Wow, has it really been a whole month?!

It doesn't seem possible, but I will own up to procrastinating...and I won't be offended if you want to call me a slacker!

I was indeed released from MIRTs daily scrutiny back on August 15th. Alex and I packed up to head out for the loooong drive home the next morning since we wouldn't be needing the car in Little Rock anymore. We stopped in Louisville to spend the night at my SIL and BILs house. Louisville is about halfway so it made a good stopping point and gave us a chance to visit, meet our nephew Jayden (who was born back in March during my first round of treatment), and see their brand new house. My BIL was out of town for work, but it was nice to visit with Laura, Jenna, and Jayden. Here is a pic of me with my niece and nephew.

We made it home late on the 17th and it was great to be home and see the kids. There is nothing like sleeping in your own bed and showering in your own shower! I was feeling pretty good (better than after the transplants) but it still took a while to get my strength back. It proved to be a busy couple of weeks though, we actually had a lot of excitement in Maryland! On August 23rd we had the quite unexpected 'pleasure' of experiencing the 5.9 magnitude earthquake centered in Virginia. This was definitely wacky! We had experienced a teeny tiny earthquake the previous year and I felt that one...it felt like a truck rumbled past the house. Just one quick shake and I didn't even know it was an earthquake until later in the day. This recent one though, the whole room was shaking and it lasted for 20-30 seconds...kind of a wild ride! It was the big news for a couple of days...until it became clear that hurricane Irene was headed our way! She showed up that weekend late Saturday overnight into Sunday. Thankfully we didn't have any damage or trees down, and our power stayed on, but others in the area weren't so lucky. Alex's mom had three inches of water in her basement and some people were without power for a week! She even had the nerve to disrupt the first day of kindergarten for Olivia!!

That's right folks, my baby was starting kindergarten! It had a been a main goal of mine to be done with the intensive part of treatment in time to send her off to kindergarten, and I'm so thankful I was able to accomplish that. Through all the geological and weather related excitement we were also making sure we everything prepared for the big day! This meant making sure we had everything in the list of required supplies, making sure all the required paperwork was in place, and making sure we had some non-stained cute back to school clothes!

Thanks to Irene things got pushed back a few days, but once the day arrived things couldn't have gone better. I was very VERY proud of my girl. She handled it like a champ...no tears, no fuss, no problem at all! Here are a couple of pics of the first day.

Labor day weekend we had two birthday parties on Friday and Saturday evenings, which gave us a little chance to catch up with some friends. Then we mostly took it easy on Sunday. Labor day itself was an exciting day though...my other baby turned three! He's very excited to be a big three year old! We had cake and ice cream for him that evening, but the real party is still in the works. It's crazy that my baby is three, but I have to say that being done with diapers is SPECTACULAR! Here are a couple of pics of my handsome devil....one with a blue ice cream tongue, and one obviously quite pleased with his new Star Wars toy.

After all that add another whole week of drenching rain in Maryland (thanks to tropical storm Lee), and that brings up almost up to speed.

I'm actually back in Little Rock as I type, waiting to catch a flight home later today. I flew in on Sunday to get started with restaging for a Tuesday appointment with Dr. B. I've had the pleasure of staying with my friends M and J, J just finished up his consolidation and was discharged Tuesday. I am SO very grateful that they have opened their hearts and their home to me and my family. Meeting them has truly been a gift!

Restaging went fabulously, that is if you can ever really call 3+ hours in MRIs and PET scanners topped off with a large needle being jammed into to your bone fabulous! All good news at the appointment, still in complete remission! I had been scheduled for a vertebroplasty for a lesion on my T12 vertebra, but Dr. B wanted to wait to see if it would heal up on it's own with a few months of Zometa treatment. So I'm headed back with my orders to start maintenance therapy...Revlimid daily for 21 days, and dex and Velcade once a week. This will go on for 3 years. Yes you read that right, THREE YEARS! I'm hoping the side effects will be minimal, but only time will tell. The great news is that I've been approved to get my Velcade as a subcutaneous injection. Velcade is normally given I.V., which requires either getting an I.V. placed weekly, or getting a venous access port implanted. I had decided I would go with getting a port placed (it's kind of like a central line that is implanted entirely under the skin), to avoid the damage that can happen from frequent I.V. placement and caustic drug infusion. Then I started hearing that some centers had started giving Velcade as a subcutaneous injection after a large study showed it was just as effective and resulted in fewer side effects (namely peripheral neuropathy, which is annoying at least and extremely painful at worst). Indeed my home center was moving to all subcutaneous for Velcade so I brought this up at my appointment here in Arkansas and was approved to go that route! Hopefully this won't start a riot among other MIRT patients! So I happily canceled both the vertebroplasty (where they inject cement in the lesion to prevent vertebral fracture) and port placement. Now I'm relaxing for the day before heading to the airport to catch a flight home this evening. M and J had to go to Memphis for the morning so I'm here keeping their sweet boxer, Lucy, company. She's happily snoring on the couch.

Line is out, waiting for discharge!

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Bye bye mask!

Hopefully we will NOT meet again anytime soon!

My white count was 2.47 today, a nice big jump up from yesterday and enough to leave the masks behind. I can't say I will miss them, all the ones I tried were way to big for my tiny elf head and I can't count the times I tried to drink something forgetting I was wearing it. Doh!

My platelets were up again too (41) which means I'm definitely making platelets. Self sustained platelets and recovered white count are the two things they look for in order to discharge, and Caleb said today that he expects to discharge me Monday! It looks like I'll avoid needing any platelet infusions this time. They normally give them when you get below 20, but they will also give them before central line removal if you are still below 50 so you will clot properly after they yank it. I think I'll get to 50 by Monday.

The only glitch right now is my CRP (the inflammation marker that can signal infection). It's been creeping up over the past few days. I've also had some nasal congestion. The CRP level is in the ballpark that signals potential viral infection so they did a nasal swab today. It can also rise just as a reaction to the growth factor shots and increasing white cell count, so it could be nothing. I don't have any other symptoms so no one seems very concerned about it. Caleb (Dr. B's PA-I love when he's in the infusion clinic on the weekends!) and I discussed the possibility of allergies today. My runny nose started the morning after storms came through and is worse when I am outside. He said his allergies have been acting up since the rain started too.

I dropped my brother off at the airport today and Alex flies in tomorrow. It was nice to spend the week with my brother. We don't live in the same city and this was the most time we've spent together in YEARS! I'm glad he was able to come down and chauffeur me around. It makes me miss living closer for sure.

Alex and I will be gearing up to make the drive back to MD. If all goes smoothly we'll be heading out Tuesday morning and will be home by Wednesday night. It's been a long hard 6 months traveling back and forth and I'm glad the period of extended stays in AR will be behind us soon. After this I'll be starting maintenance, which I can do at home, and I'll have to come back a few times a year for 3-4 days at a time for restaging/monitoring.

I'll be home just in time to see my daughter off to her first day of kindergarten, and celebrate my son's 3rd birthday!

White count is RISING!

Up to 0.35 from 0.15 yesterday! So it seems I didn't completely bottom out this time, a few people had said some people don't go as low with consolidation since it's lower doses. My platelets were down slightly compared to yesterday but there hasn't been a big change over the past few days, so hopefully we'll see an uptick there by tomorrow. I just need to avoid catching any nasties and I should be ready for discharge by Monday or Tuesday!

It rained here all day today, which has actually been awesome because it's nice and cool. It's cooler right now at 75 degrees than it was getting even as the overnight low just last week. We are thinking of catching a movie tonight.

Exciting results in CLL using receptor modified T cells

Penn Medicine News: Genetically Modified "Serial Killer" T Cells Obliterate Tumors in Patients with Chronic Lymphocytic Leukemia, Penn Researchers Report

Came across this through the CNN site. This group completed a very small trial to study the safety of their approach, and found an unexpectedly potent clinical response. Their approach is somewhat similar in concept to the natural killer cell trials they are doing here at MIRT, but this approach is more targeted. In the natural killer cell trials they rely on natural ability of those cells to generically attack and destroy cancer cells. The cells are expanded over levels that would normally be found in the body and infused back in to the patient. The Penn group on the other hand have taken T cells from the patient and genetically modified them to respond very specifically to an antigen found on the surface of CLL cancer cells. They infused the cells back in and found they actually expanded and persisted for months. It's making a splash because they saw a very dramatic clinical response in one of the patients (complete remission of very advanced disease), and also because the cells expanded in the patient and stuck around for months. Apparently a few other groups have tried similar things int he past and saw only modest clinical effect and the cells were rapidly lost from the body. This group tweaked things a little and may have hit pay dirt, only time and more testing will tell.

This same approach could potentially be used for other cancers (including myeloma) by changing the antigen that is targeted.

Here is the link to the actual NEJM article
http://www.nejm.org/doi/full/10.1056/NEJMoa1103849?query=featured_home#t=articleTop

Counts are dropping, otherwise business as usual

My white count finally dropped under 2 on Monday. 0.9 Monday, 0.33 Tuesday, 0.15 today. My platelets were 40 yesterday and 37 today, so lower but not a big drop between the days. That might signal they have stabilized, which would be good. I'm day 7 post chemo today and pretty much things are going as anticipated. My blood pressure has been much better the past couple of days so no more getting fluids every day. It's just labs, growth factor shots, and avoiding germs until my counts recover. I see the doctor on Friday, and if everything goes well I'm hoping to be ready for discharge by Monday or Tuesday.

My brother is here with me now. My Dad flew out Sunday just in time to miss some rain and slightly cooler temperatures. We've mostly just been laying low other than going to the clinic. Today though since it was cloudy and a little cooler we went down to the River Market area and also checked out the Clinton Library. It wasn' crowded at all so not much worry about germs. Pretty neat to see the library, it's a very cool building.

Last night I made my final attempt to try to find decent pizza in this town. Now, we did like the brick oven place (ZaZa), but we were still looking for good regular style pizza. Damgoode Pies was the last place on the list of places everyone tells you to go, so we decided to try it. My Dad had even just sent a message that he saw a recommendation for it Food Network Magazine. After we picked it up we saw it looked pretty promising, but once again we were pretty disappointed. It was decent but nothing special. The crust was better than at the other recommended places we had tried, but the sauce was pretty bad. So from now on in Little Rock it will be the brick oven place or bust!

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Still waiting for my white count to drop

The nurses are very anxious to start giving me growth factor shots, every day they bring all the supplies over in anticipation...but so far my white count has stayed above 2. My platelets were down pretty significantly yesterday, but my white count is still holding fast around 3. I guess we'll see what today brings! Feeling pretty good otherwise and my chemistries have all been good, just getting a liter of fluids every day to help with the blood pressure.

Yesterday some thunderstorms rolled through (we missed the rain being in the clinic) but the storms amazingly cooled things off a little for the evening. It was actually nice out and there was a nice breeze. I'm sure it's back to 100 today, but it was a nice little taste of normal weather!

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