Cure Talk on Relapsed Myeloma

Tuesday May 31 at 2 pm west coast time/5 pm east coast time, there is a Cure Talk Discussion about relapsed myeloma:
Recent introduction of new therapies has significantly improved outcomes for patients diagnosed with multiple myeloma. However, cures remain rare in myeloma and most people may eventually relapse. If we can better understand how and why myeloma grows back, there is hope that relapse can be prevented and thereby eventually improve the long-term outlook for myeloma patients. The myeloma panel is talking to Dr. William Matsui of Johns Hopkins University School of Medicine on why relapses occur after several years of remission and how they can be prevented.

The link to join this discussion is: http://www.curetalks.com/event/rsvp/Preventing-Relapse-in-Multiple-Myeloma/252/?upcoming=yes

Wow

5 plus years. Wow. Non stop chemo.  5 years with question mark over my head. Talk about physical and mental challenge. Crazy. 

One size does not fit all

Myeloma is a very unique cancer and manifests itself differently in most people. As such treatment is tricky and there is no normal and no right way vs wrong way.  Having a myeloma specialist on your team is one definite rule. 

And Kiliminjaro training begins...

Latest Post from Bill McHugh

Bill is a myeloma friend. He's doing well and has an awesome attitude about living with the disease. Last year he climbed the Empire State Building stairs to raise funds for the MMRF. He doesn't necessarily post a lot on his blog but when he does, it's always great stuff. I can relate to his approach and attitude.

His latest is worth reading. Take a look:
Stop Being Selfish

Kilimanjaro..Time to Get Serious

One of the challenges with myeloma is that I'm almost always walking around with a lowered immune system. I need to be extra careful to stay away from people who are sick and other germs sources. Admittedly I can get a bit lackadaisical with this. But when I'm hit with two months of being sick and worried about pneumonia, as I was earlier this year, I get serious again. Being immune compromised also means I am susceptible to the activation of normally dormant viruses in my body. Two years I had a surgery to remove viral warts that were out of control. By far the recovery from this surgery was the most painful thing I have ever experienced. Ever!

This week I had a repeat of the surgery. I've been dreading it. The first time I had this surgery I was out of commission for three weeks. I guess we caught them early this time, because at 3 days after surgery, I'm feeling pretty darn good. It's been a totally different experience.

I've slowly been starting training for Kilimanjaro. Cardio, walks, hikes. But I wasn't engaged 100% in the training because I knew I had the surgery and recovery ahead of me. But now that recovery is almost behind me, training starts in earnest next week.  Beast mode. We've got a team training hike in Colorado in July. I'm looking forward to meeting my fellow trekkers. One of the team members lives here in Long Beach and we met a couple of weeks ago and did some hills in nearby Signal Hill. All the other team members are spread out across the country. There are 15 of us. 6 are patients. I'm almost halfway to my fund raising goal of $10,000. I'd like to blow past that number, which I think is totally doable.

This week is also my off week from chemo. Last week was day 1 of cycle 20 of maintenance. Last week I also had to make a visit to the dermatologist to freeze off a bunch of pre-cancerous spots on my face. Sensitivity to sun and susceptibility to skin cancer is a side effect of my treatment. I always need a hat when I'm outside and I'm thinking I need to get stylish with my hat selection. Embrace the lid.

This past week I was promoted at work. I'm now the manager of land use planning at the Port of Long Beach. I've said it before, I'm proud of my success at work over the past five years (since diagnosis). It's a big deal. I take pride in my kicking ass. Having said this, work can be a challenge, especially during treatment week, when my energy and mood are roller coastering. And I'm still needing greater meaning in my existence. In my interview I was asked about my presentation style and if I chose it or did it choose me. Interesting question. My answer was a) conversational and b) it chose me. And I realized that is how I feel about my cancer and life going forward. I sure didn't choose it, but I have to work with what has been dealt me. I must make some plans and define goals to keep moving forward. Again...beast mode.

And that's it. Nap time.

Cure Talk May 19

Cancer drugs cost more than $100,000 per year and continue to increase. Medicare has proposed major changes to Medicare Part B in an attempt to slow the explosion in healthcare expenditures. In addition, a recent “report” by a group called ICER (Institute for Clinical and Economic Review) has issued a 139 page “DRAFT” of a report attempting to evaluate Multiple Myeloma, its treatment protocols, drug cost comparisons and QALY (Quality-Adjusted Life Year). The results of ICER’s research may have serious implications as their recommendations are trusted and used by payers and may be influencing CMS (Center for Medicare and Medicaid Services) decision-making. Dr. Rajkumar of Mayo Clinic is on CureTalks to help educate doctors, patients, and the general public on what these programs are and how they might affect the doctor patient relationship.

http://www.curetalks.com/event/rsvp/What-you-need-to-know-about-the-ICER-report-and-its-implication-on-insurance-coverage-and-treatment-options-for-myeloma-patients-/253/?upcoming=yes

The Great American Bucket List: 50 Things to Do in the US Before You Die

I'm not sure I agree with everything on this list, but it's a good starting place to get your adventure juices flowing.


https://www.thrillist.com/travel/nation/the-great-american-bucket-list-50-things-you-must-do-in-the-us-before-you-die

5, Five, V, Cinco

May 2. Today. Five years since my cancer/multiple myeloma diagnosis. What a fricking journey and learning experience. I'm still here, still strong, still kicking. Wow. That's about all I can say. Tonight I'll pause to evaluate and plan.