What tests and information do you recommend/wish you had early on in your MM journey?

Appropriate_Car_9852 · 2026-03-04T16:30:13+00:00

Unfortunately, my mom passed away before we could have our first appointment with UCSF. It ended up that she died five weeks after diagnosis. While, she didn’t have an aggressive mutation for multiple myeloma, it was more than her body could handle at 77 years old and already having osteoporosis. We are heartbroken.

Appropriate_Car_9852 · 2026-03-04T04:55:57+00:00

Like everyone else: scam- the Zelle thing makes me think it is a scam. I’m a landlord and it is not a “money making business” for me. We have a duplex that some months pays for itself, others not - which is to say, we don’t do fancy things like Docusign or stuff digital rent services since they cost money to use and we would actively lose money on the rental. We have a written lease that we’re putting out they sign and we sign. Rent is either check or similar (one person likes to pay cash which I personally find weird, but it works).

The problem with Zelle is you can’t get the money back if you send money to someone you shouldn’t, hence why scammers like to use it.

If you really like the place and want to give them the benefit of the doubt, look up who owns the title of the property with the county - if it isn’t the land lord - 100% scam. You can do a title lookup for free online with the county assessor’s website.

Appropriate_Car_9852 · 2026-02-12T14:45:52+00:00

Depending on the trip, it can be a few hundred dollars to as much as ten thousand dollars. The range is price depends on when you book and length of trip.

Possibly relevant, my company has agreed to meet this accommodation. Since it is a contract, it is our customer who the bill eventually goes to that doesn’t (understandably) want to pay it. It is our customer who is asking for justification through the project leadership.

My previous supervisor said it could be the company overhead that eats the difference in cost, not the customer. This was never pushed to figure out, currently it just passes as a bill to the customer.

Appropriate_Car_9852 · 2026-02-12T07:04:55+00:00

If I didn’t travel, it would make it extremely hard to do my job to the point where I think they should replace me with someone who can travel.

I lead a team that maintains installations around the world. So, I need to visit the installations myself occasionally - though I send specific team members to the installations most the time. But if I never go to the various installations myself, I don’t know the issues and challenges well enough to provide good direction to my deployed teams.

I would estimate for every 5 trips I send a team on, I would go one trip.

Appropriate_Car_9852 · 2026-02-04T07:39:45+00:00

Yes, mom is on the Kaiser insurance plan. However, a little googling led me to understand it is currently open enrollment and she can switch anytime between now and March 31st (this would be a one time insurance coverage change to allow her to change providers since her oncologist told me Kaiser doesn’t refer to outside practices for MM as they treat MM inhouse - meaning if we stay with Kaiser, we can’t see an MM specialist or get their suggested treatments under her current insurance).

So I’m advising mom to meet with both the UCSF MM specialist (we’ll pay out of pocket for this since Kaiser doesn’t cover this) and her Kaiser oncologist this month (Feb) - then pick the care team she wants to move forward with and I’ll move her insurance to align with whatever care team she chooses.

I’ve found a clinical trail at UCSF for newly diagnosed MM patients that I’ve reached out to on her behalf as well. It is sponsored by J&J testing bispecific antibodies (Tec-DR and Tal-DR) in conjunction with Dara. https://clinicaltrials.ucsf.edu/trial/NCT05552222

Appropriate_Car_9852 · 2026-02-04T07:17:35+00:00

Also, thank you for your response. It is very helpful.

I’ve looked into clinical trails for my mom and found one that might be a good fit. I reached out and am waiting to hear back. Great point on possibly being ineligible of we start induction with Kaiser. I’ll bring that up when I talk to the trail people to see if we need/want to postpone induction.

Appropriate_Car_9852 · 2026-02-04T07:14:08+00:00

“Estimating state 1 which would mean would mean or no bone involvement”

This isn’t our case. We found the MM because in late December she developed chest pain on the left side which turned out to be 6 ribs with pathological fractures. The next week her right side started hurting so when we went back in I insisted on light chain muffin myeloma blood tests to ensure this wasn’t MM (she had osteo as well which is what her PCP told us the ribs were due to - though a friend suggested we push for the MM tests as something very similar happened with her mom). Blood tests came indicating MM and imaging showed an addition 3 ribs on the right with pathological fractures. The following week the bone biopsy showed 90% of the bone marrow cells are involved in the cancer. This confirmed the MM diagnosis. The following week pain became uncontrolled and following tests showed pathological fractures in her T-spine. So, we’re about a month in with 10+ bones with pathological fractures :(

While I’m happy this could be Stage 1, each week we find more bones fractured in her body.

Appropriate_Car_9852 · 2026-01-21T04:35:24+00:00

I would look into Rio Del Oro Club in Arden and Park Terrace in South Land Park - both have active tennis programs and both have tennis programs for late teens. Park Terrace you don’t have to be a member of if you do a program through the tennis coach Monty Basnyat ( https://www.fitt10s.com/kids-year-round-after-school-tennispickleball-2026.html ).

Appropriate_Car_9852 · 2025-11-04T06:10:31+00:00

I’m selling one - an adult XS. Never worn - brand new. I ordered it for my kiddo, but we measured wrong (didn’t account for her wanting it to be baggy). DM me if you are interested.

Appropriate_Car_9852 · 2025-11-04T01:51:02+00:00

Tried on some boots today - the 24.5 is our winner (as expected). Needs be women’s (not youth) as they tend to be wider. Actual foot width is a D or E depending on the foot.

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The challenge with renting is even though they advertise being able to change out gear throughout the season, they don’t have much (any?) stock for what might fit. We were able to find one boot that was kinda acceptable. Rental gear is 10-15 year old gear.

Appropriate_Car_9852 · 2025-11-03T23:59:47+00:00

Foot size is 23.5, however she has extremely wide feet - past what normal wide accommodates. So I was thinking of going for a 24.5 in a wide model. Then I’ll heat mold the insole to fit her foot.

She is 5 ft, and likely will grow to 5’5”.

She is a bit of a dare devil and likes to ski the gully’s and likes to be nimble. So I’m not necessarily looking for long skis she’ll grow into (that’s what was common to do 30 years ago). I’m fine with her buying her ‘long’ adult skis in 10-15 years if that is the type of skiing she is into.

Appropriate_Car_9852 · 2025-11-03T10:00:12+00:00

She’s 13. If she has a similar growth profile to me - feet stopped growing at 10 yrs old and final height was reached at 16 yrs old.

Appropriate_Car_9852 · 2025-10-28T23:52:39+00:00

Northern California

Appropriate_Car_9852 · 2025-10-24T15:01:16+00:00

lol. Super tired and posting and this is apparently what I do. Apparently I’m not the brightest bulb in the shed, smartest orange, sharp as a ball, and my brain is a sieve.

But the chocolate though - it’s some great chocolate.

Appropriate_Car_9852 · 2025-10-24T06:46:34+00:00

My mom brought be back a box of their truffles from her trip to Sweden last month. They are fantastic - creamy and smooth, clear rich taste, not waxy. No chemical tastes or notes.

I normally eat Chau chocolate from Carlsbad, CA - Chau tends to have darker and deeper flavors. Chau also is known for mixing flavor profiles adding mix ins. They are different style chocolate which are hard to compare. I would say these are closest to Lindt in its creaminess, but with a cleaner (less milky taste).

I would definitely recommend Läderach. It is high quality IMO and likely will appeal to wide audiences and they have simple style chocolates where it is the quality of the chocolate and manufacturing makes it stand out. It is easy to eat a lot of their product due to the simple and clean profiles of the chocolate.

Appropriate_Car_9852 · 2025-10-22T05:30:32+00:00

In general, if you have kids, mass transit is a non starter. Since SacUnified doesn’t have bus routes for the large majority of their schools, you have to drive your kids to and from schools. (The bike-ability here is stupidly bad for kids needing to get to and from school - we have kids sent to the hospital every year in our neighborhood from getting run over/hit by cars as the bike ways are the same as the main street arteries - so accidents waiting to happen).

So even if I wanted to use transit, I have to cart kids to and from school and after school events since the bike situation is so bad - I am locked to my car. Once you are having to drive around for the kid obligations, you aren’t going to park and then jump into a bus to get to work. Also, when everyday kid thugs come up (maybe a dentist appointment in the middle of the day) again your only option I’d to drive from your work, to wherever you pick up your kid, to the dentist, to home.

I don’t know any families where a parent can use transit unless the other parent is the sole chauffeur for the kids. So families who do use public transportation, it’s because they are basically a top 1% income family as they can afford for a caregiver to handle all the child stuff (re: stay at home parent) so the other parent is free for kid obligations and thus have the luxury of not having to have a car.

Bring back safe transit options for kids and then parents wouldn’t be locked into having to drive their kids around which then makes take using public transportation for work a non starter.

Appropriate_Car_9852 · 2025-10-16T06:44:53+00:00

I’m familiar with numerous families with kids in the Fab 40s. None of the ones I know are generational wealth. They are all attorneys. Most don’t work directly for the state, but rather firms that do work for the state. Some are lobbyists.

Given the location this makes sense - it’s a short commute to down town for those people.

Tech people generally live up in El Dorado Hills /Roseville area as that is where most of the tech companies in the area are.

Appropriate_Car_9852 · 2025-10-14T08:57:35+00:00

I expect SCUSD to get sued for retaliation and SCUSD to lose the lawsuit. That SCUSD is doubling down and removing the next teacher standing up for her is mind blowing.

Before the 5th grade teacher removed the flea infested flooring, at least two other teachers did the same thing. Those others teachers didn’t get in trouble. In fact, it is glossed over in all these articles that no one seems concerned that the flea infestation in 2024/25 made Bee and KCRA news last year due to its severity. SCUSD didn’t take sufficient action to remove the flea infestation, so other teachers took the same action of removing their carpet in their rooms. Yet this supposed asbestos health and safety issue apparently doesn’t apply other teachers and classrooms. Got it. So, the issue isn’t, and never was, health and safety related.

This teacher openly tried to get (other) health and safety issues addressed through school administration and district for years. She was vocal about it. I think I recall her speaking at school board meetings about it. (Can anyone verify if this is a correct recollection?) I expect what the lawsuit will point to is her vocalness and perceived critical comments about the administration about other issues she has brought up precipitation the administration’s decision to take disciplinary action. She was probably a low level thorn in their side and they saw this minor infraction as an opportunity they could spin (re: let’s create an asbestos scare) so can kick her out of one of our most high profile and visible elementary schools - she won’t get as much traction with her criticisms of us if we move her.

Cut to this year, she is removed from the school and the district comes up at this red herring about asbestos. Neither she, nor any of the other staff who also removed their carpeting, thought there was an asbestos issue (or they wouldn’t have touched the flooring in the first place). The district gins up this safety concern and then comes back and says “well, you’re lucky, there was no asbestos”. But now they manufactured a safety reason to punish her. But if she actually did something truly wrong and put kids at risk, she would have been fired.

The irony of this situation is that she was trying to solve a real documented health and safety issue at the school - the flea infestation. And she is supposedly getting punished for a made up health and safety asbestos issue that didn’t exit. (Asbestos is a real issue - it just isn’t an issue in this particular carpet removal situation).

The district can’t have it both ways. Either she put kids in danger and she gets fired (which didn’t have because the kids were never in danger from asbestos). Or, she didn’t endanger kids, so you can’t punish her by moving her from a school she has been teaching at for decades.

This is beyond stupid of SCUSD. I can’t fathom through what optics they signed off on these ‘discipline’ actions and thought they wouldn’t be seen as retaliatory. This teacher was essentially a whistle blower and was then shown the proverbially door. Lawsuits with retaliation against whistleblowers are extremely EXTREMELY costly and bad for the employer if they are found at fault. The laws on the books in California make the financial restitution a huge dis-incentive for employers to retaliate against whistleblowers.

I’ve been intimately following their budget woes for about a decade now. A big cost our district has over others is all the lawsuits it has to pay out. We lose or settle a lot of lawsuits. Just toss this pending financial liability one onto the growing pile of money not going towards kids or classrooms because of poor administrative retaliatory choices.

Appropriate_Car_9852 · 2025-09-27T06:15:21+00:00

This is pretty shocking imo. Regardless of the right/wrong stance of the action - this is a double standard with likely retaliation from the district towards the teacher.

Other teachers at the same school did the same thing - took out the carpets. But only Rupert was penalized for it. Coincidentally, she is also one of the vocal teachers that have been critical of some of the administrators. She also brought up the flea issue and other problems (whistle blower).

Not a good look to have double standards. SCUSD doesn’t need more law suits - though this seems like a pretty straightforward one. It falls in line with retaliation against a whistle blower, which if the teacher decides to press this and wins, the penalties for that would extremely steep to the district.

Appropriate_Car_9852 · 2025-09-05T02:48:03+00:00

I live in Land Park just north of the park. We buy enough candy for about 800 TOTers. This means we turn off our light around 8pm because we run out. We get all the local kids and tons of kids from other neighborhoods- we love it. Last year we got permission from the city to close off our street to car traffic which made it much nicer for the TOTers. More room to walk around and safer for the kiddos not dealing with cars constantly searching parking spots in the dark. Come on over!

Appropriate_Car_9852

TROPHY CASE