Myeloma Blogs

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Please help by clicking on “Add your myeloma blog” to make sure yours is added.

If you don’t have a blog and you want one, write to me by clicking on the “Contact” link.

By the way, please make it easy for people to comment on your blog by not requiring a login or account creation.  You may end up with some comment spam, but the rewards in real comments will offset the inconvenience of dealing with the spam.

There is a new plugin pulling in the blog feeds. We no longer have post content being displayed. You’ll just see links for the most recent posts. The older posts will still be kept, since some blogs no longer exist.

Thanks,
Beth

Latest Posts

Social distancing

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Last week I noticed four of my cats sleeping in the sun, in the four corners of our bed, each on a different blanket. I immediately thought of Social Distancing, two words that are, unfortunately, very familiar to all of us these days…

Cats are the best!!!

Treating COVID-19 in a patient with multiple myeloma

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Some readers have recently been asking me about curcumin and Covid-19. Is it good or bad to be taking it if you contract coronavirus?  Can it reduce your risk of contracting Covid-19? (See my post on vitamina D, incidentally.) I don’t know.

If I had any answers, believe me, I’d be publishing them…immediately.

Well, it just so happens that this afternoon I read a very interesting Science Daily article that may shed some light on this matter. It discusses the case study of ONE myeloma patient, in Wuhan, who was given an immunosuppressant drug, a monoclonal antibody, called tocilizumab. Here’s the link: https://www.sciencedaily.com/releases/2020/04/200403124931.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fhealth_medicine%2Fmultiple_myeloma+%28Multiple+Myeloma+News+–+ScienceDaily%29

Okay, now that you’ve read the SD article, you can read the rest of my post. 😉 

The main use of tocilizumab is to treat rheumatoid arthritis. The interesting bit, as far as I’m concerned, though, is that tocilizumab blocks IL-6. Remember IL-6? I haven’t talked about IL-6 in a long time, but, simply put, it’s a really good friend of multiple myeloma. Aha…

And, by reducing the expression of IL-6, tocilizumab helps control the effects of what is known as a “cytokine storm” (read this April 1 New York Times article for a good explanation of what happens to Covid-19 patients when their immune systems go wacky and begin churning out too many cytokines, which can lead to vital organ failure: https://www.nytimes.com/2020/04/01/health/coronavirus-cytokine-storm-immune-system.html).

Okay, now for this: curcumin inhibits IL-6 AND suppresses the cytokines involved in cytokine storms. Yes, it does both the things that tocilizumab does, without all the side effects, which actually don’t look that bad–from a runny nose to urinary tract infections (well, okay, I’d rather not get a UTI!).

Does that mean that curcumin would work against coronavirus or indeed help lower our risk of getting this blasted virus? As I wrote above, I have no idea, even though, as we know, among other things, curcumin has anti-viral and anti-inflammatory properties.

All I can say is that this bit of news today is promising. Sure, this is only ONE single case study, but I can tell you that, on March 19, tocilizumab started being administered to 330 coronavirus patients in a hospital in Naples (Italy). At the end of this month, fingers crossed, we may have some results. Right now, Italian newspapers report that the director of this study has expressed “cautious optimism.” I also saw that the FDA has approved Phase III trials for treating Covid patients with tocilizumab.

We just have to wait and see…

But, while we’re waiting, I’m going to keep taking curcumin (actually, I’d never thought about stopping…!!!)…

Friday Stuff, not Frugal

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We have baby chicks. They just showed up this morning. We ordered 10 Leghorns. I wanted Bardrock but they weren’t sexted. If you get them non -sexted you will end up with some roosters. Roosters are kind of a PITA really.  Anyway, since we’ve decided to not do the camping trips at least till August, I figured we would be here at home and we might as well get chickens. I really like chickens and they are interesting birds. Plus they do keep bugs at bay and also snakes. Of course, you don’t get eggs for 4-5 months but that’s ok.

Then, let’s see, yesterday was Barclay’s IVG infusion. We got there by 10:30 and the parking lot was pretty empty and the freeways were not too bad at all. I waited in the car reading on my iPad, looking at the news, sending a few texts and trying to nap. He was done by 2 pm so long but not bad. We were home by 3 pm.

My son cooked us a nice dinner of homemade mac and cheese and roasted asparagus. It was nice not to cook. Tonight is pizza night and the dough is in the fridge doing a sow rise.

I ordered 25 lbs of flour and it should be delivered today. This is Central Milling which I usually get at Costco but they are out and I’m not going there anyway for quite a while.

I’ve had yeast in the freezer and when I went to use it it didn’t really puff up so I may have to track down some fresh yeast but in the meantime, the pizza dough was doing an ok rise.  The yeast is supposed to be good for a year in the freezer so maybe it’s just been in there a little too long.

I have spent A LOT OF MONEY on supplies. I’m just going to call this emergency food stores.  Since March 3 when I went to Winco/Costco I’ve spent over $1000 in bulk foods, pantry foods, regular store stuff and more. Most of it will last a long time as it can be used over the coming months but still, it’s a little frightening to see what I’ve spent.  Next week I will go early to our local store for milk and some fresh stuff and wine if we need it.   I did check out some of the wine delivery services but it’s more expensive than I want.  I also was checking out Instacart for delivery but so far I wasn’t that impressed.  Maybe I look at it next week. For now we at set.

 Next week starts almost a month of being home and honestly, I don’t see it changing up soon. I’m certainly not going out to just be out.  I have my labs next week and then both my dental appts are postponed and my eye exam. I haven’t canceled my oncology appt yet and that’s not till he end of April but if my labs aren’t shocking and it’s still just going up I’ll message him and say how bout next month.

Be safe and stay home!

John’s post

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This morning I read and really enjoyed my friend John’s post, “Today will not be here tomorrow,” and decided to give you the link to it: https://goodbloodbadblood.com/2020/03/27/today-will-not-be-here-tomorrow/?fbclid=IwAR0eeATsBAJDPOxMMajDnq85BSnLf7FApQFegnZpa4g6XA_6punacPJjFg8

I agree with him 100%, incidentally.

The only thing I would add is this: if only other countries, including the U.S., had paid attention to what has been happening in my beloved Italy…if only…eh…

I could go on for hours on this subject. But today let us simply enjoy John’s post. I will keep my rants and ravings for another day…

In fact, I’m going to go into my garden right now to see if my tulips have bloomed…Ciao!

No April Fools Day Jokes This Year

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Hello 4.1.20

Often I have posted a funny, sarcastic or joking update on April Fools day, but not this year, with all the scary and sad things going on with CoronaVirus! Ugh, at first it seemed overly dramatic on the news, with the word “Pandemic” flashed all over our screens. Now reality has set in, that this tiny microscopic virus is HUGE! I just can’t wrap my head around what’s happening. Can you? The impact on the world, on society, on each one of us, is just enormous. Maybe in isolated, minimally occupied areas of the earth, things are different, but in large cities and communities, this thing is overwhelming. I am not the type to panic or have anxiety, but the longer this thing goes on, and the longer there’s a possibility of me and those in my circle being infected, the more “scared” I have become. First Myeloma is trying to kill me, now this little critter is out to get me… ugh, I just want a simple, uncomplicated, drama free life for whatever time I have left. And I just want to feel ok. Is that too much to ask???

Anyway, we’re all aware of what’s going on, so I don’t need to go on and on about it all here. Please stay safe everyone, and hopefully this monster will pass soon, and medical science will get it under control. Thank goodness for all the super smart researchers working so hard to figure this out for all of us!

So in my little world, Myeloma thinks it’s time to aggravate me, and overpower the meds I am currently taking. Here we go again with how smart biology and chemistry is, and Myeloma’s ability to mutate and become smarter than the drugs trying to kill it. I’ve been on 40mg Dexamethasone steroids, Velcade and 400mg Cyclophosphamide/Cytoxan since September 2018, and that’s a remarkably long run for me! Often my type of Myeloma is able to overpower the meds within about a year or less, so I am grateful I’ve had as long as I’ve had with this current triplet battling for me. It’s a crazy way to live, month to month, actually week to week, actually day to day, wondering what’s going on inside me and wondering how powerful Myeloma is becoming.

Well here’s my recent IGA results, and you can see what is going on:

January I jumped to 1000, then February down to the 500’s, now March way up to the 1400’s! How crazy is that!! Normal is between 70-400. Additionally, my M Protein (M Spike) has increased to 1.02, (zero is normal). So here we go… the Myeloma roller coaster on one side, and Corornavirus on the other side. And of course the continued insanity of my husband’s Alzheimer’s. Just never expected my “golden years” to be so full of “platinum” drama lol.

What am I going to do, you ask. Well nothing, as I just don’t want the stress of changing meds and dealing with new medication side effects at this time. As I write this, I am having side effects from Monday’s chemo, but over a year and a half into this protocol, the side effects are fairly predictable and somewhat tolerable. I feel yucky, but still functional, as I’m always pushing myself… except when I feel completely awful… which is what I fear from CoronaV. I was so sick with a “headcold” or “flu” so much of later Dec, into most of Jan and I think into early Feb. Took me a long time to get well. I just hate feeling awful, and just hate feeling sick all the time, from Myeloma, side effects, chemo, etc. Maybe I had CoronaV back then, and now I’m immune! Wouldn’t that be an ironic miracle. And maybe all the meds and chemo I’m on, and have been on, will fend off CoronaV!!

And now…  a Huge Shout Out to my amazing local Kaiser that has implemented incredible cootie screening protocols! Here’s a few pics I took on Monday when I went for my Velcade shot. I actually feel safer now, then ever before, as the cleaning and sanitizing, and screening for sickies and cooties is way beyond anything I have ever seen. And it should be like this all the time! Cross contamination is what gets all of us, the well and the sick. Just be clean people, and have common sense about what you touch, what you cross contaminate, where you walk, and touch, and take precautions around dirty humanity! Yikes I have been saying and doing this for decades! Most likely why I am still alive, and why I’ve been able to battle Myeloma back for over 10 years now!!!

Yaaaaaaaaaaaaay for Kaiser:
Just looooooove my Kaiser staff!!

You can’t enter the parking structure now
without being screened!
Look at this!
After being directed where to park,
you can go to the entrance
Where they actually screen you,
ask questions, and take your temp!
Awesome!
Back off coooties!
And it’s Valet Pharmacy Rx delivery in the parking lot!
Looooove all these new protocols
to keep us safe from crazy CoronaV!
hahahhaaa!
Yep!!!
Take care everyone, and be smart, wash wash wash, clean clean clean. Take your shoes off outside your house, stop close contact with everyone, sanitize any personal space surface that you’ve contaminated with cooties from public places. Be super clean inside your own home. Always be thinking about what you touched where, then touched that other thing, with that, then touched this, with that! It’s amazing how germs are shared. Cooties lurk everywhere to get us, and now everyone is seeing how much smarter they are then us! I’ve known this, but everyone thought I was an “OCD germaphobe” lol. Not so much anymore! Get outside in fresh air as often as you can! I’ve made it 10 years with Myeloma, so I’m doing something smart, right :))
Thanks for reading and I’ll be back again soon :))

Music that brings people together

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Last night Stefano and I watched a lovely TV program called, in Italian, “Musica che unisce,” literally translated as Music that unites.

In addition to comedians, actors (Luca ZIngaretti, whom I adore), dancers (Roberto Bolle) athletes (Federica Pellegrini), and even regular folks like us, 25 well-known Italian musicians (Andrea Bocelli, see photo below, and the Three Tenors, e.g.) got together, from their homes, to thank and raise money for Italy’s Protezione Civile, similar to a Civil Defense, which has the goal of predicting, preventing and managing national disasters and catastrophes, both natural and human-made. Together with our doctors and medical workers, the Protezione Civile has been amazing, simply amazing, during this  disastrous coronavirus outbreak in Italy.

Last night’s program was really inspiring. The musicians played and sang from their homes, as I mentioned above…No audiences, no clapping, no cheering. Only…music. Yes, very inspiring. I confess that I got a bit emotional here and there. There were also a few doctors who explained what Covid-19 is and how to protect ourselves from it. One of the nicest moments was when doctors and nurses played and sang songs, too…

Italy has shown the world HOW to react to the spread, to the invasion of this horrible virus. Italians were THE FIRST to clap (in thanks to doctors and nurses) and sing from their windows and balconies. A united country. Yes, true, a minority of ignorant fools have ignored the lockdown rules, and many will be paying the consequences of their actions, but the same thing is happening in several European countries right now.

In general, though, we have all stayed at home, staying safe…not just for ourselves but for everyone else.

I am so proud of Italy…What an amazing country!

Thanks to Jacqueline, I was able to post the program here. Yes, it’s in Italian, of course, but there’s a lot of music, too, and beautiful images of this beautiful country (oh silly me, getting emotional again), so I hope that even those who don’t understand Italian will be able to enjoy it.

STAY AT HOME!!! STIAMO A CASA!!!

Soooooo Many Challenges

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Hello 3.30.20

Have crazy lab reports to share with you, but I didn’t have time today to finish capturing the screenshots and posting because my Alzheimer’s hubby has been super challenging these last few days :(( But I did make it today for my Velcade shot, along with taking the crazymaking 40mg of Dexamethasone steroids early in the morning, and later after Velcade, slamming down 8 lovely baby blue Cyclophosphamide Cytoxan capsules at 400mg. 

Promise I will share my news tomorrow 3.31.20… or perhaps I should wait til 4.1.20…. “April Fools Day”, as the Universe is sure having the last laugh on my behalf and all of humanity!! Can you believe what is going on!! I marvel at how smart biology and chemistry is!! How one little virus cell can control and change the world, right! And how cancer controls our personal biochemistry within us!!! No doubt, Mother Nature is smarter than humans! Just incredible what is happening with coronavirus! Medical science and the hearts of humanity are amazing, but seriously, one little tiny cell, many tiny little cells, taking over and stopping the world! Just mind boggling!!

Cool short video from Immune Compromised patients!
Thank you Matt for finding this!

The Kiss

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Today I thought I’d post a cute, well, okay, a TOTALLY ADORABLE photo of two of my cats “kissing” each other. It happened a few evenings ago, while Stefano and I were preparing dinner in the kitchen.

Our two baby girls, Pandora on the left, Pixie on the right, were perched on the dining room table, watching us…They looked so cute that I stopped what I was doing, picked up my cell phone and began taking photos of them and, therefore, by pure chance, caught this gesture of affection, too…

A sweet, carefree moment at a time when there is not much to smile about.

#IoRestoACasa!!!

Like an episode of ‘Survivors’

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If you’ve never seen the BBC show ‘Survivors,’ you should. It’s a group of people that find each other after a pandemic that has wiped out almost everyone. They are all very different and the story is interesting.  But this morning the one scene I’m remembering is when some of them go out to find any grocery store to get stuff. Well, my son and daughter drove out to go to Grocery Outlet this morning. It was weird. I said be careful, wear your mask, don’t talk to anyone….. slightly paranoid right?  I hope they make it back.  ( Just kidding):)

We did a nice walk and no one was there this morning. I have to say reading the WP about people going to NParks and the beaches just totally gets me upset. What is wrong with people? This is a pandemic, not a time to invade coastal towns so you can walk on the beach.

This week Flylady has 2 zones the Living room, and then the entryway. Both are relatively easy for me and I’ll do the LR zone this morning. I did get my beeswax candle order. Yes, it is a necessity as I light these every night. The order is 4 pairs for $40. I also got a Thai soup order( sort of like ramen). My daughter and I both like ramen for breakfast so this will be nice.

I think my Costco order for laundry soap is supposed to show up tomorrow. Definitely not 2-day shipping but more like 7 days out. Still, I will need laundry soap so we’ll be set.

Barclay is outside doing a burn pile of leaves and twigs so that should keep him busy for a while. Plus it is nice to get those outside chores done.

Keeping on…

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Things are still in lockdown in California, for which I am grateful. Gov. Newsome is doing a great job of keeping ahead of things with basically shutting everything down. I honestly don’t get the Trumpers hating him so much when all he is doing is trying to take care of California. The negative comments on the local the newsfeed on Facebook are nuts.  Crazy!!

Since I’m an introvert and don’t go out to movies or things often it hasn’t bothered me to be home except maybe going out for coffee.

The park has posted signs to walk 6 feet apart and the playground is now taped off. I’m guessing the park is getting overwhelmed with people trying to just get outside. Since we walk early there is only the new dog walker guy and he walks very fast and not near us. He’s been coming for about a month now. Many people over the 8 years I’ve walked there have come and go. It changes with the seasons too. Lots more people as the weather gets nice. So we always start backing it up and going earlier. In summer even 5am is not too early.

I made some more oatmeal chocolate chip cookies yesterday and they are almost gone today. Humm…rationing  next??  We had fun individual pizzas last night although my son said each person was supposed to top their own. I did it because nobody was coming in to do it.

Tonight I’m making some chicken tenders with pasta on the side. I  think I even have some Quorn chicken tenders for B. I don’t have any salad stuff but I do have chard in the garden I can use.  Oh, BTW, Amazon prime has Julia Child’s the French cook original on and it is so fun to watch. It’s in black and white which is too bad since you can’t’ see the browning and sauteing she describes. I’ve actually learned a thing or two and I wonder how much I saw originally as her style of cooking is similar to mine although she is maybe a little more strict. Anyway, check it out as it’s fun.

I haven’t really started any projects except working on notes for a “prepper” pantry. I was trying to move away from stockpiling but now, no way.  If anything I’m going full throttle. Yesterday, I ordered from Mountain house which does freeze-dried stuff.  They didn’t have the #10 cans I wanted( all sold out) but they did have some servings of 2-3 available. I bought some to try and of course, they really last forever probably.  I’ll give an update when they arrive. Also, I’ve ordered from Costco, but they are sold out on most things and some they are not shipping to my zip code right now. I wanted a case of Rosarita’s beans but that’s not available as of yet. I’ll do a write up down the road when I get it together.

I need to schedule my labs for next week or maybe the following week. I don’t see Dr. Laptalo till the end of April and even then if things are only the same( my numbers going up but still not starting treatment), I’ll ask to just pass on seeing him physically.

BTW, Finnie seems to be doing better and eating a little more. I’m still not sure how long he will last but at least there has been an improvement.

Oh, and I think we are going to get some chicks as we know we’re not going traveling anytime soon so we will be home to take care of them.  I may order online so as to avoid the feed store though.

Well, I hope everyone is staying safe and healthy.