Chemo group starting December 2014

Is there a "stuff you need to be prepared for your first chemo" sticky post somewhere?

I've been trying to note down things, but am not sure I got them all.

Specialk, Thanks, I have been using vaseline and it is getting better.

farmdau - ask your onc which H2 blocker or PPI (most are over the counter) they prefer - Prilosec, Zantac, Pepcid, Prevacid, etc.  My experience is that Zantac works the fastest for me.

april - you will come around to the "it is what it is" philosophy pretty quickly once you start this, lol!

please include me on the facebook page.. I start chemo Friday

good morning ladies...I'm actually getting my first round of tx chemo in about 1.5 hrs as usual the unknowing is the worse but I've made it this far. Usually I say I don't care what you get me for Xmas to my husband but this year I said wigs scarfs and hats 😊 I was. Dx with stage 2 in August onl to find out. After my path report after my masectomy that it has spread to my nodes so back in for surgery..during the second surgery I svted so everything was put on hold for a bit till my heart was ok but now I'm ready for this next haul...I'm right with you ladie

Good Morning Everyone

lynetteb75 - good luck with your appointment this morning.

I am on day 8 - hair still on! tummy is ok most of the time, mouth sores a bit...sore joints and muscles is my biggest complaint, along with headaches...

Started chemo on 12/5..so far so good...did anyone every question themselves on the regimen you chose?? I have been having a difficult time with this and just can't seem to stop doubting myself. I chose TC x 4 due to the heart complications that could arise from ACT. Not sure I did the right thing... seems as though anyone with node positive (I only had one out of 17) and a grade 3 (with lymphovascular invasion present) do the ACT regimen. So worried I made the wrong choice.. NCCN listing shows both as regimens for Stage 2 IDC. I read and reread the pathology report, all cancer removed with clear margins...its the LVI and the node with focal encapsulated extension that is really bothering. I Know its important but should I be hung up on it to the point where it drives me crazy?

Not sure whether this is normal for our minds to work or am I really having a difficult time dealing with this and making decisions.. I seem to go back and forth and never know the right answer.

Anyone that can say or share anything to help me through this would be greatly appreciated!!!

Hello ThinkingPositive - decisions like these are hard to make. Trust that you made the right decision with the information you had....if you are not sure or have more questions - talk with your doctors, ask for the numbers, clarify where there is doubt. Be strong for you and know that we are here for you...Good luck - and just like your code name - think positive!

Connie

Laura, do you have Ativan for nausea too? It's my "go to" night time nausea med since it helps with sleep too. Chemo nurse told me it's safe to mix and match with the Zofran.

My first Chemo is tomorrow.

Yesterday, got a Port. My surgeon said they didn't have any mini-ports. They have to be specially ordered and requested. One of the guys setting up the surgical equiptment said they tried to get an order but the front office denied them!

Currently, port area itches and I'm developing a big bruise. The surgeon had to come out in recovery and put more bandages on because I was bleeding. I keep saying I bruise easily, but they never seem to think that is a clotting/bleeding problem... only "Oh, lots of people bruise easily! It's nothing!"

I was awake all through port placement and at one point felt huge gush of warm blood... I found big huge clumps of dried blood in my hair this morning and it was a pain to try and get it out when they told me to only do sponge baths!

They had BETTER use stupid PORT at infusion clinic because I'm not putting this in for nothing!

I have received conflicting info as to whether I should take my Type 2 Diabetes Metformin. One person said I should skip for DAYS after. The other didn't mention anything about it but say not to take it on the day of the procedure! I need to try and contact them again, since it's sort of important... but they are hard to get ahold of. They were supposed to contact me with the info of what to do pre-Port placement and called but got cut off and i had to try and call them and left a message over the weekend. I finally had to go to the center and get the check-in people downstairs call up to them... and get someone to call me back.

Did an out-of-pocket PET scan today because my big-all-in-one-box provider couldn't fit one in before chemo and i haven't had surgery, SNB, any MRIs or bone scans...

Out-of-pocket 2nd opinion Oncologist said to do it. I'm switching to him as soon as I can get new insurance in January! He called me this afternoon and told me my major organs looked OK, BUT, they discovered that I have coronary artery calcifications and I should go to a cardiologist ASAP. But Chemo first. I asked if the heart thing would be a problem, but he said to just go. Chemo probably wouldn't interfere, or visa-versa.

GAH!!!

Got a very, very expensive wig today, at least.

Had to call up infusion center to check if oncologist actually DID prescribe Perjeta and in the right dosages, because he was wouldn't until he got the 2nd Opinion letter recommending it. He said he was used to old protocol that said Perjeta was only used with Adriamycin. So I called to make sure! Infusion center nurse/tech checked and said she didn't see Perjeta!!!

Made a ton of calls on the way to wig shop, frantically calling Onco, to make sure he had the order in. Sending the Test Protocols from San Antonio to make sure they were doing the right combination...

Finally got a hold of the Infusion Pharmacy and they actually were very clear about the Perjeta (it will be given to me) and the dosage (matched the Protocols). So THAT'S sorted!

But my hair is thinning and falling out in clumps even BEFORE Chemo! And I'm having stomache upset and... *sigh*

I just hope I don't have a heart attack because of the coronary artery disease I've discovered I have today!

Am I getting hot flashes from the PET or the Port placement? *sigh*

I am so not a happy camper. The actual Chemo will be restful and at least I'll have a reason why I'm losing weight, feeling achy, having my hair drop out, and kind of anxious!

Good luck everyone!

I'll see how Chemo is after tomorrow!

april25 what a SHITSHOW!!!

good for you for being so on the ball in calling around and trying to sort out these clowns you've had to deal with. let's hope the chemo turns out to be the least bothersome part of your experience so far!

my hair started falling out before chemo, too because of stress and i had diarrhea for the entire month of august... stress does wonderful things to us, no?

Okay - crazy question...is it "safe" to have intercourse while on Chemo?

Before I embarass myself and ask my MO I thought I would ask here...

april - while it is good to note other's experiences it is also important to know that different drug regimens have different sets of side effects. Some of the side effects that someone on an anthracycline drug regimen (AC) may be different than someone on a taxane (Taxol and Taxotere), and Herceptin and Perjeta have their own particular effects.  Be sure to check with the ladies on the TCHP thread for their experiences too. 

cjfisher - I was told that it is fine but to use a condom - not for birth control (although that is good too - but wasn't necessary for me!) but because the chemo drugs are excreted by mucus membranes and you don't want to expose your partner.

wheely - most lose their hair, or start, at 14-17 days.  It can come out in clumps or handfuls once it starts to actively fall and blow drying and washing will accelerate that.  Mine seemed to come out more from the front of the hairline first - like my forehead got a lot taller - not a good look.  This happened as I was drying it.  I continued to dry it and then had my husband shave it off,

SpeicalK - Thanks for the info, not what I wanted to hear but oh well...Guess it will be air dry and the trusty old Santa hat the rest of the week. 

Hope everyone is doing well today and prayers for minor or no side effects for those having chemo tomorrow or Friday.