April/May 2012 Chemo hang out

Hi. I have not posted in a while. Today is day 12. Last 2 days have been my best. I had some nausea, no vomiting. But suffered dizziness really bad. 'Hold on to the wall or anything within reach' dizziness. Mouth dryness is still bad for me. No sores inside the mouth, throat was a little sore, and inside my lips was the worst. Used Mary Kay extra emollient night cream and has surely helped. Mouth rinse did help with soreness, too. I am a little concerned about the small incision on my neck, where the catheter enters my vein for the port-a-cath, incision over the port is healed fine, but I'm feeling the catheter where it goes into the vein, and today it seems to me to be too red. I am out of town, and wondering if I need to call the exchange and ask about it, or if it can wait till we get back home tomorrow. Anyone else have slow healing of that tiny incision??

luvBngGma - If you were given a number to call for emergencies and/or questions then it is best to call - sounds like the exchange is probably a on-call nurse. It is your health - better to get an answer so you could sleep well and not be worrying all night. Hope it is not a start of an infection. I had a drain with my surgery and it has taken a long time to heal.

Well, that sounds like it answers my question about a mask.  I'll just wash my hands A LOT, take great care.  I'll avoid handshakes, kisses from relatives, all that kind of stuff.  I think because I am Pre-Chemo, the more I think about the side effects, the more scared I get.  I think I just have to take it day by day and I'm sure some of the side effects I will get, others I will not.  Still scares me though...time to listen to music and relax my mind a bit.

Oh NO, vballmom!  That's a memorial way to spend memorial day, but I don't think that's why they intended.  I hope you get to feeling better right away.

Butterfly - just wanted to add - make sure you moisturize your hands a lot, too, with the extra washing.  I washed TOO much and used hand santizer my first round (can you say paranoid?)...ended up with cracked skin on the back of my hands that was a possible site for infection....duuuuuuuhhhhhhhh....trying to prevent one problem created another, LOL!!!!  So what I do is I took old socks, cut off the top and made a little hole for my thumb.  After I wash my hands, I almost always moisturize, and if my hands are looking extra dry, I put on extra moisturizer and the fingerless gloves to hold it in.  I also sleep with these on to give them some extra moisture.  No problems at all since I started this routine. 

And regarding being scared, especially when you know what COULD happen...I totally get that...it's so hard to be an educated patient without freaking yourself out.  Yet if you put your head in the sand you aren't doing yourself any favors, either, IMO.  You are smart to know when to put the brakes on and realize, indeed, all of the possible things that could happen WON'T happen - and you will just deal with what does happen.  And by being prepared, you may very well likely PREVENT many of the side effects!!!  Enjoy that music and relaxation time!

lisa2012 - you sound like me with the thrush!  I had a good response to Nystatin initially, then not so much subsequent rounds.   And getting it just before round 3...me too!  How crazy is that???  BTW, all, I just read that you should brush your teeth 30 minutes after Nystatin...I had been going to sleep after rinsing, thinking it would be good to give it a long time to work - but apparantly that is hard on your teeth!  So now I brush 30 min afterwards and rinse with fluoride to help keep my teeth strong.  Wish it had said this on the bottle.  The only reason I discovered this is b/c I noticed my teeth are becoming unusually white, so I looked up Nystatin...I have no idea if I did any damage, but hoping not!

Also, I totally understand the low energy and not feeling great even the 3rd week.  You are doing better than me if you can muster the energy to walk 20 to 30 minutes every couple of days.  I'm not going to push myself or be hard on myself for not being able to do my normal activities.  My red blood cell count is low, which means my body is not getting enough oxygen, and my heart has to beat faster and work harder to supply my body with oxygen.  This is why I feel so tired.  It is a biological process, not me being lazy or not pushing myself hard enough.  In fact, if I push myself harder, I am only straining my heart farther.  I share all this to say - be easy on yourself.  Chemo can be a rough ride for some of us, just because that is how our bodies respond, not because we are doing anything wrong or aren't strong enough.  I hate not being myself either, dropped the F* bomb a few times this morning...feel like I'm getting to the end of my rope in my tolerance for this sh*t!  

Sorry for rambling.  Had a rough night last night, awake so many times!  

vballmom:  Keeping you in my prayers and to feel better soon!

dancetrancer:  thanks for the link on the food.  I can't wait for this chemo to be over so I can enjoy everything and not worry about infection! 

Vballmom, hope you feel better soon! Prayers that you will get to go home soon!!



Lisa2012- feel bad that you have such low energy, could be your system and the treatment they have you on. However, are you getting enough protein? I understand it as lots of fluids and lots of protein along with rest (which you are obviously getting enough of) are the best ways to help our bodies recover. I found that after have some natural turkey breast from the deli counter, my energy level picked up. Also, small snacks or meals throughout the day.

vballmom - feel better soon, sending positive healing thoughts.

dancetrancer - hope you are right about the skin thing, at 62 years young I could loose a few wrinkles!  Wouldn't that be a kick if it's true (chemo silver lining as you said) - think though I'd rather loose the wrinkles via peel or facelift - HA!

My question of the day, those of you getting Herceptin on the weeks you don't get the TC, do they do bloodwork those weeks too?  I am not getting the neulasta shots, daughter didn't get them either during her chemo.  So of course I wonder after my first TCH last week what my count will be this week and if they'll check it?  Started thinking about it again this morning after I picked a couple of pounds of beans, tomatos and squash from my garden.  When you look at your lab results are they just looking at the WBC?  Mine was 10.7 prior to last week.  

VBallmom, I'm so very sorry that you are in the hospital, but I know that they will take good care of you!! Know that all of us are thinking of you, sending healing thoughts.  Hang tough girlfriend!!

Stacie - how exciting that your MO confirmed the skin benefits!  Well yee-ha, something to be happy about!  LOL! 

rgina - my onc checks my bloodwork almost every time I go in, but I don't know if that is b/c my whites dropped so low the first time that I am followed closer, or if that would be normal practice to always do it prior to Herceptin.  BTW, I found the weekly Herceptins to be easy w/no significant extra side effects seen yet - YAY!

Oh and the plan was no Neupogen for me, either (onc's protocol and MD Anderson's protocol for TCH), but once they saw how low my whites went, they decided it was not in my best interest to hold the Neupogen.  

So here's the scoop on the whites.  It is not just your WBC.  

The number you want to examine is your ANC (absolute neutrophil count).   ANC = white blood cell count X % of granulocytes (they are also called neutrophils). There is a more complicated formula, but this one gets you close enough and is the one I use.

For example - say your white blood cell count is listed as 3.0 K/uL (scale is important - so look and see how yours is listed) and your neutrophil/granulyte % is listed as 25.2%. You convert the WBC to 3000, multiply that by .252 and get an ANC of 756. This would be Grade III neutropenia.

Grades of Neutropenia

Grade 1 = 1500 to 2000 = slight risk of infection

Grade 2 = 1000 - 1500 = minimal risk of infection

Grade 3 = 500 - 1000 = moderate risk of infection 

Grade 4 = < 500  = severe risk of infection

I was in Grade 4 neutropenia first two rounds, for about 3 days straight, despite Neupogen injections being started earlier during my 2nd round.  It's actually not uncommon to drop that low on TCH, from what I understand.

This 3rd round we started 24 hours after chemo (thurs), Fri, skipped the weekend (doc afraid I'd go too high, I think, w/o blood monitoring), and gave myself another injection this morning (ooh fun).  I'm anxious to see what my numbers are tomorrow!  Hoping getting the Neupogen earlier is keeping me safer.   My nadir starts tomorrow so I'm sure I'm already dipping down day 6 today. 

Good morning everyone,

I have been following your posts for a while now and have finally decided to join.  You all seem awesome and I do look forward to chatting with you all.   However, I don't know if I am too late for this group since it is the end of May.

I have my first chemo treatment tomorrow morning.  I am to have six treatments, three weeks apart.  The first three are FEC and the last three Taxotere.  I am very nervous to say the least! Then I get a month off before starting six weeks of radiation.  After that, five years of Taxol. 

I know that I have a tough road ahead of me for the remainder of 2012 and am doing my very best to stay positive.  I have never been someone who wishes her life away but I sure am looking forward to the end of this year!

I have so many thoughts in my head right now and could probably type all day.  But for now, I will restrain myself.

Have a wonderful day everyone and Happy Memorial Day to those of you celebrating in the USA. 

Talk to you soon,

Misty