My experience with Herceptin, Prejeta and Taxotere

I am on day 20 of my first 21 day cycle, so me experience at this point is very limited, but not only is it good for me to think through the side effects of the drugs before meeting with Dr. J on Thursday, as a cancer patient it is invaluable to consult the experience of others to anticipate what a new treatment will be like or to check my side effects against what other experience.

Granted, no two people respond the same to these drugs.  Interestingly enough, two people with similar cancers can get the same drug and have some similar results and some wildly different.  I think this is puzzling and strange.  If two people take Tylenol the experience is similar.  As is the case with many other drugs - but not so with chemo.  So - if you are a cancer patient and reading this to see what it may be like for you to take these drugs - remember it could be different, and hopefully easier for you. 

When Dr J described these drugs she explained the side effects should me minimal.  Hair loss was practically a guarantee.  I have a sliver of hope still that I will keep my hair.  However, for the last week or so I have been feeling the hair loss start, and yesterday it began falling.  I suppose I will be bald again within 2 weeks.  I could begin a rant about how much it sucks to match headscarves to outfits 7 days a week, but instead I will speak out for the bald babies of the world.  So, being bald is cold.  Give your infants a break and put a hat on them all the time.  Even in the summer.  Having the sun shining on that tender skin hurts.  Don't assume your baby wants to be cooler by not wearing a hat.  Protect their heads.

Losing your hair  - what is it like?  When the chemo begins killing the hair follicles, which causes the hair to fall out, it feels like I have been banging my head against a wall or been hit with a baseball bat. If I touch my hair and cause it to move at all it hurts.  If I touch my scalp it hurts. The pain intensifies as the hair loss continues and my scalp is tender for a short time after I am totally bald, but it hurts less when the hair is gone.  However, within days of being bald it doesn't hurt at all anymore. Being bald is really cold in the winter though.  After I lost my hair the first time, whenever I saw a baby without a hat or cap on I would be angry. So, being bald is cold.  Give your infants a break and put a hat on them all the time.  Even in the summer.  Having the sun shining on that tender skin hurts.  Don't assume your baby wants to be cooler by not wearing a hat.  Protect their heads.

I have also been dizzy almost everyday, all day long since my first treatment.  Chemo can do this to varying degrees.  And, it has been like that for me.  Some days I am manage better than others and some days the dizziness causes nausea.  It is best when I don't move - just stay at my desk and keep my chair still.  But other times, like today, even laying down I feel like I am swaying and it is a challenge to accomplish normal tasks. 

My first treatment left me with awful headaches and nausea.  Nothing I had used in the past to treat these came close to stopping the problem, so I landed in the hospital.  That story is in a previous post,Biopsy results, Cleopatra study and totally bombing my first treatment. 

I am emotional.  I have cried more in the last 3 weeks than I have in years.  I swear it is true.  The other day I heard a song on the radio as I drove into work, "I loved her first" about a father telling his daughters new husband to remember that this woman is always going to be his baby and should be treated right.  My kiddies can't even drive yet, but I bawled for the day when I will have to trust someone else with the care of their hearts. 

My crap-o-meter is maxed out.  When I see something that isn't right I can't hold my tongue about it as I usually do.  While there are a couple personal examples of this I am not going to share them here.  One I will share is this, last night as we attended the National Junior Honors Society swearing in for my daughter they played the national anthem.  A middle school age boy was in the row in front of us.  He had some change in his hand and kept clanking it.  I wanted to stop his forcefully but I managed to just tap his shoulder and tell him to be quiet.  This coin-in-his-hand boy is a culmination of the emotions, headaches and crap-o-meter failures.

Basically, this regimen sucks.  I read about a number of patients with minimal side effects.  For me, this has been like going back on the hard chemo I took in 2006.  I have thought a lot about stopping cancer treatment all together.  If I ever need to make that choice I want to make it early enough that I have a decent amount of time where I feel healthy so that I can make the memories I want to outlive me.  I don't want to be in treatment up until the time I have no strength left and the only memories of me are the ones where I was sick, tired, dizzy and miserable. 

But, for now I am going to take it one treatment at a time.  I am going to get chemo this week which can be translated to, I am going to live beyond my means and spend money I don't have on drugs that make me nearly useless to the world and my family because, although I don't even have enough hope left to feed an ant others do.  I am going to put my faith in their hope and prayers because I want to be there when my kiddies choose someone to marry so I can warn him about the fear he will live with if he betrays their hearts.