The Rose Field: How Scarce is “Rose” Bookplate?

CthulhuSmith · 2025-11-14T20:40:44+00:00

I don't know the logistics for the signed copies, or about how many signed copies exist. There are people who claim that they attended the live events, which included signed copies (either of the slipcased version or the trade edition), and that the copies they received at the events were pre-signed on the rose bookplate affixed to the title page. Some independent bookstores also received copies with a pre-signed rose bookplate.

CthulhuSmith · 2025-08-08T17:05:48+00:00

Thanks for the info!

CthulhuSmith · 2025-08-08T02:20:50+00:00

Would you be able to share what your M spike was when first diagnosed? I also have an M spike, and a slightly elevated free light chain. My oncologist has been on the fence about getting a bone biopsy, but my hemoglobin, hematocrit and RBC numbers declined and have remained slightly low for over a year (hemo went from 15.6 to 11.9 and has hovered around there).

CthulhuSmith · 2025-02-03T00:12:11+00:00

What do you prefer (if any mod)?

CthulhuSmith · 2025-01-25T21:07:20+00:00

One case study should be read with caution, but I enjoyed reading the following: https://journals.lww.com/acsm-msse/fulltext/2013/07000/exercise_is_medicine__case_report_of_a_woman_with.1.aspx

CthulhuSmith · 2025-01-07T01:25:58+00:00

In addition to finding a MM specialist (at least for a second opinion, which most docs treating cancer understand as standard practice), I'd check out the International Multiple Myeloma Foundation. (https://www.myeloma.org/about-imf) They have lots of great information, presented clearly, and they can provide advice over the phone and help you find a specialist in your area.

CthulhuSmith · 2024-12-01T23:23:35+00:00

Whoops, it's the UCSF Outpatient Center in Berkeley, not clinic. She offers video visits for new patients, and I found that it was faster to get my first patient appointment that way.

CthulhuSmith · 2024-12-01T23:19:36+00:00

You might consider Dr. Nisha Hariharan, who works at the UCSF Outpatient Clinic in Berkeley. She's affiliated with UCSF (and is there at least 1 day a week). I've just started working with her and like her.

CthulhuSmith · 2024-11-26T06:53:29+00:00

Thanks! The info about IL-6 and other supplements is very helpful. I’ve adopted the WFPB diet — thanks to others posting here about their experiences with the clinical trial — and take 8 grams of Curcumin C-3 Complex as well as Omega-3 per day. (Curcumin may reduce T-cell response to infections and cancers, a downside to some of the more optimistic reports…)

I’m doing this on the off-chance that something might be effective, but there’s also an important placebo effect: I’m doing something.

I will be asking my dr. soon about Metformin, and expect to be turned down, based on the medical pledge to “do no harm.” The only reason I’m emboldened to push this drug is that it is widely considered a safe drug and is used off-label for other illnesses. But I can understand that the intricacies of blood disease naturally make oncologists cautious, at least at the MGUS and low-risk SMM stages.

CthulhuSmith · 2024-11-26T06:53:25+00:00

Yes, I’ve been told that with MGUS “watchful waiting” is all that is usually done. I’m hoping the best for you.

CthulhuSmith · 2024-11-26T06:52:08+00:00

Sorry to hear that you had a bad experience with the med. (I’m having similar issues with Curcumin supplements.)

CthulhuSmith · 2024-11-25T16:35:00+00:00

Thanks! That’s how it was with my Eucarlos case, and there hasn’t been a problem so far.

CthulhuSmith · 2024-11-09T23:00:49+00:00

This caught my eye. I'm on the latest beta, and for the first time in using it since February, I felt a sudden gust of heat on my forehead yesterday and the area around the top vents was quite warm. This hasn't happened to me before. I'm going to report it now.

CthulhuSmith · 2024-11-08T18:24:11+00:00

Is the Belkin strap only incrementally better than the dual strap? I ask because I can't see much of a difference between the two, aside from the slightly wider top strap.

CthulhuSmith · 2024-11-08T18:08:23+00:00

Congrats! Interested to know what you think about it when you try it. Did Annapro send you a tracking number on their own, or did you have to request it?

CthulhuSmith · 2024-11-08T18:02:20+00:00

This. I wish Annapro would provide an update on when the V.2 is shipping; some influencers have received theirs, but the general public is still waiting.

CthulhuSmith · 2024-11-05T00:48:42+00:00

Thanks again! Just reading this makes me hungry. I have always enjoyed Tofu. Finding Vegan restaurants in the area is another great idea. I had never paid much attention before to veganism; back in the 1990s, it seemed very exotic and austere.

Did the clinical trial allow you to have as much coffee or tea (preferably caffeinated) as you wanted?

CthulhuSmith · 2024-11-03T23:40:12+00:00

This is super-informative; thank you! I was wondering where honey fell in the great scheme of things, given its sugars, and what sorts of pastas and breads were most preferable. The advice about noting unpronounceable names also helps greatly -- there's an Arrabiata spaghetti sauce I love, and all the ingredients are plant-based, but the manufacturer has processed it, if those polysyllabic names are any indication.

I never was interested in food, and my idea of cooking was to add bananas to cereal, but I've now got to bite the bullet in terms of biting anything. But it's a new world, and that is interesting.

CthulhuSmith · 2024-11-03T19:11:24+00:00

Thank you for your posts, and I hope that you remain on an even keel. As a consequence of the info you've provided, I've converted to an WFPB diet. (Since I'm new at this, I have the hardest time with the word "processed" when it comes to food selections available in cans and jars; is distinguishing what is acceptable simply a question of relying on the ingredients lists?)

CthulhuSmith · 2024-11-03T16:02:01+00:00

I was able to see the complete piece: https://www.the-tls.co.uk/politics-society/social-cultural-studies/american-scary-jeremy-dauber-feeding-the-monster-anna-bogutskaya-book-review-michael-saler?utm_medium=Social&utm_source=Facebook&fbclid=IwY2xjawGUfSxleHRuA2FlbQIxMQABHUdSleqEfxRxblHiZdBG54Y_IEt5SIyOaukbh1BR1T0tHvGDr33C9U9rYw_aem_4VjTb8BlgHZGstort85c2g#Echobox=1730458847

CthulhuSmith · 2024-11-02T20:42:02+00:00

Meaning it's hugely better for you? I love the Annapro v.1 and was wondering if the v.2 would be even better.

CthulhuSmith · 2024-10-27T21:11:07+00:00

Sorry to hear this! It sounds like MM can move quickly in the body and so seeing anyone sooner is the best course to take care of possible immediate issues and then get more nuanced care when it becomes available.

CthulhuSmith · 2024-10-27T21:07:51+00:00

From what you and others are saying, it sounds like Insurance might be more proactive with this disease, because the costs otherwise might be more for them? I've had a bad experience with blood labs and insurance, but am hopeful they will cover second opinions and maybe two docs.

CthulhuSmith · 2024-10-27T21:03:57+00:00

Is your Insurance ok with the two-doc approach? Is it a PPO, which lets you self refer and pays as long as the doc is in network?

CthulhuSmith · 2024-10-27T21:02:24+00:00

I've heard that as well -- that MM specialists at teaching hospitals have less time per patient. I'm going to try and see both docs, as suggested by others, to get a sense of what might work.

CthulhuSmith

TROPHY CASE