February 2014 Starting Chemo Club

Thank you lago and njmom3v for the welcome!  njmom3 - your port placement sounds like a nightmare!  I'm sorry that you had to go through that.

I just received my order from headcoverings.com for head scarf hats.  I'm not usually a hat wearer, so I needed to stock up.  I have to say that this source has tons of selections and they arrived carefully wrapped in tissue and tied with a pink bow.  They are really nice.  I recommend this source, if anyone is looking for headwear.  In my order, I had selected a soft cotton hat with a scarf built in.  I tried it on right away to try to get my 8 yr. old daughter used to the idea.  She's been brutally honest about my "Frankenboobs" ("Mommy, I'm sorry but they are just not pretty.  They will be though."), and she gave me the thumbs up on the hat choices.

Any recs for taking the nausea meds.?  My MO has rxed "as needed" for zofran and compazine.  I'm not sure whether I should take something before I feel nausea or wait and see.  I'm not sure whether this is one of those things that is hard to control if it gets away from you, like pain, or not.  Even though I am dreading starting chemo on Mon., I'm thinking that it might be kind of a relief to know what to expect.  The anticipation/anxiety is making me crazy.

I'm back. I was knocked down pretty hard with the first infusion. The nausea was kept to a minimal with the meds, but what took me out was the headaches. I had a headache from the morning after chemo until yesterday (5days). I didn't read anything about headaches as a side effect anywhere. Did anyone else have this side effect? It wasn't just a regular headache though, this was the worst migraine you ever had mixed with the worst hangover you could imagine. Did not see light for days. I had an ice pack on my head for most the week. I started taking the left over oxycontin I had from surgery just to try to dull the pain. It never took it completely away. My poor little ones always had to be quiet. Every time they come home they creep into my room and ask if I'm feeling better. My 6 year old prays over me everyday. she prays that I won't go bald lol. I did notice a little more than usual hair falling after I brushed yesterday. It could just be my mind though. I am startung to notice i have a sour stomach. Not nausea 1but like a burning acidy stomach. Any go to remedies for this? I pray that everyone has a easier and faster recovery. It's like getting a beat down, standing up and asking for another. It was hard, but I'm not gonna give up. I was taken down, but not out!

formydaughter I recommend you ask your MO or pharmacist but I waited till I had symptoms and I never did. But at the slightest sign of nausea I would start taking one of them. Don't wait till you start puking your guts out because a. hard to control once you stop and b. if you're puking you will never keep the pill down. Find out which med you should start with. Also check how often. Probably every 6 hours as needed but that depends on the dose you were given.

I loved the scarves from www.anokhiusa.com. Wash and wear. Colors don't fade. For wigs be sure to get a wig cap. Wigs can be itchy.

jujubee83 be sure you are getting plenty of fluids. All that puking dehydrates you too. Sounds like you need meds for your tummy. I recommend contacting your onc about both the headaches, the sour stomach and the meds not completely working for puking. There are other puke drugs but they don't prescribe the pricey ones unless the cheap ones don't work.

Hi Tam178

I didn't take Zofran. I have before and never had an issue (joys of morning sickness). I will look at the other meds and see what their side effects are. Thank you.  

Tam178-I currently have a PICC line, it's not that bad. I've had it in for over a month due to being on IV antibiotics. It IS a pain in the butt to keep dry in showers, but I've become quite good at wrapping it with Sarran Wrap. I do space my showers out to every other day now, but honestly since my MX I've been doing that. I used to be a everyday shower girl, now it's every other day.

anyway, that was probably tmi

formydaughter I did get Emmend in pill form at chemo that I took through the next day but I don't know if they will give that without trying others. Emmend is $$$. The reason I know is about the existence of other meds is I know a physician that works for one of the major drug companies. She was the one who told me that there were other meds available if the ones I get don't work. You will really have to ask your onc about this or query with a new topic here.

Good luck to all the ladies starting this week and thinking of those who had their first chemo treatments this past week.  XOXO

Getting anxious about starting chemo this week. It seems like I should be doing something to prepare for this physically. Unfortunately I think I'm about to start my period, which will make for a great time all around. Anyway, just checking in...hope everyone is doing as good as can be expected.

I am finally starting to feel better after my first treatment. I would say that 9 days out was my first really good day. The stomach issues with the chemo were expected, but the Neulasta crap killed me. Good news, though, is that my bloodwork was perfect when they checked one week after my treatment. I did the Claritin and if that helped, I can't imagine NOT being on it. My onco did say that the first shot is the worst, though.

So, here I am, 11 days after, and what I now refer to as The Great Hair Migration of 2014 has begun. It's not falling out in clumps or anything, but there's more and more in my hairbrush each day. I'm guessing that the clumps will be in my near future.

I really don't want to wear a wig. I ordered a bunch of scarves from an online store called Double Header. They were very reasonable and there was free shipping. I ordered last night after dinner and already got an email that my order has shipped. I'll let you all know how it looks. I also found a cute place on Etsy that sells sleep caps for only $6. I think I'll order a few.

My next treatment is the 20th. Hang tough, ladies. We can all do this!

Hi jujubee83: I'm prone to terrible headaches and was really worried that chemo would trigger them, so I made sure to drink at least 64 oz. of water each day (recommended by my nurse case manager). I only had one moderate headache three days after the infusion, and it went away with Excedrin and a nap. I also religiously took ginger-root capsules (three times a day, starting the day of chemo) for six days. Apparently, ginger root is good for migraines. 

My second infusion is Feb. 20, so it'll be interesting to see if this water / ginger combo continues to work!

If anyone is interested, here's the shop on Etsy with cute head coverings:

https://www.etsy.com/shop/CJHats?ref=pr_faveshops

And this is where I ordered my scarves:

http://www.doubleheaderusa.com/results.asp?catid=5

I can't confirm anything yet on quality since I haven't received them yet, but they were certainly reasonable, and I ordered them last night and they've already shipped.

Just popping in to say hi again. I wanted to tell you guys  a trick. If you are wearing long scarves use a scrunchie to gather the scarf like a pony tail. It's easier than tying them.  

Also my port has been in for more than 2 years with no problem. As I still need some IV meds 18 months PFC I left it in. It was put in 2 days before my first infusion and left accessed til after my infusion 2 days later. Also I needed antibiotics for an infection and it was accessed for the 4 weeks I needed IV abx. 

Another thing not yet addressed. Most people tend towards constipation during chemo. I was one of the ones who went the other way. I got the big D every chemo from day 5 to day 10. So if this happens to anyone feel free to PM me and I'll help if I can. 

And last thing, if your neck bothers you after port placement, it's because sometimes they access your neck to either place the port or the tube sometimes to find the correct placement. 

Much love to all. 

FOR THOSE WHO HAVE A PORT FOR CHEMO :  You may want to ask your onco for a prescription for EMLA cream (lidocaine) so you can numb the port area before you leave home for your round of chemo.  If you forget to apply the EMLA cream or don't receive a prescription, ask the infusion nurse to use ice on the port area with numbing spray.  That way you won't feel the poke when the port is accessed. 

If you receive a generic EMLA cream at the drug store, it may not come with any special coverings ( Tegaderm wound covers that can be purchased at CVS or Walgreens) for the area to put on after you apply it.  In order to avoid getting the EMLA cream on your clothes and other places, just a 4 X 4 inch square of Glad Press N Seal plastic wrap to cover the area.  Make sure you avoid the temptation to spread the EMLA cream on the port area; I'm told that your fingers will be numb for quite a while!!!!

If you aren't prescribed EMLA cream , ask the infusion nurse to ice the port area to numb it. 

If you just got your port right before your chemo, just know that you can't use EMLA cream on an newly sutured area.  Ask the infusion nurse if there is anything that can be used to numb the area if you have a new port.

Sometimes I applied the EMLA cream myself instead of letting my husband.  I would stand in front of a mirror so I see where my port was.  I would then squeeze the cream starting in a spiral until it was about the size of a quarter and then put either the Tegaderm wound cover or a piece of Press N Seal plastic wrap.  I was able to spread the EMLA cream with the covering so I couldn't numb my fingers and to make sure I had enough on in the right place.

Wishing those here an easy time with their upcoming infusions.

Siniberry:  I had 4 rounds of TC and did not get a port. I know this is nerve-racking to all of you, but we are here for you and each other.

Just think of 12 hours at a time.....Made my life a little easier.