. As I got further out from chemo and started to feel better, going for Herceptin was kind of chill - I took my e-reader and had a nice 90 minute pause in the day. Didn't need pre-meds, or have labs, so could just go in and sit down and get hooked up and receive the Herceptin and not have any noticeable SEs afterward. I am a believer in getting a slow infusion - 90 minutes. There is some anecdotal evidence that faster infusion is linked to cardiotoxicity issues, and I know that for me, there was increased joint/muscle discomfort with a 30 minute infusion.
-
SpecialK,
Thanks for the info on cardiotoxicity. I'm glad they are taking the full 90 minutes. Just some hydration and the herception infusion. So glad.
Am having some significant problems with edema right now. Doc is hoping it will go away as the taxotere works out of my system (he said about 8 weeks from last chemo). In the mean time, it is frustrating. But, so glad that there won't be significant side effects with just the Herceptin. :-)
-
christtmas wish granted on Thusday....clean pet scan! thank you. still have more chemo and rads but it is working
-
One thing I'm a little confused about is if the tumor was size X prior to chemo, then either gone or very small after, how do they know how much tissue to take out at time of lumpectomy surgery? Do they go by the original size? I ask because my wife is small breasted.
-
Yay positivenegative! Clean PET...that's huge!
LHL-- Glad for your good news and feeling for you with the bad on your path report. I remember feeling relieved that my tumor was small but freaked that I had positive nodes (but also relieved that there weren't more). We may be doing rads around the same time...good luck! And I am sorry about your friend...so hard for her children, and sadly, too common nowadays.
Special K-- I want to tell you that I have really appreciated your knowledge ever since I was a lurker on this site. Your friend is lucky to have you as an advocate. You still have your port in? I can't wait to get mine out.
KJ, good luck getting the chemo out of your system! I have 3 more Taxols and I am just achy and tired. Can't wait to be done...end of the month can't come soon enough!
-
Great news, PositiveNegative!!
Warrior, keep on truckin'! It seemed an eternity during chemo. I'm almost feeling guilty for feeling so good right now. :-) Except for the edema, I'm feelin' fine!! You must be doing weekly's? That has to be tough to not have a few days to feel good each cycle. Hang in there!
Art123, that is a great question for your surgeon. It may depend on the type of breast cancer. My cancer invades the skin as well as internal tissue. So, for me, anywhere they saw cancer during the initial diagnostic scans they will be removing, including skin.
-
Art, your wife and I are pretty much in the same boat. One of the reasons they do neoadjuvant therapy is to reduce the size of the tumor prior to surgery to make it less invasive. I believe they go with the current size of the tumor at the time of surgery. I have my appointment with my breast surgeon on Wednesday and I can ask her that question. I also am small breasted and plan on having a lumpectomy. BTW, the opposite is true about node removal. For me, I was node positive at the time of diagnosis. That means I have to have a lymph node dissection at the time of surgery and radiation to the armpit even if there is no sign of cancer in the nodes at the time of sugery.
-
thanks simple life. Her last chemo is Tuesday and then we don't see breast surgeon until after MRI on 1/30. I have a 2nd opinion already lined up.
-
Hi simple life and Art 123. Just wanted to wish you the best with the surgeon. Personally I would take 10 surgeries over one chemo regimen. Art, good job with setting up the 2nd opinion in advance. You are a great husband.
-
Simplelife- great news
Art- best of luck.
-
Has anyone gotten their eyebrows or eyelashes? Kinda miss mine.
Hope everyone is doing great. Hugs
-
My eyebrows have just started growing back....I can see a few little ones starting. My eyelashes are coming in slowly, too, but I mean SLOWLY. I can see a few little stubby lashes if I look really close. LOL
-
I'm inspecting my head daily for sprouts too. Hadn't noticed how much my eyebrows have thinned until this week.
-
HELLLLLLOOOO! I have been gone awhile. It seems like the days are flying by so very fast. I can't keep up. I have been in "preparation mode" or something. I have been cooking meals and freezing them for the last two days, just trying to have simple things ready for surgery on Wednesday. It is just my lumpectomy/SNB...I hate to see how I am going to be for my BMX! And now with all the cooking I am behind on cleaning. UGH!
Thanks for the info about having to possibly stay overnight for a ALND..I had no idea that was a possibility and have no one in place to help if that happens. When they called to confirm my surgery I told them my plan of having my babysitter dropping me off and picking me up after like I did with my port surgery and the lady basically told me that she wouldn't schedule my surgery if I didn't have someone to sit in the waiting room the whole time I was in surgery and also someone to stay the night with me after. I bawled for 3 hours afterwards. She made me feel so small. As if I didn't feel awful enough not having someone readily available to do that for me. My friend just got laid off from his job so he will be able to do it luckily. I will have to talk to him about getting the kids off to school and stuff if I have to stay. Hopefully he can.
So, I am more confused/freaked out than I was about rads now...as far as should I have them or not. One of my nodes "looked funky" on ultrasound before I started chemo but we don't know what the status is. I have been fighting with all I have to not do rads if I don't have to...but now I wonder even if they are negative (because the chemo made them that way) should I do rads anyway?! This is all so scary. So much of my stuff is "grey area" and I hate it. My sister keeps asking when my BMX is going to be but I won't know until after I find out my node status and if I need rads. I hate not being able to PLAN stuff (hence my obsessive preparatory meal cooking) and was totally freaking out that I didn't have surgery scheduled. Both my BS and PS schedulers called me and said not to worry about it, that they would make it work. That made me feel better.
LHL: Soooo glad you are doing well! You have been in my thoughts.
My hair all started to fall out in the last few days. My eyebrows were mostly grown back and they are completely gone again now.
KJ: I'm all swollen up too. Even my face swelled up again yesterday. I saw a cardiologist the other day to get cleared for surgery and he said that it wasn't too bad and my heart was all good. Hooray! I also had a couple days with skin pain (which I don't know of ANYTHING else that could have caused that) and my muscle pain/weakness is hitting hard again. I am calling them "chemo flashbacks". And I am glad I am not the only one that can't pee after surgery; I thought I was weird. I think mine is caused by the morphine though. When I had my gallbladder out a few years ago they gave me something else (wish I had written it down) and it wasn't nearly as bad. I didn't even have to get cathed. You may want to check into that. Catheters are no fun.
-
MamaStewart,
Good to hear from you! Sounds like you have been one busy Mama. ;-)
Good thoughts and prayers going your way!! Glad your heart is good.
My edema is starting to subside. Getting ready for surgery on Thursday. Got the fridge cleaned out, laundry done, and a few other chores out of the way. Hope my friends don't mind the messy house when they stop by.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team