Starting Chemo January 2015

dimccleland,

sorry to hear that you liver is being an issue. I hope the doctors get things worked out soon for you. Just remember, we are all here for you to vent to. I chose to have a bi-lateral mastectomy with reconstruction.

Dstar, those percentages are significant. I choose chemo also. Keep on keeping on.

Pmr53-Patty, I am glad you spoke up about that nurse. I pray you don't have any illnesses from her negligence. By her not being sterile she can potentially cause you to get sick because your immune system will be down. It is very important that the people providing your care actually care about their job.

As for me, I am still fighting with the financial officer about the money. They still are demanding $900.00 from me tomorrow when I come in for my first treatment. And that is the lowest I have been able to talk her down. Then she has the nerve to ask me if I am going to have the $900.00 tomorrow. I said do I really have a choice? I already delayed my treatment one week because I didn't have the $1800.00 plus the $763.00 for the Neulasta shot. We are waiting for approval for for financial assistance through patient advocate foundation. But she is not willing to wait for approval. This is what is irritating me. She said she would refund my $900.00 once the approval comes in and they run all the bills through the insurance company. That wwill be sometime in April before the insurance company finishes all their processing. I told her I am taking the $900.00 from my rent fund so she needs to reimburse me as soon an the approval comes in so I will have money to pay my February rent.

Then I went off on her about their tactics and how much stress she is putting on me and how unethical the company is being by waiting till the day before someone's treatment to lay that financial bombshell on someone. I told her my oncologist is going to get an ear full from me about all this.

Sorry. Still a little sore at the situation. Keep on keeping on right ladies?

Hi LynnM, I had the AC followed by Taxol. I am triple negative, and just had a mastectomy 12/15 2014. I am now seeing the RO to start rads, then back to chemo. What a ride it's been. While everyone is different and reacts differently, I had a rather rough journey on that chemo cocktail. I cannot have Adriamycin ever again because I was one of the lucky 10% to get the uncommon side effect of heart damage. Now I have heart meds for life and 2 cardiologist. I did have a great response with 60% shrinkage, but then I started the Taxol and it regrew my tumor by over 40%. Again that is uncommon with Taxol, but it happened to me. I see that a lot of the ladies here have had the same cocktail with good results. So hard to say what to do. I cannot have Taxol again, or any taxane chemo. So being triple negative, my choices are limited. But you have done very well, so you can't really look at one case. I'm doing very well now, but now rads. Another unknown, and I hate surprises! And after rads, I will have to choose another cocktail, and my hair is 1/2" long. It started to grow back after the second Taxol.

I think you are right, we need to pray, grab a lifeboat, and ride out the storm. And we will find a beach and blue skies at the end of this storm.

Here is that Crock Pot Mac n Cheese recipe. It turned out good. Don't overcook past 2.5 hours on low. I used 2 eggs not three. Just what tasted okay for a queasy chemo kinda day.

Patty

LynnM

Welcome and hugs. I am triple positive so I don't about those chemo regimens you mentioned. It sounds like they are in a hurry to get an answer. Is there anyway you can get a second opinion? I know the shock and distress of this catastrophic news you speak off. I had similar situation. 2006 left breast. 2014 right Breast. Completely different kinds of cancer. Chemo new for this one. Try to make the best informed decision you can and then research those chemos. It's scary but will save our live.. It's just a bump in the road.

Patty

Dimccleland - Wishing you the best with your CT scan results. There seems to be a higher incidence of enlarged livers for people with AS but I hope your rheumatologist can get this under control for you as quickly as possible.

Cheryl, I think I am going to get my hair shaved this week as well. It is day 16 post chemo# 1 and I have a very tingly head as well as a dull headache. I can see the hair starting to go as I run my fingers through it also. It is driving me a little crazy tonight!

LynnM, welcome as well. I don't have a specific comment about the right chemo regime but I do think that your oncologist should give you the information you need to make the best informed decision and one that you believe in without pressuring you to make a quick decision. Glad you found our thread and hope we can support each other as we go through this. Understanding and knowledge gives us power too.

Mommacat4 - Good luck with your chemo tomorrow and I am glad you got the opportunity to tell that financial officer how you felt. It is very frustrating having this struggle on top on BC but it is good to voice your feelings too. I think it helps give us a sense of some control, right?

I didn't get much exercise done today but was at the hospital to participate in a study here called Amber Study that is looking at how behaviours (lifestyle, physical activity) relate to breast cancer recovery and survival.. I had to do a bunch of leg and arm presses. I felt good doing them but to be honest it completely wiped me out afterwards. LOL My legs felt like jello for the rest of the day and I needed a nap late this afternoon. Tomorrow I'm back at the hospital for my port. Hydranne, I think I remember you are getting yours tomorrow too. Wishing us both a very easy time of it!

Fyre999 - how are doing after your chemo today?

Wishing us all minimum SE's and good days!

Thanks Dana - my second treatment is scheduled for Jan 19th. I go for my blood work on Friday but I'm feeling pretty good so I think there should be no issues for chemo on Monday.

Hello everyone...I am thinking I will be starting chemo this month. I guess I will find out tomorrow when I meet my oncologist for the first time. I am scheduled to have my port and SNB done this Friday. Everything is moving so fast...it's hard to think that just two weeks ago I thought I was perfectly healthy! I am sooooo grateful to have found this site. I know it helped when I went to discuss my pathology report with the BS to have some idea what she was talking about. And I can't even begin to say how much it has helped emotionally! I have yet to tell anyone...except immediate family, I just can't bring myself to say this out loud! --Lorie

Hi Loriekg and Kjybaby- You are not alone. Welcome.

Hi Kjybaby, you are not alone! I have very similar diagnosis to you (tumor just a little bit smaller and PR+). I know how hard it is being diagnosed at a young age (I am 30). My advice is to try to stay as positive as possible, it will go along way in your recovery .

I start chemo tomorrow (TCx4 and tamoxifen for 10 years). I wish you the best and all the other ladies on this thread.

Hi everyone! Just wanted to tell you all how much reading your posts has helped me. I have been feeling down today as I have had a return of pain post mastectomy and this got me into a funk. I am pretty sure the pain is due to nerves waking back up. I have intermittent stabbing pains down my inner upper arm from the axillary dissection incision, phantom pain where the breast used to be and some incisional pain. Just taking ibuprofen and Tylenol. Don't like narcs.

This pain has gotten me into a funk about fear of chemo. I don't need to describe this- you all understand what I mean. I started my period and am mourning that this might be my last one (imagine that!) (I have oopherectomy scheduled post chemo and I hear chemo puts you in a "chemical menopause.") I got some bills from the hospital from surgery, etc. and I need to call to get on a payment plan...finally, I am scared about needing to lean on people in my life more as I move through this process. I am an RN and I am used to caring for others not the other way around.

Anyway, your posts inspire me and motivate me to break out of this negativity today. Up until this point I really have been very positive, hopeful and just grateful for my life, my family, my friends, my job, etc. but I got a little derailed today, I guess.

Tennisfan, I started exercising again because of you. Walked for an hour Monday and Tuesday I confess I haven't yet today due to pain, but I have a stationary bike so will ride for at least 20 min before this day is over.

Those of you who are remaining at work make me feel this may be possible for me as well. My coworkers are my extended family so being back at work will be therapeutic for me. Like several of you, I will do 4 AC treatments biweekly followed by 12 taxol treatments over 12 weeks. Then oopherectomy and 6 full time weeks of radiation

Do youthink it is unrealistic for me to think I can work? I should mention I only work two 12 hour night shifts a week as a charge nurse on a psychiatric unit. My job is pretty mellow with a lot of administrative/seated work.

Thank you so much for listening. It really helps to have you all in my life now.

With love,

Kristin

Hi Kjybaby, You are not alone here! And everyone here, no matter what age, we all have a lot of living left to do. It's okay to be terrified, I was but knowledge is power, and power is strength to get all of us through this. Here you can vent and rant, but I found a wealth of information. I learned so much from real life warriors, in real time. It's great to know what is coming at you, but we can tell you what really worked for us. I had the same chemo and I would be happy to share my list of things that helped me complete all 8 rounds of my chemo. The AC worked fantastic for me, and the tumor shrunk 60%!! The side effects are very manageable, as long as you manage them. No one here wants to go to chemo, or deal with this, but we do and rise above the storm to face another day.

Do you have a support system that would be available to help you? I know it's overwhelming, and your mind goes to that dark place. Been there and done that, I try not to go there! Deal with what you know as a fact, and beware of Doctor Google, too much bad info there. Please ask questions, we are here for you!

You CAN do this, and we are going to help you!

Bonsoir! Tonight I will keep it short because I am scared to be coming down with a cold (my aunt and my mom got a really nasty one, they came to visit before they got it and now in turn my throat is feeling itchy :0((((. I am so ready for Friday so I don't want to postpone til next week! So I will hop in bed early

Only one thing to say: thecolourpurple aka Kristin - you made my day!

Have a restful night, all of you and an evenly nicer day tomorrow, sans SEs if at all possible!

Marjorie aka Tennisfan

Wow it feels like forever since I was last here since I get to spend so little time on my computer. Updating through my phone is for the birds! My honey and I were trying to decide, yesterday, whether you all count your chemo day as "day 1" or "day 0" as far as logging the side effects and such. I started in the morning so I was counting that as day one but I was just curious. So far the worse symptoms I have experienced was with Emend. Holy moly! First I felt like my breathing tubes constricted that the width of a coffee straw for about 3 minutes. I was just sitting there trying not to panic. The nurse was only one patient over and either didn't notice or wasn't alarmed so I just hung tight and it went away on it's own. Then right after it finished I started cramping like I was on my period but it was like 10 times worse than any menstrual cramps I've ever felt in my life and went into my thigh bones and muscles. That was horrible! It lasted about 20 minutes. The last thing before the chemo was Ativan but maybe that was extra. I'm not sure but suddenly I was happy and stoned and fell right to sleep. Yay for that! I guess I freaked out my honey because I was babbling a bunch of nonsense to another patient but I guess he was the same way so it didn't bother either of us. LOL! As long as the "stupids" don't last I'm good with it. I have had the red cheeks too and can feel heat emanating from my face and core but my hands and feet will be cold, which is odd. The nausea and headaches have barely been there at all. I've been scared of the side effects of dexamethasone but agreed to try them. So far no ravenous appetite but I have been a tad more prickly. I got mad because the kitchen was dirty and we were both just laying around doing nothing so even though my honey agreed to do it, it wasn't getting done so I just got up and a did it myself. Well I only got irritated when I asked if the dishes were clean or dirty and the response was "I can't hear you. I'm trying to watch this." A tiny mushroom cloud may have erupted over my head. LOL! We did have a nice chat after that. I think there may have been some denial in there after hearing "I'm just trying to relax before the storm really hits"... Um, the storm has arrived. It's time to step up. I hope this wasn't too awfully off topic for here. Right now I'm in "pay attention to which 3 day stretch is the best to schedule chemo around so I can continue working" mode. I'm also up in the middle of the night because my onc wants me to mimic what I'd normally do during a work schedule to see how I do. It's so hard fipping back and forth between days and nights. Argh.

One final thing... A friend of mine made this for me and I love it so much I wanted to share.

Frye, thank you for sharing your infusion experience. This is the place to tell the good and the bad. Sorry you had a rough start, but you are such a warrior! The photo of you is awesome. I hope it is poster size and you hang it proudly.

You and DH are like the Cramdens. Loved your interactions...soooo real.