February 2014 Starting Chemo Club

Kaluha and all the others, sending hugs! This is a terrifying time for us all. Don't be afraid to look for a shoulder.

I ended up in the ER yesterday. I had a low grade fever and a tight chest. My doctor was afraid that I had a clot (I have a history), but they think it was either a reaction to the Neulasta shot or the fact that my port site looks like raw meat. They can't tell if I have an infection, even though my white count is up, because that's what the Neulasta is supposed to do.

The Neulasta shot side effects got pretty bad. They are a little better today, but they were so bad last night that I had to take Percocet, something I don't do easily.

I don't know if it has already been mentioned, but I recommend all asking your onc about taking probiotics during chemo.  They should theoretically help with keeping the normal gut flora.  But again, anything you take must be approved by your onc. 

Hi Ladies,

I start Chemo Feb17th, getting port put in probably Friday. I am not sure of what meds she is going to be using. I was kinda shocked when she told me that my onco test came back 30. I will be getting 4 rounds of chemo, then radiation, then after all that will go on the hormone blockers.

Hope everyone has an easy time and gets well soon. I told my sis in law that I am going to rock the bald look. Going to get some temp tattoos and do different ones each time I go in. Good luck everyone.

I wondered about the port thing too...does it hurt when they access it? right now I have a PICC line in, so I'm pretty sure they will use that for my first infusion, whenever that will be!!!! My BS doesn't want to do the port surgery until my drains are out, and the PS wont take the drains out until I am 20 cc or under for 48hrs. It's annoying and frustrating. Anyway, I'm stressed because my MX was on 11/27 and still no chemo. I know delays happen, but it is wearing me out.

I hope to know this week what is going to happen, but I've been saying that for awhile now

Good luck warriors!!

Hi njmom3: My second infusion is on Feb. 20. I was only able to do a couple hours at work today and hit a wall. Hopefully tomorrow will be better. 

Question for y'all: I've had minimal problems with mouth sores—mostly, my tongue just feels a little raw, but everything tastes fine and I've been using Biotene twice a day. A friend who had chemo a couple of days before me (so, she's seven days out) says she lost almost all sense of taste today. Is this a SE that creeps up on you? 

RE: ports being stuck/does it hurt, etc.  At my facility they would spray a cold substance that freezes the skin momentarily (fluoromethane) before inserting the port needle.  My nurse would also count 1,2,3 (inserting on 3), and I would blow out on 3.  It made it nearly painless for me, just a tiny pinch.  Many use the EMLA cream prior.  If you don't have access to either, I would ask if you can ice the area a few moments before insertion if you are really squeamish about needles. It should numb the skin.   Oh and I barely even felt anything when he'd remove it.  I highly recommend breathing out when any needle is put in or taken out.  It helps me significantly - I think it is a good distraction effect.

You can sometimes feel a slight cold sensation as saline is going in, but otherwise, no, I didn't feel anything as the chemo went in.  And at my facility, they always accessed it, took blood to check my counts, etc. before administering my chemo.

In terms of when the side effects start, for me I was so pumped up with steroids the day before, day of, and day after that I didn't feel many side effects at all (in fact, felt surprisingly good) for 2 to 3 days post chemo.  My worst days started around day 4 or 5.  YMMV. 

NJmom, I suggest taking a pain pill prior to having your drain removed.  It is a very quick thing, and you will be SOOOO happy when it is out, but why stress yourself out over it?  I took a pain pill and mine didn't hurt as bad as I was expecting.  Pain pill and big breath blowing out as he quickly pulls it out, and you will be just fine and thrilled it is done and out!

Mazie - I never experienced taste changes, thankfully.  I did have a few mouth sores after my first chemo.  I had chewed a few ice cubes, but was kind of lax about it.  For the remainder of my infusions  I was VERY religious about chewing ice during Taxotere (and 15 min before and after), b/c that was the drug on my regimine known to cause mouth sores.  I never had an issue with mouth sores again!

Now thrush...that is something I suffered with after each chemo.  That is totally different from mouth sores and is due to my low white count from chemo and also due to the steroids raising my glucose levels and giving the yeast lots of energy to grow on.  They have treatments for that so if you get a white tongue tell your doc. 

If you have a port, you will not be able to use the EMLA cream on the first infusion if the area is newly sutured.  So ask the infusion nurse to ice the area.  The other thing that helped me get pass getting poked ( and actually still helps me) is that I just turn my head the other way and don't look.  I know it sounds way too simple but I've found that I don't need to see everything that is happening to me.

Here are some tips 

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 ice the area to help numb the skin.  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 coverings)  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!!!!  (FYI  The Tegaderm coverings may be purchased at CVS or Walgreens)

If you aren't prescribed EMLA cream or not allowed to have the numbing spray at the infusion center, ask the infusion nurse to ice the port area to numb it. 

Mazie- I had the same chemo regimen as you are having.  My taste buds would be fine for the first 5-6 days and then be vacation for another 10 days and would return a few days right before my next round of chemo.  The only change I noticed in this pattern was that as the number of rounds went by, the taste bud vacation would occur a day or two sooner. 

I know that having one's taste buds go on vacation is no fun.  I viewed eating as a means to get nutrition and fuel for my body and not as a means to provide me comfort.  It is true that if you do have some favorite foods, that you may want to avoid them while in chemoland if you want to have stay your favorite foods once you have finished chemo.  With that in mind, I did eat my favorite foods but I ate them when I knew my taste buds were okay and not when they were wonky and everything tasted like cardboard. 

Wishing each of you an easy time in the Big Girl Chair ( BGC) and minimal side effects.  I know some have yet to start chemo.  No matter where you are in chemoland, please keep coming back and asking questions.  We are here to help you. (BTW- I am one of the gals from the March/April 2012 chemo thread with Kjliberty and Dancetrancer and asked to come here to help).  HUGS!!!!!! 

Got my first infusion yesterday. I went in, they took vitals and then escorted my to my thrown. I sat there and the nurse asked me if I had my port in. I told her no. She said it will be very difficult to access it. I told her I had really good veins, she didn't believe me til she saw it. As soon as she placed the tourniquet on BAMM! That lil of thing pooped up so fast. 

Hi Everyon, I would like to join you amazing ladies on this next step.  I am starting chemo someitime this month.  I had a double masectomy in January and I am waiting to have one annoying drain removed.  I think it is coming out on thursday.  I tenatively start chemo on the 18th.  NJmom3 we are having the same treatment.  I am doing 4 rounds of AC every fourteen days with a shot of neulastra and then 12 weekly rounds of taxol.  I will also be getting herceptin with the taxol.  I want to get it started so that it can do its job and I can get it behind me.  I was hoping that I would feel stronger going in though.  I feel like the recovery from surgery is really slow going.

I look forward to sharing our ups and downs over the next few months.  Here's to our success!

Hi All,

Glad I found all you other "newbies"!  I had my first chemo last Thursday, with my Neulasta shot on Friday.  I was doing great until Saturday night and then all of a sudden the bone pain came and crushed me.  I was in horrible pain all day Sunday & Monday and woke up today just feeling miserable.  I know the next time I go for treatment it can be totally different but I was just wondering if anyone had pain the first Neulasta shot and did something different the 2nd time that worked?  Thanks everyone!

Melody

Notes34 and Gardengirl:  I took a claratin the day of and seven days after.  Don't know if it helped, but I had no bone or joint pain.  Just the regular claritin; not the "D".  I had the exact regimen you are on.  Jut remember, you are 25% done, and the next one you will be 50% done!  

Gildedcage:  Doing a happy dance for you!  Congrats!  My last rad was probably my most emotional day of my journey.  I cried the entire day.  Didn't know what it was like to not be "In treatment"  It was liberating!  

Seanie:  As your MO to prescribe an anti-anxiety med for you and take them even the day before and the day of.  It really helped me get through chemo, especially the first one.

notes34 (Melody) The first Nuelasta is the worst. Not as bad after that. Ask your onc if you can take Claritin. Seems to help a lot of women. 

seaniebopp No wine, only Whine is allow when doing your first chemo. kjiberty says if you don't get anxiety drugs the ask for them. My onc had them as part of my drugs to purchase. While some of us never needed them many women do. I wouldn't be surprised if it was like 1/2 of us take them at some point. For me it was the MRI. I came really close to taking them but toughed it out since I wanted to be able to drive and not make my husband miss work for just a test.