Costco and Dr. Stangelove

Yay….., our Costco toilet paper order showed up yesterday. That means we’re set and won’t need to go into the store at least for a while yet. I have another home delivery of some prepper pantry stuff showing up. That includes brown sugar, regular sugar, and bakers yeast and chocolate.  I was talking with B that the last time we were in Costco was March 3. so if we can get to June 3 that’s 3months.  The home delivery, even though more expensive, has been a lifesaver. Time, gas, driving down to Roseville. So really a win-win.  I think I’m still going to do one more Instacart, but I’ll wait on that for now.

We used more of the LLS gift card at our little market yesterday and bought things to get thru the week, like hot dog rolls, burger buns, tofu, milk, and cream.

I also am expecting a farm to table meat delivery of some chicken and a small amount of beef. It’s called Crowd Cow if anyone is interested. They are 2 guys from Seattle who wanted to support small farmers.  I’ll do an update on how it is after it arrives. I kept the order small to check it out.

For anyone who drinks wine out there( we do) Darci Kent wineries have case sales going on. We have bought from them before and their wine and labels are quite lovely. I’m planning on buying the new case release( if it’s still available) of a rose, sauvignon blanc, and chardonnay.   Maybe I better go check right now.  Whew…. all good. I ordered it. Yeah, I love NOT having to go to the store to buy wine.

B has the gate ready to go up today so that will be one project down and lots more to go.

We watched Stanley Kubrick’s Dr. Strangelove last night and wow, for a movie back in 1964?? it was great and so well done. Usually, I don’t really like Kubrick’s stuff but this was good and Peter Sellers was pretty phenomenal.

Serenity

Did the heartbreak change me? Maybe, but look at where I ended up. I’m all good already. So moved on, it’s scary. I’m not where you left me at all
Don’t Start Now – Dua Lipa

Ups and downs – light chains down (KFLC = 130 … κ/λ = 42) , spirits up 

Last week I read an article by Zoe Williams, musing on lockdown fatigue:
“I suspect it’s not gradual, it’s really sudden. You spend four weeks making banana bread and doing yoga, managing your anxiety, looking on the bright side, curating your half-hour worry-window, and then, wham! You can’t take another second of it.”
And so it may be. Feels like the UK passed that point. Goodness knows where we’re heading. The park is increasingly busy and I’m torn between empathy for people who have been cooped up in airless flats for many weeks, and worry about whether a little release will cause a lot more covid. We’re going to find out.

Lockdown is hard for those in cramped living, with insecure employment, coping with pre-existing health problems and maybe with abusive relationships. Hard for young people, whose sense of urgency is greater and who are not programmed to be risk averse or to choose personal sacrifice for the benefit of the wider community. Easier for those in large houses, with work-from-home jobs, or retired in leafy villages. But I think it might be easiest of all for me. I really, personally, don’t much care. I’m enjoying the food on the table, the small acts of generosity, time with my family, playing at being a teacher. Are there things I miss? Of course. But when was that not true?

To celebrate the return of my hair
and the absence of any likelihood of judgement
I dyed it blue for a couple of weeks

Most of all, I’m enjoying the mental release which comes with rare personal good news. At Day +100, things looked bleak. My numbers had barely halved, despite the extreme poisoning of the SCT. My disease was, at best “stable”. My prognosis was counted in months until relapse. But myeloma is consistently unpredictable, and mine is reliably slow. Two months ago, my numbers dropped 20% without warning… and two weeks ago, they’d fallen again, to 130. This is the lowest my light chains have been since mid 2015! And, unusually for me, there’s a clear direction of travel over a period of months now (rather than the usual seesaw), and the slope is down.

To view it through the slightly more niche measure of κ/λ ratio… I’ve hovered around or above the treatment threshold of 100 for a very long time, but last measure it was 42. My Hb level was even defined as “normal” on the blood test results. I cannot recall a single time that has been the case.

So, understandably, I hope, I’m not about to let the covid crisis crimp what may be the best bit of living I get. Other people may be willing this over, but I am not. Wishing your life away is extreme foolishness.

The other good thing about being healthy, now, is that I suspect I have an unpalatable choice coming my way, as life opens up: whether to try to continue to shield, or to take the same level of risk as everyone else. Shielding would mean Marisa and the kids, as well as me, and I’ve been reluctant, all the way through to countenance keeping them trapped at home once everyone else is allowed out. But obviously the risk is real, and depending on how vulnerable I think I am… well, I’m not stupid. The only alternative I could imagine would be to take myself away from the family completely – but that could mean a separation of months, even years, and I don’t have that kind of time to spare. So… I’m grateful if my illness has remitted at just the right time. I can probably afford, to some extent, to take my chances. I’m deeply concerned for all the other myeloma sufferers I know for whom the timing is worse.

Of course, caveat coming, the downside of this timing is that its quite likely that the very moment the covid crisis abates, will be the moment my bone pain returns, and I will swap this reality for another face-off with death. But that’s even more reason not to wish away the time I have.

Part of being sick of lockdown is that you’re probably in no mood for philosophical exhortations from me. So I’ll duck the temptation. If you’re beginning to question what used to seem important, beginning to wonder if it’s ok to have no greater objective than to get through this with your sanity and good humour intact… then you are somewhere on the path I’ve been travelling for a while now.

Love to all – stay safe.

Categories Uncategorized

Daratumumab: results, side effects and the impact of Covid

I’ve been thinking quite a lot about my treatment in the last few days for a few different reasons so I thought I’d get it all down in a blog post.

I was back at hospital last Monday for my latest dara infusion. Slightly less worrying than the previous visits as the hospital seemed totally on top of everything covid related….and I suppose after my visits to two other hospitals for my broken foot, I’ve had to relax a little about it all (please see previous post if this means nothing….for some reason, I don’t think it posted properly). Anyway, I got my results on bank holiday Friday, and they were at 7.2. So up a tiny bit but pretty much stable for now. A lovely start to the weekend and another excuse for a glass of wine (hmmm, who actually needs an excuse in lockdown??)

Stability has to be a good thing while the world is such a precarious place, but with cancer treatment opening up now that the initial crisis has calmed a little, it is probably sensible that I keep on top of what my options are and the questions I should be asking of my consultant next time I am in touch with him. It seems unlikely now that my numbers are going to go down dramatically now so I need to find out:

  1. Are my numbers low enough that they would consider harvesting my stem cells without further treatment, and if so, would they be prepared to do that now? As far as I remember, and because the QE don’t give me chemo for this process (unlike when I had the process at the Marsden), the process wouldn’t lower my immune system and so doing it while covid is around, might not be an issue. It is a day treatment too.
  2. If my numbers aren’t low enough, what will be the next treatment that I am put onto and would that change depending on how covid-19 is impacting on life? I don’t think they would now put me on the DT-Pace that I was so worried about originally because it impacts the immune system too much and there are other options that are being allowed due to coronovirus. So, if they think I need to have additional treatment, I think I would rather have it now while Nick is at home and the kids are off school, than have it later down the line when they might decide DT-Pace is the answer after all! I’m also potentially having more side effects from the dara than before which I’ll mention later.
  3. Are Stem Cell Transplants on the agenda to come back? For a while, transplants have been seen as less favourable as ongoing treatment regimes due to the fact they are hugely intensive, make patients very ill for around 2 months, and can’t be guaranteed to work for everyone. Last time I had mine though I was lucky enough to get 8 years remission (for many, two is considered good!), and effectively be treatment free – whilst I had maintenance therapy, after the first year, it didn’t impact my life at all! So I’m interested to be clear that they will be used again. I’ll be absolutely gutted if this takes them off the table as I don’t want to be on chemo indefinitely.

The other main reason I’ve been thinking about my treatment is because I’ve had a lot of wrist pain for the last 6-8 weeks. At first I just thought that I’d been doing too much and that it would ease off. Unfortunately, that hasn’t happened and not only has it got worse, but my other wrist has also started to show symptoms too. It could be something like tendonitis or carpel tunnel syndrome, but when I looked up the side effects of dara, joint pain is one of them. And when I asked the myeloma forum that I’m on, a number of people who are at the same stage as me for the treatment, are having a similar issue. It’s pretty painful when it does hurt, so if I am going to be asked to change treatment, I’m wondering if now wouldn’t be a good time with the hope that this side effect might diminish. Along with my eye cysts. Bowel Issues. Bone weakness. And all the other things that can really get you down on a bad day!!!

As I said to Nick this morning, I try really hard to be positive most of the time and see things as being good at the moment where my treatment is concerned. But it can be really hard when I look in the mirror and see a fat, broken lady with cysts on my eyes and a feeling that there is little I can do about any of it. I think my eyes really depress me as they were the only thing I actually used to like about my appearance anyway. Anyway, I’m not too miserable at the moment but really need to sort out these side effects!

I can’t see them making any final decisions on anything until they have my next lot of results, but we’ve asked for the opportunity to talk through the questions above and see where we stand. In the meantime, I’ll keep busy doing work on the house and homeschooling (if that’s what you can call it!) the kids.

Thankfully Nick working at home means he can help with the numerous things I now have to bow out of with a broken foot and painful hands – he’s a gem as always. We actually celebrated our 18th Wedding Anniversary the other day which was lovely. We cooked together, sent the kids to the other room and had some quality time just the two of us which was fab. Oooh….and there might have been a bit of champagne and fine wine involved too – thought I’d share a couple of pics!

a change in the weather

It actually rained here the other night. We woke up to everything watered down. All the yellow pollen washed away. It’s cooler but actually nice. Today our high will be around 60 so okay.

Update on the Instacart order. It was great. I got almost everything I ordered and was really pleased. It is more expensive with a tip but I definitely thought it was worth it. I will probably do at least one more before venturing to Costco.

We did a very early trip into Home Depot since they wouldn’t do the curbside pickup for the gate post. We bought one farm gate for one driveway but needed the post. I don’t plan on keeping the gate close all the time but I want the option especially when we’re not here. Our driveway is weird as it splits and goes straight into where we park and then to the right back to the barn. No one can ever figure out which way to go.  I think we will do the second gate in the fall.

We’re also planning to put up some privacy fencing. The neighbors behind the barn moved up here from the Sacramento area and have a lot of crap we can see. So we plan on putting up around a hundred feet of cedar fencing along that border.  Then we want to do the same for where our elderly neighbor( Leo) lives since when they sell I fear who will move in will be rednecks with 6 kids. So I want a fence along the driveway to block seeing over there.

I’m also thinking of doing a bulk meat order from someplace like Butcher Box. It’s supposed to be small ranchers and grass-fed meat. Has anyone done that?  Usually, I get organic from Costco but thought about doing something different.

I bought a food sealer thing on Amazon that vacuum seals food. I tried a few things yesterday and it looks like it would be great for rice, meat, cheese, etc.  I tried bread and it squished it flat so that didn’t work. I then read the manual and it said to freeze the bread first and then vacuum seal and put back in the freezer. So I’m going to try that today too.

 The chickies have quadrupled in size and are now out in the big girl’s pen. They are still separated but soon will mix with them.  We’re going to have lots of eggs by next spring:)

We’ve been watching Ozark on Netflix and it’s a good show. Dark, but good. Sorta like Breaking Bad was. Oh, plus on Hulu the funniest, Stan versus Evil is hilarious. Definitely lots of laughs.

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another loaf of sourdough…

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this is what it looks like in the proofing basket.

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some chocolate chip oatmeal cookies.

More important news on vitamin D and coronavirus

On March 27, I published a post about some findings of a team from the University of Turin (Italy) showing that low levels of vitamin D might increase:

  1. your risk of being infected with Covid-19
  2. your risk of having complications if you already have the virus

The University of Turin data also showed that vitamin D can counteract lung damage caused by hyperinflammation.

Well, now a research team led by Northwestern University has found a “strong correlation between severe vitamin D deficiency and mortality rates.” Their results are based on data from hospitals in several countries, including Italy.

Incidentally, I got this information from an easy-to-read Science Daily article, which you can check out for yourself at this link: https://www.sciencedaily.com/releases/2020/05/200507121353.htm?fbclid=IwAR20hJJCU7d2WQj27sdIny3UgwYlrKZDlnR6gnbccXrBPiNu6QkSkspKQCk

So it seems as though vitamin D will lower your risk of having severe complications and of dying from the virus…once you’ve contracted it, of course. Here’s an important excerpt from the article: “Not only does vitamin D enhance our innate immune systems, it also prevents our immune systems from becoming dangerously overactive. This means that having healthy levels of vitamin D could protect patients against severe complications, including death, from COVID-19.

According to the lead researcher, vitamin D might actually cut “the mortality rate in half.” Wowsie!

Interestingly, the lead researcher also says that, while vitamin D “may reduce complications and prevent death in those who are infected,” it will not prevent you from actually getting the virus. Hmmm. That doesn’t make much sense to me. I mean, if your body has adequate levels of vitamin D, it should be better equipped to resist against the virus. But…who knows?

Anyway, whatever! I mean, even if vitamin D doesn’t give us the slightest protection from coronavirus, let’s not forget that keeping our vitamin D levels in the NORMAL range is absolutely essential for us myeloma folks. So let’s keep ’em in that normal range no matter what…

That said, please don’t exaggerate with your vitamin D daily intake: too much of a good thing may not necessarily be a…good thing, indeed, it probably isn’t!!!, as I have said repeatedly here on the blog. So please be careful…and don’t overdose!

I hope everyone is OKAY! Stay Safe!!!

P.S. That’s the photo of a flower from my garden…Nothing to do with the post, of course, but…it’s so pretty!

What Happened to my Life

5.10.20

Hello May

(I’m, writing this several days before posting, so not sure I will even post these thoughts…
Ok I will, as no-filter is my middle name :)

I shouldn’t whine and complain, but I’m just so sad…
I have so much to be grateful for, on so many levels, compared to so many, especially in these crazy Pandemic times, but I lost my life and future dreams long before CoronaVirus changed the world.

I look outside my window and see such beauty 

Beauty Jim and I created over 38 amazing years
Beauty we were supposed to enjoy, not be challenged by
I look outside and see our past, our current, and wonder our future
I see Blue skies, green trees, green lawn, happy plants and colorful flowers
His roses, so loved and cared for, now “my” roses needing “my” care
So much upkeep to keep everything beautiful, alive, thriving, clean

I look outside and see my horses hanging out in the sun, swishing flies
I see my horses there, just there, and I remember the life we used to have
I see my horses out there, and remember the times I could “just go out there”, just ride, just hang out with them, hang with the kids and adult friends, minus medical challenges
I look outside and see decades of TLC invested in our ranch
I look outside and see how much there is to appreciate and enjoy
I look outside and realize how much I cannot do any more
I look outside and realize how limited I am
I am just so depleted, so exhausted mentally and physically
I realize how much Myeloma has limited my life
Limited my ability to do and enjoy as I used to, as I always envisioned I could and would

I look outside and know I must continue on for the humans and animals that count on me, rely on me for Everything…
I know how much Myeloma (and Alzheimer’s) has changed me now
I’m not the girl that started writing this blog in 2010

Physically, my head hurts
The base of my neck hurts
Headaches are non stop
When I sleep, I feel like my head is made of cement, and I am sleeping on bricks
I dislike taking pain meds as I’ve always tried to work thru pain and I worry about the additional impact on my vital organs
But I’ve had to take Tylenol, Advil several times a day just to take the edge of the pain, just to do the minimum, of the maximum I want to do
Dex Steroids Save My Life! They relieve so much of all of this. Today I feel ok, finally, I don’t hurt so much. Dex Steroids Save My Life on so many levels.
Remember… Myeloma Hates Steroids!

But my immune system is always so low, stealing all my energy and dreams of doing and the things I want to do, and all the things I saved for “later”, for when I retired, and thought I would “own my own life” … ha! Such a stolen life in so many ways…

My treatment crashes last longer now, and I am spending more time in bathroom with surprise side effects. I hate GI side effects, I hate pain, I hate living wondering what will happen each day to me that Is Out of My Control. I used to be so healthy. This makes me so sad. I used to be so healthy. What Happened. Why did my body sabotage me? Why me? Why was my life stolen from me? Whine Whine Whine, Sad Sad Sad…. I seriously ask for so little, want so little, just want to enjoy nature and our home and our animals, and all the humans in our life. I just want to enjoy life pain free. Is that too much to ask. I’m tired. Tired of being tired. Sick of being sick. Done with Challenges… ok Julie, shut up and move forward. I know, I am very fortunate! Going on 11 years with Myeloma, and I am still functional on many levels…

So 5.10.20 was Mother’s Day, and I hope all my Momma friends and followers had a wonderful day celebrating YOU and all that you have done for others as a Mom. Yesterday was a bit sabotaged for me, as Jim’s brain functioned on a more active level yesterday morning, and at about 6:50am our house alarm started SCREEEEEECHING, abosolutely scaring the $#!% out of me. I jumped out of bed begrudgingly as I wasn’t sure what I would be finding in the family room, where Jim sleeps in a chair… that’s another long story I will tell if you’d like to hear…

Long story short, he had gotten up all by himself, walked to the door a few feet away WITHOUT his cane or walker, and opened the door a little bit, setting off the alarm. Most of me wasn’t happy, as I’m soooo very sleep deprived, part of me shocked at his mobility, a little bit of me was incredulous and happy for him. But the part of me that is sleep deprived, achy, tired, hurting, frustrated, etc, and a Cancer Patient that never really gets the “luxury” of “being a cancer patient”…  reacted in a not so “adult manner”. I let him out alone, and said sarcastically…. “ok, you woke me up early, scared the crap out of me, and here you are, with your brain telling you it’s time to get outside and feed the horses, just like you used to”…. “Great for you Jim, if only this was real…”but I’m not going out there at 7am!” “Gooo, just go if you want to, since your body is so ok today”, good for you”… Happy #%&#! Mother’s Day to me”! I sighed, cried, and started to video his precarious walk out to the horse corral. Not his fault, he can’t help his brain-body sabotage either. I hate Alzheimer’s more than I hate Myeloma…

Yes, bad me… but I’m sure y’all can understand my frustrated, overwhelmed, exhausted emotions.

So I filmed him as he slowly, actually somewhat solidly made it to the horse arena, where THANKFULLY our gardener (who I’d hired a few years ago to help with the early morning horse chores, was already out there with his helper), noticed Jim, and immediately went to him. I could tell how shocked he was! I knew he was looking for me or Jim’s caregiver, but we were no where to be seen or found LOL. Eventually Antonio came to the porch and got Jim’s walker, and Jim safely made it back to the house, thank you Tony! Me, still shocked, frustrated, happy, sad, a bit angry, so I had a meltdown with this in my face reality of all the challenges I must deal with daily, with my cancer situation, and Jim’s Alzheimer’s. Maybe I can upload a video from this insane brain event. No doubt, Jim keeps defying the Alzheimer’s odds. I’m happy and so sad for him…

I have a BIG DECISION oncology appointment Tues, May 12, so I will let you know my current Myeloma lab status and what decisions my Dr and I come to regarding changing up my chemo regimen next week. Did I mention that last week I only did the 40mg Dex steroids and 400mg Cytoxan Cyclophosphamide. And Monday (today), I only did 40 mg Dex steroids, as my Dr wanted me to “clear my system” for the new regimen of Elotuzumab Emplicity and Pomalyst…
Oh boyyyyy, here we go…. Ughhhhh

Ok, I will update you on my next post, 5.20.20
Lots going on, chemo changes May 18, MRI coming, head skull neck pain from myeloma lesions, tumor, mass…. oy!

Thank you for reading and caring and posting hellos :)) Stay well and strong on all levels. It’s a job, isn’t it :))

Categories Uncategorized

Frugal Friday

We didn’t walk this morning. I just didn’t feel like getting up and going right out.  Kinda weird. and definitely not me. Oh well, it’s good to mix it up some.

I had applied for the Covid-19 LLS grant of $250. I received the Visa card and used that for groceries so that was a huge saving.

I am getting my first Instacart order today. I’m supposed to keep my phone with me so I guess I’ll turn on the ringer so I can hear if the shopper calls me. I’ll update once I get the order and let you know how it is or was. It definitely was NOT frugal and there is a tip which I hope was enough. I’m guessing they get paid to shop and gas so the tip is on top?? Anybody have an idea about the tip? I did 10%which was hefty.

Our county( Placer) is opening up certain things soon. I’m against opening anything too soon and won’t be going out to stores. I canceled my gym membership as I can’t see myself going back before next year or whenever there is a vaccine.  I’m not a shopper so except for Target, Home Depot, and the store I don’t really go into stores. So I’ll keep doing curbside pickup.

I made a yummy pasta salad for dinner last night with grilled chicken, bowtie pasta, artichoke hearts, olives, and a salad mixed in. It was good. I always leave the chicken on the side so B doesn’t get it in his. Tonight is supposed to be pizza night but I’m going to use stuff from the freezer. I have one frozen pizza and maybe do some bruschetta with tomato on the side. I’m trying a different No-Knead bread recipe today. It’s the NYT one. So far I’ve done the King Arthur one and the original Jim Leahey’s. They’re all basically the same but a little variation.

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The Cecil Brunners are amazing this year. They always come out for Mother’s Day.

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Another view.

 

Enough Bad News, Some Great News For #Myeloma Patients!  The Myeloma Miracle Continues!

Picture

With the challenges of COVID19, it becomes hard to remember the wonderful improvements seen in myeloma over the years, and the critical part the leadership of myeloma scientists, specialists, advocates, drug companies provide and the remarkable work of the FDA and its Orphan Drug Designation, without which orphan drug progress would have languished, as it had for decades.
In September of last year I wrote the blog post(CLICK HERE) outlining how all myeloma drugs in the last 16 years had two FDA designations for each approved drug. One being an  Orphan Drug Designation,  and the other being Fast Track, Priority Review, Breakthrough, etc.  Remember there are more than 6000 orphan diseases and majority of these diseases have not one approved orphan drug.  Myeloma patients should feel blessed to know they have had 10 new drugs approved in the last 16 years.  In addition, Myeloma (an orphan disease) has  7 drugs which  all had two FDA designations, but have yet to be approved.  These drugs include the following:

Drug                             Company                 Designations      Description

AMG420                        Amgen                        OD&FT          (BCMA) Bispecific T-Cell Engager
                                                                                                (BiTE®) Antibody Construct
CLR131                         Cellectar                      OD&FT           Radiotherapeutic phospholipid drug

                                                                                                 conjugate (PDC™)
GSK2857916               GlaxoSmithKline           OD&BT          (BCMA) antibody-drug   
                                                                                                 conjugate (ADC)   
bb2121                          Celgene                       OD&BT          BCMA chimeric antigen receptor
                                                                                                 CAR T

Galinpepimut-S              Sellas                          OD&FT          Immunotherapy vaccine to elicit a
                                                                                                 strong response against WT1
P-BCMA-101                 Poseida                     OD,FT&BT      Autologous chimeric antigen receptor
                                                                                                 (CAR) T-cell therapy
Melflufen                        Oncopeptides              OD&AA         Drug activated by aminopeptidases,

                                                                                      overexpressed in myeloma
So how have we fared with this list?

AMG420 – has dropped from the list in favor of a kinder gentler similar drug called AMG701, however AMG701 has only one FDA designation.

All of the other drugs on the list are progressing very well, with GSK2857916 and bb2121 expected to be approved in the next several months. 

For the first time in 16 years,  two new drugs have been approved without dual FDA designations. However, one  is another  CD38 antibody similar to Daratumumab called Sarclisa® (isatuximab-irfc) by Sanofi for patients with relapsed refractory multiple myeloma.  Another approval is subcutaneous Daratumumab called Darzalex Faspro.

In addition we must add two more to  the list of candidates with two  or more FDA disignations. 

Drug                             Company                 Designations      Description

JNJ-4528                         Janssen                    OD&BT              CAR-T with two BCMS-targeting
                                                                                                     Single domain antibodies

CT053                             CARsgen               OD, RMAT*          A fully human anti-BCMA CAR–T                                                                                                         Therapy
* The RMAT designation is given to regenerative therapies intended to treat, modify, reverse, or cure a serious condition.  

Other drugs which already have an orphan drug designation and have the potential to obtain another FDA designation include: Amgen’s AMG701(replaces AMG420), Molecular Partners MP0250, DARA BioSciences KRN5500, and SUTRO’s STRO-001. 
Historically each approval of a new class of drugs (eg. Imids and Proteasome Inhibitors) have added a year or more to myeloma  life expectancy, so approval of these drugs could double the current myeloma life expectancy.  Now that is GREAT NEWS!

Good Luck and May God Bless OUR myeloma journey. For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1                                                                                     


BE SAFE! #COVID19 & #Myeloma, All We Have To FEAR is the LACK Of FEAR Itself!

Myeloma patients in general have a higher risk of infection, which is 7 times that of the average person.  It is because of this we take special care to be on top of any infection.  I have written about this in the past.  CLICK HERE for the link.  I always have Tamiflu and an antibiotic Z-Pack for whenever I get a fever.  I have had pneumonia three times and gone septic once.  This combo has saved me so very many times.  However, COVID19 has put a whole new level of FEAR into the equation.  Before the flu vaccine or antibiotics for secondary infections were developed, the Spanish Flu resulted in the death of an estimated 50 million people worldwide, and 675,000 deaths in the US.  With the development of the flu vaccine, antibiotics, and antivirals, the typical US flu season now has just 34,000 deaths in the 1918/19 flu season. The new level of fear for anyone over 65 is outlined in the following graph.
 
However, myeloma patients have many other complicating factors.  People with commodities like cancer, compromised immune systems, Diabetes, Kidney Insufficiency, Heart disease  etc., have an even higher likelihood of death at over 30% as seen in France and Spain.  A recent study of cancer patients with COVID19 in NYC has shown hematologic malignancies were associated with a higher rate of mortality of 37%.  During the shelter in place order, it is imperative to take extra care to be safe.  Shop by curbside pickup, wear a mask, social distance,  wash hands, hand sanitizer et. al.  These efforts to be extra careful by myeloma patients and the government limitations and their policing, I believe have been able to keep our infection rate lower.  Our fear of getting an infection with no known FDA approved treatment has been a motivator for a SAFETY FIRST mindset. So why should we Fear the Lack of Fear Itself?

It is because not everyone is on the same page and do not social distance, will not try to move aside on the sidewalk, do not wear a mask in grocery and drug stores, or are younger than 44 and feel bullet proof and feel no social responsibility to protect those at high risk.  I will set this up by posting a few headlines which highlighted a need for a new heightened vigilance by the myeloma patients. 

California Governor Newsom announced a “hard close” on all beaches and state parks in Orange County on Thursday, after news photos circulated showing people not following social distancing guidelines over the last weekend of April.

Governor Gretchen Whitmer of Michigan says heavily armed men and Confederate flags at state capitol ‘depicted some of the worst racism and awful parts of our history’

‘Devastatingly worrisome’: Dr. Deborah Birx decries scenes of protesters not practicing social distancing amid coronavirus

I see and experience this lack of compliance in everyday life even under restrictions, just think what it will be like when they open up the economy with relaxed restrictions.  My appeal to you is that YOU must look after yourself, because with COVID19 a good defense is the only defense.   Until a vaccine is developed or a cure is found, our best  way of surviving COVID19 is to make sure we do every thing we can to stay virus free. 

Continue to Shelter in Place or Self Quarantine to protect yourself!

If you do have to expose yourself to the public then please follow the recommendations outlined in the following Wall Street Journal article.
Safety Advice for Reopening: How to Reduce Your Risks as Coronavirus Lockdowns Ease.  As businesses reopen, we asked public-health experts for guidance on venturing out.  CLICK HERE to view.

Dr. Landgren of MSCC has outlined what one of the best cancer centers in the world does to PROTECT the patient and you can hear the broadcast if you CLICK HERE.  Some of the safeguards include all patients are tested for COVID19, and based on your results you go to a COVID area or COVID free area, all patients and care personnel wear masks, visits are limited, all oral protocols are considered, and many more recommendations.  In addition, Mayo Clinic has recommendations coauthored by Dr. Morie Gertz and you can view them if you CLICK HERE.  

Good Luck and May God Bless OUR myeloma journey. For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1