2005 ROCK-TOBER CHEMO GIRLS
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Add me to the list as well, ladies. I got diagnosed on August 19th, had my bilateral mastectomy on 9/15 with DIEP reconstruction. 7 nodes positive out of 24 removed. So, chemo it is. Had my scans...all good (except a spot on my liver that is from "fatty infilitration" not breast cancer...still have to have a liver MRI just to be 100%) and my MUGA was perfect. I'm meeting with my oncologist on Tuesday, October 4th and off we go to the land of chemotherapy.
I don't know when it will start, but it will be in October. I'm nervous, scared, excited (weird, huh? i'm just ready to kick this thing in the ass and get it over with!), and everything in between. For some reason, I'm the most worried about how chemo will taste. Don't know why that is my biggest concern. It's SO nice to have other women to talk to and be in this together. I'm sure we will all do fine!!!!
Love,
Amy -
Hello Ladies,
It looks like I'm going to be joining this club. I was originally diagnosed with left breast, high grade DCIS with comedo necrosis on August 19, pathology from a core biopsy. I opted for a left mastecomy with immediate lat flap reconstruction plus anxiliary node removal; and a right breast lift and reduction for matching purposes. I had that done on September 12. Unfortunately, the pathology from the mastectomy showed that I actually had a 3cm area of "poorly differentiated" Invasive Ductal Carcinoma, plus extensive DCIS and some Lymphovascular Invasion. My lymph nodes were negative, I am positive for ER/PR and negative for HER-2.
When my surgeon told me that IDC had also been found, I was still in the hospital and it really didn't sink in what that meant in terms of further treatment. When I finally got home from the hospital and got a copy of the pathology report, I started researching and figured I would probably have to have Chemo and maybe radiation as well. I was trying to prepare myself.
Yesterday, I saw the oncologist for the first time. During the first part of the appointment, before I even saw the oncologist, an assistant was going through the insurance paperwork with me and taking my copayment. Of all times, that's when my personal flood of tears started. Luckily, my brother had come with me to this appointment because I ended up crying through most of the 2-1/2 hour appointment even though I already knew I would be facing treatment. My oncologist (a woman) was wonderful--very understanding and explained everything clearly and told me to call any time.
I am at Stage 2A and radiation is not recommeneded (yeah!), however, I will have Chemo first, then probably Tamoxifen (or some other hormone suppressor). In addition, I may be included in a study that adds Xeloda to the Chemo mix. The study is to determine if adding Xeloda (that is usually used in women with later stage breast cancer) to the treatment of early stage breast cancer patients improves their outcome. My oncologist says that the results so far are very promising. I'll find out in a few days if I will be in that study (I have agreed to be in the study, but it is randomized, so a computer will decide if I will actually get the treatment or not).
My Chemo is to start on October 6 (three days before my 50th birthday), and I will lose my hair which I'm very sad about--I know it will grow back, but I'm just bummed. I've had long hair for many years, so will start the haircuts soon to get myself used to the bald look.
Between now and October 7, I have a ton of doctor appointments: Today was Plastic Surgeon follow-up appointment (no more drain!), tomorrow is bone scan, Thursday is Pre-op for getting a port inserted in my chest for Chemo and blood draws, Friday I go for a MUGA Scan. Next Monday, October 3, I see the Plastic Surgeon again and later that day get blood work done, October 4 I get the Port put in, October 5 is Chemo class, and October 6 is when I start Chemo.
Sorry for the long post, but it seems therapeutic to share all the details with others going thru the same process.
Cheers,
Jane -
Finally joining the group - thought I'd be in the Sept group, but had a delay getting my tumor slides from my original doctor and then had some redness in the breast affected which antibiotics didn't help. Feared IBC - had to go through the whole "hurry up and wait" trauma again while waiting for the results of a skin biopsy, It came back negative - my surgeon & oncologist say its congestion from the blood not circulating properly after the lumpectomy and should resolve itself over time. However, they are monitoring closely and starting me on chemo Friday. I'll get the port put in Friday and have my first A/C treatment then. Now that I'm finally starting - I'm nervous. I spent weeks being frustrated and depressed because I couldn't start "fighting back" by starting chemo, and now that it's here I find I'm scared. But I'll get through it - just need to get my "game face" on!
God Bless!!
Lynn -
Getting my port put in on Friday, and my first AC treatment is on Tues, October 4th. I'll be bald for the holidays!
My surgeon puts the port in the inner left arm, just above the elbow. Does anyone else have the port in their arm or are all in the chest? She says that her BC patients have told her it is more comfortable and much less noticeable.
I'm starting to get nervous about the whole chemo thing. Since my diagnosis, I've only cried twice: once in the surgeon's office to discuss the path findings, and once on the day I donated my hair. It's weird . . . I'm the "crier" in the family and I don't think my situation has really hit me yet. Hard to explain, but it's like it's not real. Maybe chemo and it's side effects will make it more real? -
Jane--I too will be participating in the same study with Xeloda will know next week if i actually get the new drug or not. I also have IDC stage 2 1 node positive for metastatic breast cancer. I went to have port puut in yesterday but after 3 tries the doctor quit could not get it in I have to go back again today to try again-I am so sore today just hope it goes better-- I have really bad veins-- New doctor today hope he can do it
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Calico,
I desperately need to know how you're doing. When you have rested a bit, please write. I am pulling for you! -
Dear Sherryhaire,
How did they access you intramammary nodes? Some of my mammary nodes "showed up" on my MRI but the doctor's did not consider this to be a problem. They told me a mammary node dissection is very invasive. Was yours?
I has a mast. on my right side (4 cm IDC tumor removed) on 9/7 with 1 out of 24 nodes being positive (ER/PR+, HER-). How did they know to check you mammary nodes? I will meet with my medical team on 10/6 to discuss my AC chemo treatment (possibly no radiation) but I would love to get more info from you on teh mammary node issue if you don't mind. Thanks! Katie -
Hi all,
I am doing better, had first chemo yesterday, was well til aobut 1pm and the got sick, tock compazin and it didn't help, addet Ativan, didn't do much either, every sip of water went again.
Hope everbody can skip this bad day
God Bless -
sherry,
what does Xeloda do, I though about reading about it and mentioned it to the chemo nurse. She had no idea...
I won't see my onc till before next chemo
God Bless -
Hang in there Calico...one treatment down...my mom always likes to say, "It's one thing taken out of the to-do pile". Hope you feel better!
-Amy -
Katie--When I had my mastectomy they found it through the radioastive stuff they injected as well as the blue dye. I was told my lymph system was draining differently.Other than the one intramammary node they only removed two others. Be sure and ASK Oncologist about this, although I do not believe it will; make a difference in treatment decision you still have one positive node. I have found very little info on internet about it. Calico--my understanding of Xeloda is it is supposed to be helpful in preventing re-occurance in early stage breast cancer. It was origionally used for Latter stages of Metastatic breast cancer. The study sounded promising especially since you could quit at any time. Finally got my port in place Yesterday the doctor punctured hole in Lung scary but better today. Oh yeah Calico The following is the name of the study for Xeloda:
USO Study # 01-062
Protocol Title:
A Randomized, Open Label, Multicenter, Phase III Trial com-paring Regimens of Adriamycin plus Cytoxan followed by either Taxotere or Taxotere plus Xeloda as Adjuvant Therapy for Female with High Risk Breast Cancer (NO17629) -
Sherri,
sorry about your lung what else does one need (always another shoe dropping). Stay well!! The port at least makes it easier!! Thanks for the info!!
God Bless -
Calico--How are you doing now a couple days out? Nervous about first treatment as I'm sure you were, I will start next week, They want my lung and port to heal a couple days--I guess this weekend I had better buy hat, Wig, Scarf something!!! What have you done?
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Katie--How are you doing be sure and let us know about your DR visit next week
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Thanks for the info Sherry on the mammary nodes.
I had one mast. (rt. side) on 9/7. I went back to work after 2.5 weeks of rest (the drains were in for a solid 2 weeks). I find myself really tired at work and have to leave with some headaches (don't get headaches at home!).
May I ask anyone else who had mastectomy's how long you recuperated before you went back to work? Did you find that you went to work too soon? Am I pushing myself too much? I want to be strong for chemo starting in a few weeks. Any hints would be helpful. Thanks for you help. I am new to this list and just starting to connect to this great community.
Katie -
Looks like I'm joining the ranks of chemo warriors next week. This has been kind of a whirlwind for me. Was diagnosed Sept. 2, had mastectomy Sept. 21 and am scheduled to start chemo Oct. 6. Ack!
Had a 4.6 cm tumor that had apparently grown to its golf-ball size since my December mammogram. It appears to be medullary, with no node involvement. I'm triple negative on hormone recepters, so I'm to have four cycles of dose-dense AC followed by four cycles of dose-dense Taxol.
I'm the most squeamish person you can imagine re blood draws and IVs so I opted for a port, which went in while I was asleep for mastectomy and expander insertion.
I have a good friend who traveled this road two years ago, and her advice and support have been invaluable. But it's good to have a group of us here to compare notes and hang out together during the actual journey.
--Cindy -
Hi All-
Well, tomorrow is my chemo starting date and I'm pretty jittery on the inside. I will have 4 AC and 4 Taxol dose-dense (every two weeks). The good news is that with dose-dense, I'll finish faster. My last treatment will be January 6th. Rads in Feb/Mar.
I read so many positive postings on this board about people getting through chemo relatively easily and I hope I can be one of them too! I'm filling my perscriptions tonight for the anti-nausea drugs. My doctor says the key is to take them for 2-3 days no matter what. He said, "Don't try to tough it out to see if you need them. Just take them." So, I will.
It's great to know there are sisters out there who share this experience...
Ruth -
I think I belong in this group too. Just had an Aux Lymph Node Dissection this past Tues & had my port inserted at the same time. They say chemo will start in 4 weeks, so I will be trailing behind most of you near the end of the month. I am scared (especially about losing my hair), but I know we can do this!
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Katie--I went to work 1 day shy of 2 weeks after my bi-lateral. So worried about taking time off work Don't have to many days left, The girls at work have been supportive and are picking up the slack but I do not want to push my luck. I am still tired at the end of the day but glad to have finished another. Know my thoughts and prayers are with you all!!!
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Hi Sherryhaire,
Nice to know someone else who's going to be in the Xeloda study. Where are you? I'm in Austin, TX.
I will be getting my port on Tuesday in my chest. Did your doctor try to put it in your chest or your arm? I'm sorry it didn't go in the first time. Hope it goes better on the second try.
Jane -
Oh my Sherry,
You've had a time getting that port in! I hope you're feeling better.
Jane -
Hi Everyone,
I haven't been reading on here for a couple of days. On Wednesday, I got up in the morning and tried to wash up and get dressed and started getting dizzy and nauseated. Luckily I made it to my lounge chair before I actually fainted! My husband was there and started trying to call the doctors--but none of them were open yet. We called the medical exchange here (for when the doctors aren't in), and the nurse on duty said I probably fainted from the pain from my mastectomy/reconstruction. I kept saying, but it doesn't hurt that much . . .
Finally got a hold of the nurse at my surgeon's office and she said it was a side effect of the muscle relaxant I was taking and to try to take less.
It turned out, I had also started my period and got horrific cramps and felt dizzy most of yesterday and part of today. I still went and got my bone scan done and that went okay. I saw the plastic surgeon today, and he drained some fluid build up from my back (from Lat Flap reconstruction) and ordered some blood tests to figure out about the fainting spell. He's thinking that I might be getting anemic. The blood tests he wants are some of the same ones I'm getting pre-Chemo so called the oncologists office and explained the situation and had my blood test appointment moved up to tomorrow. Also go for a MUGA scan tomorrow.
I don't know if it's my period or just general anxiety over all this BC stuff, but I've been so weepy--crying at the drop of a hat. I'm feeling a bit better this evening--my husband took me to all my appointments today, and has done most of the chores and childcare today as well and that's helped. My mood has got to get better!
Jane -
I will be starting chemo on 10/19. I had a meeting with the Onc on 9/28 and they are going to try to get me into a trial - randomized - that is testing Gemzar - a drug that has been used for late stage cancers with mets. The idea is to introduce Gemzar in the last 4 treatments of dose-dense chemo to determine whether it helps prevent recurrence. Again, I won't know until next week what group I am in and whether or not I will get Gemzar. Port goes in next Wednesday then we are ready to start. Scary, isn't it?
Hang in there ladies - we can, we can we can do it! -
Jane
You are not to far from me I live in Pearsall Texas about 50-60 miles south of San Antonio-All my APPTS are in San Antonio. I have 2 nephews that live there and my son just moved from Austin. When will you know about the Xeloda study? Have they told you if you will be taking the drug yet? I won't know until next week. I hope you are feeling better today and for the weekend. I'd love to hear about your family PM me or email me anytime at sheryhaire@hotmail.com Isn't this the most wonderful site I don't know how I would have gotten thru the past few weeks without the support from people who truly understand -
Quote:
Jane
When will you know about the Xeloda study? Have they told you if you will be taking the drug yet? I'd love to hear about your family
Yes, I seem to be feeling better today. I think the oncologist said I would know next week if I'm in the Xeloda study or not. That day is such a blur, it's hard to remember. I go in about 15 minutes to get blood work and then on for the MUGA scan. If it weren't so scary, it would be sort of interesting I think.
I am married and have one daughter, a 7 year old, whom we adopted from China in 1998. I have two younger brothers and two older sisters. My oldest sister came from North Carolina to help us when I was in the hospital and for a week after. Then, my "baby" brother (he's 39 years old now came for a week after that to help out. My mom is coming on Saturday. She's got her own health problems, so it will be mostly for the companionship because I really don't want her to overdo and get sick (which happens to her easily). But, it will be nice for my daughter, Michelle, to have her Grandma around when I'm not up to my usual self.
More later--got to go,
Jane -
I will be starting chemo in approx. 2 weeks. Had a mastectomy and node dissection. Chemo treatment is called Dense Dose, consisting of Adriamycin and Cytoxan and a Neulasta injection (24 hours after treatment - my husband will inject me with the Neulasta at home) every 2 weeks for 8 weeks. Then it will be Taxol and Neulasta every 2 weeks for 8 weeks. I am really nervous, an emotional wreck and terrified of the unknown. The symptoms: nausea, feeling flu-like, achy, hair loss, etc. are extremely upsetting to me. I am going to get counseling and hopefully that will help. Xanax helps too. Everyone experiences different symptoms, so I will just have to wait and see which ones I will be having. I always thought I was a strong person, but this is unbelievably overwhelming. When I think about having the port put in I literally get sick to my stomach because that represents the beginning of everything I am going to experience. Has anyone had this chemo treatment plan or a similiar one? Thanks in advance.
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I will have my "chemo class" with the infusion nurse on the 7th of October. The week after I will have infusion number one of 4 A/C's. When I told the nurse I was only 5 feet tall she asked me if I was fully grown. I was so nervous about her call that I failed to appreciate the humor. I think I will try to meditate, pull away from my body and try to be one with the universe!
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Hi Ladies,
I am from the Chemo June 2005 group... just thought I'd check in here and see how you are all doing.
I had dose dense ACx4 and dose dense Taxolx4 with Neulasta injections 24 hours after treatment. My Last Taxol was 9/14. I started Rads on Wednesday... 3 down, 29 to go! Also had my port taken out on Wednesday. FYI... I LOVED having the port. Having an IV started HURTS and the port made my life so much better. Definately consider getting one if you can.
I know you all must be scared. The waiting is so hard. But once you get started with your treatments and know how your body will react to the drugs, you'll feel a little more in control because you'll know what to expect.
I had a tough week after each AC, but my second week was always pretty good. When the day came for my next treatment, I ALWAYS felt great. Seemed a bummer to start it all over again. But I knew it was worth it to fight this cancer with all I could! I have many more years to live!!!
Taxol was a lot easier on me than AC but the fatigue seemed to be a bit more cummulative. Still nothing that keeps me from doing things.
Oh yeah... my hair started falling out the evening before my 2nd AC. So that would have been Day 13. My husband shaved my head about 3 days later. I wish I would have shaved it sooner as it was horrible to have hair everywhere. It was just plain gross and I think I would have saved myself some grief! Right now, I'm still bald but I have a very faint covering of light colored "peach fuzz" that seems to be growing. It's very exciting! It's only been here for about a week and a half or so. So... point is... it does grow back... just takes time.
Cindy... where in Minnesota are you??? I'm in Farmington.
I just wanted you all to know I'm thining of you and hoping this all goes smoothly. Please don't hesitate to PM me if you want. Also, we have a great thread going and a WONDERFUL coach, NoSurrender. I think we've experienced so much it might be worth your time to read through our posts. There are a lot of them... but they may help you know what to expect.
Hugs to you all! -
Dana,
There's another place (thread) you may want to post. It's called "estrogen negative cancer...". By the way you and I are both ER/PR and HER/neu negative.
How are the radiation treatments going? Is it true that it's a breeze compared to chemo?
Thanks. -
Oh Brenda... yes, Radiation (so far) is very easy. It only lasts about 2 mins... it's like getting an Xray. Hopefully, I won't develop any burns from it... but still, being sick from chemo tops my charts as being the toughest so far. The hot flashes are a very annoying second place!
By the way, I'm originally from Fontana, Ca... near SanBernardino.
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