Random thoughts and other things…

I wonder why some people stop blogging. I follow some great bloggers in the UK and in Wales. When I clicked on the blogs they follow most of them no longer blog. They seemed quite successful and nicely laid out so one wonders did a life event or spam stop them cold in their tracks.  I think blogs evolve because you change and so does your world. Children grow up, some people have illnesses, etc. Anyway, just some random thinking.

Yesterday, I made it to the gym and it was not crazy busy but still somewhat busy. The 10am slot must be the busiest since most people are out and about plus there are 2 classes still going on at that time. I like to go around 10:15 am but I may bump it out to 11 am as most people are leaving then. ( another random thought)

Today I’m home doing some house things and cooking. I have 12 large potatoes in the oven to make double stuffed potatoes. This will make about 9 halves that I can freeze for easy dinners. Then later I plan on making a turkey roast and will have one or two of the baked potatoes with that. Earlier this week I made Maine Baked beans from Mavis over at 100 dollars a month

Unfortunately, I couldn’t find the recipe again so maybe it’s in an old post.

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Basically, you have to soak the navy beans overnight and then cook for an hour or two before putting in the oven. I only did an hour and it really did need another one. But then you bake in a dutch oven for @ 6 hours. It really was delicious. It’s not an easy on the table meal but great for a rainy weekend. I like her recipe since it didn’t add bacon which the veggie can’t have. But I added Adelle’s chicken sausage on the side.

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Tomorrow I have the jury deliberations. I’m on the fence with it so I guess I’ll hear what other people say. I hope we’re out by noon.

other random things…

I checked the Cobra and the medical was canceled so that’s good. I still need to call and find out how we get a card so we can use the Vision and Dental?? Always something to call and check on.

We also made the decision to postpone Yosemite with the Norovirus so maybe we’ll try again in March.

If We Take Away The Drug Companies’ Government FREE LUNCH, THE SKY WILL BE FALLING! Part 3 Of 4

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 Let’s set the stage by first establishing the logic behind not negotiating Medicare Drug prices.  The first is this will limit the development of fewer drugs because the drug companies will develop fewer drugs.  The other is that we will not have access to many of the current drugs for cancer which are currently available in the US but not in Europe or other countries.  Some very good arguments if they were at all credible.  But I would argue it is nothing more than Bogus Spin by Drug Companies and their lobbyists. The Drug Industries’ efforts to  Pettifog the Public!  I will talk about each of these points in detail. 

Before I begin the analysis of these arguments, I  believe they all are in fact mute.  If our government was a government which represented the people, one would think that if 9 out of 10 members of the public believe we should negotiate Medicare D prices, how on earth could  it not be law NOW? Something is very wrong with our democracy, when just 10% of the people can DICTATE policy! 

With all of this doom and gloom you would think the Medicare Part D was the vast amount of the global drug spending.  However, in 2017 Medicare Part D spending was just $154.9 Billion of the total worldwide spending of $1135.0 Billion.  This is 13.6% of the world spending.  The Congressional  Budget Office(CBO)  projects a savings of $49 billion per year and at the average after tax profits of Pharma at 14%,  the impact on the bottom line of the international drug industry would be $6.9 Billion or just 6/10 or 1% if I were to provide a liberal estimate of the impact to pharma.  Let’s just say, because we do not negotiate price the profit on Medicare is 3 times greater than the industry average or at 42%,  then the impact would be just 1.8%.  Someone seems to be trying to make a MOUNTAIN out of a molehill.  The source of much of this information can be seen if you CLICK HERE!  The CBO also estimates that the loss in revenue for drug manufacturers would lead to 8 to 15 fewer drugs coming to market over the next 10 years of the approximately 300 drugs expected to be approved during this period.  To me drug companies will continue to do what they have always done to improve profits and that is to JUST RAISE PRICE. With drug increases of over 10% each year for 5 years and 2017 at 8.4%, any impact of lost profits would be offset by just one year of price increases.

The final point on the suggestion negotiating price will limit the development of new drugs.   If you can make profits and your bonus by just raising the price of your existing drugs, why go though the heavy lifting to develop new drugs.  If we take away this FREE LUNCH, major drug companies will have a greater incentive to develop new drugs to achieve improved profits.  In addition, big pharma will more likely look to the small biotech companies who are a major incubator of drug development and help them to bring great ideas to the clinic.   The process used to be these small inventive companies would develop ideas conceived at Universities, the NCI,, Teaching Hospitals and Labs, bring them to a level of development and then be taken over or funded by large pharma which had the financial might to spend the $2.5 Billion to get these drugs to market.  This process has been disrupted when all you have to do is raise price to make bonus.  The inventive, small biotech companies now are starved for funding, and are seen as easy targets for destructive stock manipulation, which can and does bankrupt these small vulnerable agents of invention.

The last argument is just preposterous!  New drugs are patented so drug companies can sell them as a monopoly for several years.  For the European’s they set the price based on a value of $50,000 per year of life saved by a drug, and the US has a number from ICER which is a benchmark at $150,000 per year of life saved.  So the USA will always be the first country to get drugs approved based on having a much higher threshold for drug denial at 3  times that used  in Europe.  

Just as an aside, I recently attended the ASH(American Society of Hematology Meeting) in Orlando and was amazed at the explosion in new treatment developments.
With this new backlog of drugs in later stage development, the future of FDA new drug approvals looks outstanding. 

The last important part is the graying of America and the world, which provides a HUGE tail wind to the growth in Pharma sales and profits.  This has been reflected in the  tremendous growth which we have seen in Medicare Part B and Part D spending..  In 2017 spending was $185.3 Billion of the total USA spending of $333 Billion.  This was 56% of the total by just 15% of the US population over 65.  The US population over 65 will increase to 21%  of the US population in 10 years, 40% greater than today.  Logic would therefore assume Medicare spending would increase by 40% or $74 Billion without a price increase by Pharma due to just the aging population.  A way to reduce Medicare costs are right here, without cutting Medicare funding at all.  NEGOTIATE PRICE!

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


Simple Sunday

It’s still cloudy and chilly here in Northern California. There was a big storm that came thru Wednesday and Thursday with I 80 getting closed due to spin-outs. The temperatures are supposed to go into the mid50’s and low 60’s next week so that’s better.

When it’s this chilly which is all relative, I don’t wander around outside much but I’ve decided to start doing at least 15 min outside even if it’s just raking.

Of course, I walk most mornings very early and it’s quite freezing. Literally 32 degrees, but somehow that’s just my MO.

I’ve had jury duty this week and I go one day next week. It’s all quite interesting but for me, with my IBS, I get quite nervous about bathroom access. I did fine because I didn’t eat in the morning.  I’m keeping track of what I’m eating to see what, if any, pattern there is. Plus I am somewhat claustrophobic so being confined to the jury room is a little stressful.  But I made it along with 12 others.

I’m definitely not used to being out all day and that was very stressful. My daughter made dinner both nights so that was nice.

I canceled the medical part of the Cobra so hopefully, that went thru as you do it by email. It takes up to 7 business days to reflect so I’ll be checking the online site. We did request to keep the dental and vision at least until I get that covered by something else. What do other people do? Is it AARP that has a separate dental plan and what about vision?

B was also able to get the very last of his 2019 SDI because we had the doctor say he was still disabled. It wasn’t a lot but it will certainly help.

We went to Costco and did some grocery shopping and filled the car up with Costco gas.

I read that there has been a norovirus at Yosemite from mainly people eating at the Ahwahnee so now we are decided to probably not go since we cannot even risk B getting something like that as it could activater his GvsH.  we have some time to think about it but there are other places we can go. We’ll see…..

I didn’t get to the gym today so I will go tomorrow.

 

Midweek musings

We lost another chicken yesterday. It was one of our black and white ones. I looked all over for feathers but nada. I’m guessing it was the fox since he’s coming nightly to try and get compost( it’s closed). But foxes do hunt in the day. It always makes me sad to lose one. Now there are only 4. We aren’t planning on getting chickens this year but maybe next. I think we all need a break from the daily chicken routine. But I do love having chickens though and they eat bugs and keep snakes away. Still, the morning and night routines do get old and we have to lock them up as the raccoons would get in their pen.

I’m still checking daily on jury duty but there are 2 more days and last time I did get called on Friday which was weird.

There’s still a lot of uncertainty with things financially and with B finally giving his resignation. We think now that the long term disability we were counting on for the next 5 months won’t happen since he will be retired from UNFI. He’s still medically unable to work but because he will have left UNFI by Feb 1st we think they will say that’s that then.  Has anyone had this happen or been in a similar situation and still was able to get the long term disability? Hartford has tried everything not to pay and succeeded so I’m guessing they will win on this one too.

Some good news is though Merck, the drug company, approved B getting the Tier 5 drug Noxafil for free. That would have been an initial $2000 approx for the first month. I think it was @ 1750 or around that. So that is great news.

With that being resolved we can now drop the Cobra and just do Medicare and supplementals. It’s kinda scary giving up the Cobra but really it’s been a royal PITA. Especially the prescription part.  The one thing I need to check is if we can keep the Cobra for just the dental and vision. Before with the other provider, we could but as of January 1st, the provider changed. Actually, that’s when the issues with the prescription part started happening.

So still lots of things up in the air.

Mayo’s Myeloma And You: A Day For Patients And Caregivers

When Pat Killingsworth started Pat’s Myeloma Survival School he wanted to develop something which focused on the Patient and Caregiver.  He had attended many of the meetings like ASH and ASCO and found they were designed with a focus on the medical community, and lacked a patient focus.   At the time these sessions were held in the Jacksonville area so Mayo had a big part to play in them.  I got the same feeling at Mayo’s Myeloma And You Program as I had at Pat’s Survival School. This is why!  

–  The first 3 speakers were either patients of caregivers with lots of time for questions
–  Doctor Asher Canaan Khan and Dr. Sikander Ailwadhi have an uncanny way of providing a patient friendly presentation with humor
–   The second half of the program was all about supportive care
–  Dr. Mohamed Kharfan-Dabaja and Dr. Sikander Ailwadhi discussed the new CAR T program at Jacksonville, and the work they are doing with several malignancies including myeloma.
–  Dr. Ailwadhi discussed the many clinical trials which are currently available including AMG 701, BiTES, CAR T, ADC, Selinexor, and CLR 131.
–  Dr. Asher Chanan Khan discussed breakthroughs and Immunotherapy. He highlighted a new vaccine therapy which he feels just may be the BREAKTHROUGH for cure we have been hoping for.  Many vaccines have been tried and failed in the past but he feels he has finally found the key!  I hope he has, he is usually right!
​-  This Mayo Myeloma And You Program is just 2 years old and the growth has been exponential and the cost at $20 per person is a deal. Over 200 participants this year.  The drug companies like Takeda, Celgene, Sanofi, & Karyopharm helped to fund this program.  

Knowledge is power and for myeloma it is LIFE!  Thanks to all who helped to bring this patient and caregiver focused program to the myeloma patient population.  To me more should be presented using the Pat Killingsworth Survival School Template.

Good luck and may God Bless your families cancer journey. For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

A few pictures from the meeting.

Simple Sunday

Well, let me say right off the bat, today is not that simple and yesterday was a crisis.

Everything was fine until B put clothes in the dryer and then there was a loud pop. In the house, all the lights, appliances, space heaters were flashing. It wasn’t good.

My daughter ran out to make sure B wasn’t electrocuted and to turn off the power. He went to the main switch and turned off the laundry room but the house was still blinking everywhere. He turned off the main power to the house. All the power protector surges were fried. In fact, the one in my office area was smoking and melted.

THIS WAS NOT A GOOD SIGN. My daughter thought maybe it was something in our wiring but I didn’t think so.

After regrouping, he called PGE and in about an hour the repairman showed up. After checking lines to the house, he determined the main power line had come loose and caused the surges. He fixed it.

We lost the dryer, one space heater, the radio/record player and I think that’s it. Fortunately, we didn’t lose the TV, refrigerator, etc.

So today, we have to go buy a dryer and install it. Actually, I think B is going to take our son and go to Lowes. I ordered online so it’s just a matter of picking up at Will Call.(  I hope)!!!

So now to a Simple Sunday.

  • we have a nice chicken and wild rice soup for dinner plus a lentil soup for the veggie:)
  • I’m going to the gym and do some weights and treadmill
  • tidy the house and do the bathroom zone( Flylady zone for the week)
  • read, read, read…..I’ve read about 6 books in the last 3 weeks. This one is the new one in The Girl with the dragon tattoo series. The writer who took over is quite good. I also read the new Jack Reacher, Blue Moon, the new Anne Hillerman, The Tale Teller, The Tattooist of Auschwitz,  ( very sad but truly excellent), James Comey’s A Higher Loyalty, also superb and shocking stuff about Trump( what an idiot). I also read a couple MC Beaton’s Agatha Raison books.
  • walked this morning at 6:30 am and there was a nice, big moon.

This week I am on call for jury duty. I checked Friday and it said to check again. I really hope I get passed on.

A nice little getaway

We left for Chico around 9:30 am. It was drizzling here but by the time we were heading up Hwy 99, the skies were clearing. A nice drive up.

We made good time and arrived just when I thought we would in time for lunch.

We had soup and a sandwich at the Tin Roof bakery and it was, as always, yummy. I  bought a loaf of their delicious sourdough to bring home. Then we cruised the upscale Salvation Army and then walked into downtown Chico. I was hoping to buy some closed in Birkenstocks but they didn’t have the soft sole in the style I wanted.  We checked out the bookstore too.

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One fun thing we did was walk around CSU chico, which was empty since it’s Winter break. Then we went into the Chico museum and had a lovely walk around.

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We checked into our room around 2 pm and relaxed. Around 4 we went down to the bar and had chardonnay wine and had a nice time just chatting about stuff.

We headed to the Red Tavern for our dinner reservations around 5:30. It’s a cozy place and fancy but not super fancy. Just right.

I had the Prix fix dinner of chicken scallopini, salad, and desert. Unfortunately, there wasn’t a good vegetarian option except for quinoa something so B had a lovely mushroom soup and a house salad with bread.  All in all really terrific.

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The next morning we had a nice buffet breakfast at the hotel although I thought it was free. We had a voucher so we ended up paying an additional $12. I guess that’s pretty cheap for two breakfasts.  Then we headed over to the Trader Joes since I thought it would be clever to do my weekly shopping there. I didn’t get everything I needed like some meat but other than that it was good.

Neither one of us wanted anything to eat so we headed out and took the more country way back home. Tons of migrating birds in the rice fields. This is where Lundberg Farms has many of their rice fields. If you know the brand, then that’s where some of the rice comes from.

If USA Healthcare Was Affordably Accessible, The Very Sick Would Love Drug Companies, Insurance Companies, Government, And Medicare

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As a myeloma patient I feel blessed to have had great insurance through my wife who had great union benefits as a teachers aide.  I  had kidney failure so I could get Medicare coverage as a secondary insurance.  In addition this coverage allowed me to be treated at Mayo and UAMS, two of the world’s best Myeloma Centers.  So personally I loved my doctors, hospitals, and drug companies because I had AFFORDABLE ACCESS to excellent health care.  I, plus perhaps 50% of Americans, are equally blessed.  This leaves the remaining 50% without affordable access to our system, and this makes all the sense in the world why the following statements are true, and all else is bogus spin.

We spend twice as much as the highest per capita spending of any other nation in the world.  Over twice as much as the average of all other developed countries.  We should have a healthier population than the rest of the world, but over and over on any measure life expectancy, child death rate, etc. we are seldom even in the top 10.  We do not get what we PAY FOR !

Drug Prices are 2 to 10 times more  expensive than in most other counties.  All other nations and commercial insurance negotiates for lower prices, but Medicare does not.  It is like everyone gets to buy a car at half price except the US which must pay list!  Whatever drug companies give up to other great negotiators is made up by increasing list on Medicare!

Insurance companies, PBM’s and Medicare base copays as a percent of List price, and not of negotiated price.  If the insurer get a 50% discount you still pay the SAME % of List.  Also as the price of drugs increase the copay cost goes up.,  The copay for generic drugs is low $5 to $10 per prescription, but Tier 4 and specialty drugs(like cancer drugs) far greater and can be as much as 30 to 35% of the list price or as much as $5000 per per prescription.  The copays must be limited to $100 to $200 per prescription. 

Medicare Part B has no out of pocket maximum, so 20% or $500,000 for a stem cell transplant is HUGE!  A Medigap plan would be required at an additional $3000 to pick up this extra 20%. 

The new laws in the House and Senate do not address the issue of affordability, but could with some key modifications.  The following discusses most of the above and more.



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

Stanyan Street

The Oakland Gang: niece Tillie, me, Nephew Joey, my wife Marilyn, and Noah our oldest son.

Due to my cancer, multiple myeloma, the physical adventure of traveling challenges my attitude. I dislike flying: the herding, the depressing bag of pretzels, and the cabin’s claustrophobic fit. Yet, once again, my wife and I chose to spend the holidays in San Francisco’s Bay Area.

We stayed in Oakland at a hotel on Broadway, close to where our oldest son lives. We were joined by a niece, who lives and works in a town nearby and her brother, our nephew, who was visiting following the completion of his degree at Tufts University in Boston.

Lake Chalet

I’d arranged to re-schedule my twice monthly infusions so as to not interfere with our activities. My treatment also includes oral drugs, which can continue when I’m on the road. I take a chemo type pill once a day and a steroid once a week. I’ve become inured to the daily pill. Its side effects blend into the general fatigue syndrome that characterizes my blood cancer. The steroid, though, radically alters my mood, my energy, and, perhaps, my personality.

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We dined at a number of excellent restaurants: Itani, brunch at Lake Chalet, The Berkeley Social Club,  a morning snack at The Rotunda on the first morning, the hotel’s restaurant for breakfast Christmas day, then Farley’s East on the penultimate morning. Prior to seeing the movie, Little Women, we ate Thai street food at IMM and finally a goodbye meal at Tay Ho, a French/Vietnamese restaurant.

The highlight, however, was Christmas dinner at my brother and sister-in-law’s house in San Francisco. The Oakland gang merged with the San Francisco gang. 

Brother and Sister-in-Law’s house on Stanyan Street

The house sits near the top of Stanyan Street above Golden Gate Park. It is of Victorian vintage, built early in the twentieth century. (1904)

There are three levels situated on a steep slope adjacent to Sutro Forest. My brother and his wife live on the top floor. Their daughter and son-in-law and 12 year old grandson occupy the main floor. A laundry and storage, as well as a small studio apartment finish out the dwelling. There is also a two car garage, quite a luxury in parking starved San Francisco. They bought the house for $100,000 in 1973.

Oakland street art.

They admit to initially being anxious about the mortgage. At the time, my brother was a San Francisco fireman. His wife worked in medical research. She then chose to get a law degree and eventually became a patent attorney. Along the way, she also bore a child. By investing in their ingenuity, they were able to persevere through those early busy years. The house is now worth much, much more than the purchase price.

Stanyan Street

Main floor of the Rotunda in Oakland, CA

Christmas day was my steroid day. Under the influence of the drug, I sometimes jabber too much. I have also been known to say the wrong thing at the wrong time. Such are the perils of the steroid high. My faux pas filter, however, managed to keep me out of trouble. The convivial conversation even  prompted me to toast the three family lines in attendance. 

But, the enduring star was the house itself. Nurtured by my brother and his wife through the years, it has hosted numerous events commemorating family passages. There was a going away party for my wife and I decades ago when we immigrated to New Zealand. Then, in the not too distant past, a support reunion party for me prior to my stem cell transplant.

Tay Ho

Furthermore, two of their granddaughters lived there while launching into adulthood. And, my SIL’s mother spent her final days in one of the downstairs apartments. Birth, death, and all the transitions in between: such is the legacy of the Stanyan Street house.

When the evening ended, my wife and I returned to Oakland with our son. The lights of the Bay Bridge glittered with holiday flair. My slumpiness from the myeloma had vanished temporarily, along with other aches and pains of disease and aging. The day’s activities had drained the jolt of energy caused by the drug. Yet, I still floated in the steroid’s groove and mused, without judgment, as to how my body is no longer entirely my own. It is managed, to a degree, by pharmaceuticals. That’s ok. I would not be alive without them. 

Travel plans

Now that Christmas and NY are over, it’s back to my regular things.

I’m already planning some trips for us and what I’ve lined up so far is

  • Chico to stay at the Diamond Hotel( a restored old hotel) and dinner at the Red Tavern which is kinda fancy.
  • Yosemite and a stay at the Ahwahnee which is on my bucket list. Plus I’d never go to Yosemite during the tourist season. We did that camping when our kids were young and it was busy but not insanely so as it is now. We’re staying only one night due to the cost factor. It should be about a 3 1/2 hour drive so quite doable.
  • I still need to book the dates for Santa Barbara. I’m thinking early March which should be lovely down there. This will be 3 nights as it is too far just for 2 nights. Although we might just stay 2 nights and then the other night in Monterey as that’s about the half waypoint. ( it is a long drive)
  • April, I’m hoping we can get into New Brighton Stat beach and will look at that this weekend actually. It always books out that time of year so I don’t know yet.
  • Update on New Brighton. Just made a reservation for April so we’re set there. It’s after Easter and there were only a few spots with 3 nights. So I took one.
  • May has nothing, maybe camping?
  • June -nothing yet. Everything at nevada beach is booked:(
  • July we usually stay home
  • August nothing yet

The rest is open and I’ll see where we are.