Starting Chemo March 2016

Jonsey22 · February 2016

I agree ksusan. Hotter without it!

phaila · February 2016

I'm supposedTo start 3 weeks From todayish

Melgirl · February 2016

ksusan, definitely Hot!

Melgirl · February 2016

welcome to our group phaila.

Jonsey thx for the smoothie recipe, I will have to give it a try!

NancyHB · February 2016

Wlcome phaila!

Susan, totally hot. I really loved being bald - saved time and money, and I got to sleep in later. At first I felt vulnerable, but once I embraced it I felt free and empowered.

It's a process, and we need to be kind and patient with ourselves right now. *hugs* to everyone.

I learned this morning that I start chemo next Tuesday, March 1.

WannaCruize · February 2016

OK, looks like I will be March-ing with you all here. I'll explain a little bit about myself. I'm 56, and married for 37 years to my best friend. Our daughter, Tami, was diagnosed in 2012 at age 32 with Stage IV IBC (ER+,PR+,HER2-), no family history of breast cancer and very active and healthy. She lost her battle last November when it overwhelmed her liver. Then 2 months later I was diagnosed, but a completely different profile than hers. Mine is IDC, Stage 1a, and triple-negative.

After seeing the battle up close, I'm treating my cancer aggressively, because I want no regrets. I had my SLNB & BMX two weeks ago, with wide margins and no node involvement, no need for radiation. (finally some good news) I will start Chemo in March, just waiting on scheduling for my start date. My MO has prescribed Taxotere & Cytoxan (TC) every 3 weeks for 6 rounds, and then I'm done.

Because all my research had been concentrated on my daughter's profile, I had to start completely over. I'm very much at peace with the decisions I've made so far, but have a few questions for everyone here:

1. Port or No Port: How hard is CT on the veins? Since I had SLNB on the left, I can only use the right side. Tami resisted a port for her first go-round with AC/T, and it shredded her veins. When she had to return to IV chemo again, she did get a port, and regretted not getting it earlier. However, she was basically going to be on Chemo forever. In my case (hopefully), it's 6 rounds and then I'm done.

2. My MO has prescribed Xarxio - which is a newly approved 'biosimilar' form of Neupogen. Looks to be a pre-loaded syringes that I'm to inject starting 24 hours after chemo for 6 days. I searched for the name here and didn't get any results, but wondered if anyone else has been using this? I'm going to assume that since it's similar to Neupogen, that taking Claritin may help with the bone pain.

3. I'm going to try icing my hands & feet to avoid neuropathy. I work in IT on the computer all day, and walk for my exercise. I've ordered one set of the mittens and slippers, and am going to see if I can create extra inserts to swap out, rather than buy more sets. I'll know more once I receive them and can 'see' how they work. Anyone have any idea how long the TC infusion generally takes?

I guess that's it for now, good luck everyone.

NatsFan · February 2016

Wanna - I'm so sorry about your daughter. IBC is such a terrible form of this disease. A dear friend lost her daughter to IBC a few years ago - like your daughter, a young woman who should have had her whole life ahead of her. My condolences to you and your family. {{{hugs}}}

As to the port question, while you may only be getting 6 rounds of chemo, you'll also be getting lots of blood draws and other blood work done many times a year for the next several years. Because you've had an SNB, you're at increased risk for lymphedema on the affected side, so you should avoid having blood draws, blood pressure, or any needle sticks in the arm on that side. That means you'll be left with only the arm on the non-affected side to support all that bloodwork in the coming years. Getting a port now will save the chemo wear and tear on your veins, and may well help them hold up better in the years to come. However, I had TAC, not just TC, so maybe just having the two might not be as hard on the veins. You may want to ask your MO what she or he recommends for patients in your position.

As to time, my TAC infusions generally took about 4-5 hours. Yours may take a bit less since you're only getting two chemo drugs.

Melgirl · February 2016

oh wanna, such a sad story. And totally not fair for you to be facing this now. My heart goes out to you and your family.

No experience with chemo yet, but I am having a port placed tomorrow. It will be so much easier for blood draws and infusions. Some of the chemo can burn your veins with leakage causing permanent damage to the skin.

BKGameGirl · February 2016

Wanna, my sincere condolences to you and your family.

One thing that struck me about your words was the mention of the expertise and research that accompanies this illness, and how you are re-learning for your situation. I'm nearly overwhelmed with the learning. I have so many notes, both paper and electronic. One of my favorite things in the world is to go shopping at an office supply store...so I bought a binder just for this experience to keep not only my medical records but also my dr notes, research online, questions, etc.

I can't believe the number of hits when I google things for hair loss alone. There are thousands of choices for hats, scarves, wigs alone. Not to mention all the other stuff. I asked my best friend to cancel my haircut and highlight and eyebow wax for this weekend...I can't bring myself to make the call.

Questions for the experienced warriors among us:

1. Fatigue: does it manifest like, "sound asleep," or like, "I am on the couch and don't want to move, but I'm comfy," or like, "I'm too tired to do anything but I'm mentally restless and annoyed."

2. What does abbreviation "TE" stand for in some posts?

NancyHB · February 2016

BKGameGirl - great idea about the binder. I used an exandable folder (I love office-supply shopping!!) the first time and completely filled it up with treatment-related information. I just started my second one for this journey, and it's almost stuffed - gonna need another one! I carry it with me to every treatment so I can keep things organized.

For me, the exhaustion was both mental and physical. My SEs were like having a semi-awful case of the flu for a few days, so I just needed a nap when I came home from work. That only lasted a few days. Usually a power nap gave me enough energy to get through the rest of the evening. Exercise made a lot of difference, too. Even though it feels impossible to move some days, even just walking around the block often woke me up and felt really, really good.

"TEs" refer to tissue expanders, placed after mx but before implants to help expand the area under the muscle in preparation for later placement of implants.

BKGameGirl · February 2016

NancyHB... really quick, my TCHP "T" is Taxol for the group intro.

NancyHB · February 2016

Thanks!! I'll make that change right now! :-)

ksusan · February 2016

I didn't nap, but did rest.

Jonsey22 · February 2016

Welcome Phaila!

WannaCruize, your story breaks my heart. You are so brave. I think you are the third person who is in IT on this board. I am worried about neuropathy as well. That and chemo brain. Sounds like are treatments are similar chemo wise. I am doing 4 rounds of TC. I only did a lumpectomy but am doing the chemo to be aggressive and have no regrets as well.

Nancy and BKGameGirl, I laughed (out loud) reading about the office supply shopping addiction. My mom calls me "paper lady" because I constantly file papers and keep things organized. You two seem to take it to another level though, I just have a folder with all the papers in it. No tabs even lol.

HolaSandy · February 2016

Hi all!

Looks like I will be joining for March chemo. Tentative to start March 8th if my egg retrieval is complete by then. I'll be doing FEC-D (Fluorouracil, Epirubicin, & Cycliphosphamide for 4 cycles and then Docetaxel for 4 cycles)

I am scheduled to get my port tomorrow, and MRI, CT, bone scan, and echo set up for next week along with 3-4 fertility appointments in there too. Plus my wedding is on March 5th. I think I'm going to be exhausted before I even start chemo. Did I mention I have an almost 2 year old daughter? So glad to have you ladies along with me in this club none of us ever wanted to join. Wishing everyone all the best!

Melgirl · February 2016

Wow HolaSandy! I thought I was busy!! Congrats on your wedding!!!!

Loretta_J · February 2016

I am meeting my MO tomorrow. But want to join and help encourage all you who are starting treatment this month too.

More to follow.

786tex · February 2016

I think it was Rodney Dangerfield that said I wouldn't want to be part of any club that would have me as a member. It rings true for the wrong reasons here. I am so glad this group is here though I know none of us wanted to be members. I was diagnosed last Monday (IDC) and supposed to start chemo next week. 16 weeks with treatments every 2 weeks. The first 4 adriamycin, the second 4 cytoxan. Plan to try to keep working and taking classes but we will see how that goes. I'm also worriedly about neuropathy as I have type 1 diabetes. Hair loss will also be odd. Hard to wear a hat when it's 90 degrees here in May! I plan on a pixie cut before it starts to go so there is less to fall out. Hair today, gone tomorrow!

Jonsey22 · February 2016

Welcome HolaSandy! Oh my gosh you are a busy girl! Best of luck next week.

Welcome Loretta J and 786tex. Sorry you are all here but glad to meet you. 786tex, I am from Canada so right now I can use a hat/wig for warmth lol. I know what you mean about the heat though.

Best of luck as you find yourself navigating all of this.

I know I am in unfamiliar territory too. Take care

azrescue · February 2016

Wanna - I'm so sorry for your loss. And sorry you are now Facing this.

Jonsey - thanks for sharing the recipe. I've been doing green juice everyday. Ginger shots & a protein shake. I've been trying to build immune system to endure chemo. As well as, gain a couple pounds, I'm 103 @ 5'6".

Same here worried about neuropathy & chemo fog & allergic reactions (I have lots of allergies).

Well, I took step one with the hair today. Took it to a pixie cut. My 9 yr old hates it.

NancyHB · February 2016

Good morning ladies! I'm busy updating our status in the header post. I changed the order around so that we're not listed under our treatments, but rather by our names and the dates we start. We are not our cancer, and won't be defined by our chemo!! (yes, I'm a social worker). I'll scroll back through all the pages and ensure I catch everyone, but if I miss someone don't hesitate to PM me or call me out here. Thanks!

I found a great website last night that lays out all the possible SEs of each kind of chemo, including self-care tips, when to contact your doctor, etc. I'm finding it really helpful so thought I'd share it here:

http://www.chemocare.com/chemotherapy/drug-info/default.aspx#t

Melgirl · February 2016

Aw azrescue, it's so hard. But I bet you're rockin a pixie since you're so thin! I buzzed most of my hair two days ago. Just left with a mop of short curls on top.

Welcome to our new friends.

HolaSandy · February 2016

Thank you for the website Nancy! I definitely looked up the cocktail I will be getting and have a bit of a clearer picture of what to expect.

I also agree with not letting this define us! I have been very careful not to refer to this as "my cancer." I want no ownership over this and view it as if it is a foreign body that has invaded. Like a bad sliver. I just want the thing out. Emotionally healthy? I don't know, but that's how I'm coping with it for now. Things could obviously change throughout this process.

As for the hair thing, I had a bit of a break down last night. I'm not scared of losing my hair at all. For me, it is just part of the process and a temporary side effect. But I have fears about what my daughter will think. She doesn't even like it when I wear contacts instead of glasses. I'm scared that I will look like a scary monster to her without hair. My hair is currently very long and I have a lot of it. Any suggestions? I'm for sure going to cut it short after the wedding so it's not a big shock for anyone. But maybe I should wear it up under a hat for awhile before so it's not so strange for her? I just don't want her to be wondering where her mommy went and who is this creep she's been left with

NancyHB · February 2016

When we're together in this fight I like to call others by their names, but also understand if someone prefers otherwise. So if it's not obvious my name is Nancy. :-)

Hi Sandy,

You have so very much going on right now - you're an incredible inspiration. I know we're all doing what we have to to get through this time, but it really is a testament to the strength we can find when we need to, especially when we may feel we just don't have it in us. I hope the next couple of weeks are wonderful for you as you move towards your wedding day, and that even though you're in the middle of preparing for treatment, it takes a back seat to what should be one of the happiest days of your life.

I agree completely with not letting this cancer define us. It can be easy to do. Someone on another board says, "I am ________" (fill in the blank with her diagnosis) and she once provided a very eloquent explanation as to why she defined herself that way. It bothers me every time I see it, but I realize it works best for her and can respect it. I am not my diagnosis, rather I feel like my cancer is a part of me that needs to go. We all cope in the way that works best for us, and that's all that matters. Nothing at all unhealthy about it!

I guarantee you won't look like a scary monster to your daughter - but you will look different, and *that* may be scary for her. The hardest part about this stupid cancer is that we can't protect those we love from the hard emotions they're going to feel, especially our children. Our children are used to us being "us", so change can be particularly difficult for them to comprehend. Really young children like your daughter can't understand our explanations - you just don't look like mommy anymore. Especially if you have long hair, that haircut will be a big change for her. You could take her with you for the haircut so she sees it happening. If you think that will upset her then maybe she sees you after the haircut. I like your idea of wearing the hats starting before you lose your hair. Maybe you can make an afternoon of hat shopping for each of you - get matching hats? And if/when she ges upset about your hair, or the change she sees, work through it with her. Kids are incredibly resiliant, and they take their cues from us. That doesn't mean we always have to be happy and carefree - that would be disingenuous, and this experience really sucks. But with some people - especially our kids - we don't have to share the whole story all the time.

Edited to add: I wore scarves and hats the first time around my granddaughter. She finally asked what I look liked without and I let her take it off me (she was 4). She looked at me very thoughtfully and said, "Grandma, you look weird. Pretty, but weird. But I like it!" And it started a conversation about how everyone is different, and how we shouldn't judge others because we don't know what's going on in their lives. Sorry - ever the social worker...)

HolaSandy · February 2016

Thank you for the kind words, Nancy. My actual name is Kristyn. Short story behind my username: years ago in Mexico, my friend met a guy who started calling me Sandy (and saying "Hola Sandy!" because I was ALWAYS dusting sand off my pants, etc. Even if I wasn't at the beach. It just stuck to me, and so did the name.

I love your suggestion about bringing my daughter with me for the haircut. My MIL is a semi-retiredstylist and will hopefully agree to do it in her home for us. She has previously not wanted to cut my hair because she said I have too much of it, but she has been so supportive of me through this. I can't imagine her refusing to cut it this time.

Jonsey22 · February 2016

Since we are sharing names, Jonsey is my nickname. My real name is Candy. I answer to either though.

azrescue · February 2016

My first name is Stephanie ...

My screen name came from ... I grew up & worked in AZ, & I was (up until a couple of years ago) a firefighter/EMT. I retired when my kids reached preschool age, and I stay home with them & homeschool.

azrescue · February 2016

A question about nail care ...

How best to lessen risk of nails turning color and/or falling off???

Loretta_J · February 2016

I too have Type 1 diabetes. I too am concerned about the side effects from my treatments.

jbdayton · February 2016

In regards to fingernails and toenails. I kept mine short and polished with clear or slightly tinted polish so they could be monitored. My fingernails stayed in great shape. I do now 3 years later still have ridges in my nails but good color and strength and they grow at a healthy rate. Unfortunately, my large toe nails did discolor and I lost them twice. I did and still do suffer from neuropathy in my toes and ball of each foot.

I know some say to use a dark polish but my MO wanted light polish so he could monitor any changes along the way. You might ask your chemo nurse for any preferences in color. My chemo nurse said the most important thing was good nail care and a good polish for protection.

Starting Chemo March 2016

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