Myeloma Blogs

by

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

Reaching out to all MGUS, SMM, MM patients and caregivers

by

Last week I was contacted by Stephen Quinn, a Ph.D. student at Queen’s University in Belfast. He informed me about a study called IMPaCCT whose intent is to look at the effect that the current Covid-19 crisis has had, and is having, on pre-cancer, cancer and rare disease patients and their caregivers. The researchers, which include Stephen, hope to be able to use this data to inform patients and caregivers, as well as publish their findings in scientific journals.

He asked for my help in reaching out to smoldering myeloma and MGUS patients. Of course! So, how can we help? By taking their online SURVEY. I am about to do that, in fact. It should take about 20-30 minutes. No big deal, if we can help others, right? So please do it!

Here’s the direct link: https://www.surveymonkey.co.uk/r/IMPACCTsurvey?fbclid=IwAR0JwWQPa8Md6VjJ_3KBCDBGGdZEClXB77SqK348s7Gh-hDbEns9_B7qgE0

Please note that if enough people respond to the survey, this Queen’s University group will be able to provide pre-publication information to charities/groups so that they can better support their members during these challenging times.

So this is really important. Please take the survey! Thanks, everyone! 

Friday Stuff

by

I’m sure that Frugal Friday works anymore since groceries are much more pricey and I’m still buying to build up the prepper pantry.

I added some Bob’s Red Mill polenta to the pantry in the vacuum seal bags. Also in the Costco home delivery order got the 2 pack of Lemon Juice, Rosarita beans, and a case of their corn. I have a Costco Instacart order ready to go but will wait till next week.  That way that will take me almost into June. Oh yeah, they had SAF instant yeast and I also got some really nice powdered cocoa for baking.

 

For the prepper pantry, I’m making a list of dinners that I could put together from what I have to see how many months/weeks I would have. I have some combinations of dinners we eat normally like beans, tortillas, salsa, pasta with sauce, rice-based meals.  Mostly, I’m trying to have meals that we normally have so things aren’t weird like Spam for dinner:(  From the freezer, I am adding some meals like chicken, or organic beef, but that would really be stockpiling unless I bought a 1/8 of a cow from a farmer. If I knew someone that did that I would consider it. Right now, I’m good with Costco’s organic ground beef and chicken.

In other news, Barclay is continuing to have GVHD with intestinal stuff and skin rashes. His doctor ordered a new drug call Jafaki.  The drug is enormously expensive and the co-pay was coming in at $1500. a month. ahh, there is no way we can pay that now we are on a fixed income with no extras coming in. Our Medicare prescription plan had it for slightly less. So he talked with the financial coordinator and UCD Medcenter gave us a grant for $7000 that is JUST for the Jakafi. Let’s hope this does the trick.  Tomorrow is his 1-year re-birthday and I would really like to have the GVHD be gone. Well, I guess we will see but at least we’re not going bankrupt from a drug cost.

Today we walked and it was refreshing. I have the pizza dough ready to go in the bowl. I also cut up a whole bag of Vidalia onions to freeze.  Last week I made the mistake of trying to make a larger pizza and it was not good. It was too big for my pizza steel and was a mess. It tasted fine but it was falling into the oven because it was too big. You’d think I’d learn:(  So this week it’s back to 2 pizzas.

I just finished reading Adam Savage’s ” Every Tool’s a hammer”. He’s the guy from Myth Busters.  Quite interesting.  Check it out.

 

 

Hello Elotuzumab and My Ol Friend Revlimid

by

5.20.20
Hello Friends-

So much to share, and of course today is Crash Day from Monday’s New Treatment Regimen, so I’m feeling new and different side effects, ugh… Also just as I was beginning this post, I received new (shocking) lab results from Monday’s pre-infusion blood draw. Didn’t know they were running my IGA, Beta2, along with the basic CBCs, etc, prior to my new treatment infusion, but glad they did as a baseline…  Thank you for checking in and caring as you do!

Ok, here we go with the new treatment story:

Hello my new Myeloma killer- Elotuzumab!

Hello new Infusion friend to pummel Myeloma

Hello again, my ol friend Revlimid who originally saved my life
after my December 30, 2009 IGA Lambda Myeloma diagnosis.
Was on Revlimid 2010 before my July 2010 SCT,
Then low dose maintenance 2011, 2012
Took a break summer 2012 to summer 2013,
Then back on 2013, 2014, early 2015
Until I became “Refractory” to it, and switched
to Kyprolis…

So basically my Myeloma is trying to rage again. I am such an “under reactor” and naive optimist, and always think things will just magically be ok, or that my myeloma diagnosis was a mistake. Until I get slapped in the face with reality in the form of lab results. Well I’ve received several wake up calls in the last week, along with side effects that just won’t go away. All these I have been denying away for quite some time now. 
I had a CT scan back in January, and it was noted that I have a new “mass” in my Right side skull. It measures 36 x 37mm. I think I even posted about it then, but with my husband’s complicated Alzheimer’s situation, and then the rise of Corona Covid, I ignored my news and hoped it was all wrong, or again, would just magically resolve itself. Well, as my headaches came and went with varying degrees of intensity, I just couldn’t deny something was up in my head. I had intense headaches back in late 2019, early 2020, but associated it with the crazy “head colds” I had on and off in Dec, Jan, Feb. I even had a CD disc of the CT, but I can’t make heads or tails of the data, and it all looks like outer space meteors and aliens to me. It wasn’t until I met with my Dr last Thursday, and she was able to locate the written report and print it out for me, that the reality of this monster growing in my skull, hit me. And it’s continued to hit more and more each day, along with the increase in IGA, Beta2 and M Protein levels. I can’t deny my status anymore, and I can’t just “hope” it will all be better, and disappear… Here are my realities and wake up calls: 
Wow, a 500 point jump in just 10 days!

Up up up…

So Monday was the first of my new treatment triplet of Elotuzumab/Emplicity, 28mg of Dex steroid pills at home, along with another boost of 8mg of Dex steroids via IV with the Elotuz infusion, along with 50mg of Benadryl, along with 2 pills of Tylenol, I think a total of 500mg, and some Pepcid. Then I take the 10mg Revlimid pills daily (at night) for 21 days, just like years ago. Basically all went ok with the first infusion. I did have a slight stuffy throat reaction very briefly, but we slowed the flow of the infusion, and all was ok. As I have posted before, I love the up up up buzz I get from the Dex steroids, along with the relaxing sleepiness of 50mg of IV Benadryl, along with the time I am at the chemo lab “just relaxing”, no one needing me,… so treatment days for me, are actually rather pleasant lol. But I know the crash is coming, so I do mentally prepare for that. Late Tues, into Wed is a struggle, but by mid Thursday, I begin to feel a lot better. I’m very fortunate I respond well to steroids, and don’t have the horrible reaction many do. Well, some weeks I do. Some weeks it’s harder on my stomach than others. I have associated that the lower my WBC, the less dramatic UP I have. 
Here we go
back to IV infusions
Lucky me, room with a lovely view
Anyway, I have scheduled the recommended MRI for early June, to further look at the monster growing in my head. I am still uncomfortable with the Gadolinium contrast used for the scan, but I guess I will just have to take my chances, and hope I don’t have some crazy allergic or kidney reaction. 
Please let me know if any of you reading this have had a negative experience with the Gadolinium contrast dye with a MRI… Ugh, I just don’t want to deal with another challenge… 
I’m just so sad Myeloma has consumed the last ten and a half years of my life, and the reality is, will consume the rest of my life, just trying to stay alive and deal with all the side effects and body deterioration. A mass in my skull, head is kinda scary. I’ve been allowing myself to think more about this reality. Radiation to the head, brain is a bit scary… Don’t want to lose any more brains than I already have…
Hoping this crazy life isn’t too crazy for you, during these crazy crazy times! Thank you for checking in and caring about my story as you do. I appreciate all your comments, and you sharing your story here with me and everyone else.

Jack and Nala
2 of our “support staff” :))

Thunder and lightning, oh my!

by

We had a huge rain cell come thru yesterday in the afternoon. There was thunder( a lot) and lightning, hail, and torrents of rain. Quite the spring storm. There was snow in the Sierras which is not that unusual in normal times. Well, everything is soaking wet.

We just got back from a nice walk. I wanted to do another round but nature was calling or maybe it was my cup of coffee so we left. But it was really nice and fresh out.  All the geese families are getting big.

Our chicks are getting big too and the others seemed okay with them but the 2 Auracana are being mean to the black one so we’ll need to see if we have to separate them more. It’s a pecking order but they can do harm to an outed chicken so we don’t want that.

Barclay has labs today and then a video conference. This time last year he was in UCD med centers Bone Marrow Transplant Unit getting chemo conditioning for the actual transplant. A whole year has gone by, wow.  Except for ongoing GVsH intestinal stuff he’s doing well although still too thin.

Then tomorrow he has to go down to UCD med center for a urology appt with a new guy. My daughter has volunteered to drive him down. It shouldn’t be a long wait and I suggested she pop over to Corti Bros. We could use some Mikes Blend meat for chili or burgers. I made the burgers with the Crowd Cow burger meat and it was good. I’m not sure I’d say exceptional but I’ll wait to make a final evaluation after I make the chicken and the one steak I bought.  It was delivered quickly and with dry ice, so that kept it all frozen.

We’ve been having game night on Wednesdays and here’s one of the games that is hysterical to play.4839DF99-8862-4F19-A414-BF84DD9E2496

It is not for children so be aware.

This is one of the cards that I thought was beyond funny.

3A9A6A78-9951-42EF-98C9-7C4692ADF695

too funny:) You kinda need to be where we are to appreciate it.

We’re planning to do take out Mexican tonight. The first time in 3 months. Hope it’s good and safe:(

Oh, and our idiot president is taking Hydroxychloroquine.  What a complete idiot. How can we even have a president that is so stupid? It is beyond me.  Good grief, Charlie Brown. Vote Blue, no matter who so we can move on to some sense of normalcy. Or at least someone who isn’t a third-grader.

 

Costco and Dr. Stangelove

by

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

by
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.

Daratumumab: results, side effects and the impact of Covid

by

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

by

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.

0549BDC2-D161-4917-B82A-31977A1359F9

another loaf of sourdough…

D486FB66-B96E-479C-9CCB-576761D5A87D

this is what it looks like in the proofing basket.

4F384465-E201-4BCD-9209-9BA2BDD3C494

some chocolate chip oatmeal cookies.