Myeloma is Too Smart and Currently Winning :((

4.30.20

Hello Everyone-

Hoping all is good with all of you during this new new new normal we are all experiencing. The spectrum of affect is so different for everyone, depending where you live, what your living circumstances are, what your work, home and family and life is, what your medical situation is, etc. As I have written before, not a whole lot has changed for me, as I've lived quite the isolated immune compromised life for more years than most people could tolerate. Main change for me, is lack of availability of common household products I used to order easily online, and of course the worry of coming in contact of that sneaky stealth coronavirus.

I have a phone consult with my Dr today, and suspect she will again want to discuss changing up my chemos, as Myeloma is again outsmarting our triplet concoction of Dex steroids, Velcade and Cyclophosphamide. As I have mentioned a zillion times, my main concern with changing treatments is my fear of new side effects. I'm just so tired of 10+ years of not feeling well. Just so exhausted from weekly medication crashes. Just so beat up from being sick for so long. Yes, just sick of being sick. I feel so beat up right now, as I've been doing too much around around my house and yard with Jim's situation, and I had a terrible GI crash late Tues, early Wed from Monday's treatment. Was on the pottie til about 2am, finally showered around 2:30am. When Jim's caregiver Chris came in the morning, I went back to bed until around 3pm Wed. Still feel so wiped out (no pun intended lol)

I'll post screenshots of my labs after our phone appointment, but I did see my IGA and Beta2 Microglobulin the other day, and both are way above normal. IGA is over 1740, and Beta2 over 2. Normal for IGA is 70-400, so that puts me at over 4x the high end of normal... been there before, so I'm not in a panic about it, just sad this treatment is now becoming ineffective, but to be expected by now. I'm still very appreciative that it lasted as long as it has, since Sept 2018!

5.1.20 UPDATE

Ok, here are my most recent Lab results:

IGA

Up up and away...

M Protein up up up

Beta2 Microglobulin

Up up up

Sooooooooooo.... after seeing these results...
You can imagine how the conversation with my Dr went with my increasing lab stats. She is very vigilant, and not wanting to let my levels escalate any further...  Me, I would wait to see if they would magically come down next cycle, or wait until my IGA is over 2000. Stupid, yes. Scared, yes. Not wanting this news, yes. We discussed the reality of my situation with the myeloma increasing, the length of time I have had myeloma, the amount and types of chemo and immunotherapy treatments I have already been through for over 10+ years, and what remaining treatment options are available to me. Yes, I must move forward and accept that my current triplet treatment is no long effective.

I'm still processing everything, but my situation really hit me yesterday, and I had a mini meltdown but eventually pulled myself together as I always do. I'm still very sad today. Guess I still live in a hopeful, too optimistic, dream world, that my Myeloma will magically be in control, and I can go forward with my life, and pretend I am ok. I still hope each morning I will wake up, and Jim will be his ol self again, and I will be ok, and we can can back to our pre-illness life. I really don't want much, I just want to feel good and have functionality. Yes in the BIG PICTURE OF THE WORLD RIGHT NOW, I am very very fortunate, and I know it. I just miss my old life, and I miss all the potential things I had planned on doing in this chapter of my life, had I been well, had we both been well... oh well... forward march Julie...

So THE PLAN...
I accepted my fate reluctantly, while pleading and negotiating no drastic medication changes. Ha Ha! I never want to NOT be on myeloma pummeling meds, no matter what. I know my Myeloma, and know how aggressive it is, and know that left UNtreated.... it escalates FAST! Even in the end... I will do Dex steroids to feel ok. So my Dr recommended we stop my current triplet of Dex steroids, Velcade and Cytoxan and MOVE TO Elotuzumab Empliciti https://www.empliciti.com/ with Pomalyst https://pomalysthcp.com/triplets  and Dex.

She told me a "transition period" is needed to clear the current meds out of my system, which makes sense, and to just take the Dex steroids for the next 2 weeks. But that scares me. Just Dex... there you go myeloma. Free ride to take over... We would then have an in-person appointment, second week of May. I again mentioned how my numbers have rollercoasted over the last 10 years and I wasn't too too worried about the levels now, and could we just go another month, and see what happens, blah blah, me thinking one month will do something magical, blah blah, ha ha...  Nope, she's worried about the upward trend, and doesn't want to wait to see what might happen, and actually, no point in waiting, the trend speaks for itself... Ah, yes... my numbers speak for themselves... Ok, ok, here we go... cccchhhhange...

So we will drop the Velcade starting now. My last dose was this past Monday, and I'm pretty proud I tolerated it to shot #80! Yes, 80 shots of Velcade. 80 weeks of Velcade! Go me. I have had a bit more Neuropathy in my feet lately, so perhaps this is the best decision.

The New Plan:
I will do Dex and Cytoxan (Cyclophosphamide) on Monday May 4th, without the Velcade. This will be my last dose of the 400mg Cytoxan pills. Then the following Monday, May 11th, I will just do the 40mg Dex steroids. Then Tues May 12th, I will meet with my Dr to discuss the new plan of Elotuzumab and Pomalyst, to begin on Monday May 18th.

Not happy myeloma is once again winning, but grateful I have options.
Scared of new side effects, but sadly used to it.
Tired of the whole thing, yes, but I won't give up yet!

Beautiful sunset view from my backyard the other day :))

Yes, I am still very very fortunate...

Jim's roses are so beautiful this year!

Thank you for reading and caring about my crazy myeloma story. Stay well, stay away from all the cooties and I hope your life is less complex than mine!

4.20.20

Hello Friends,

Hoping everyone is staying safe, well and away from all the Cooties! If you're a Myeloma patient, I'm guessing CoronaV has not changed your life as radically as for a "well person", right? We've been "sheltering in place", "quarantining", living in our "protective bubble", avoiding cooties and germs since diagnosis/chemo, because we're so Immune Compromised! Myeloma and treatments have forced us to be ultra aware of cootie cross contamination, so we clean and sanitize everything and everyone always! We were trending before all the current trends!

Remember this game!

Nope, my life hasn't drastically changed because of Covid19. If you've been following my 10 year story, you know my lifestyle and challenges, and my philosophy of "self protection". So all that has drastically changed for zillions of the "healthy population", hasn't really changed that much for me. Yes since my Myeloma diagnosis, I've limited my life more than others probably would, but hey, it's worked for me for over 10 years, and I haven't been super sick beyond the annual bouts, haven't been hospitalized, and haven't had Pneumonia.  

BUT that raises a Very Interesting point, that the news is all a chatter about.... COULD WE HAVE BEEN EXPOSED TO, AND POSSIBLY EVEN HAD CORONAVIRUS/COVID 19, sooner than we were aware, before the announcement of a "Pandemic"? I think back on how I was sick off and on late Dec, Jan and into early Feb! I remember feeling a strange sickness, but I would always rebound in time for my Monday's steroids, Velcade and Cytoxan. Yes, the steroids would always mask symptoms, and I think that was probably part of the problem of getting and staying sick for so long. I just kept pluggin along, because I have to... I really wasn't awful until late January, when I finally wound up with a fever for about 4 or 5 days. I remember early Monday morning, before the 40mg steroids kicked in, I felt dizzy, light headed and not well at all. Then the steroids kicked in, and I rebounded. But I bet I was getting sick then, as next day, late Tues night, early Wed I developed a fever, and it was downhill from there for the rest of the week.

I remember being surprised I didn't have a lot of nose congestion issues, or chest congestion, but I did have a never ending awful headache and cough. Probably fractured a few ribs coughing so much. So many other random symptoms too. I also recall using my inhaler that I rarely, if ever used. Would be really crazy if I actually had CoronaVirus Covid 19!! There are so many articles and posts about it, I'm sure you've read it too... Guess I won't know until a reliable Antibody test comes out.

https://news.usc.edu/168810/usc-covid-19-antibody-researcher-answers-questions-about-testing-in-l-a-county/

https://www.usatoday.com/story/news/factcheck/2020/03/26/coronavirus-fact-check-could-your-december-cough-have-been-covid-19/2899027001/

Well, aside from CoronaV, things escalate daily with my Alz hubby. Tragedy beyond words... but I don't feel like whining about that right now... well I do, but I won't :((

I'm suspecting Myeloma is rearing it's power again, as I have symptoms that remind me of initial diagnosis and other years when my IGA and M Protein escalated. I am tired and fatigued all the time, but just keep going, cuz I don't have a choice... I have more headaches, neck pain, bone pain, etc. Hate hate hate the awful headaches, neck pains, etc. Which reminds me that I am supposed to go for another head scan... I think I had another lytic lesion(s) my Dr wanted further looked at... so much has happened 2019, 2020... I just can't keep up with it all... I have a phone appt on the 30th, so I will ask then. Maybe I will email her sooner, as I the headaches last week, and especially this weekend really revved up. Steroids today lessened the intensity thank goodness.

So I've been thinking about what treatment protocol I would try next, when my current 40mg Dex, Velcade and 400mg Cytoxan-Cyclophosphamide stops working. I've thought about asking my Dr if we can go backwards and try combos of previously used chemos. As you know, I am so scared of new meds because of I am so scared of new, unknown side effects..

https://www.myeloma.org/multiple-myeloma-drugs

Here are some other good links of things I've been thinking about...

https://www.myeloma.org/videos/askdrdurie-it-okay-take-vitamin-b12-same-day-velcade-0

https://www.myeloma.org/blog/dr-duries/are-women-risk-myeloma-if-they-sit-too-much

https://www.myeloma.org/cure-blog/future-looks-bright-including-cure-myeloma

LOL LOL

Take care everyone, and I hope you and your loved ones are all doing ok in your "safe at home" bubble. Please let me know how you are, and for my Myeloma friends, please let me know the various treatments you've been on, and any recommendations you have for my next step!

Yep, I've Been Saying It for Years! :))

4.10.20

Hello Everyone!

Hope you are staying well and CoronaV free. There's so much to say about the craziness in the world right now, but I know you are reading and watching what I am, and you know what I know, so no need to rehash it all here :))

BUT, I will say (with a big smile...) all the sanitizing guidelines and new epiphanies about cleanliness and not cross contaminating cooties between everyone, continues to crack me up. If you've been reading this blog for a while, or know me personally, you know what I've been saying forever about "air hugs", "air shakes", wash your hands, don't cross contaminate, etc etc etc etc.... right :))))

BUT what I loved most this week was Dr Fauci recommending NO MORE HAND SHAKING! Wellllll duh world!!! If you think about it, what really is the best guarantee of transferring germs? Yep, Dirty Hands! Again, sorry, not sorry, haven't I been saying this for years and years and years. OMG if everyone would just use common sense, I don't think we'd be in the situation we're in. Keep it clean, and keep yo self clean!

fauci-perfect-world-americans-stop-shaking-hands/story

coronavirus-lifespan-on-surfaces-graphic

I wasn't an OCD cautious cleaner all my life. In fact, I've always worked with students and the public, and always lived with, and been around many types of animals all my life. I used common sense, but I never had antibacterial wipes in the barn when I was young. I never sprayed surfaces (and people) down with Isopropl Alchohol in my early life. You know when all my super smart and careful cleaning began? It began when my son went thru the "reptile stage", and we acquired Iguanas, Snakes, Turtles, a Tortoise, etc. Reptiles are known for Salmonella and eColi! We just used common sense;  washed our hands after handling the animals, and their cage. Thinking back, I shared carrots and apples with my horses (well I did take the first bite). didn't always wash my hands when eating around them, and when my kids were little, they crawled around and played in the dirt. We were a very healthy family, only the "normal" amount of colds and flu when they were growing up. 

So if I was so "healthy", where did my Myeloma come from? Probably from all the chemicals I was exposed to. Horse fly spray, grooming sprays, things my husband sprayed around our property before I banned them, lol, dirty smoggy air, chemicals in things and foods, etc. But germs, I was aware of them, illness and staying well, but nothing like what's going on now with CoronaV, and being on chemo. 

All else is status quo with me. Same compromised immune system since my last post, and same Myeloma numbers. Everyone asks me what I plan to do with my increasing Myeloma status. Well nothing right now. Can't handle another challenge right now, don't want to deal with new side effects of new chemos. How high will I let my IGA and M Protein go until I brave up and do something? I don't know. Been super high before, and I'm still here. Been up and down a lot over the last 10 and a half years. How High will I Let my IGA go... hmmmmm.... good question... I'm just living one day at a time, staying away from most everything and everyone, and trying to be ok physically and mentally... just like everyone else. 

Just loooove Kaiser's screening protocol

Keeping all of us safe and healthy!

My super amazing, incredible, wonderful 

Kaiser chemo nurses!
I gave them "Corona" chocolate :))

Stay well, stay safe, take care of yourself and your loved ones, and appreciate anything positive that comes your way!

https://themmrf.org/2020/03/multiple-myeloma-and-the-coronavirus/

And for my Myeloma buddies, I'd love to know what chemos, immunotherapies, protocols you're on, or have been on, and your success, side effects, time line on them, etc, so I can get an idea of what might be next for me. I read about all the options, but it's great to hear personally from those that have direct experience with specific treatments. Thank you for in advance for sharing :))

Until next time... 

No April Fools Day Jokes This Year

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 :))