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.

What is the Chemo Eribulin (Halaven) like?

So, I have finished round 1 of Eribulin/Halaven.  Each round consists of two treatments on consecutive weeks and a week off in between. About 50% of patients have few or no side effects. I have not fallen into that group. I am very defendant on my anti-nausea meds over the 3 days following infusion. I also get intense headaches and feel pretty exhausted. 

I have my infusion on Thursday. Friday I got home from work and went to bed. I was there all weekend except for driving the girls to and from some of their activities. Thankfully, we had help with that too. Monday comes and I wake up early. I lie in bed repeating affirmations in my mind that I can make it to work, I have rested enough. Today I got through my shower and started normal preparations, but my body is still doped up.  It just won't function quite right. So, I am taking a sick day.  I can't remember if this is my first or second one this year- either way I have been very successful at powering through. That's a blessing to count for sure! 

I don't know if I will lose my hair, again, it isn't a definite reaction to this chemo, but possible. If I do, I don't think I will hassle with scarves all summer. Too hot. 

I am afraid I am at the point where all the best tips for making chemo more tolerable are "labor intensive" and I struggle to have the energy to keep them up. 

I am struggling with a lot of things right now. But, I am trusting that this chemo is working.  Of course it is, that's why I feel so rotten.  (Scientifically this is not true.  Many cancer patients struggle with a drug just to find it isn't effective for them.)  But, I trust in The Lord, and in the words of a preisthood blessing, telling me this will be an effective chemo for me. This will stop the growth of the cancer. And, I am holding on to the faith of others that I can be one of the 2% who can be cured of stage 4 breast cancer. It will be a miracle. I do believe in miracles. 

More blessings: 

7. I have the best kids

8. I have sick days at work to use when I need

9. My family and friends have faith when mine is worn down

10. Warm heating pads

Loosing hair during chemo

20 days after starting Abraxene: 

My hair is beginning to come out, but it is very minimal now. Here's how it started.  It is just a few strands at first that takes BigSexyHair to BALD-and-BEAUTIFUL.

I probably lost 25x that throughout the day. My scalp is really itchy and is covered with a stinging sensation.  It feels like you are getting a perm (remember the 80s?, perms and claw bangs.  Ya, I did that) and the perm solution is left on a bit long.  It was much the same a couple of years ago when I was taking the red devil.  (I had all the side effects listed here, and more.  It was a powerful (read pain in the ...) drug).  But - it is also a killer, in a good way.

I think the waiting is the worst part. When you find out you are going to loose your hair from chemo you  have to reconcile that fact in your mind.  When you have accepted your new fate, started telling people it is coming, and even buying wigs, scarves, or hats then it feels ok. But when you have done all that and your hair is still there you have time to start getting mad that you are going to loose your hair again and the you have to reconcile. 

A few days ago I ordered some scarves and yesterday I picked up my packages from the post. They are so pretty! I purchased a black and white batiks print and a jewel toned one from headcovers.com. I loved the selection and prices on this site. I definitely recommend them. Next I would like to get something with fall colors. Maybe like this solid beige.  But, I do love prints too, like the stripes.  Maybe even a floral.  Choices!

My new head dresses

I also ordered a wrap from GoodWishes.com.  LOVE THEM!  I am going to write a post about this awesome company and tell you how women with alopecia can get a free wrap or scarf!  I saw the marbled cat
and thought it would look awesome with a black blouse, jeans and gold jewelry.  I love the wild element too - you can't fight a tame fight against cancer.

3rd Abraxene, still my own hair 

Here is the head covering I am sporting now, from my plastic recliner at the chemo pharm.

Treatment went great today.  I really wished there was some Frank Sinatra playing so I would take my dance-partner/IVpole out on the floor between trips to the bathroom.  My tumor markers are doing arial stunts with nose-dives in the 50s this week.  (The normal range is 40-ish.  I was over 300, now under 200 again)  But, treatment takes a long time.  Between signing in, waiting to be called back, vitals, and blood work to be sure I have enough white blood cells for chemo, waiting for the chemo cocktail to be mixed, getting pre-meds, getting chemo, flushing the line, scheduling a follow up... I can't get it under 2 hours.  I really wish I was a nurse.  I would run my own chemo right at my office desk.  It wouldn't bother me at all, but for those who aren't used to the scene it may be distracting.  But really, when you are living with chemo the routine needs to fit into your life a little better.  Stage IV patients are looking at a long term situation.  What a blessing for cancer to become cronic and not fatal.

Now the treatment needs to catch up to patients like me who are the sole-provider for their family, raising young children, and trying to build a future not tiptoeing into retirement or disability.  It isn't home health - it is office health services. (My name is breastcancerwarrior@gmail.com and I approve this message.  I also claim it as my original idea for a business.  I will sue you if you take it!)

BTW - tomorrow is FRIDAY!! :)

Oops! Is that my car out of gas?

IT IS LAUREN'S FAULT!!!!

Even from 1,500 miles away she is making me run out of gas!

I was rushing off to my chemo injection, trying to make good time because I was a touch behind.  I lost track of time while working, but I was still going arrive within 5 minutes of my appointment, so I decided to just get gas after.  I mean, it is only 4 miles.  Just as I prepare to change lanes and circle around to the connecting interstate my car began "running" silently. 

Part 1:
"Oh, no.  Really?  Come on, just go a bit further.  Oh stop honking, can't you see I just turned my hazard lights on?  Do you think I wanted to a rest stop in the middle lane of the tollway? Just a little farther.  YES!  I can pull of there."
Calling mom, "Hi.  Can you help me?   I need gas."   I really hoped mom would just bring it.  But, nope, she brought dad.  He is not going to be happy about this. 
Gas can emptied into tank.
Give him something to think about besides how stupid it is to run out of gas.
"Well, would you like some chemo?" 
Dad: "What?" 
"I am going to go get some chemo, but I will share."
Dad: "Uh, maybe see if your mom wants to go."
Mom decides to come and we get int the car.

Car won't start!?#!
Stop Dad from driving off.
Dad jump starts the car successfully after 2 tries.
After gathering Mom, Dad, 2 NTTA Customer Care Car Service guys, zip off to the hospital knowing full well that if the battery was too dead to start right up on one try it isn't going to start after chemo when I have to rush off to take on of the kids for a check-up.
Decide I should have been shopping more aggressively for a new car.

Part 2:
Enjoy my soapy, internally cleansing Abraxane, laugh with Nurses H and C, tease Nurse S, and tell Dr J that this chemo is sooo much easier to manage than the Zeloda.  Check out the green smoothie the other nurse is drinking and compare recipes.
Zoom off to check kiddies out of school to get to the check-up I know will include 2 hours of waiting. 

Part 3:
Running tight on time so I am too hungry to stop for a 2:30 lunch.  Luck me, the check-up was lickity-split.
My mom is preparing to start a specialty baby blanket e-store.  She makes the sweetest cuddly blankets with crocheted lace edges.  She has designed her own edges.  They are
the most beautiful gifts.  I loved having them and love it even more when I get to give one to a friend.  
I will be creating the website so we begin to talk marketing.  Kiddo #2 comes up with an awesome name when the rest of us are too stumped to be creative. 

Part 4:
Finally, most of the most time sensitive tasks for the day are out of the way.  I ran into an old friend I haven't talked to in years.  We were just getting caught up when I had what my daughter called a "911 bathroom emergency" when she was in kindergarten. 
(Some of the details of chemo are less glamorous than the movies make them out to be.  It isn't all sweaty vomit and grey skin.)
So, it is about time to call it a day.  Only 6 more hours of things to do.  Soccer, getting everyone in bed, work for a couple hours to make up the hours I was stranded on the side of the road or hanging out with half of the medical population of Dallas.

Conclusion:

Who would have thought that the chemo would be the easy part of today?