Starting Chemo March 2016

Hi! I'm popping over from the September, 2015 group. I had 4 rounds of dose-dense AC, followed by 4 rounds of dose-dense Taxol. I'm almost 8 weeks PFC (post final chemo), and almost have a decent GI Jane hairdo. Two more weeks of radiations, and I'm on to Tamoxifen and life after active treatment.

Jonsey, here's my two cents for planning purposes. One thing I didn't know starting this journey was how much blasted time it took every week. Each chemo infusion took 4-6 hours, plus I had to go back the following day to get an immune-boosting shot. That was a day off work plus a doctor appointment every other week (dose-dense is every two weeks, but some people have infusions every three weeks). Plus, some doctors want you to come in for blood work on the week you don't have treatment. Most MOs do blood work before each infusion. I was lucky in that mine did it in her office just before an infusion. Many others reported having to go to the hospital the day before each chemo treatment to have blood drawn. When you meet with your MO, ask specifically how often you'll need to come in and for how long. This will form your Plan A, or your best-case-scenario plan for chemo. Plan A is easy, because it's based on known variables.

Plan B is harder because you have no idea how your body and brain will react to chemo. Most people seem to have a day or two following treatment that they're somewhat non-functional from side effects. Also, some chemos require you to take steriods before and after an infusion. Many people find that steriods prevent sleep. I am a writer/editor by trade, and was part time before diagnosis. My schedule is flexible, and chemo didn't impact the number of hours I was able to work. Had I been full time, it would have. While chemo brain didn't impact my daily life too badly, it did affect my ability to edit and write scientific journal articles, do analysis, etc. Fatigue was also a problem. Active things, like folding laundry, were generally OK. Sedentary activities, like reading and editing, were difficult, if not impossible at times. Looking over some work I did last fall left me underwhelmed.

I apparently had a pretty easy time with chemo. Many people in the September group ended up taking a leave of absence from work during chemo. I got lucky and didn't need to. I did have a Plan B in place in case I ended up in the hospital or with side effects that left me non-functional. It reminded me of planning for maternity leave.

Hi ladies, April 2015 here. Just wanted to stop in and say welcome to the jungle! You will have more good days than bad days, and eventually it will end! Stay strong!

Welcome azrescue. Sorry you find yourself here. I am not familiar with the treatment you described. It also seems like a pretty far drive. Hope you are able to manage. I share your worries about neuropathy and chemo brain, my worst fears too. May they be unfounded.

Thanks Scotland for your PlanA/B description. I am sorry to hear chemo brain affected the quality of your work. I suspected that and hope it is not the case for me. Still trying to finish my dissertation. Has it improved at all yet for you? If it has, how long did it take?

Wishing everyone a good week!

NancyHB ~ It is a bit of a drive (3.5 hrs by car) (a little over an hour by air). We will make the trip for each treatment. At least it's not weekly, as I am sure I would not be able to maintain that. We just really feel like we are getting better care there.

As for the carboplatin ... I guess it's been around since the 1980s. However, it's been more recent that they began using it on Triple Negative. So, the dr said it's been VERY effective at basically melting away the tumor prior to surgery. So much so that when they go into surgery they are only able to recognize where the tumor was due to the markers. The regimen that I will be doing is the carbo with the taxotere. The idea is that they are trying to get away from the AC. As the AC typically has more side effects, and more long term side effects. I guess the down side is that there isn't any long time frame studies yet. But the theory and hope is that ... the better outcome they get initially will translate to a better long term outlook. I'm trying to stay positive & concentrate on the next step. It looks like I will most likely be starting the first week of March.

Jonsey22 ~ I hope I can maintain too for the traveling. Sorry you are here as well. But, we'll get through this rough patch. And be stronger for it.

Hi Everyone, what an amazing thread. I have been lurking here for over a week. Now that I have all of my "details," I can start posting where it makes sense. I am starting chemotherapy on Thursday, 3/3/2016. My regimen will be TCHP every 21 days for 6 cycles. The "T" piece will be given weekly.

Like NatsFan, I am also in IT, and I work in the management consulting field. I'm concerned about losing sensation in my fingers and about cognitive function. And lethargy and weight gain. And all this stuff...well, frankly, there's almost nothing I'm not concerned about.

I haven't figured out how to set my signature, I'll get there. I've posted on other internet forums so I'm sure there's a link.

As for me, I received my diagnosis on 2/12/2016. I started out with a mammogram and ultrasound on 1/20/16 for a lump + inverted nipple that I found. The mammogram alone was not alarming for the palpable mass I found -- the instructions were, "do a 6-month follow-up" -- that particular fact has all of my girlfriends freaking out and I don't know what to tell them. I am really sad because we are all told that our mammograms will save our lives (and I think we all assume mammograms will save us from cancer treatment, period...that's the message...it's not true in my case and the oncologist said yes that happens).

Thankfully the ultrasound showed irregular edges and enlarged lymph node, because it sent me to biopsy on 2/9/16. That biopsy showed IDC, right, 2cm with lymph node 2.7cm. ER+, PR+ and HER2+. My CT abdomen/pelvis/lung and CT bone are clear. My breast MRI shows my tumor and my lymph node, plus other areas of concern inside the right breast. I will be a mastectomy candidate because of the additional, numerous areas of concern in the right breast. I have genetic testing scheduled for 2/29/2016.

My immediate goal is to read thru that enormous chemotherapy shopping list and get a big list of questions for my "chemo education" appointment on Friday. I am having my port placed on Thursday 2/25. My family and friends and employer have been amazing.

My immediate question for the group is a general one about pain management for chemotherapy treatment and for the other annoying procedures that go along with this phase. My going-in position is that I want my pain managed, and I want it managed WELL. I know people who get sent home with vicodin for a bad cough for goodness' sake. Now, I'm not saying that vicodin is what I need. But what I want to know is, can I have high expectations that my medical team should be responding to my pain and helping me figure out how to manage it thru various means? (not just analgesics but preventative, proactive, and other measures?) I feel like if I have cancer it is bad enough, if I need to keep working during treatment, if I'm going to lose my hair, if I'm going to need to force myself to freaking get up and walk when I don't want to, and my nether-regions are going to burn from chemo drugs, and etc and etc...what can I expect of people to help me out? My biopsy was so amazingly poorly managed that I cringe thinking about it...I have a different medical group in charge of it but I am definitely now very afraid of the pain. Talk to me about what I should expect of my team.

I grow more anxious with each nearing day of my 1st chemo. And I have had friends and family that I am sure in some way mean well BUT ... make comments like "you will be so sick you won't be able to take care of the kids" That just so isn't what I need to hear right now. Anyone else going through this too?

Welcome BKGameGirl! Sorry I don't have ANY answers to your questions. Just wanted to welcome you. I think I will finally get into a CT scan tomorrow if things go as planned and maybe back to MO on Wednesday. I still haven't had my training, actually I still haven't been told the scans etc. are okay. I guess that comes first. I have no idea how to manage SEs, but I think if you ask, you will likely receive. I am over an hour from hospital where I will get chemo, so I plan on asking a lot and being as proactive as possible. I hope none of us have the neuropathy and chemo brain.

azrescue, I find that lots of things people say throw me. I think sometimes people just don't get it an sometimes it is me in a bad mood. I had a friend today ask me if I was eating clean yet because it must be all the processed foods etc. people eat nowadays that makes young people get cancer. I just stared at her. I drink a natural green smoothie every day and try to eat as many fruits and vegetables as possible. Then I think, why do I find myself defending myself to people who are supposed to be my friends?

It sounds like I will do 4 rounds of TC. That is assuming all the tests come back clear. Congrats on that BKGameGirl!!! Something to be happy about.

Anyone have any ideas how to deal with the hair issue with my kids??? I have an appointment on Wednesday to get it cut very short (not shaved yet). I thought it would be best if I did it in a couple stages both for my kids and for me. Losing my hair is a tough one. I keep telling myself it's only temporary and grows back BUT still it's hard.

I was hoping to try to make it not seem scary or sad. Something fun. I was already thinking the kids can help me pick out hats, scarves, wigs. But how do I prepare them for the initial shock of it all. My 9 year old son is already upset about the surgery & the idea of a mastectomy. In fact, he said he doesn't want me to change. And specifically brought up how he doesn't even like it when I go to get my hair cut. Ugh! I don't want them to hurt. I remind him that no matter what I am still mommy and I still love them very much and that we will still have fun, etc.

Should I make it a fun family thing? Or should I go by myself? How do I make it seem fun? Haircutting party?

Sorry I feel as if I am rambling but I am very anxious over this.

azrescue - I bought the book The Year My Mom was Bald off of Amazon for my oldest. It explained about the different parts of treatment and gave her something to refer to when she wanted.

We explained about the medicine making my hair fall out. My oldest was concerned about it and was telling me she would want me to wear hats and hooded sweatshirts so she wouldn't have to see it.

I got a pixie cut nine days after my first infusion. I hated the hair cut, but it was a good transition for the kids. They were in school when I had it done.

Six days later my hair started falling out. I spent the morning tugging little clumps of hair out. The kids saw my very thinned out hair before going to school. My husband buzzed it later on that morning.

I had a hat on when the kids came home from school. Their curiosity won out and both girls (7 and 5 at the time) wanted to see it. My oldest actually said it wasn't as bad as she thought it would be. Her sister wasn't as thrilled and liked the hat better. But it became a non-issue for them very fast. I normally go hatless at home. I never went completely bald and probably have 5-10% stubble.

azrescue, my kids are 13 and 9. My boy is the 9yo. He is already an anxious little boy and takes meds daily. It has been hardest for him. He has called every day from school often crying and worrying about me. We found a good therapist for him and I am already seeing him using some good strategies. He became very teary eyed when our family discussed that I would likely lose my hair. He didn't want me to change. I kept my attitude very nonchalant and said hey I change my hairstyle all the time, no big deal, it will grow back. And we discussed all getting our hair buzzed together (not my daughter! Lol) he hasn't decided if he will do that or not since he usually lets it grow in the winter.

Today I got my hair cut shorter than usual with just one long piece in the front (kinda buzzed the rest). Both kids met me after school with smiles saying they loved it. Whether or not they really did doesn't matter. They are getting used to the idea and know I'm still mommy.

Sorry Jonesy. That's really sucky. I would be down too.

Hope things turn around Nancy really soon. You seem so strong. I am sure it will pass. I know what you mean about the down times.

The conversation about hair makes me think more about it. I have no idea whether i'llwant a wig, hats, scarves, nothing. And I guess I am ignoring it or putting off decisions about it. I have shorter hair so I guess I felt like it shouldn't be a big deal. No money on hairdressers and products. I think I intuitively know that there is an inherent vulnerability in losing your hair. Fear of judgement, self consciousness, feeling unattractive- these are perhaps the scariest thing. And like all of the SEs, you don't know how it will be for you.

For me it's the perceived loss of attractiveness. I need to process it and get that OUT of my head.

This past weekend, my girls and I bought 2 soft, simple beanie type hats together. They are 12 and 13 and were a bit sad to hear about the hair but they were excited to hear me talking about so many things that I could do to cover my head. Actually my 13yo asked, "do you lose the hair DOWN THERE?" and when I said yes she was very funny -- she said that doesn't sound like such a bad thing, mom. I laughed and laughed, the poor thing is not a fan of the nether region hair.

My friends have started a pinterest for me with cute hats and scarf-tying approaches - very sweet and I was super thrilled. Right now I think scarves for the office, hats/caps for casual. Who knows. I'm researching eyebrow pencil and watching youtube videos! If you want a link to the board let me know.

Questions:

1. Proactive about neuropathy- what are the possibilities for being proactive? Ice? When/how long/etc?

2. Proactive about preventing infection/catching something, particularly when coming into contact with general public / other people. Mask for public transportation? Gloves for public restroom? Avoid certain "no-brainers" when doing errands or at the office that wouldn't occur to people w/typical immune response? What about the gym for a class?

Woohoo!! No more chin hair, at least for a while!! I'll take that as a positive.

The consensus at work was that I was hotter without hair than with it. Spring, 2015.