Topic: Chemo starting October 2017

Sep 30, 2017 12:00PM seemaryrock wrote:

Hi Fishingal68!

I'm sorry to hear about the additional spot of concern and positive lymph node. That too was hard for me to grasp.

How did the port surgery go for you?

I, too, got genetically tested and everything came back fine/clean. However, my genetics counselor said that there's a really good chance for those who have BC in their immediate family, that it IS in fact gene-related, but they haven't yet discovered that specific genetic mutation. I find it so odd that my sister, my mom, and I all have it and yet it's not genetic? Maybe in 10 or 20 years, so much will have progressed in this fight against BC.

Thank you for responding. It IS scary. The unknown can be awful. Are you going to need to work during your chemo treatment?

So glad to walk through this with you.

-Mary

Sep 30, 2017 01:09PM fishingal68 wrote:

Hi, Denise-G-- I have 3 sisters, 2 daughters, 9 nieces, and 3 female cousins on my mother's side of the family. They all breathed a sigh of relief when my BRCA tests were negative. However, on that same side of the family, 2 male cousins and 1 female cousin (who is now deceased from her battle with cancer) have had different types of glandular cancer. I often wonder if there was something else genetically-speaking that linked all these cancer cases. All of the cousins & I were in our 30's and 40's when were diagnosed.

Mary --- The port placement was easy. The iv was the worst part of it for me. Once they had that placed and moved me to the procedure room, I don't remember a thing. I'm a little tender and swollen (which is to be expected), but my pain is virtually gone. I feel a little pressure, but I've been taking my Tylenol regularly (more for the lymph node biopsy site than the port site).

I teach high school, and I have to work, so I am hoping the chemo won't wipe me out too much. Thankfully I have a student teacher this semester. She is wonderful! She is already doing most of the lesson planning & grading, so I get to 'rest' during class. Once her student teaching time is up, she is going to try to be hired as my full-time sub for when I have my surgery. That won't happen until early next year.

I've been honest with my students & my colleagues about the process. I told my principal that once I came to school with a bald head everyone would know anyway! ;)

In the meantime, I am working on my dissertation. That may be put on hold for awhile, although finishing it up would be a great motivator.

The funny thing about all of this is that I don't 'feel sick'. I hate being sick, and I really hate having to count on others. I've always been the one to take care of them, and it is really hard for me to accept the fact that now I need help. My worst SE right now is how tired I am all the time. I want to feel like ME again!

Keep me posted on how you are doing!

Sep 30, 2017 05:22PM Moderators wrote:

Welcome, Simbobby! We're glad you've joined our community, and hope your find it to be a source of support and encouragement as you begin your treatment. One day at a time, you'll get through this!

The Mods

Oct 1, 2017 11:07AM randrgirl wrote:

Hello - I start this week. Port placement early morning on 10/5-- first dose of A/C later the same day. It's felt like a long road but actually it all has happened so very fast. Life is so vastly different for me than it was day before being diagnosed in late July. I know that moving forward this is my life now-- and it is forever changed and will keep evolving.

A lumpectomy was recommended by my family hospital as well as by my second opinion hospital. I was willing to go the full monty and have a mx if necessary, but I have a fuller figure and breast size and all the docs were in agreement that I was an ideal candidate for breast conversation surgery. Deciding to take treatment with the docs who gave my second opinion (a hospital that focuses on cancer treatment), the BS there wanted to do additional testing to make certain that a lumpectomy was appropriate still, I did the genetic testing which turned out to be negative, and had additional scans as well to make certain my other breast was clear, as previous mammos and CT scans had shown. The test were all clear and my BS said that we could move forward. The MRI showed a bigger tumor size than the ultrasound and scans showed-- but my BS said he believed it was smaller. I had a lumpectomy in September. My BS was correct. The tumor was much smaller than the MRI showed, and the pathology was very good over-- negative margins, no nodes involved, etc. However, the TN status makes receiving chemo a must for me as a preventative measure against reoccurance.

This was a downer for me because before my diagnosis I had accepted a job that I had really wanted. My docs believe I can work through treatment, so I spoke to my new employer and they were amazingly supportive and they value my specialized skill set so they are willing to work with me through this journey into the unknown. So...I move forward. There is relief in being to keep forging ahead with this journey, yet, chemo in itself unsettles me but I don't know what is worse; having to get chemo or knowing that there are no other options for preventative treatment due to the TN status.

I feel that I'm brave about it all for the most part as the prognosis my doctors provide is good, however, the treatment and the long journey I must take on the way makes it hard sometimes to see things in a positive light. Having said all that, I have a great medical team, at once of the best cancer facilities in my city and in the country. I have a loving family, supportive friends, and an understanding and caring place of employment. And, I take none of those things for granted because I know there are others who are not as fortunate. I'm very appreciative of BCO for being here for all of us and for giving me a place to ask questions and simply review the experiences of others who are dealing BC and who are taking similar journeys. I've cried sometimes alone as I read the stories of others who are dealing with all of this, some who are further along in treatment, others who have just been diagnosed and feel like the wind has been knocked out of them -- and I remember having those same feelings and I'm amazed that I've already had surgery and now I'm about to have chemo. So, everyone here was right; each day gets easier to face as we have a plan and know what our treatment plan will be.

So, now that I've shared all that, in prep for my first treatment, I got all of my hair cut off. Not a close cut but tapered int he back with a little bangs around. Everyone says it will be easier to let the hair got if we start it off on our own. My hair has always been a pride and joy for me, (I know, it's only hair - still hurts tho) but I realize that my life is more important. I didn't cry the way I thought I would when I got it cut, but my stylist did. I only told two of my sisters about my hair cut the others will see tonight.

My sisters-- I have four of them (and three brothers) - will be coming over later today to clean my condo because they read about how clean everything must be. They do not trust my cleaning skills. lol Being the youngest of 8 children (hence my name eightoutof8) I just sort of let the older ones go on with their opinions. I mean, I didn't get to be a business professional because I know nothing, but if they feel like they need to do something that makes this journey easier for them to endure, I welcome it. Clean away. :) I know this is hard on all of my siblings. We are a very close bunch. From there, one of my sister is collecting all of the things that have been recommended we keep around for SEs. I won't know more until I see how the treatments hit me. My job is great, the plan is that I will take treatment days off (Friday), and possibly the Monday following (but I plan to work depending on how I feel), and then back to work in general until the next treatment. We will play time off as SEs may come up. Heavy sigh.

Well, that's all for now. Thanks for reading. Wishing anyone starting this month love and light. I feel like the Hobbit...taking an 'unexpected journey'. Hopefully we will all come back to share our 1st treatment stories.

-G

Oct 1, 2017 12:07PM randrgirl wrote:

Hi VL22- I am at Fox Chase as well as my first A/C is on 10/5. You are beginning the next leg of chemo I see. How did you do with A/C if you don't mind my asking?

Oct 1, 2017 12:41PM randrgirl wrote:

VL22- thanks for the tips. My MO said the same thing about staying active as it would help with SEs so I'm going to do my best. Being in the city I do walk everywhere so I will try to keep up that up. I also have a gym right in my building so I can hop on the treadmill a bit each morning before work or when I get home depending on how I'm feeling. I also drink a great deal of water on a daily basis so I will just continue to do as I usually do and then some as others have also said staying hydrated is important. I do feel very confident in my choice to receive treatment at Fox Chase. I'm glad you feel good about them as well. I will definitely reach out to them as I have SEs. I still get my period so I will definitely keep an eye on that. My usual infusion day will be Friday. It's only Thursday for the first one due to some things I've already schedule for the Friday. I will keep a notebook of my treatment weeks to see which days bother me the most. Sigh. Thanks for your honesty. I know it won't be easy. I already cut my hair in prep for the bigger fall out. Still don't think it will be easy but I'm ready.

Again, thanks for responding. Glad to know someone local, and going to the same center as well as knowing you are getting through this journey. I know it can be done. :)

Oct 2, 2017 03:57AM Castigame wrote:

i got flu shot and menengitis vaccine before chemo

Oct 2, 2017 08:28AM MrsWinnie wrote:

ill be joining this group I will be starting chemo and Herceptin soon. Just waiting on some tests on my heart first to make sure im strong enough for treatment. im 43 my mother was 48 at dx. Will find out about genetic testing later. My next big choice is ovaries out or shots and then AI pills. Hello ladies. Hugs to all and best wishes to all that has already started treatment.

Oct 2, 2017 05:33PM PauletteK wrote:

Fish -do all the preventive shots before chemo. I wish I knew this before. Some MO let you do flu shot during chemo mine won’t.

Oct 3, 2017 04:09AM MrsWinnie wrote:

I haven't even thought about flu shots but did get the Shingles vaccine. I had shingles 2x in 2014.

Oct 3, 2017 08:11AM AgathaNYC wrote:

Hello SeeMaryRock, Fishingal, kamalokitty, Simbobby, Eightoutof8, Jennifer522, MrsWinnie! I'm in the club, too. (sorry if I missed anyone on the list!)

I'm having my first session of neoadjuvant chemo this Friday, 10/6.

My MO wants me to have 2 rounds of chemo and then check my tumor size. If it isn't responding then I'll have my mastectomy right away. If my tumor is responding, then I'll continue with the full course of chemo, A/C every two weeks followed by another chemo combo tbd.

Eightoutof8 - I hear you on being the youngest. I'm 6 out of 6, with five older brothers. None of them offered to come over and help me clean! You're lucky :-)

I've been reading these boards, collecting tips, getting all the supplies I think I'll need. Later today I'm going to pick up the wig I ordered. I got my dental work taking care of but not a flu shot or shingles vaccine. I should have dealt with that....

I still want to put together a playlist of music to listen to during treatment, stuff will make me happy.

Good luck, everyone! I'm glad we have each other as start off on this leg of the trip.

Oct 4, 2017 03:49AM MrsWinnie wrote:

ugh dental work. I am in need of that too... But i need to be put out. And when i got the DX thebdental clinic called.. Had to postpone it for surgery. Now no time to book it either due to chemo starting soon. Guess ill pray that my teeth can wait till chemo is done... Ugh theres always something.

Oct 4, 2017 03:41PM MrsWinnie wrote:

Me too Jennifer I hate taking meds, Surgery was nothing for me.. wasn't worried about that at all, terrified of chemo and all the drugs..

Got my dates today. Chemo 11th. A heart test just before Mugup? (picture of heart) Then 17th is my Echo. hmm wonder if I should have echo first? my understanding they were seeing if my heart was up to Herceptin not the chemo.. so much information to take in.

When is everyone shaving their hair? I know my mother waited til her hair had started to fall out and at that stage it hurt. So thinking I'll shave it early. but I have to decide when..

Oct 4, 2017 07:18PM AgathaNYC wrote:

Hi, Jennifer. I'm not going to have an easy time with the hair loss either. I just picked up my wig today. They did a pretty good job with the hair line and the coloring (I have long blonde hair with white/gray bits, too.) I am going to take it to my stylist next week to have it trimmed. At the same time she's going to give me a bob - but maybe shorter.

MrsWinnie, I think I'll shave my head as soon as my hair thins out to the point where I'll want to start wearing the wig. I'm afraid I'm not going to one of the brave women who are confident and feel beautiful without hair.

I just got a call today from a nurse case manager from my insurance company. I don't love the idea of adding a new player in the mix but maybe it will be helpful. She said she'd look into having the denial of my home injection of Neulasta reversed. Do you guys work with someone at your insurance company to help with claims and such?

My first chemo session is day after tomorrow but I haven't been given any prescriptions to fill or had any training. I was just assuming that would all happen Friday when I go in. Has everyone else had training and gotten Rx's?

I'm glad we have each other to talk to about this!

Oct 4, 2017 08:19PM seemaryrock wrote:

Thank you, thank you, for all of you brave women who have replied. I am so thankful we are not alone. This week, I got my chemo port (ooof.. so sore!), an echocardiogram (which turned out to be fine), chemo education, and a flu shot. Tissue expanders filled, too. And I am getting my teeth cleaned (6 month checkup/cleaning) tomorrow. More appointments too for my kiddos - this seems to be a very busy week. Thinking of getting a facial. Something that I can feel pampered a little before chemo starts (I have a start date - Monday, Oct. 12). Has anyone gotten something like that? Something that helps them to rest, to be centered, to just be.

Simbobby - How are you doing? Is there a chemo start date for you yet? Have you gone through chemo education? I am trying to come up with a list of tips and things for us all, even though we may be doing different forms of chemotherapy.

Fishingal68... - You have your appointment tomorrow, right? I asked my breast care navigator about the flu shot, and she said absolutely get one. It will provide protection in some capacity during chemo. I never thought to ask about the shingles shot! Hmmm. And YES - all family members should get the flu shot and anyone who comes to visit you, too.

Denise-G - how was chemotherapy for you? I see you did the AC + T. What was your experience? I need to check out your blog!

kamalokitty - are you going to have chemo education? What kind of questions do you have? I've been googling and trying to get others' experiences to find out what it's like.

eighthoutof8 - How are you feeling about tomorrow's port placement and chemo start? I, too, was diagnosed in late July. I'm thankful for the positives in your story - thank you for sharing so much of your heart. So glad your new employer is behind you in this. I, too, am going to cut my hair very short. I have long hair and love it. What a bummer, but I don't want to lose it in the ways I've heard. I'd rather donate it and get a pixie cut. Looks like I'll have some fun winter hats to wear during my chemo since we're getting into fall and winter here in the midwest. Oh who am I kidding. It's still 80 here some days. I do love the fall season. I have also read about water intake and walking a lot. Wishing you the best tomorrow! I'll say a prayer for you tonight. You'll get through this! We're with you.

VL22- Thank you so much for your support for eighthoutof8 and we're wishing you all the best as you start on Taxol tomorrow! It's going to be pretty different from AC, right?

Jennifer522 - I just got the flu shot today (I was advised to by my MO, who advised all of my family members to do the same, as well as anyone who visits me). Glad you got yours. So, chemo the 9th? I know this is all very overwhelming. I am like you.. I do not like meds much. So it's a lot to take in. Especially the hair. Do something for yourself before chemo starts. Something pampering, something that replenishes you. I too had an exhausting week of appointments. And the week is not over yet!

AgathaNYC - how are you feeling about starting Friday? I think you can still get the flu shot, even if you start chemo soon. Double check with your MO. I'll pray for you that the tumor would respond and respond well. You should definitely be getting chemo training and prescriptions. Can you double check with your breast care navigator (do you have one of those?) and/or your MO. Let us know what you find out. They should be giving you these things in time for you to fill at a pharmacy before your first chemo infusion (I would think!).

MrsWinnie - I think most people get an echo before the AC kind of chemo, but not necessarily before the other kinds. Chemo the 11th, then? I am getting a haircut in a few days. A pixie cut, I think.

I hope I didn't miss anyone, but I might have. And I hope I didn't mix up the info. My mom was chatty cathy while I was typing. She is so sweet, helping me with my 3-year-old while I have a billion appointments. She lives in Nebraska, but is visiting me for a few days so I can do these appointments and get things in order.

We're in this together! <3 -Mary