Starting Chemo, November 2013 Group

Hi everyone...cannot thank you enough for all the posting, which is helping me prepare for the road ahead of me. I've lived with tons of adversity in my life but for some reason, the breast cancer diagnosis (and everything that comes with it) has been one of the greatest hardships by far.

I'm feeling LOADS better 'cause I FINALLY got my upcoming schedule confirmed, barring one piece...the chemo teaching. Because I am being placed in a Herceptin Study (not sure which Arm I will be randomized into) after being removed from a previous study, my chemotherapy schedule has been a mess.

But I just spoke with my Manager (an RN) of the research group and he is finally finalizing things. I will have pre-chemo blood work...again...on Tuesday, 11/19/13, followed by an EKG and ECHO, which are required for my placement into the Herceptin study. My port is being placed on Wednesday morning, 11/20/13. Rather than trying to fit chemo in on the same day (or within 48 hrs of port placement), I'm scheduled for my first round of chemo on Tuesday, November 26th at 11:15 am.

Will definitely receive Taxotere and Cytoxan x 6 rounds, along with whatever it is they give-smile. May or may not receive Herceptin, depending on which Arm of the study I am randomized into. On Wednesday, I'm back to Ann Arbor for the Neulasta shot, which I've protested receiving...but my MO won't hear it...he's pretty thorough, I guess...and he wants to cover all bases.

Going to make an appointment the week after Thanksgiving to have my head shaved at the hospital's Cancer Salon-Inspirit. I'd rather have my hair come off on my terms than wake up to losing it in clumps on my pillow...already went through some of that with Bariatric Surgery back in April 2013.

Absolutely will need all of you wonderful women for support, I know it!!! I am pretty isolated here in Michigan since moving from New York City several years back. AND I HOPE YOU WILL NEED ME TOO!!!!

Never felt so alone and frightened in my life...I'm finding that most people without familiarity (personal experience) with cancer SIMPLY DO NOT GET IT!!!!

Best wishes and prayers to all of us for the easiest journeys through all of this.

Fondly,

Toni Lee

Toni Lee, I have found this site to be awesome! I was so prepared when I went to class the nurse was shocked. Had my first treatment TC today, went great, went to store afterword and planning to make dinner soon, things taste a little bland but I'm sure it will keep changing as time goes on. I get my neulasta shot on Sunday and have my Claritin in place. I pray the next few days of SE are minimal. I will be thinking of you sll!

Veronica37! you are a day behind me, had trouble sleeping last night from the steroid...and to use bathroom from drinking so much! So very tired today...but other than that no unusual side effects, I wonder if they come later or just won't come...hoping the latter.

Welcome toni! This is a good site and I have seen SEVERAL threads on using Claritin to help with bone pain with neulasta shot, so if you need those try the Claritin before and during...

good luck!

Thank you again to EVERYONE! I'll definitely check out the Taxotere/Cytoxan thread, Melrose...and thank you for the PM!

Virginia...I am being randomized into a study that is looking at the effectiveness of Herceptin for woman (like myself) who CLINICALLY FALL INTO THE HER2/NEU NEGATIVE RANGE BUT WHO "STAINED" ALMOST INTO THE POSITIVE RANGE VIA THE FISH TEST.

Does this make sense?

The study is being conducted by the National Surgical Adjuvant Breast and Bowel Project and is technically "Study B-47." The main purpose of the study is to determine if adding targeted therapy Herceptin (given with Taxotere and Cytoxan) for women who fall on the "low to moderate HER2/NEU FISH Scale range" (clinically & technically considered HER2 negative or "low" HER2) changes the incidence of a local recurrence and/or distant metastasis in such women. Obviously, it WILL help, as smaller studies have shown.

Now research is needed to change clinical protocol, FDA regulations, INSURANCE PAYMENT, etc...and make the medication available to any woman who has a tumor that "stains" for HER2 at all.

Currently, like everything else, there is a negative, moderate and positive FISH stain range (the most accurate test to determine HER2/NEU status) with only those in the high moderate to positive range being "approved" for Herceptin treatment.

Don't know which "arm" of the study I'll be randomized into. Of course, I'm hoping and praying it is the "arm" that receives Herceptin.

Hope I answered your question!!

o.k. here's a question- I thought our periods quit on chemo. and further if you are to take Tamoxifen then you would be into menopause and no periods..

I read on another thread from this site, of women continuing to bleed on Tamoxifen or even bleed more! I thought that was the silver lining on all of this to be 'put into menopause'...now I'm annoyed...more ups and downs I thought it could end..

How's everyone doing this morning? Sleeping peacefully, nausea free, and pain free with any luck!

Audra67 - I've read the closer you are to natural menopause the more likely it will be permanent. Peri-menopause has been my hot friend for awhile so I'm expecting chemo will push me over the edge. Very mixed feelings about that.

Hoping my plan is finally finalized....and that I'm not jinxing that by saying so!

Plan #1 was: Port placement ASAP, chemo start on the 18th. Surgeon said "too soon."

Plan #2 was: both port placement and chemo start on the 25th at onc's facility.

Plan #3, and I hope this sticks: Port placement by my original surgeon this Wednesday, the 20th, and chemo start on the 25th. Sounds better to me.

Of course, I've caused all this confusion myself because I got surgery thru one cancer center, in the town nearest where I live, then chose to see an oncologist at another cancer center, and then will be returning to the original cancer center for radiation when I'm done with chemo. My surgeon and onc. had never heard of one another lol. I guess these cancer centers generally run like well-oiled machines and I've put a kink in their machinery. At least my onc and RO do know one another, have worked closely together in the past, and admire one another, so hopefully this will get simpler as I go.

Kind of glad, in a way, that I'm coming in on the tail-end of this month's group: I'm very encouraged by all of you, so I reckon I can do this.

Hello Ladies, I had my first dd AC on Thursday 11/14. I had my neulasta shot yesterday. I was quite nauseous the first day and felt a little better yesterday. The neulasta shot has me a bit achy. But it's day 3 and I still feel quite run dine and don't have much energy. Will my energy be up soon? I know everyone is different. I had to take anti nausea pill this morning as I wasn't taking any chances and it has helped. I guess I should feel good that I have one AC down so three more to go. I hope the 12 weekly taxols are better than this. Thanks ladies.

Hi ladies,

My 1st chemo was yesterday. I have to say I felt quite nauseous, no vomiting (yet) and very tired ( I didn't even feel like talking) and slightly shaky. It's been over 24h and I am starting to feel better. I had a headache at night due to my nausea med called Stemetil. I am also running a bit of a temperature 37.2 C with flushed cheeks, but not high enough for an ER. I don't know if this is due to the treatment or the cold I caught from my family members. I also developed a mild facial acne right after my treatment.

I just self injected a dose of Neulasta (6mg) for $2,790 (not out of my pocket thank goodness). I am on FEC (Fluorouracil, Epirubicin, Cyclophosphamide) for 3 cycles every 3 weeks. Then another 3 cycles of Docetaxel or Taxotere again every 3 weeks. My radiation is suppose start after that 5w x 5d.

I had a R mastectomy, but no reconstruction yet. I am thinking about it down the road. How did you decide on your type of reconstruction (or not)?

I am a Registered Nurse. I graduated from nursing school in 1978. I have been a critical care nurse and now work on a trauma/neurosurgical floor. Oncology is not my area of expertise.

I have not posted before but have read almost all threads on this site. I was originally dx with DCIS and elected to have a BMX as there was some abnormality in opposite breast on MRI biopsy. I am a nurse on a surgical floor at a major hospital and wanted to have my surgery at my hospital and be cared for by nurses on my floor, but my surgery was bumped back 3 times and I decided to go elsewhere as the waiting was killing me. Poor experience at other hospital, but I am having a DIEP flap reconsturction and must return to this same hospital. Breast surgeon said all was clear and to schedule reconstruction. I looked at my path report on the hospitals "MY CHART" and found that my cancer had an invasive component and that I was HER2++. I was freaked out and angry that I was not told this. I did not understand what HER2++ meant. Left breast DCIS changed to 11cc DCIS with 0.2mm HER2++ IDC and ADH in right breast. Surgery with tissue expanders went well and expanders were filled to 700cc 4 weeks post op. Developed an infection in Left tissue expander and hospitalized on Vanco for 4 days and Zyvox for 14 days. MO x 2 did not recommend chemo but being HER2++ I pushed for it. Both MO stated that there is not enough research to support chemo on HER2++ tumors as small as this, only if they are larger than 0.5mm. DH was not too happy that I wanted the chemo, but I want to know I did all I could to prevent a recurance or mets. I have been unable to explain the HER2++ thing well except to say that the Herceptin is like a vaccine. He is supportive but afraid for me. I am also afraid, but confident that I made the right decision for me. Was to have port on Nov 15 but got the flu. Chemo to start on the 18th. Not sure if chemo with proceed due to illness.

I am to have what they are calling chemo light. 4 rounds of TC and a year of Herceptin. I have not been able to return to work and really miss it. MO told me that since I work on a floor with a great number of patients with infectious processes, he isn't sure he wants me working there. The chemo nurse told me I could just wear a mask, but I am claustrophobic. I want to be safe while having the chemo.

I now have the flu. I don't want to go to Chemo on Monday and expose the other patients to the flu and I also do not want to make my flu symptoms worse. Chemo nurse I spoke with on Friday said they would just use a peripheral IV and there really isn't and issue with me and the flu. I question that, but will call them on Monday morning to confirm.

I am glad to have found this board and to have been able to gleen so much information from all of the people who have gone before me. Thank you so much for sharing your journeys.

Gayle

For those who started chemo with wounds, open or recently closed, did the steroids or chemo effect them? My MO says it can have a negative effect and my skin is still super fragile... and I start steroids tomorrow. If she doesn't think it's sturdy enough on Tuesday then I won't be able to start chemo.

Tonilee2 - I remember that you asked me what other helpful tips I could give you.  So here are a few more.....

I used a blank month to month calendar that I printed off the internet to keep track of when my chemo rounds were and how I felt  and side effects I experienced every day while I was in chemoland.  I used was a daily food diary form which I created which listed out everything I ate and drank and at what time of day I ate.   In addition to that I created a daily medication form that helped me keep track of what pre chemo meds /post chemo meds/ others meds/ OTC drugs I took and help me make sure that I took the drugs on schedule.  I also labelled the tops of my medication prescription bottles with some round stickie labels of different colors so I would not get my meds mixed up.  Doing these things helped me keep track of me and gave me a sense of control.  It also helped me to remember to tell my onco what side effects I had and would be a means to help my family tell the doctors what was happening to me if I was unable to.

I also had a rolling back pack that I took with me to the Infusion Center.  It put things in there that I thought I might need while getting my infusion and for the ride home.  I had snacks, extra clothes/socks, candy, chapstick/lip balm, hand lotion, kleenex, Tylenol/Advil, cough drops, etc.... just things that I knew would make me feel comfortable and there if I needed/wanted them.  I also brought my own thermal mug so I could drink icy cold water throughout my infusion.  I did not take a laptop computer or an Ipad or books to read during my chemo since I didn't think I could focus enough to read.  I usually watched mindless tv during my infusions or napped.  I was given Ativan in my pre-chemo IV which kept me relaxed and calm.

As you will find out, your skin and lips will dry out from having chemo.  You may want to use some lotion or a cream to keep your skin from feeling so dry especially your feet and hands.  I used to lather up my feet and put socks on and also do the same with my hands and put cotton gloves from Walgreens on.  Your lips will also get dry so you may want to use some heavy duty lip balm like Aquafor/vaseline.

Keep us posted on the Herceptin B-47 clinical trial and let us know if you get randomized to receive the Herceptin.  My bc was HER2 negative in the Herceptin world and was HER2 +1. 

Again... if you have any questions, please post.

Wishing each of you strong gals a wonderful week with minimal side effects.  If it is your first round of chemo this coming week, we are here for you.  You can do this and at the end of the day when you are coming home from your infusion, you need to say out loud "I AM DOING THIS!!!"

Good luck smrlvr - I start my chemo tomorrow as well........will be thinking of you.

Audra- when I did chemo the first time (AC) it was definitely cumulative...... My onc said this one (TC) was cumulative as well, but generally more tolerable than AC which I managed REALLY well so I am quite hopeful.

thank you to everyone reporting back to us. I start a week from tomorrow and reading here makes it a little easier.

it has been 48 hours since TC chemo #1. I also have numbness in tongue as audra67 said. Have redness on chest but no itching, eyes and mouth are dry as well as lips. I am eating small meals and only have nausea at night and the phenergan helps. I also feel like a space cadet! I got my neulasta shot this morning and have been on Claritin for years anyways, have not had any bone pain yet keeping my fingers crossed. I have had some shortness of breath with increased activity but not to bad! Hope everyone else is hanging in there!