September 2013 Chemo Group

JellyK I'm sorry you are feeling bad already. I didn't really have any SEs after my first AC but the second one brought on a constant queasiness and a good amount of fatigue. Then the third one really knocked me on my butt. In the April group I was on at the time, it was funny how many ladies said the same about the third one, but everyone is different. In your comparison to pregnancy, one of my employees found out she was pregnant shortly after my dx. It was amazing the similarity of our symptoms. We were tired together, had cravings and nausea together. Even sore boobs together. She also lost some of her hair. It was a truly bizarre sisterhood. Of course now instead of me having my recon at the time she is due, I will be in the middle of more treatments.



Millsy, you should look into the look good feel better class if your center offers one. In addition to makeup tips and a goody bag, mine covered different scarf tying options. Although I was most comfortable in wigs, the most valuable head covering tip I learned was this: cut the sleeves out of a soft t shirt (size lg or xl). It makes a perfect little open hat that is so comfy. Anytime I wore a scarf, I had one underneath. It adds some bulk and height and also gives the scarf something to grip. A lot of the ladies wear them under ball caps. It was also the most comfortable thing I found to wear around the house in the Texas heat.



That's my two cents for tonight. Had a rough day because I'm not healing well from bmx. Going to try for some sleep. Good wishes to all.

Good morning ladies. Lovewins, my silly name is a combination of my little project company name, Delirium Designs, that I named when I was about 19 years old and on the darker side. And Pie is my bf and my pet name for each other. That one derived from me calling him Pumpkin because he would never answer the phone after 8pm when we first met because he went to bed so early. I declared that he turned into a pumpkin at 8pm instead of midnight. Then I somehow started calling him pumpkin pie and one day just answered the phone and said, hi pie! And that stuck. And of course with a mans lack of creativity, he just stole my pet names and called me the same thing. So while most people are honeys, sweeties, babies, and babes... We are pumpkins and pies. Lol. It couldn't have been just a simple answer, right? Happy Labor Day!

Hello all,

I too am struggling with the choices - wig, hats with hair, scarves....ugh! I think for me wigs are out for all the same reasons you mentioned. Then I started looking at the other choices......two hours later still no closer to deciding. I dont want to buy something and then decide that is it not right especially since some items can be pricey and I dont know about you but the medical bills started piling in before I had even had surgery. Doesn't it feel like everytime you blink there is something else you need to buy or pay for? Well I finally decided to start slow and looked at only the sale and clearance section on tlcdirect.org. I ordered a couple hats and a hairpiece called a halo - partial wig that is open on top of your head - it gives the appearance of hair when worn with a hat or headwrap or scarf. It was less than half the price of a full wig and I am hoping it may look more natural If not then on to something else.

Thanks for the info on checklist - I will check it out too.

Happy Holiday......T 

DeliriumPie I'm so sorry you're having to go through this again, uch.  Take it easy recovering from the surgery, and take the pain meds if you need them - I kept trying to come off of them early and suffering for no reason.  Until I started chemo I still took an Aleve twice a day just to keep the edge off.  Are you doing recon at a later time?  I have expanders in, but won't know if the implants will work until after radiation.

I don't know if this first treatment will turn out to be the easiest or the hardest, I just know it's all about mental endurance and I'm on a steep learning curve, lol.  I went up to the campsite my friends and I always stay at for Labor Day this weekend - I wasn't able to actually camp, but just getting up there and visiting for the day made me feel more human than I've felt in a week.  Had to learn about accumulative sun time though - I would step out into the sun for a minute or two at a time just to track where my kids were, and by the end of the day I had a crazy bronze - which is not normal for me even if I'd been lying at the pool all day.  So ladies, be careful in the sun from the very first day, they aren't kidding about the sun sensitivity!

My sister ordered a couple of light-knit beanies for me yesterday, just so they're available once it's time.  I so thought I'd cut my hair into a pixie right away and just embrace it all, but that hasn't been the case.  My hair is already kinda straw-like and hangs heavier than it did before treatment, and my scalp hurts, but I can't bring myself to do anything but put my fingers in my ears and scream LALALALALA lol.  I guess I have to embrace every feeling as it comes, and accept all of my weird responses to things :-)

Anyone watch Orange Is The New Black?  Just watched the first episode today, and it's strangely poignant - everything she goes through is parallel with going to my first treatment.  Chemo = Prison, interesting analogy...

About the hair thing.... Everyone was pressuring me to cut it. It was long and thick and my hair has always been my thing. During my first treatment, I met a lady on her last treatment. She took off her Cap and showed me her hair and said she only lost about 50%. So I remained adamant that I just wanted to wait and see what happened before I did anything drastic. My hair ended up hanging in for about 10 days longer than they said it would. It started with just normal shedding. Then if I pulled on it some more would come out. Then it started catching in my clothes and falling out. I was well overdue for a cut (i has to always get it thinnes to have a style) and the week they told me it would be gone, I was having great hair days because it had thinned to almost my normal style. Then it starting coming out even more from catching on my clothes. So one sleepless night I got up at 3 am and gave myself a stacked bob, with a makeup mirror in one hand so I could see the back and dollar store scissors in the other. I was actually pretty impressed with how it turned out. That only lasted two days but I just couldn't stand it collecting on my shoulders anymore. After that when I started getting bald patches, my bf used his clippers and cut it to about 1-2 inches. I only cried for a split second then pulled it together. He cried more than I did. I never had hair on my pillow but the shower was a mess for the next few days. I ended up losing probably 90% and found out how much hair I really had. The hair I had left actually grew during AC and I looked like a crazy bird with it sticking straight up. I refused to buzz it though because I thought it would be a head start for regrowth. Taxol treatments wiped out more than Half of what I had left and it stopped growing. Then about a week post treatment all the rest strarted falling out here and there. I am just under 2 months pfc and have a decent covering of fuzzy stuff about 1/4 of an inch long with just a few of the longer prechemo hairs in there. Of course that will be leaving me soon and I'll be starting over. The point of all that rambling was to say: dont let anyone pressure you into doing something your not comfortable with, even other survivors. Everyone is different and we are all in different emotional places. When it is time, you will know its time. I didn't feel as traumatized because I had found acceptance by the time I knew it was time to take control. So don't feel the need to rush. And if one more person says you shouldn't be upset because it will grow back, you could a) punch them in the face or b) schedule an appointment for them to get a buzz cut. Lol

So glad you started a September Group Baby Ruth.  I start first round of chemo on September 6th and get my port installed on September 4th.  Thought I was stage I until lumpectomy and sentinel node biopsy and unfortunately, bumped up to stage IIIa. So now chemo first, then bi-lateral masectomy followed by radiation.  At this point, I just want to get the ball rolling.  Trying to figure out now what to expect during and after first chemo treatment. 

Hi ladies!  I don't know how well I'll do at keeping up with two groups, but I just had my first chemo on Aug 29th, so I'm kinda more in the September group than the August.  They are a great group of ladies, but I thought I'd pop over here, too.

I wanted to chime in on the hair issue.  I am using cold caps to try to save my hair (despite being on AC which is NOT a good regimen to be on with them, but I'm optimistic!).  My med onc's assistant actually told me after I asked her a bunch of questions about my infusion, "Wouldn't it just be easier to lose your hair?"  Ummm... I told her SHE can lose HER hair and I'll keep MINE!  LOL   Seriously.... would you ever say something like that to a cancer patient?  Yes it would be "easier" and less expensive and would make my chemo days much easier... but if I can keep some of my hair and not have to start with a clean slate (ha ha), I'm all for it!  I did order a wig similar to my style and several cute caps from headcovers.com so I'm prepared if the caps don't work for me.  Whoever was talking about how expensive all of this gets, you're not kidding!  My prescription meds are actually cheaper than all of the other "stuff" I've bought to counteract my SEs.  LOL

Anyway, I am on day 5 of my first AC infusion and doing pretty good.  The first night and the next day were the worst... no honeymoon period for me.  I was sick about three hours after I got home!  That was Thursday, but by Saturday I was just mostly tired, and today I walked 2 miles and went to a picnic!  So here's hoping to better days each day!

Welcome mama, lighthouse, alfranco and tdallano! Looks like we're kicking September off with a bang. Mamastewart: don't freak out (even though I did). Nail damage or loss is a possible side effect. From what I've heard it is more common with the taxanes. I was on taxol and it was definitely harder on both my hair and nails than AC was. I've heard some people get dark spots, ridges, or lifting. And some total loss but that they do return to normal. I just wanted to do anything I could to prevent possible problems. Good luck with the cold caps lighthouse. I wish the chemo centers and docs would be more forthcoming with info, but I know out "vanity" is secondary to them. But like you said, it's not their hair!

Exactly mama. One thing I picked up on is that no one wants to make you panic about anything. So they give you really vague answers that just make you worry even more lol. My favorite limbo moments were due to them telling me to call if I had any side effects. We will get inti you if you never call. I thought really? I know what most of them will be because either they told me or I read it here. Aurely you sot want me calling twenty times a day. Since I was there so often, I wouldn't call, but would wait until my next visit to express any concerns that I didn't think we're "normal" then all they would say is "yea, that can be caused by chemo". It was truly comical to try to decipher if any issue was from something serious or just a side effect. When I got blood clots they told me to go straight to the er if I had chest pain, shortness of breath, racing pulse, etc. but of course all those things were also side effects of my cocktail. So most days I never knew if I was about to keel over or if I was just normal for chemo. Welcome to a whole new world! If it could ease any of your anxiety, I consider the chemo a walk on the park compared to the last three weeks since my bmx. With chemo, if I could rest a while, I could function again. Being constantly physically impaired from the surgery is really wearing me down. This insomnia isn't really helping either. Lol. Good night ladies.

OMG Delirium totally!  My onco case manager was like, "Call me any time, I'm here, don't suffer through any SE's..." but the phone number on her card just leads you to an advise nurse who is like, "yeah, sounds like chemo, you should rest/drink water/go for a walk", lol.

And I hear you on the mx pain, it's a lot.  The thing that helped me was that I could tell I was doing at least a little better each week.  Sometimes it took someone saying, "Holy crap you couldn't do that a week ago!" to make me realize how much improvement there had been.  Hang in there, it WILL get better.  I wish I could say the same for chemo :-(

BMX= double mastectomy, right? Sorry, still learning the terms. I have that to look forward to also. I should be due around the middle of December, but I think I am going to ask to wait until after Christmas. Luckily my sister is going to come down from out of state to help me then. She has lupus and isn't in the best of health, and I am not sure how long she will be able to stay, but it is better than nothing, right? Did I mention that I have a 7 year old that is 63 pounds, has cerebral palsy, and has to be lifted everywhere? Fun times! 

Delerium: I imagine that I will be a fine mess while dealing with chemo as I have an anxiety disorder and think I am keeling over half the time as it is. 

JellyK: My kiddos are 3,4, and 7. Luckily the little two are pretty self-sufficent due to their older brother needing my attention a lot. The do help out around the house some as well. I have nursing for my oldest, too, and that is a lifesaver! I have most of his awake hours covered during school days so he is taken care of. I am just worried that someone will call SRS about my kids if I am sleeping on the couch during the day as they are watching TV or something. Maybe I am paranoid, but I wouldnt' be able to handle losing my kids; they are my fight! 

Well off to the store (again) to get the things I forgot, post-chemo onc appointment and then class! I emailed all my classmates and told them about my cancer today so it should be interesting.

Oh, and I am going to try to pull of a birthday party for my son on Saturday. Do you think I can do it (I start chemo tomorrow)? My onc had told me that days 7-14 were the worst, but I keep hearing 4-8 on here. I was going to postpone it for another week but that would be at day 11, and I wasnt' sure what days your immune system was the most repressed. I dont' really want to go to the park with a ton of potentially sick kids around on a "bubble day" as I have already begun to refer to them. 

Good morning all. Jellyk: I got several opinions on recon, because I really wanted implants and really wanted them now. The first problem was the RO who scared the heck out of me saying I didn't have time to have tissue expanders. No time for fills or extended recovery. To hear him talk, you'd have thought he wanted to come in my hospital room the day after surgery and start the rads. Of course now that I'm delayed due to healing issues, fear is creeping in. Everyone else just has the same conclusions that rads would complicate things too much and never even suggested that we could try to give it a go. I only know that from seeing so many others here who have gone ahead. While I am counting each and every day until I can do recon, the problems I am having currently really scare me to think about what it will be like then when it is even more extensive.

Kbee, why a great group of guys you work with. That is awesome. You have to find humor and have fun with it whenever you can in this journey.

Mamastewart, gosh what a lot you are already handling. I found it was hard to plan things in advance because I never knew when I would rather just sit on the couch. My SE cycle did become fairly predictable but there were a couple of odd days out that I would rather just not deal with anyone. Of course being a mom, you are probably already used to getting up and putting a smile on, even when you don't feel like it. I did manage to attend 2 parties and host 2 parties during chemo. Having someone to help you is so important though. I hosted Mother's Day at my house for the first time ever and I wanted it to be so perfect. I probably overdid it the day before between shopping and cleaning the patio furniture, but it felt good to be out and doing something. I left only a few simple preparations for Sunday morning so that I could sleep in. I got up and started with decorations outside and has to come in and rest. Then I had a total emotional breakdown because I couldn't put a stupid table cloth on without being worn out. Bf assured me it was all ok and that he could put on the tablecloth and that my family would just be so happy that I was here and not care if things weren't perfect, then he sent me to go nap. That was probably my lowest moment during chemo and it was pretty early on. But you know, he was right. After that I just took things at the pace that was comfortable and everyone really wants to help, so I let them (well just a little). It was about accepting that I am different now, no matter how much I want things to be the way they were before, they can't be, so I have to embrace it and move on. I think I can point to any of the times I break down and say they were all caused by thoughts of the way things are vs the way they used to be. I just have to remember that I am so thankful to be around and in this fight.

Hi Ladies.  Like you BabyRuth, I have had a recurrence.  I am going in for surgery in the morning for my port and will start chemo on Monday the 9^th.  My drug of choice this go around will be…..drum roll please…….. Gemzar and Carboplatin.  I was recommended by a MO in Atlanta to try for 6 cycles (each cycle consisting of 3 weeks) but if my body struggles, we’ll knock it down to 4.  The plan is: Monday week #1 – chemo.  I may come in additional days for Neupogen shots.  Monday week #2 – chemo with possible shots throughout the week.  Week #3 – OFF.  I had dd ACT the first time and the AC kicked my behind BUT I made it through.  I’m hoping this one will be a little easier.  Looking to the positive – if I lose my hair again:  I will not have to shave my legs/under arms, resulting in the savings from not buying razors or shaving cream. I will have savings from not buying as much shampoo and conditioner.  I will be able to get ready much quicker in the morning without having to shave and fix my hair.  As hard as it was for me to lose my hair last time, these are the bonuses I found from living without my hair.

DeliriumPie  - The information on icing is very interesting.  I never lost my nails but it came close.  I was sure to keep them very short and I wore only flip flops to not have pressure on the toenails.  I looked a little funny wearing flip flops in the winter but I didn’t care.  I had/have a fear of losing the nails too.  I’m not sure why the idea bothers me so bad but it does.

Lovewins – During my last chemo, I used scarves a lot.  The length of them resembled the feeling of my hair on my shoulders.  This made it a little easier.  I had wigs but I felt angry when I wore them.  It was like I was hiding something, which I was (that was just my experience), so I got the most use out of my scarves.  One thing I didn’t think of until I experienced it is covering your head to sleep.  My head would get very chilly while I slept so I found a soft, knit hat that I slept in.  I did have some fun with hats during the day.  Try to have fun with the hats and scarves! 

Posnegher2 – Have you visited the American Cancer Society in your area?  They donate head coverings to cancer patients at no cost.  That may be a good way for you to try some things before you make any purchases.  I received 2 wigs from them, even though I didn’t really wear them but they are made of donated human hair and are beautiful. 

KBee – My MO was adamant that I get the flu shot before starting treatment and that my caregivers also get the flu shot.  The last thing you need is for the flu to attack you when your immune system is already compromised from chemo.  I strongly suggest you call your MO to get his thoughts.

Much love to you all.