April 2013 Chemo Group

BeHereNow, I have a lot of support at work. My boss, co-workers, everyone has been amazing. I mean AMAZING, they are even walking in my honor at an upcoming BC walk. Interestingly, I have noticed when I first told everyone I got an outpouring of "Let me help". I think everyone expected the usual immediate mastectomy and they would drop off food, etc. but as I said, I am doing pre-chemo. It seems like people have dropped by the wayside, or don't know what to do right now. I don't have much family, my mom and sister have both been supportive, but don't live nearby. I have every other Friday off, so that will be my treatment day. Then plan to rest through the weekend. But, as everyone pointed out, day 3-on can still be bad. My main concern is my 16 year old, by the time I get home I fall into bed. I have no energy to cook for her, shop, do homework. It is bad enough mom has cancer, but I feel like I am neglecting her in some ways. I thought I had a plan, but when I got so sick after the first treatments, I got a little nervous realizing, "this isnt how I expected it to go, I am superwoman. I am supposed to handle it all." I think I will see how the next treatment goes, and if it is as bad, may have to bite the bullet and cut my time down. My health is more important, and the thought of having the time to blog, or go for a walk, or swim in the middle of the day, sounds so good.

Hi all, I actually had my first chemo end of March, but figured I'd fit in better with this group. I am doing TC x4 and am in the "feeling much better" week before my next chemo. I'm wondering if anyone knows the criteria for getting the shot to boost white blood cells (neutrophils) that many people get. My count is still very low and my doc says just let him know if I run fever. I've been reading, but can't find a definite number that indicates just how low is too low. Anyone know? Also, I've read that at some point you wont run fever, so then how would you know?

Oh, and my first chemo session wasn't what I'd call "fun", but I did sleep through most of it so that's a good thing.

Also, (in answer to someones question about continuing to work), I am trying to keep working through it. I didn't have enough PTO when I had surgery, so I had to borrow 2 weeks in advance and then got short-term disability (1/2 pay) for another two weeks but had to go back to work. So, now if I take off I don't get paid until I get caught up on the two weeks I borrowed. I planned to have chemo's on Weds thinking that the worst would happen on the weekends. The first round worked out just that way, but days 2-10 were iffy. My tongue got icky on day 3 and got a really itchy neck rash days 5-7, serous lack of energy until this week. Luckily, I work in an office and don't have to do physical labor or deal with the public much.

Good luck to everyone and nice to meet y'all.

Virginger,

I don't take any chemo "prep" drugs before hand, but get some IV right before the chemo stuff. A steroid and phenergan I think. The phenergan just makes me sleepy. I slept most of the time during infusion, but was awake enough to drive home. Some people say the steroids make them jittery or have difficulty sleeping but I didn't experience that this time. Also, I took Senokot the day before and a couple days after in case of constipation which seemed to help. (The antinausea medication can cause this) I developed a neck rash for a few days and took benedryl and put on cortisteroid cream which helped.

Hi, y'all. Like Skigirl, I'm checking in from the January chemo thread. It sounds like you're taking good care of yourselves and each other. Keep that up; this whole thing would have been much, much worse without my chemo sisters.



A lot of you have mentioned constipation. I started out on 500 mg of collace twice a day -- which is a ton! -- but still had trouble for theyou first 5 daysmonths of the first round of AC. Rounds 2-4, I added a dose of Miralax every morning days 1-4 and had no more troubles. The key is to figure out how long you need to medicate and how much, and then to start the meds right away, before the constipation starts. I started the collace as soon as I cot home from my treatment. Good luck!



Heather214, I found days 3-5 on AC to be extremely difficult; work would have been impossible. If that happens for you, don't blame yourself. Don't beat yourself up when chemo knocks you down. When you need rest, rest. You won't do your daughter any favors if you spend two weeks recovering from overdoing it for those 2-3 days. Be kind to yourself. Also, in regards to your coworkers, a lot of people say, "I want to help," and then wait for you to tell them what to do. Of course, it's difficult to tell them (requires you to do the planning and decision-making, which can be tough during chemo, and it made me feel guilty and uncomfortable because I'm usually so independent), but most people don't realize that. Give them the benefit of the doubt, and tell them what you need. Meals? Yard work? Housework? Give them suggestions, and be sure to ask that one of them be the organizer and make a calendar. I'm betting -- and hoping --for that they didn't mean to fall by the wayside, and that they'll be back on track with a little nudge in the right direction.



Hang in there, ladies. You can do this.

I notice you took Benadryl rather than Claritin, as most others have mentioned. I'd prefer to take that (or generic equivalent), since I know it doesn't make me twitchy. Any particular dosage? And does it really help? Thanks!

I snuggled with my daughter last night and we fell asleep together. After she went to bed, she started throwing up.

Now I am not sure I should start chemo today, as who knows if this will go through the whole house. I have called and am waiting to hear back.

sending positive thoughts LKSHER! I start tomorrow...

I have to say, I love the optimism here! It brings a smile to my face & hope to my heart.

I'm only 1 day post-chemo but here's my experience so far for those who haven't started yet & want a play-by-play:

This week - started l-glutamine, swish & swallow 10mg 3x/day to help with mouth/stomach issues and neuropathy. Stopped all my other vitamins & supplements.

Day before -- took steroids with dinner (I'm only on half-dose of steroids) -- they made me "high" and I actually loved it lol, got so much done & was in a great mood & not anxious! I didn't sleep all night though, only got about 3 hours in the early morning, and they also gave me very mild heartburn. (Oh, and I started taking colace the night before & will continue for several days.)

Day of -- IV benadryl made me drunk & sleepy. Also got more steroids, Pepcid for acid reflux & Aloxi for nausea, stays in your system for 3-4 days & I haven't had to take a single nausea pill yet! Took a long walk when I got home. Was really wiped out by evening, but had to take another dose of steroids which made it hard to sleep. I did sleep, but very fitfully with long stretches of awake time. Mild heartburn again from the steroids. 

Day 1 post-chemo -- woke up feeling pretty good, took my son on errands & to story time. I don't really have any symptoms, just kind of sleepy (probably from the lack of sleep itself, not the chemo!) Not very hungry but that's not really unusual for me, I tend to be an erratic eater lol. No nausea or mouth sores or anything yet. My digestive system is a bit off -- I think the meds made my body "forget" how to go -- like my lower part of my digestive tract is kind of paralyzed? Probably the Aloxi which is related to Zofran (I had the same effect from Zofran post-surgery) so I'm keeping up the colace & staying patient. No major discomfort.

If the steroids do such a great job at warding off reactions & side effects, I wonder why they don't just have us take them for a week+ straight??? I'm tempted to experiment! But I won't... not yet at least.

I shaved my head last night since I was feeling good. Wanted to take care of that well before any started falling out. I'm not sure what I think. It's not horrible but looks weird to me. I also thought I'd feel like a "cancer patient" once I shaved my head, but I don't. I just feel like me, minus hair. It was very unemotional for me. Sleeping on stubble was annoying -- every time I moved my head I got a pins & needles sensation that woke me up. I grabbed a hat & that helped a ton (even though it felt a bit too warm!) so... sleep with a hat if you have stubble! I managed to go in public this morning with just a scarf and only had one person stare. It wasn't as bad as I anticipated, most people just acted friendly & normal, & I'm glad I got it over with. 

Denise, thanks for the info and support. Looks like you and I are on the same chemo schedule, I too am just waiting for the hair to go - but so far - nothing. I am starting to itch just to shave it off and get it over with. Then my mom mentioned I may be the "ONE" whose hair doesn't fall out, so who knows. Take care of yourself.

                                                                                            Heather

Hi Erin,

Once I got started with chemo just knowing that I'm getting closer to being finished was a big relief for me....and realizing that I will live through it and it was not as bad as I thought.  For me all the research and doctor visits and going back and forth trying to make the decision whether to get chemo at all was exhausting. The more I read, the more depressed I got.  One trick I learned when my huband died years ago was to limit the amount of time I allowed myself to "wallow".  I mean, if I got really depressed and couldn't avoid it I'd just give in and be a hermit for a couple of days. But 2 days is my max. I don't know if this will work for you, because I've never been diagnosed as clinically depressed and I assume some people can't just snap themselves out of it the way I do.

Do you have some supportive people around to help you? Don't be afraid to ask for help if you need it. Try to find a way to distract your mind. I keep thinking about what I'm going to do and where I am going to go once I'm done with chemo and recovered. This diagnosis  made me start thinking that it's time to start enjoying my life and make things happen instead of waiting for just the right time and circumstances. Geez, sometimes you have to be kicked in the b*** to realize that life really is too short to waste too much time being miserable. If you don't have access to counseling already, you can contact the American Cancer Society or the Komen organization and they have support group listings, phone and online support.

Get outside if you can, walk around....do something you enjoy if possible.

Best of luck to you... 

Hi erinm216,

That, to me, is what this board is for..to VENT, share your fears, get advise and most of all love and encourgement....We Are Here For Each Other

Erin, although I did not have the same feelings leading up to chemo, your feelings are completely normal. It is a grieving process of sorts, but important to remember this is a challenge that will not last forever. Give yourself room to cry, feel, and mourn the loss of "the way it was". But, know that this too shall pass. Often the anxiety we build up leading up to new events are larger than the event itself. Just know that we are all in the same boat, and we are here to support you! I feel bad sometimes because I feel like many others on here are so much more "positive" than me. But, I am me, and I have days where I am on my pity-potty, others that I am so pissed off that I got cancer! One day, I was so mad, I got in my car and just drove, screaming at the cancer at the top of my lungs. Thank God the windows were up, but I know I still looked like a lunatic After though, I felt SO much better. My motto is Hang in and Hang on. HUGS!

Ladies, Think about adding L-Lysine to your vitamins. I take 500 twice daily. That helps keep the mouth sores at bay. Also, My nurse only had me chew on ice while she was pushing the Adriamycin not the entire time I was there. I did have a huge cold bottled water with me. I also made sure I went pee a few times while I was there to get the Adriamycin out! So you pee red/orange/pink for one or two times after infusion. I always felt better when I finally could pee a normal color. (sorry for the TMI).

Lksher- I cried when I sat down for my first infusion. I looked around and saw other women bald or with scarves. It was finally real. After I got settled in I felt better and by the end of the day I was ok. I think the anticipation gets the best of us and then we find out that it's not the end of the world. Yup, it's chemo... but not the end of the world.

Wishing all of you minimal SEs