Happy Hanukkah

We had a nice dinner of latkes, roast chicken, nut loaf( from thanksgiving) with sour cream and the last jar of my homemade applesauce from last fall.

We lit the candle ( one, for the first night). Then we each had a little gift of cash, and B got us 1 lottery ticket. I never win anything so… but he actually recouped $6.00. Still, it was fun to chat and share this time with Sachi and Zephyr and Barclay. My family.

Today I’m doing the Flylady bedroom zone. It’s pretty much done as I change the sheets on Sundays. But I will dust and tidy.

Other than that, just a nice quiet day home.

Yesterday I did make another batch of homemade peanut brittle. I had bought a candy thermometer and it was a great $10 buy as right on it is the temperatures for hard brittle etc. Well worth it to have.

I might make a soup tonight or just something light. Latkes are fried and although not really heavy still fried!! So I have a butternut squash from our garden to use so I think that’s what I’ll make. I found a recipe that was butternut squash and red lentil soup. It’s kinda a curry so I might do that.

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Almost ready!!!

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The mix that was done in the food processor. And of course, the wine glass!!

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Frying up the Latkes

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This is my red fiesta ware that I use at Christmas. Oh, in the background you can see the peanut brittle.

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This was our Solstice fire.

 

Shouldn’t We Be Improving AFFORDABLE Access To Life Saving Drugs!  Most Else Is Just BS ( Bogus Spin)

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The major components of the new drug plans in the House focuses on Drug Pricing, and the Senate’s bill on pricing really does not even confront the Elephant in the room, which is the lack of negotiation of Medicare Drug Prices.  However, both bills have one thing which will improve ACCESS, which is the cap on out of pocket costs, the House at $2000 and the Senate at $3100.   So what is the Bogus Spin?  There are 3 major categories of BS (Bogus Spin)

– Reducing Negotiated Drug Prices will improve  AFFORDABLE ACCESS to life saving drugs.
– New Drug innovation will be stifled if Medicare negotiates price.
– We have the BEST health care system MONEY CAN BUY.

I had planned to do a three part YouTube broadcast on these three elements, but everyone was focused on other government business(impeachment).  I think it is only logical to start this series after the holidays.  However, I believe I can outline some of the logic beforehand.

Reducing Negotiated Drug Prices will improve AFFORDABLE ACCESS to life saving drugs.

Most private and government insurance (eg. Medicare, Medicaid) base the copay at a percentage of the List Price, not the Negotiated Price.  If the negotiated price goes down by 50% the list remains the same so the copay does not change one bit!  Copay must be changed to a percent of  net  pricing. 

The Insurance companies increase the copay % as the price of the drug goes up.  They call it Tiers, and I think they need to change the spelling to TEARS.  Tier 1 (preferred generic drugs)has a very reasonable copay of $5 to $15 per prescription, but in higher cost drugs in Tier 4 and the Specialty Drug Tier it is 25 to 33%  For cancer drugs this can represent $3000 to $5000 per month. I have myeloma and the one drug which is used in most all treatment regimens is Revlimid, at an out of pocket cost of $14,000 per year.  See the graph below.


 TAffordable is a major key to this entire argument.  Is it affordable to all Americans?  I say that is so much BS(Bogus Spin).  It is not affordable to most seniors, nor the middle class, the needy, and minorities.  Let me just talk for a minute about very sick seniors!  The ones with heart disease or cancer.  The number 1 and 2 killer of Americans.  According to the Kaiser Family Foundation the average income of a Medicare Beneficiary was $26,200 in 2016.  To be covered for the 20% copay of Part A & B, they would need to have Part G or F as well, and include Part D for drugs.  Cost for these insurance premiums is $5000 each year and with one drug like Revlimid at a copay of $14000, it comes to a total of $19000.  This is the equivalent to Senior Genocide, but with all cancers a slow agonizing death. Over 600,000 Americans die of Cancer each year!  Just for comparative purposes this contrasts to the costliest war in US history, the Civil War, where 620,000 soldiers died over a period of 4 years. 

New Drug innovation will be stifled if Medicare negotiates price.

If you were provided a free lunch everyday and it was excellent food, why on earth would you pay for your own?   Not having to negotiate price is the “ART OF THE NO DEAL”.   Drug companies must negotiate prices with all major industrialized nations, and private insurance companies and PBM’s(Pharmacy Benefit Managers), but for everything they lose in these negotiations can be made up by just raising list prices which Medicare will pay by law!

The NHS provides billions of dollar to fund the development of new drugs, and academic institutions provide basic research for drug development.  Frequently, this work is then developed by very small companies which do not have the capital to spend the billions to get FDA approval.  If they have a great idea, they usually are purchased or license  the drug to a large drug company, which has the funding to bring it to market.  The two blockbuster myeloma drugs, Thalidomide/Revlimid(Celgene)and  Velcade(Takeda) were developed by very small companies. Celgene was very small when it licensed the use of Thalidomide from Rockefeller University, and Velcade was first developed by a small biotech ProScript to treat muscle weakness and muscle loss associated with AIDS and muscular dystrophy and ultimately was purchased by Takeda.

To me the biggest barrier to new drug development is the lack of protections for small bio tech firms which have become the target of Illegal and criminal stock market manipulation.  Small companies can easily be forced into bankruptcy by Capital Vultures who have found easy prey in small and vulnerable biotech firms.  Many companies have been devalued by as much as 99% in just 5 years.  How many life saving drugs have not made it to market because of these heartless and morally bankrupt animals who feed off the dead and dying?  I explain this in a 3 part series and you can read it if you CLICK HERE.  Two prior blog posts on this major problem are as below, just click on either of the following story headings.

What If The New Cancer Drug Pipeline Runs Dry? No New Cancer Drugs! Patients DIE!
The Proof Capital Vultures Are Destroying Baby Bio Tech Companies Before They Have Time To Create New Drugs!

The USA has the BEST health care system MONEY CAN BUY.

This one is very hard to argue with unless we look at the definition of the word BEST.    If best is the one where you can get the best care in the world only IF you have all the money in the world, then it is hard to argue against this statement.  If best is defined by any other measure, best life expectancy, care for all citizens, care for the elderly and needy, most cost effective per citizen, non discriminatory, lowest infant mortality, ad infinitum, then we have a very long way to go. 

Each of these points will be discussed in my 3 part YouTube webcast titled “The Bogus Spin Report” or in short “The BS Report”. Good luck and God Bless your Cancer Journey/ editor@myelomasurvival.com

For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

Winter Solstice

Finally, the darkest day of the year!

Now it will slowly turn around and the days will get lighter. I’ve actually looked at this over the years and the sunrises and sunsets don’t change a whole lot till around January.

So today we will walk. We’ve been going out around 6:30 am and it’s still darkish and then by round 2, the light is showing.

Yesterday, my daughter and I drove up to Truckee to the library as she had a bag of goodies for her ex- co-workers. I loaded up on cookbooks and I even found on the FOL shelf Comey’s book from last year. the summit had snow at 7300 elevation but around Truckee, there wasn’t that much snow. another storm is headed in this weekend. We had a lovely lunch at Wild Cherries and headed back home.  I’m so glad she is not driving that daily and driving to Sierra College is like 22 minutes and no snow. So she just needs a few more hours to be able to buy into their insurance. I think she said at 22 hours. So one more shift.

I also had an appt to meet my new PCP with Sutter. He seems nice enough. I’m planning on the colonoscopy for the end of January or beginning of February sometime. Oh well, I guess I can suffer thru.

Hanukkah begins tomorrow night and I have the Menorah ready. Although we are not Jewish, but Atheists, I still like the idea of Festival of lights and candles and little presents.

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a lovely new platter( stoneware ) and our very own lemons from the greenhouse!

 

Waiting for Results… Full Denial 10 years ago..

12.19.19

10 years ago yesterday, 12.18.09, I had my first Bone Marrow Biopsy.

The physical pain was excruciating, but it was the psychological effect that was even deeper. I was suddenly participating in a medical world that I couldn’t relate to, or wrap my head around. Being sick, seriously sick that is, was just not part of “my plan” or “who I was”. 

I was on a ride I couldn’t believe I was on. I was thrown onto a roller coaster I couldn’t comprehend, nor accept. I heard new medical words and terms that I had never heard before. I followed my Dr’s lab test assignments as if I was doing it for someone else. Everything became an out of body experience. I was robotic about so much. My life at that time was a combination of normalcy, disbelief, not feeling well, denial, yet still a sense of nothing had really changed. I began to read things online, but “cancer” truly didn’t enter my thoughts, and no one had yet said that word…
Yet…
My next “Hematology” (still “Hema-whhaattt?”), appointment was scheduled for Dec 30, 2009. The day that changed my life forever… that changed everything about me forever. But I didn’t know it at this time, 10 years ago…
Holidays, fun, friends and family was the plan in the meantime. My Dr had put me on Iron pills for my extreme Anemia, and some other meds too, I can’t recall now, and ordered more Labs for after Christmas. And more Labs. Every time my Labs came back, she ordered more. I wasn’t able to see the Abnormal ones online….

Life moved forward fairly normally. I went about all the things we did around holidays. Busy busy, party party. Yes, I still had all my symptoms, but I never ever thought about me having a serious diagnosis…

10 years ago I was “dying” from cancer that was eating me up alive, and I had no clue…
What my Bone Marrow Biopsy revealed on 12.30.2009 was shocking!!!
I’m still in shock…

Back in the day when we were healthy… 
this was maybe 2003!
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Rainy Day

It was a rainy day and I had to drive to Sacramento for my oncology appt. The drive was slow but not too bad. My appt went well. I’ve had Dr. Laptalo as my medical oncologist since I was diagnosed in 2005. He was a fellow then and then later board certified. He’s a good person and I trust him. Again, it’s really just waiting till my numbers are higher to start anything. That’s ok. He did recommend I have the colonoscopy after the diverticulitis bout. So I will schedule that for January or even February. I had him look at my CT scan with contrast and he said there was nothing unusual. So that’s good.

Then I came up to Rocklin and went to Walmart to exchange the flannel shirt I had picked up by accident in XXL. That is way too big for B. Then home.

Tomorrow I have a gym day and then some errands. I need a candy thermometer to make the peanut brittle and I need to go to the bank.

I am feeling somewhat frustrated with the house and it starts to feel really small this time of year. It’s usually when I start looking at decluttering more or at least moving some things around so there is more space. Winter/rainy days do make things seem closed in. Well, that too will pass.

Dinner is veggies and one of the cheese fondues. It’s not the one I usually buy so I thought I try it tonight.

Not Dead Yet

Not even close, doing pretty well actually, though I should post more often. I was diagnosed with myeloma in July, 2003, and according to my math that’s well over 16 years ago. My family and I go to two different support groups, and I get celebrated as one of the long-timers. I like that, so very preferable to being dead, I think.

I’ve been on Pomalyst (Pom) since March of 2008, with the exception of one year when the Pom trial ended. Trials of three different experimental regimens failed me then, but Darzalex became approved and the combo of Darzalex, Pom, and dexamethasone (dex) brought my numbers way back down. Eventually we eased up a bit, gradually dropping the dex altogether and reducing the Pom from every day to 21 days out of 28. That may have been a mistake.

Mayo Clinic Rochester MN

IgG and M-Spike stayed way down for three years, but last spring my shoulder began to hurt and my lambda light chains crept up almost to the top of their range. A PET scan showed a bright, colorful lesion in the right scapula, even though IgG and M-Spike said nothing about it.

The radiation treatments started the very next Monday, 10 daily sessions with breaks only for weekends. When that doctor heard that I was 16 years from diagnosis, he allowed that my myeloma must be “indolent,” like a lazy schoolboy. Well OK, but here it was threatening the use of my right arm! Happily, the PET scan after that treatment showed only a very small lesion remaining in the scapula. Doc did good.

I’m back on Pom every day, Darzalex once a month, and dex 12 mg/week. The arm feels great, IgG and M-Spike are fine, and lambda light chains are right in the center where they belong. We’ll find out more with another PET scan in March at Mayo Clinic.

Let’s have some chillies!

I just read a nice bit of news this morning. A new Italian study shows that eating peperoncini, the Italian word for chilli peppers (also spelled chili, with one “l,” mainly in the U.S.), can cut our risk of having a heart attack or stroke by 40%. Yes, by a whopping 40%!!!

Here’s the link to the CNN article about this study: https://cnn.it/36Fatro

It should be noted that other researchers cast a few doubts on the study’s findings, pointing out that perhaps people who eat chillies are also eating more vegetables, as well as other herbs and spices, so it would be difficult to figure out if the purported health benefits are determined by one single food item.

Okay, that may well be true, but we have another BIG reason to eat chillies…

Capsaicin, which is an active component of chillies, kills myeloma cells. So even if chillies don’t end up protecting us from heart attacks and strokes (they may or may not), we should definitely be using them in the kitchen…!!!

Article on me in the July Wisconsin Jewish Chronicle

I didn’t realize they published this until today…..

Racine native receives bone marrow donation

Edward Wolfman spent a year on the search for the ultimate mensch — a bone marrow donor who could cure his leukemia and save his life. In the spring of 2019, Wolfman finally got the call; a match had appeared on the bone marrow registry.
Wolfman had reached out to the Chronicle during his search for a match, but before it could be reported, he found a donor from across the Atlantic. On May 16, Wolfman received his life-saving transfusion and is now on the road to recovery.
Wolfman, a Racine native, had his bar mitzvah at Beth Israel Sinai Congregation of Racine and is a graduate of the University of Wisconsin – Madison. Wolfman has lived in Los Angeles for more than 40 years, now with his wife and two adult children, both adopted. 
The donor is a man from England. Once the match was made, the donor went through a physical examination and had a procedure done to extract the marrow. A courier then took the marrow from England to Los Angeles. 

Interested in registering as a potential donor? More questions? Contact the Icla da Silva Foundation, Inc at 217-840-8302. Or visit: Join.BeTheMatch.org.
“It’s kind of weird that there’s someone walking around in England who went to a lot of trouble to save my life for no reward other than the reward of saving my life … when you define mitzvah, that’s it,” Wolfman said in an interview.
Searching for a match
Before receiving the donor marrow, Wolfman spent almost a year undergoing intensive chemotherapy, which doctors hoped would eradicate the disease. However, the treatments were unsuccessful, necessitating a bone marrow transplant for Wolfman’s survival.
Wolfman first turned to the bone marrow registry a year ago, but his initial search for a match was unsuccessful. As Wolfman waited for a match, he remained hopeful, and had “a sense that it will all work out,” he said in an interview before finding a donor.
His hopefulness led him to begin a campaign to find donors, and he turned to Jewish communities for help. Bone marrow donors must share a similar ethnic background with the recipient, and Wolfman needed a donor of Ashkenazi Jewish or Eastern European descent. He told his story to Jewish publications around the country and urged people to join the bone marrow registry. 
“They feel good for life. Someone out there is living because of their efforts,” he said of donors.
Wolfman’s connection with the Jewish community in Los Angeles became stronger throughout his struggle with the disease, he said. His rabbi mentioned him at every service and encouraged congregants to register on the donor list. Congregants drove him to the hospital at times when he was unable to drive, he said.
Now, a few weeks after the transplant, he remains in a weakened state.
“I really just want to get my life back… it’s like I’m a shell of myself,” Wolfman said.
Yet his struggles have reminded him that he is recovering, and he is grateful that he is going through this process. Throughout the ordeal, Wolfman has remained hopeful, from praying for a match to working towards becoming his old self after cancer. 
The rules of bone marrow donation stipulate that the donor and recipient must remain anonymous for at least two years. If Wolfman could meet his donor, he would tell him, “You saved my life, and I owe you a lifetime of gratitude,” he said.
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Things to think about for 2020

I don’t do goals so much anymore and I try to avoid putting myself in the position of expectation on myself. I do like lists of things that I would like to do or things that need to be done.

I like Flylady as it gives me a focus on weekly chores.  And I like grocery lists and menus. I also like budgeting and do that daily and weekly and monthly. I also have annual bills tallied. ( This might be the challenging area once were on SS solely).

Now that SDI is ending money will be different.  I have saved as much as I felt I could but there were some big expenses in 2019. We had over $6000 in medical bills. The trees were almost $5000. Plus travel and other expenses during B’s transplant. We were very blessed to have the GoFundMe account which covered Kiwanis’ house for 3 weeks and other expenses.

Overall, financially, 2019 was good. We didn’t rack up any CC debt related to medical bills or anything related to the transplant. I used CC to pay things but was able to pay in a timely manner.

In 2020 we will need to be ultra frugal as there won’t be bonuses, or extra money coming in. Honestly, I ‘m not sure how it will play out but it will one way or the other.

We’d still like to take down the big tree in the back of the house and that will be upwards of $5,000 as it will need a big crane. the other big thing will be, do we want to redo the bathroom so it is ‘age ‘friendly. We plan on staying here so a walk-in shower seems prudent.

I’m also figuring that I’ll be starting Velcade sometime in the next 6 months so that’s weekly trips to Sacramento. Lots to think about.

BIG #MYELOMA NEWS WEEK!  #ASH19 Showed Excellent Progress Towards The CURE, & The House Passed A Drug Cost Control Bill!

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Myeloma Had An ASH Kicking In Orlando This Year!

I had an opportunity to attend the ASH(American  Society of Hematology) annual conference this year in Orlando from 12/6 to 12/10, and came away with the feeling the future of myeloma treatment is excellent!  These are my top line takeaways.

– Myeloma has a tight knit   community of researchers, myeloma specialists, patient advocates, drug companies, and myeloma organizations like the IMF, MMRF, LLS, and Myeloma Crowd.   They use Twitter and Facebook as communication tools which provides real time information to the myeloma patient community. There are more than 24 major categories of blood diseases represented at ASH, and  myeloma was frequently listed in the top 10 of ASH twittter online influencers.  Given myeloma is one of the the 24 major diseases, you would expect them to have less one top influencer in the top ten, but they had between 6 to 10 of the top 10.  Just remarkable!

–  Each new class of drug which is approved has resulted in an increase of one year in life expectancy.  We just had one new drug approved, Selinexor.   We also have 7 drugs which have a high probability of approval.  These are the ones with at least two FDA designations like Orphan Drug and Fast Track.  Effectively the ones the FDA finds  fill an unmet need and  have the most potential, kind of like the Teachers Pets of drugs.  CAR T, BiTE’s, ADC’s, AWC, melflufen, multi target CAR T, CLR131, allogeneic CAR T and many more, are all new classes of drugs which bodes well for current and future patients life expectancy.  I estimate a minimum of 6 new classes of drugs approved for myeloma which, if history repeats itself, would take the current NCI, national average life expectancy, for all patients from 6 years to 12 years.  The 15% who consult or see a myeloma specialist which now have a life expectancy of 10+ would likely see to exceed 16+ years.

–  When Daratumumab was approved in RRMM(Relapsed Refractory Myeloma) it had been approved  with an ORR(overall response rate) of 24% and a PFS of  just 1.9 months.  Daratumumab has been moving to early stages of the disease, and in combinations with EVERYTHING!  It seems “Things Go Better With DARA”!  These new combination with Darzalex are exhibiting exceptional resultsl. At this year’s ASH we have new drugs which have shown better initial results in heavily pretreated patients who have also failed Darzalex.  The newly approved Selinexor had an ORR of 26% and twice the PFS at 3.7months.  A drug in clinical trial, GSK2857916 has an ORR of 38.5% in  patients who had previously been treated with daratumumab, and a PFS of 7.9 months  This is 4 times more effective than the Darzalex PFS!  The big question is how will these and all the new classes of  drugs perform when moved to earlier in the disease process.  I think the sky is the limit!

– A big finding for me was a repeated use of the phrase “treatment used as a Bridge”.   At end stage myeloma, patients are often too sick to qualify for clinical trials.  If  treated with one of the end stage drugs like  Panobinistat, Selinexor, or many other combinations the disease may be able to be controlled enough to make it into available clinical trials. 

–  Treatments for early stage myeloma have shown excellent results,  For example high risk smoldering myeloma has a 50% chance of progressing to full blown myeloma each year, however an all oral clinical trial of IRd (Ninlaro, Revlimid, dex) had a 0% chance of progressing in the first 30 months or 2 1/2 years.  Many such trials for high risk smoldering myeloma are in process.  Soon the question will be how do we screen the population to catch myeloma in the precursor stages.  This may reduce or eliminate the devastating end organ damage associated with finding myeloma in the later stages of the disease progression.  The future looks bright!

The House Has Passed A Bill Which Should Help Patients To Get Access To Life Saving Drugs!  BUT!

This is great news for the myeloma patient community.  Cost is important, however the critical feature to the patient is ACCESS TO LIFE SAVING DRUGS!

The Congressional Budget Office estimates that the proposal would reduce Medicare drug costs by $500 billion over 10 years in three major ways:

· It would allow Medicare to directly negotiate prices for up to 250 of the mostly costly drugs that have no competition from generics or biosimilar drugs. Companies that don’t negotiate would be subject to an excise tax of up to 95 percent on gross sales.

·  The US prices of those drugs would be tied to a benchmark index of prices in other developed countries.

·  And, for all drugs, manufacturers would have to rebate back to Medicare any price increases that exceed the rate of inflation.

The most significant element of the bill for drug access is the capping of out of pocket and co pay for  Medicare at $2000 per year. Currently there is no out of pocket maximum limit.  Most all newly diagnosed myeloma patients usually have a treatment regimen including Revlimid, and the copay would be $2600 for the first month.  Under the House plan it would be limited to $2000.  Great news, if is was not for the fact 50% of prescriptions with a co pay over $2000 are abandoned at the pharmacy.  I believe Senate bill allows this to be spread across the entire year.  So what is the BUT?

The BUT is the house passed it on Party Lines, and  President Trump, who supported the idea of negotiating drug prices during his presidential campaign, now strongly opposes the House Democrats’ bill for part D.   The measure will likely die in the Senate, where Majority Leader Mitch McConnell (R-KY) may block it from ever coming to a vote. 

The Senate has a bill which the president will likely back BUT is absent one of his initial major objectives to negotiate Medicare, and Medicaid oral drug prices. This bill well likely be rejected if voted on in the House.   The concern in the Senate has to do with the thought this would limit new drug development.   Private insurance companies negotiate prices now, as do all single payer programs throughout the industrialized nations of the world.  It is also the talking point all the drug lobbyists are spinning!   It is known that 8 in 10 American’s feel Medicare should be able to negotiate drug prices.   BUT the measure does not address the problem copays are always computed as a percentage of the list price and should include provisions to make copays a percentage of the negotiated price. Under the existing system if the cost of a drug is negotiated down by 50% the copay would remain the same.  Our entire economy is based on negotiating price and trying to get a better deal by leveraging buying power or “The Art Of The Deal”.  The USA has 4.3% of the world’s population, but is estimated to be 45% of the world’s total prescription drug spending by Reuters in 2021.  As President Trump has noted the world gets a free ride.  Like China’s predatory trade practices, this must STOP!


This is a very complex problem which requires far more of a discussion than I can discuss here. I plan on providing a multi part You Tube broadcast which I will title “The BS Report”. 

Good luck and God Bless your Cancer Journey/ editor@myelomasurvival.com
For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1