Chemo starting October 2017
I will be starting 4 rounds of dose dense AC chemo in early October. Wondering if anyone else is starting chemo? I'd love to support one another. I am trying my hardest to prepare myself for it (looking for tips and other people's experiences).
I just turned 41 years old. Diagnosed in July with ILC/LCIS and ER+/PR-/HER2- (1.6 cm left breast tumor). No evidence of cancer in nodes. But after Aug 31st BMX and Oncotype test (came back 6), they said I was actually IDC/DCIS and ER+/PR+/HER2-. And two positive nodes, each with >2mm. With an Oncotype score of 6 but with 2 macrometastases, I was recommended the first half of dose dense AC+T. So, just the AC, not the T. I have a unique situation in which my MO never gets an Oncotype score for those who are node positive (he goes straight to recommending dose dense AC+T), but my mom is a 4-year BC survivor, and my sister was diagnosed a month after me (she's 46). So I heard about the Oncotype score from my mother, and I wanted a test done for myself. My MO was shocked that it came back a 6. He said unfortunately the science is just not there yet for premenopausal women who are node positive - i.e. whether a low Oncotype score can merit skipping the chemo. He says in his heart of hearts, he feels after the research is done (which it's being done now or very soon), we'll all find out that the nature of the tumor is the same for premenopausal women vs. postmenopausal women, i.e. the Oncotype test will be for both pre and post. But he cannot scientifically at this time back up a decision to skip chemo based on my Oncotype score, because I was node positive.
So, I get my chemo port in next Tuesday, chemo education on Wednesday, and chemo starting a day or two after that. I have a husband and two kiddos, one 3 years old and one who is 7. And a lovely Golden Retriever. Looking forward to supporting one another during this difficult season.
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Hi, seemaryrock!
I received my diagnosis about 3 weeks ago. This past Wednesday, I had my PET scan & echo. Thursday morning I received a call that I needed to get another biopsy because the PET scan showed an additional spot of concern. I had a lymph node biopsy that afternoon, and it was confirmed that I have a malignancy in at least 1 lymph node in addition to the IDC & DCIS that I already had been diagnosed with. My port was installed yesterday, and I see my oncologist on Thursday for lab reports, etc. Immediately following that appointment, I will receive my chemo education. Once those are over, I should have the schedule of my chemo infusions.
Although I was BRCA 1 & 2 negative, my mother (who is still living) had breast cancer twice. My sister (who is a nurse) told me that mom's first cancers were the same as mine. How coincidental is that, even if they didn't show as gene-related?
My oncologist told me at my last appointment that he was pretty sure I would receive TCHP for 6 rounds (once every 3 weeks). Since I am HER2+ but ER-/HR-, I would have to have Herpecin for at least a year. The mass has more than doubled in the past 3 weeks, and my Ki-67 was 70%. I'll have surgery once the chemo is over. My doctors want the mass to be as small as possible when we do that.
I'm not going to lie...I'm trying to maintain a positive attitude, but this stuff is scary! I didn't have time for cancer.
I'm here to walk this path with you.
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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
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Regarding genetics, my sister and I have the 1100 delc gene - we both had breast cancer as well as my mom who did not have the gene.
Our breast surgeon said she sees quite a few multiples in families that do not test positive for genetics, but she treats them as genetic because
she also believes that gene mutation has not been found.
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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!
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Hey Sisters,
I was diagnosed with BC two weeks ago and will be starting chemo next week or the following.
I've met with the oncologist, the surgeon, had a pet Ct scan, an echocardiogram, port placement, chemo education and am scheduled for an MRI to establish the baseline tumor size. Then we begin.
I just want to get this thing started as soon as possible.
The oncologist and surgeon work together as a team and agree that chemo should be the first step before surgery. They too want to shrink the tumor as much as possible before surgery.
The plan is 4 rounds of AC on a bi-weekly basis followed by 12 weekly rounds of taxol and 1 year of herceptin. The surgery is planned immediately following the taxol, then radiation.
It is too overwhelming to me to look at the long range plan so I'm going to take it one segment at a time.
For now I will focus on chemo only. I plan to work during my treatment. I say "let's get 'er done."
So glad you are all here so we can share our experiences
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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
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Me too, sister. Port on 10/10. First dose of A/C 10/12. I have no idea what to expect. None. I don't know what to do about work. I'm just showing up at the cancer center like they tell me to.
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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
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Hi eightoutof8 - I am also in Philly area and TN. I just finished AC and will start Taxol 10/5. I am at Fox Chase. You're attitude is great - so happy you have family and work support! Being TN can be so scary, but getting the right and accurate information makes it better.
To all starting chemo this month - it is tough, but doable. This will be a great place for you to get support. A great place to let it all out.
Hug
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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?
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I won't lie - it can be tough, but everyone is so different. My main issue throughout was dealing with nausea, even with the medication. The great thing about Fox Chase, however, is that they really work with you to alleviate side effects.
My worst days were always Sat-Mon, with Thursday infusion. Infusion 3 was the worst because I had my period. Never hesitate to contact the nurses with any issues - they truly want you to feel the best possible.
I found drinking water and exercising made me feel better. Exercising may be the last thing you want to do, but I walked every day and afterwards was always glad I did
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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.
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I got my port placed 9/29 and chemo training meeting 10/4. So guessing chemo is starting really soon.
Question I have is about flu shots. Did you get your before starting chemo? I know chemo really lowers your WBC and makes it easier for you to get sick. My husband got his flu shot this weekend and my 5 year old needs hers but it sick right now, so it will probably be next week before I can get her in
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i got flu shot and menengitis vaccine before chemo
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Hi ladies,
I have finished my 4rounds of AC now I’m on my third taxol. AC is a tough one but it is doable. My days with AC was, bad days usually started on dayto day 7, low energy, appetite low, taste buds changed. Also deal with GI issues. After day 7 things are going uphill, that would be my time start eating and gain my energy back. Do watch for mouth sores because that can get nasty.
Many people have bone pains, but I do not. If you have any question you can find me at July / August chemo thread, or you can send me message.
There will be rainbow at the end of the tunnel waiting for us, Hugs and prayers for everybody!
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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.
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Hi, ladies,
I wondered about the 'flu shot too. My husband really does not want one because 20+ years ago, he swears he got the flu from it. I have my next oncologist appt on 10/5, so I will ask about all of that then. As it gets closer, I am getting more apprehensive. This whole process is mind-numbing.
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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.
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PK, thanks! What other immunizations do I need to ask about? What else do I need to ask at my appointment?
Do my family members all need flu shots, too? (My kids are grown & gone, but do visit).
I am a high school teacher. What precautions should I ask about for work?
Thanks for the guidance.
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I haven't even thought about flu shots but did get the Shingles vaccine. I had shingles 2x in 2014.
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Fish - I would try to do the Shingles along with flu shot. I wished I knew this before hand
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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.
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Thanks for the tips, ladies! Hang in there! Together, we can do this...
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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.
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Another exhausting week of appointments. Echo, met with plastic surgeon, blood work and chemo training.
Chemo starts Monday 10/9. 4 AC treatments every other week followed by 6 Taxol every 3 weeks. I am TN.
Got my flu shot today. Nurse said 48 hours prior to starting chemo. Trying to get my daughter into Pedi this week for hers. Filled all my scripts and overwelhmed by all the drugs (5). I am someone who hardly takes anything, not even tylenol
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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..
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The hair loss is going to be hard for me. I have long blonde hair. Well dyed from a dirty blonde with some grays mixed in.
I was thinking of getting it cut into a short bob this weekend. I not ready to go any shorter. I say that knowing I will lose it all, in a few weeks
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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!
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Hi Everyone,
Agatha, I have had my chemo training and prescriptions for anti -nausea (compazine and Ativan). Was supposed to start chemo next week but had a horrendous experience with getting a baseline MRI so I have been pushed out another week. I really want to get started.
I too got a call from my insurance case worker. Says she wants to check in with me every two to three months. The "team" is getting too big to keep track of.
Love hearing everyone's stories. Learning a lot
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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!
-Mary0
