Friday, March 30, 2012

Great News... I have a MATCH!

I have a sibling donor match!!  Zack is a match!!!  He called me yesterday and told me- I had to ask him twice if he was teasing me, all the while thinking it was too soon to have results, but how could he tease me about something so serious?!   He told me he was a PERFECT match, 6 for 6, and I burst into tears!  Heavy, hiccuping tears!  I think I scared Adam and my friend Amanda when they saw me reaching for a tissue with tears flowing down my face, but I quickly told them it was good news!  It feels so wonderful to hear good news, when I'm so used to steeling myself for the bad!  Adam and I celebrated with some bubbly (grape cider in our new "beer" glasses from Adam's trip to see Martha Stewart Live... but that's another post) and we splurged on Chipotle salads for dinner.  What a good night!

That's me and Zack on the left, Jake and Jesse on the right.  Jake was a 3/6 match, and Jesse was a 5/6 match.  I guess Zack is the best brother! :)
I had started this post two weeks ago and it was titled "Bone Marrow Transplant Consultation."  I couldn't get through writing it!  I hated the consultation, there were too many contingencies- if this and if that and you want to be in this small percentage but not in this other small percentage...  I hate the numbers!   But at the same time, I HAVE to ask for them, I felt so blind going into the Auto transplant last time, not knowing until AFTER that I only had a 50% chance of success.  Lost the coin toss on that one!

The good news about the consultation:  I have a sibling match, which means I will be participating in a sibling clinical trial/study (extremely detailed explanation here) with the main objective being trying to reduce problems with Graft Versus Host Disease (GVHD, where the recipient's body doesn't recognize the donor cells and starts attacking them) by giving me not only Zack's bone marrow cells, but also an infusion of his lymphocyte cells two weeks after transplant.  Currently they have about 40 people doing the trial with good-ish results.  So far, only 5 or 6 have relapsed, and 1 has died, but I was told the death happened to a person who was already in ICU and not doing very well at all.  They want to do a "mini-transplant" which just means they use a reduced dose of chemo to kill off all of my cells so that I hopefully have fewer long-lasting side effects.

All things considered, this trial is very promising and one I desperately wanted to get excited about, but at the time we were told about it I didn't know if I even HAD a match, so I didn't dwell too long on the idea!  But now we are REALLY excited, and happy to be here at Hackensack doing the transplant at such an amazing location!  Adam and I tossed around the idea of going to Utah for a transplant, if in the end I didn't have a brother who was a match, mostly because survival rates go down so much without a perfect match.  Here's one of those numbers I didn't like knowing until I found out about Zack:  Odds of finding an unrelated perfect donor match:  42 in 1 billion!  Crazy huh?  And 2 years post transplant 85% of sibling recipients were still living, opposed to 45% of non-sibling donor recipients... I like 85% 100% better!  :)

More numbers:  The chance of a standard long-term (5 years) remission after a bone marrow transplant is 30%.  Not even a coin toss on this one.  Of course, that number depends on a lot of factors like my relative health at transplant time (considered good), level of cancer (will it be in remission when the transplant goes down?), and my relative youth is helpful too.  There is a 7-10% chance of dying from transplant related complications, that number goes up considerably with a non-related donor.  SO, I need to be in the small 30%, but not the smaller 10%, and hopefully not the largest 60%!!  The 60% that relapse after transplant continue with different types of drugs and treatment to try to beat the cancer but obviously there isn't as much hope for an actual cure.

I've been very open with the doctors about considering treatment in Utah.  They've been understanding but have pushed for staying here.   I liked how my transplant doc, Dr. Donato, said I had everything going for me here (and she listed a few things for me, including being in some of the world's best treatment programs) with the only drawback being not having family close by to help me through the rough patches.  So she asked if I had a strong support group here that I've made since living in NJ for two years...  And that made up my mind.  I am surrounded by some of the best friends and support group I could hope for.  And she was right, I have the best treatment available to me, just 30 minutes away.  Hackensack does over 300 transplants a year, about 1/2 of which are Allogeneic bone marrow transplants.  They are one of the largest around- by comparison, LDS hospital in Utah has done only 600 transplants since their program started in 1978.  Makes me happy to be here in such a prestigious area for health care with some of the world's best doctors and programs.  I can't help but be grateful for the move across the country, even though it means I'm not close to family when I'd like nothing better as we go through all of this.

I am so happy Zack will be donating his immune system to me!  It also means he will be able to come out here to NJ for around 3 weeks in May!   If my scans in April come back clear and the new chemo has done it's job so that I hear that now infamous word, "remission,"  then we'll get going on the transplant in May.  I may have to get one week of chemo before the BIG chemo of the transplant, not sure why it was they told me about the extra one we weren't expecting... I'll ask Adam, he will probably remember!  But that's the plan.  Now let's see how much of this follows accordingly!

Zack and his girlfriend Katie

Monday, March 19, 2012

Cycle 2 Update

It's Monday after Adcetris treatment number 2 on Thursday.  Treatment last week went perfectly, I had a great time with Taryl and felt great the evening of, just a little tired.  I was hopeful I'd get through the weekend without many side effects!  Didn't quite work out that way...

On Friday I was completely wiped out- slept until 9, took a nap, and went to bed about 9.  I was pretty tired and very grateful for Taryl's help with the kids.  Saturday was a nearly normal energy day- Taryl and I went to the World Trade Center and did a lot of walking in the city- but I did feel like I had some brain fog going on and crashed by about 8, though I didn't go to bed until later (hmmm... wonder if I should have listened to my dear mother and rested? :)

Sunday and today have been okay... it's hard for me to think of the right word- "okay" isn't quite right... I've been able to DO things- like go to church (though I left early), attend a BBQ in our back yard (though I was bothered by the smells), go to lunch in Hoboken (but I was queasy on the drive in).  I just haven't been feeling right.  Definite brain fog, fatigue, and a lot of almost queasiness.  From chemo session one I did have some stomach upset for a day or two, and I've been really feeling it this time around.  I'm surprised because I have a very strong stomach normally and hardly ever feel nauseated, even when I was pregnant or going through treatment from cancer the first or the second time.  I read the list of side effects from the Adcetris pamphlet and just assumed I would experience the least amount since that's usually the case.  So I have been "okay," and all things considered I'm still happy with the treatment!

Thursday, March 15, 2012

Adcetris Chemo Treatment #2!!

2 down, one more to go, and then we re-scan!!

The Chemo Room
Today Taryl and I went to my second cycle of Adcetris (aka Brentuximab Vedotin aka SGN 35).   I am SO happy to have a friend here to go with me!  Taryl flew out for her spring break to spend a week with me and help me out with the chemo.  It was a really fun day, all things considered, we had a great time!  

John Theurer Cancer Center
Finger Prick CBC 
The nurse actually MILKS my finger for blood, to fill up the little tube from the finger prick.  Odd feeling really. 
We saw Dr. Goy on time today (hurray!) and went directly in to get chemo afterward.  I had a good time chatting with Allison, the nurse, and goofing around with Taryl.  During the 1/2 hour administration of chemo I was on the phone with an old friend, Natalie, and before I knew it, the chemo was OVER!  I didn't feel a THING!!  Nice huh?

Nurse Allison putting in the IV, Taryl trying not to pass out as she took my pic :)

Before getting Adcetris I did get some pre-meds:  Tylenol, Zofran (anti-nausea), and Hydrocortisone (a steroid to help prevent allergic reactions from the drug that the docs have seen a higher occurrence of in 2nd dose Adcetris).  The only thing I DID recognize was an increase of energy from the steroid.  

Just as I was getting ready to leave I saw an old chemo roomie named Elaine- it was really neat to catch up on our statuses and stories after not having seen each other since November 2010 (she remembered it had been my birthday just as I was leaving the hospital from chemo).  She is doing well enough now, has to get blood transfusions once a month but the cancer is at bay.  

Surprisingly, I was not necessarily the youngest person receiving treatment today!  There were two other young men getting treatment that looked to be around my age.  It was almost a shock to see younger people there, when I'm used to being the one getting pitying looks from the nurse staff and older patients receiving treatment.  

We made it out of the hospital a little after noon- AMAZING!!  I was so excited to get out of there in good time and feeling well!  Taryl and I made my traditional stop at Arby's to grab a roast beef sandwich after chemo- it's a tradition, both before the birth of each of my children (3 sandwiches each time then...) and after every chemo as I've driven home (I've not always eaten, but Adam has :)  

How can we NOT stop at a place with the slogan, "Good Mood Food" after having chemo??  

Then THIS happened, and I still laugh, just writing about it!!!

HAHAHAHAHAHAHAHA!!!  I love you Taryl!!! :)  Even though you are a slob... :))))
At least I tried to help her clean it up right??
All things considered, it was a great day for chemo!! 

Tuesday, March 6, 2012

1 Week Post-Adcetris

I am really late in making my one week report on the chemo effects!  I went in to see the docs last Thursday and I had a goal to write up a post that night and have it published no later than Friday afternoon...  I can't even tell you why it didn't work out!  Except maybe that I seem to be having a little chemo-brain side effect going on? 

The appointment with Doc Mato and Mary went really well.  I love going in to see them and seeing smiles on their faces and hearing genuine care and concern!  Dr. Mato even took a pic with his phone for me since I forgot to take my camera-

Mato, Mary, and Me- My favorites!
The check up was just to see how my blood levels were doing a week after chemo and to make sure I was handling the new drug well enough.  I was all set to leave when I remembered to ask about the results of my blood test for the JC/PML virus antibodies (remember that brain-deteriorating virus that Adcetris has been found to reactivate in 3 of the drug recipients?)  WELL,  Mato and Mary came walking into the exam room with worried looks on their faces... turns out I DO have the antibodies and have been exposed to the virus, which means I'm at risk.   My reaction...?  Laughing!!  Seriously?  Do I really have to deal with that worry on top of everything else?!  Ha!  I got a kick out of seeing Mato and Mary's faces too- they probably thought I was going to break down crying (it's been known to happen in front of them, but can you blame me with the news they've occasionally had to give me?)  I did receive some comfort- Adcetris has worked for thousands of patients (who weren't tested for the virus antibodies) without any serious adverse affects and as long as my immune system is relatively strong I should be fine.  No brain eating virus for me! :)

Aside from that little hiccup I have been doing quite well!  The side effects I have had from Adcetris/Brentuximab Vedotin include the increased mind fog, fatigue, aching body for a few days, about two days of stomach cramps and a couple surprise trips to the restroom.  From what I've researched online I should continue to experience side effects most strongly the week after chemo, but not necessarily the same side effects each time (other than the continued fatigue and mind fog).  The following two weeks should be pretty calm before heading in for the next treatment.  I've read so many different accounts of how people feel after this drug that I don't even want to try and plan for the next chemo!  It seems to be different for everyone!  However, the one thing it does appear to have in common across the board is the "lighter" less severe effects when compared with traditional chemo.  Yay!!  It does seem odd though that I'm in a more serious position this 3rd time around but the treatment regimen is so much easier for my body to handle!

Meanwhile, life has been crazy busy and continues to feel like it's flying by.  Last weekend was full of watching and playing with kids, helping people move, trying to unpack my own home, a Primary Pajama party, church, and visitors, with a little bit of reading and down time thrown in there somewhere.  This next weekend won't be any less crazy than the last, but we enjoy staying busy when we're spending time together as a family.  I'm also really looking forward to my BFF Taryl coming out on Monday for a week to help me with the next chemo on the 15th.  I've never been so excited to go sit and wait at the hospital for chemo, we'll have a great time!

Yeah that's right- we are all three in footie pajamas!!