Tuesday, October 31, 2017

Living Life Fully with Multiple Myeloma by Yelak Biru

Yelak was diagnosed 21 years ago at the age of 25 and is going strong.

https://conquer-magazine.com/issues/2017/vol-3-no-3-june-2017/33-living-life-fully-with-multiple-myeloma


Tuesday, October 24, 2017

From NBC News...Cancer is the biggest killer of America's firefighters.

Blood cancers are becoming almost an epidemic for firefighters. Exposure to chemicals is to blame.

https://www.nbcnews.com/health/cancer/cancer-biggest-killer-america-s-firefighters-n813411

uh oh..neuropathy?

I've been pretty fortunate that in 6 years I haven't had much of an issue with neuropathy.  Berenson has me taking 600 mg of Alpha Lipoic Acid every day that is supposed to combat the nerve issue.  Seems to be working.  Only when I was on Treanda (Bendamustine) did I have some neuropathy. It wasn't painful, instead I had a loss of feeling in my fingers tips. It made it hard to hold things and I definitely couldn't feel textures. It was an odd sensation, but all feeling came back as soon as I went off of treanda.

Since November 2016 I've been on darzalex (daratumamab) and pomalyst (wow, a year, time sure does fly by).  In the past couple of months, I've gotten an occasional stabbed by a needle feeling in my ankles or feet. It's very quick and is not an issue. But in the past few days, I've begun experiencing sharp pain in my pinky fingers when they are exposed to cold water. It stops when my fingers warm up, but when it hits, it is pretty noticeable. This morning, and despite the absurd heat wave we're having,  it was cool while I walked Gracie and I felt some pain in my pinkies simply from the weather.  Sounds like neuropathy to me. If it stays like this, no problem, but if it increases then I'll be a little frustrated.  We shall see.

Today is my quarterly dermatologist visit. My skin is rather vulnerable given my lowered immune system. Hence old damage or viral things that were able to remain dormant, now have a chance flourish. I've had 3 MOHs surgeries for skin cancers on my forehead. I've had two other surgeries in the past 3 years for skin issues.  Recently I was able to clear up warts on my finger tips, but now they are back like crazy.  So we'll see what the dermo says in terms of potential new tactics to fighting them.

Tomorrow I have a bone density test. My bones have been good since diagnosis (kidneys are another story). But, per Dr Phan, years of uninterrupted steroid use can weaken the bones. I don't think I have bone issues, but I can say that recently when I shake a person's hand, I feel like my right hand is being crushed. The bones feel tender and fragile.

The good news is my myeloma numbers remain awesome. Darzalex is doing the trick.

Wednesday, October 18, 2017

Update by the numbers

5 - Hours at my monthly darzalex infusion yesterday. I'm on the monthly schedule and all is good. Numbers are great. I've got a slight cold which is fairly normal for darzalex patients.

15 - In 15 days I'll be at the 6.5 year mark since diagnosis. It's all gravy from this point on.

56 - How old I am now. Hard to believe.

20:18 - Minutes to do a mile on the treadmill on Oct 13

18:55 - Minutes to do a mile on treadmill on Oct. 16

9:00 - Goal for mile. I used to be an avid runner. I gave it up because my body ached too much (pre myeloma) but after a trip to Ocean Beach, San Diego and seeing all the folks running, I'm ready to start up again. I need a goal/target and this is it. I also plan to start riding my bike often. I eventually might get back on a road bike and train for a century. Again, it's important to have goals that serve as motivation.

200 - How much I weigh. This is ridiculous

180 - Weight goal.

2.5 - Months since I retired. It's going great. I feel as good as I have in years. I'm collecting pension. Social security disability kicks in, in January. The LLS had an insurance premium copay assistance program that ended suddenly two weeks ago, right as I working on my application. Funds were depleted. So for now, insurance is out my pocket.

2 - In two years I will qualify for medicare. I'll need to pick up the cost of supplemental costs, but shouldn't be a big deal.

Upcoming So Cal Myeloma Conference & Webinar

There are a couple of educational events coming up.

The IMF has a free webinar on Nov 9 titled  Living Well with Myeloma: Shared Decision Making. Here is the link to register:  
https://register.gotowebinar.com/register/2365873431209187073

The MMRF has a  free Patient Summit on Nov. 18 in Los Angeles. Co-chaired by Dr James Berenson and Dr Amrita Krishnan from City of Hope. Here is the link to register:

https://www.themmrf.org/patient-summits/multiple-myeloma-patient-summit-los-angeles-ca-2017

Also the LLS is having a Light the Night ceremony in the Inland Empire on Oct. 28. You can create a team and fund raise or just attend and be moved by the experience. To learn more follow this link:


http://www.lightthenight.org/events/inland-empire

Sunday, October 8, 2017

Co Pay Assistance Programs

The Leukemia & Lymphoma Society, up until a week ago, had an insurance co-pay program that granted myeloma patients up to $10,000 per year to help with paying insurance premiums. The funds for that program were unexpectedly depleted last week, leaving many folks in a difficult spot.

Here are a couple of links to organizations that have insurance co-pay assistance.


o   Patient Advocate Foundation – Myeloma Co-Pay Assistance for Patients with Medicare, Medicaid, or Military Benefits. Qualified patients may receive up to $10,000 per year.
https://www.copays.org/diseases/multiple-myeloma


o   Healthwell Foundation – Myeloma Co-Pay/Premium Assistance for Patients with Medicare. Qualified patients may receive up to $10,000 per year. 
https://www.healthwellfoundation.org/fund/multiple-myeloma-medicare-access/

Is this swollen

In the never ending quest to fight my crap immune system and ward off warts, my dermatologist is trying all kinds of stuff on my fingers. We...