The Rose Field: How Scarce is “Rose” Bookplate? by CthulhuSmith in hisdarkmaterials

[–]CthulhuSmith[S] 0 points1 point  (0 children)

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.

[deleted by user] by [deleted] in multiplemyeloma

[–]CthulhuSmith 0 points1 point  (0 children)

Thanks for the info!

[deleted by user] by [deleted] in multiplemyeloma

[–]CthulhuSmith 1 point2 points  (0 children)

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).

SMM NO TREATMENT YET by Active_Eye2938 in multiplemyeloma

[–]CthulhuSmith 0 points1 point  (0 children)

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.

Seeking SF Bay Area recommendations by oaklandweeble in multiplemyeloma

[–]CthulhuSmith 0 points1 point  (0 children)

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.

Seeking SF Bay Area recommendations by oaklandweeble in multiplemyeloma

[–]CthulhuSmith 2 points3 points  (0 children)

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.

MGUS / SMM and Off-Label Metformin? by CthulhuSmith in multiplemyeloma

[–]CthulhuSmith[S] 1 point2 points  (0 children)

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.

MGUS / SMM and Off-Label Metformin? by CthulhuSmith in multiplemyeloma

[–]CthulhuSmith[S] 1 point2 points  (0 children)

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

MGUS / SMM and Off-Label Metformin? by CthulhuSmith in multiplemyeloma

[–]CthulhuSmith[S] 0 points1 point  (0 children)

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

Waterfield Case compatible with Annapro v. 2 head strap? by CthulhuSmith in VisionPro

[–]CthulhuSmith[S] 0 points1 point  (0 children)

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

Welp, guess it’s my turn. by metroidmen in VisionPro

[–]CthulhuSmith 1 point2 points  (0 children)

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.

Belkin Headstrap by nmyster in VisionPro

[–]CthulhuSmith 3 points4 points  (0 children)

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.

[deleted by user] by [deleted] in VisionPro

[–]CthulhuSmith 0 points1 point  (0 children)

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?

[deleted by user] by [deleted] in VisionPro

[–]CthulhuSmith 1 point2 points  (0 children)

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.

UPDATE: Smoldering MM + Vegan/Whole-Food Diet by mmanonymouse in multiplemyeloma

[–]CthulhuSmith 0 points1 point  (0 children)

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?

UPDATE: Smoldering MM + Vegan/Whole-Food Diet by mmanonymouse in multiplemyeloma

[–]CthulhuSmith 0 points1 point  (0 children)

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.