Sunday, February 26, 2012

Adcetris Chemo Treatment #1!

I had my first Adcetris/Brentuximab treatment on Thursday!  I was both excited and nervous for the experience, not sure of what to expect.  It turns out the worst parts of the whole day were the 3 1/2 hours of waiting and the nurse hitting a nerve in my hand when she put in the IV!  It felt like a knife sawing into my thumb... yes, it really hurt that bad, though I'm sure Adam and the nurse thought I was being a baby about a little IV :)  The chemo itself was completely uneventful- thankfully I didn't feel a thing!  I did get tired, but I think that was from the premed Zofran (anti-nausea).

Before getting the chemo I needed to visit with the doc- I had to wait nearly 2 hours before seeing him for only 2 minutes, and had to stop him from flying out the door before he answered my questions!  Seriously, I'm getting used to it, it's now more of a joke when I get a rough 15 second physical exam (the stethoscope is literally over my heart for ONE heartbeat before it's taken off) and I'm pleasantly surprised if I get in and out of a visit with Dr. Goy in under 2 hours! :)  He IS supposed to be the best, and he is incredibly busy, so I'll stick with him and just be sure to keep a sense of humor about it.

After seeing the doc I visited with one of the case workers for the bone marrow transplant.  She discussed how my brother's bone marrow will be tested- each brother will be sent a swab kit where they swab their cheeks with big Q-tips and send them back to a lab.  Pretty easy huh?  Each of my three brothers has only a 25% chance of being a match, so let's pray that at least one of them is in that percentage!  And if they're not... well, we'll deal with that IF we have to!

First Chemo!  Forgive the poor quality, we forgot a camera so we only got a shot from Adam's work Ipad.    I am really trying to show my scar there and not trying to flash anyone... Sorry it kind of looks that way at first glance! :)  Isn't that a great looking scar though??  It's only 2 weeks old!  Thanks to Dr. Elmann for putting in the extra effort to make it look nice!  
I went into the infusion room and waited another 1 1/2 hours for the chemo to be mixed and brought up. After an hour of waiting and sharing nearly a full box of Saltine crackers with Adam the nurse told us the "chemo order scan didn't work" so we had to wait for the order to be re-scanned and sent up to the room.  I was a little upset, mostly because this is not the first time that's happened- though last time it happened I was waiting for blood and about to miss Mykelle's Joy School Christmas pageant, it brought back a lot of bad memories of that day.  However, I also have a really good memory of that visit- do you remember Mary, the doc's assistant (I think she's officially a nurse practitioner, but I'm not sure) who literally RAN to get the blood for me so I'd make it on time?  I will love her forever for that, she always goes above and beyond to make me feel good about my treatment and even called me at home (with Dr. Mato, another fave of mine) to check on me after this last diagnosis.  There are a few people at the John Theurer Cancer Center I have been really impressed with who help reaffirm my choice to trust my health to them.

As far as post-chemo side effects, I've been feeling great!  Friday and Saturday were virtually normal days, though I tried to take it easy (aside from the kid's music class, a birthday party, moving, painting, cleaning, and trying to finish a blog post...)  I have had some mind fuzziness, but that is often hit or miss due to the transplant last year, so I'm not sure how much of that is connected with the new chemo.  Today I've felt really tired, I slept in 2 hours which I almost never am able to do, and have continued to feel tired all day.  I know the side effects are different for everyone, and they do have a somewhat cumulative effect, but I have been worried that NOT feeling side effects means the drug isn't working.  I don't know if that thought holds any water but it still concerns me.  Adam suggested I'll hopefully start feeling crappy and then I can be happy.   Maybe I shouldn't be complaining right?  Anyhow we won't know whether the drug is working or not until the scans in April so I need to stop worrying!

I have a check-up this week and will have a couple weeks off until the next treatment on March 15.  In the meantime, Adam is turning the big 8 on Wednesday (leap year baby!) so we'll be celebrating his eighth ever birthday in 32 years and I'm hoping to get my new house unpacked and made into a home to be ready for visitors!  Aunt Taryl is coming on the 12th and Adam's mother and sister and her husband are coming on the 17th.  Maybe I should just leave the unpacking for them to help with... :)


  1. Hope each chemo treatment goes as well as this one, and that they Work!
    To bad you can't charge the doc's for the time they keep you waiting. Oh well, main thing is to have good medical care that you have faith in.

  2. Hey you! You move to Jersey and don't even tell me!? Last I knew it was a no-go. I've been blog stalking you and I'm so happy you have seen so much of the East coast! I don't even think I've been everywhere you have and I've been here a total of 9 years! Tess, I don't know what to say, but I will say this: if there is EVER ANYTHING I can possibly do, just know I will be there for you. I hope all is well. I admire your mothering so much! You give me something to strive for! Much Love

  3. I am glad you get to be on a chemo med with less intense side effects and schedule this time around. I was so glad when my mom's turned out how it did. And it was still totally effective. Thanks for the updates, there are lots of us thinking about you who keep quiet in the comments. Know we are here and that you are in our prayers.

  4. Raegan! I would love to hear from you and see what you've been up to and what advice you have for me on the East coast! In 9 years I'm sure you've learned a lot! Thank you SO much for your support, it is so great to have such wonderful friends to count on!

    Andrea- I'm so happy to get a message from you! And so grateful for the prayers and silent support :) Thank you!


  5. Good luck with the treatment. I'm four days behind you, I started my first cycle of Acetris on Monday this week. I'll be following your posts keenly! ...Ron