M is for Myeloma is a place to chronicle my family's newest 'adventure' living with multiple myeloma to keep family and friends updated and also hopefully help others living with the disease.

Saturday, August 13, 2011

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!

Thursday, August 11, 2011

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

Wednesday, August 10, 2011

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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Monday, August 8, 2011

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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Saturday, August 6, 2011

Gave my APN a little scare yesterday

Just doing my job, keeping her on her toes!

Seriously, I'm 100% fine, but I guess she wasn't really listening when I told her blood pressure was going to get low. I had already caused the blood pressure machine to beep it's warning the day before (right on schedule as I had already told them to order fluids for me that day). The liter of fluids helped immensely and I went on my way. Yesterday I was actually feeling a little better but the blood pressure machine again showed me dangerously low, and my pulse was racing to compensate. 166! Yowza. This got my APNs attention real fast. I tried to assure her this was pretty standard for me and it would come down once I got the fluids, but she still seemed quite worried. It's her job to be worried so I understand. Luckily things did settle down, but it not enough for me to escape taking an infusion pump of fluids home last night. Better safe than passed out! The funny thing is though that I never feel dizzy even when my BP is a ridiculous 86/47.

Other than the blood pressure issues, I'm feeling pretty good. No major issues and the chemo fog has lifted. Just waiting for my counts to drop and staying out of the heat. I'm glad my taste buds have normalized a little because for some reason it was sweet things I couldn't tolerate this time...and a pint of Ben an Jerry's was impatiently waiting for me in the freezer. Red Velvet Cake = heaven.

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Wednesday, August 3, 2011

Something is backwards here.

It's been more than 24 hours since my last dex dose, yet here I am wide awake at 1 am! I didn't have any trouble sleeping while I was on the dex. Go figure!

So here I sit at 1 am eating a bean burrito (thankful for a good appetite!). It was another long trip to the clinic today, nothing exciting just had to wait for a potassium infuser. Wasn't a bad day to stay inside though, the temperature topped out at a record breaking 114 degrees here in Little Rock! You know it's bad when even the locals are complaining.

Now that the bag is off and the dex and thalidomide are done, I've just got a couple of doses of Velcade left to go for this round. Otherwise it's just waiting for my counts to drop and recover before I can get on home. My dad is here for another couple of days then my brother flies in from Boston. I'm sure my dad is getting bored of watching Man vs. Food and Iron Chef while I snooze, but he's been a good sport so far.

Off to try to sleep, glad I've got my trusty sheep to count...thanks Beth!

Tuesday, August 2, 2011

Last night with my buddy

The bag comes off tomorrow! So far feeling ok, just have that foggy groggy feeling and my taste buds are all wonky. My appetite is still strong thanks to the dex, so we'll see how that goes over the next couple of days after I "come down". I've just been resting and sleeping a lot, not such a bad way to pass the time when it's over 100 degrees outside! My dad tells me 109 expected tomorrow. Oy.

Had a long trip to the clinic today, waited 2 hours just in the waiting room. Pretty quick once we got back though thanks to Teresa, who is one of the sweet transplant nurses. I wasn't expecting to get back to the transplant section, but she told me they take all patients back there when transplants are slow. I didn't miss the creamed corn smell, that's for sure!

So tomorrow I come off the bag then I expect to feel crappy for a few days as I drop the water weight I've gained from the dex. I hate being puffy and red, but c off the dex is too much fun either. I already warned my APN she better order up some fluids for me!

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