Wednesday, August 15, 2018

H.R. 1409 Cancer Drug Parity Act

I've created a petition to the House Energy & Commerce Committee's Health Subcommittee, urging passage of HR 1409. Please consider signing.

Tuesday, August 14, 2018

Words or Lack Thereof

Not really a whole lot to report. Last Friday was my monthly darzalex infusion.  I also take 1 mg of pomalyst for 21 days with 7 days off.  We're approaching  two years on this regimen and it continues to work pretty darn well, No light chains, low m spike, kidney function tremendous. We've got my dex dosage down to 12 mg that I get with my infusion. My crashes aren't as bad as they used to be when I got a higher dose, but they still happen. Sunday and Monday I'm moody, irritable, and slightly depressed. Today is Tuesday and I'm all done with that nonsense.  Berenson has me also taking an oral steroid, medrol, at a low dose, every other day and it's pretty innocuous.

Leslie was out of town for a few days, so I had the house to myself. Gracie napped in random cool spots in the house and I binged on 23 hours of Handmaids Tale. I read the book last month and had to see the show. It's powerful and a little frightening. I got home from the doctor after treatment on Friday and hardly left the house until picking Leslie up at the airport. I had food delivered, roamed the house and hardly spoke a word for those few days. Fairly soothing. Oh and let's not forget I did watch the Vikings first preseason game of the year. They looked pretty darn good, although preseason isn't always a realistic gauge. I can guarantee by week 1 of the regular season I'll be in full on this is the Super Bowl season mode. 

Health wise I'm good. Staying fit. Warts are under control. We did x rays on my aching neck and there is really nothing new there. Osteoporosis, some degenerative disc issues. Nothing horrible and I think I've got a handle on it. I still need to add yoga to the mix. There is a beginners class tomorrow night that I'll try and make it to. Been walking a whole lot, so of course my foot aches. I have a follow up with the foot doctor later this week.  Some inserts might be all I need. I'll be 57 in a couple of short months. I can't believe it, although I've said before that this here myeloma has fast forwarded my internal clock. Old age isn't far away. 

I've come to grips with the unknown and now am just focusing on living my best life. Cliche, but true.  Next month I'll be taking an on-line course through the University of Minnesota, which, if you know me, will help fulfill a lifelong obsession/love affair with the State of Minnesota. Started with the Vikings and blew up from there. On my laundry list of oops, you can include not applying to the university when I was looking at schools coming out of high school.  I've got my class choice narrowed down to a history of landscape architecture or a course on renewable energy. They both sound interesting, but I'm not sure which I'll take. Taking both isn't an option. 

I've got a new therapist which is fantastic.  She is definitely helping me with guilt, regrets, identifying who I am, not being bitter and embracing life. Like I've said before, not working has given me a bit too much time to think and I'm feeling like I need to get back to Matt. What is Matt? Hell if I know. 

Going to Lake Tahoe in a few days. I'll see my nephew, do some hiking, gamble a little bit and have a cocktail or two by the pool. Next month it's off to Colorado to see my mom and brother.

I'm still volunteering for the Leukemia and Lymphoma Society on their First Connection program which connects newly diagnosed blood cancer patients to someone who has experience with the same cancer.  It's an awesome program.  I've cruised past 7 years since being diagnosed and just recently experienced survivor's guilt. What the hell? Let's add to that the mix.  I've heard about it. And now it has hit me. The therapist will hear about this tomorrow. Chemobrain is in full force. My ability to focus and recall names or things is hugely impacted. It was funny at first, but now it's pretty annoying. 

Wrapping up Trevor Noah's excellent Born a Crime and moving on to Spying on Whales by Nick Pyenson, which I'm super excited to dive into. 

And that's my update.

Saturday, August 11, 2018

Latest Cycle Underway

And we're off. This month's labs look great. So yesterday was my monthly darzalex infusion. Super busy at Phan's office and I got there later than usual so it was a long day.  Interesting factoid...each darzalex infusion is about $14,000. I get copay assistance from the manufacturer, Janssen, plus my out of pocket from my insurance caps at $2,650 annually.  Also started my 21 days of 1 mg of pomalyst, which is an oral drug and gets shipped to my doctor's office. Factoid two is that a 21 day supply of pomalyst is about $17,000. I am extremely fortunate that via my insurance I am obligated to only pay $40 for the one month supply. I do get copay assistance on this as well from Celgene the manufacturer and end up paying $25/month. Factoid 3 there is not a monthly cap on oral chemo costs to the patient.  More and more chemo drugs are becoming oral. So folks are going bankrupt trying to pay for their oral chemo or they don't take them as prescribed.  There is a languishing bill, H.R. 1409 Cancer Drug Parity Act of 2017, in the House Energy and Commerce Committee, which would make it so there are out of pocket caps for oral drugs just like with the infused drugs. Why it's not moving is anyone's guess. Although it doesn't take a lot of thought to come up with a potential reason.


Friday, August 3, 2018

Trip Down Memory Lane

My very post.

Saturday, May 21, 2011
I should have stretched

On May 2, 2011 I was diagnosed with having Multiple Myeloma. My girlfriend Leslie and my mom were with me when I got the diagnosis. It's a bone marrow cancer that severely impacts my body's ability to produce blood. I'd been real fatigued for about 3 months and tests after tests came up with nothing. Finally I was hospitalized for a blood transfusion, and a bone marrow biopsy identified the problem.

The typical patient for this type of cancer is someone over 65 years and an African American, of which I am neither. I'm 49 and Jewish.

How did I get this cancer? We might never know. But in thinking about things, I wonder if my years of never stretching had something to do with it. All my life I've been pretty active...running, cycling, hking, gym, etc, etc. But I've never been a stretcher. Friends told me it would catch up to me. When I'd go to the gym with my friend Jenni, she'd stretch and I'd just stand there and tell her that Jews don't stretch. My nephew Dillon stretches several times a day and believes that is a real key to good health. Well, for him, good heath is stretching, trigger points, and coconut oil. He was actually visiting when I first started feeling weak. We just assumed I was getting old and out of shape.

People weren't kidding when they said it would catch up to me. I should have listened. Anyhow, this blog is the story of my adventure of battling the disesase. I have already started chemotherapy. And my calves are already smaller from the lack of physical activity. But I am about to start working out again. Doctor says I can do as much as my energy allows me to do. I'm also continuing to work part time.

It's going to be quite a ride.

87 plus 1

87 months and 1 day since my myeloma diagnosis. Let's recognize Mike Tice, one time Vikings tight end and head coach.



Thursday, July 26, 2018

Cheryl Boyce

I've mentioned before that I've met some amazing people in the 7 plus years since I was diagnosed. One of my absolutely favorite people is Cheryl Boyce. She's had myeloma for 20 years. Myeloma, no myeloma, so is the nicest, most caring person you'll ever meet.

Cheryl is on a Stand Up to Cancer myeloma dream team which is looking at precursor conditions that might lead to an early diagnosis. Here's that story. 

And here are a couple of videos with Cheryl:

Cheryl Boyce: Living Well with Multiple Myeloma from Patient Power on Vimeo.

Sunday, July 22, 2018

Ologies Interview with Dr Durie

I've mentioned before that Ologies is one of my favorite podcasts.  Several months ago, they had an interview with Dr Durie, a leading myeloma specialist, who we had a consult with several years ago.

Hematology





Guide to Living with Multiple Myeloma

This is a pretty handy guide. Bill McHugh, who is on the cover, is a pretty inspiring myeloma survivor.

Thursday, July 19, 2018

Getting My Learning On

Don't get me wrong, myeloma and cancer suck. But I will say that since being diagnosed I've had the chance to meet some of the most passionate, caring and inspiring individuals. On Kilimanjaro I was with 5 other patients who are not letting the disease slow them down. And earlier this week I was in Boston to spend time with patients and caregivers who are so smart about the disease and so dedicated to supporting and helping others impacted by myeloma. I also got a chance to tour the facilities of Takeda Oncology where they make velcade and are working on finding new and better treatments.  I used to feel so out of place and not smart when I was with these folks.  But for the first time, I feel like I kind of understand what they're talking about. I've got a ways to go, but I am getting smarter about the disease. I'll try and share some things I learned in a future post.







Friday, July 13, 2018

Infusion Day

My home for the next few hours. Food, Vikings blanket, laptop, phone, Darzalex and dex.


Wednesday, July 11, 2018

Max to the 3rd Power

This is infusion week. It means I did my labs last week and I see Dr Phan today before I can do my darzalex infusion on Friday. I also like to see Berenson the week of infusion. Berenson isn't a requirement but it gives me a level of comfort (and he actually is the architect of all my successful regimens). I see my lab results before I see him so I basically know what he'll say. But it's kind of like a thunder blanket for me. It's calming seeing him. He does take research blood on my visits, so there is value to me going there. I've pondered doing my infusion at his office, but it's a pain in the ass to get to his office and I do love Dr Phan. I can rely on Phan to spend time with me when I have questions. I don't want to give that up.  Also of significance, Berenson's office is at Sunset and Doheny, which is only a mile or so from where I grew up (Wetherly and Gregory Way)  and my favorite bakery (Pico and Doheny). He is also within 2 miles of my favorite deli (Canters on Fairfax) and favorite sports bar (Barney's Beanery (the original) on Santa Monica Blvd near La Cienega). So when I go see Dr B, I try to fit in some combination of these places.



It's about 30 miles door to door from my house to Berenson's office. Depending on traffic it can take anywhere from an hour to 2 hours to make that drive (up the 405 freeway).  Lately I've been leaving my house super early, so I don't have to stress about the traffic and I can get a pre-visit breakfast at Canters or somewhere else. Today I went to an alternative deli, Nate n Al's.  Growing up, across the street from us, lived the son of either Nate or Al. Maybe Al. My sister babysat the young boys and would take them to the deli as part of her babysitting duties. Not a bad gig. The sons eventually took over the deli. It's not as good as Canters, but it's closer to Berenson's office and despite leaving my house at 6:50 today, I was pressed for time so as not to be late for the appointment, I passed Canters. Al's son represented me in the childhood foot injury that may or may not have led to my myeloma (see previous post).



Berenson always has a scribe with him for his examines. Typically it's a younger person who is preparing to go to medical school. For the past 3 years, scribe duties have been covered by two brothers in succession, each of whom is now in medical school. Today he had a new person taking notes. He introduced himself as Max. I said that was my grandfather's name. He asked if it was short for Maxwell or Maximilian. I've never been asked that, I've never asked and I had no idea. Good question though. The scribe is Maximilian, which might be one of the coolest names I've ever heard. I'd make people call me Maximilian if that was name. Berenson noted that his grandfather was also named Max.

My mom adopted a dog many years ago. His name was Dillon when she got him. Same name as one of her grandkids (and of course my nephew) so she changed his name to Max (the dog, not her grandson). Max passed away last year and is really missed. He was a good boy. And for good measure, in college I had a friend named Rachel, but she went by Max. I'm not sure why. Max's mom was a teacher and taught Janet Evans in elementary school. Janet Evans, was a very successful Olympic swimmer and who (it almost goes without saying) is my favorite Olympian of all time. Tied for number two on my favorite Olympian list is Cathy Freeman, a 400 meter sprinter from Australia who is an advocate for aboriginal youth in her country, and Edwin Moses, who dominated the 400 meters hurdles for perhaps 15 years. He was tall and lean, wore glasses, and absolutely smoked everybody on the track. Note that Houston McTear could have been my favorite Olympian if only he had achieved Olympic success. He dominated the 100 yard and 100 meter sprints in the late 1970s and into the early 80s. He was world class at 17 years old. I think injuries and bad luck hindered his career. We are the same age and I remember in high school reading about him.

With regard to my health, my myeloma is doing great. Lights chains are next to nothing. My creatinin is 2.44, which is way out of failure range. I mentioned my foot issue to Berenson and he said that some folks are getting foot fractures if they are taking Xgeva, a monthly bone strengthening shot for myeloma patients who are kidney impacted. I take a relative of Xgeva called Prolia. I get a shot only every six months. He said fractures aren't common with Prolia. X rays at the foot doctor didn't show any fractures, instead they showed just a couple of small pesky spurs. Follow up at the foot doctor is next week and I imagine we'll make a shoe insert that will take pressure off the tender spot on my foot pad where the spurs are.  My neck is a tiny bit sore and Berenson recommends x rays. He thinks, as do I, that it's arthritis resulting from all the steroids I take. When I see Phan later today, I'll run it by him.

I woke up today with a nasty looking hematoma in my left eye. I have no idea where that came from. Berenson says it is nothing and should go away in a couple of weeks. I'll also mention this to Phan. I pondered having the eye doctor look at it. Leslie prefers this but I'm kind of doctored out this week, so I'll give it time to heal. Generally I bruise and bleed super easily. My body is one giant bruise, so it makes sense that my eye might be impacted as well.



I closed out the Berenson visit with a black and white cookie from the Beverlywood Bakery.





Perhaps next doctor visit I'll get to Barneys.

Oh and one last thing, I just finished the book The Bright Hour, about a woman's journey with terminal cancer. Excellent reading and if someone wants it, I'll send it to you. First person to chime in gets it.


H.R. 1409 Cancer Drug Parity Act

I've created a petition to the House Energy & Commerce Committee's Health Subcommittee, urging passage of HR 1409. Please consi...