Blenrep Happened Today- More Later!

 3.25.21

New BLENREP IMMUNOTHERAPY CHEMO

happened today. 

So much has happened this week, so exhausted and beat up. Will update ASAP...

Myeloma Labs are rediculous. Have never seen or could guess how HIGH (bad) they are. Unbelievable. Off the chart awful. Drs just shake their heads, everyone trying to stay positive, knowing I have 1 almost 2 feet in the grave or cozy cremation oven

So Sad, So Sick, So Sabotaged by Myeloma

 Hello Friends and Loyal Followers-

Have so much to say, but zero energy to say it... here's the plan for this week:

Dr appt Tuesday

 

High Dose Steroids before (which I take early in the morning for full affect for chemo and overall body pain relief. They are my weekly friend, but yucky-crash enemy more than ever now. 

Before that, Labs for Blood Typing for Platelets and Blood- Nurse called and said I needed blood typing labs and needed to get to the Lab (further away Lab for me) asap. I laughed and said, "are you kidding me. I'm not a normal person and can't just jump in the car and go there. My adult kids are at work, I can't drive and besides I can barely walk and function. Nope, now way can I do labs there today, blah blah blah... but back in the day, ha ha, not a problem to do whatever I wanted whenever I wanted. But of course, back in the day I didn't need transfusions. 

Dr appt to dicuss Blenrep start day, but may not be able to start this week because of the Transfusions... Good bye Darzalez, Pomalyst, Velcade, Dex Steroid combo. Velcade, Dex may be the only continuing partner with Blenrep... 

Wednesday, Blood, Platelets, whatever can help build my system. Maybe continue to do weekly Velcade shot if I don't begin Blenrep immediately. We've discontinued the Darzalex and Pomalyst too. Just don't want too many things colliding, confusing multiple side effects. As always, I want to know what is causing what. What will Blenrep do to me beyond the Eye issues? How yucky will I feel. Will it be my miracle medication? OMG I HATE YOU SO MUCH MYELOMA. Why why why why me. I don't understand what I did to cause to this celluar volcano inside of me. Some days I am really "done". I don't fear Death. I just have so much more living to do... I'm just so sad. I could cry all the time (which I never "needed" to do before). So many things around here to make me emotional and cry. The little doggies look into my eyes when I cry, and the depth of their empathetic gaze is so deep. Animals are so perceptive. So sad, so incredibly sad what happened to my life at 50, and worse at 60...

Have had several weeks of side effect awfulness. Finally took one 4mg Dex Steroid earlier today, as I cannot stand myself, and what myeloma has done to me. Can't stand feeling so incredibly awful, so sick, so weak, all the time. Big Fever middle of the night last week 102, 103?, and I think a week before. Then fortunately, lower the next day 99-98. Weak beyond weak. I so fear falling. Cannot eat or drink much at all, if I do, you know where I wind up for hours lol. But there are days I barely have anything coming out of me, as I barely have anything going in. Not good, I know...

Feel so sorry for all the critters here. Yes my wonderful, loving adult kids come daily to care for me and them. They want to bring me food, but I can't eat, just can't get beyond the nausea and full feeling from the lovely Alien Abdominal Mass. Have you ever watched all the cooking and food shows? I laugh at the "Carnival Eats, BBQ, etc shows, and think what the "normal" person can eat and digest. So Jealous. But wouldn't dare...

Any of you become Extramedullary? Never heard of it before. What caused it. Was it the horrible summer of Elotuzumab for me? Some crazy reaction that actually stimulted tumor growth because I"m IGA myeloma? I was so "functional" prior to that. Sick, yucky, side effects, but Functional. Sorry I ever tried Elotuzumab. But who knew... Who know's what will result from putting all these powerful chemicals into our bodies, trusting they will kill Myeloma, but not us lol...

And this!!!!! LOL Unbelievable!!! Ever seen Beta2Microglobulin this high? My phone is overfilled with pictures and screenshot, so I won't be posting all the other Myeloma- Lab- You- Won't- Believe- This- 

SERIOUS NOW MYELOMA

UP 10 POINTS

TO DOUBLE DIGETS!!!!

Ok, bye for now. Thank you for checking in. 

Choices, Choices, Studies, Studies... Please Stop Mutating Myeloma!

3.11.21 (but written on 3.9.21) as I will be crashing bad on 3.11.21...

And I found this the other day... 

ME!!!!!

So here's the UPDATE I would be posting on 3.11.2021:

1- Darzalex IV Monday March 8. I now have a weird reax to IV Benadryl where I get "Restless Leg Syndrome" with the IV Benadryl push. So sad about that, as the Steroid up and the Benadryl mush mouth, tired and relaxed without choice, previous reax, was so "fun"!! Was such an out of body reax with my brain on, but outside my body, and my slow-mo talking. You would all laugh hysterically seeing me like that! Now it's annoying with feeling tired and relaxed mentally, but my body wants to be in motion lol. Maybe if my CBC's rise, I can enjoy the previous bipolar ridiculousness! 

2- Dr appt/planning/discussion and Velcade Injection today, Tuesday March 9.

3- Both days, with 20mg Dex Steroids and Pomalyst.

4- Discussed both Blenrep and Melflufen or stay the course with Darzalex, Velcade, Pomalyst, Dex steroids. I do feel my awful Abdominal Alien Mass may have shrunk a tiny bit. Is that from Radiation or Chemo, or the fact that I've lost 10 pounds from not being able to eat because it's so big and taking up so much room. I hardly have an appetite, and when I do try eating, I can only do a few bites before I am full or it begins to taste yucky. All the food I have here, and see on TV still looks totally delish, but Alien says NO! ... Dang thing, I wish it could be just suctioned out. Today I had my Nurse stab it with the Velcade shot. LOL not really, but I did do the Velcade injection on my Right side LOL. Wish it would just disintegrate and I could pee or poop it out LOL. You ask why I can't have Surgery on it... first of all Drs have said it's too "dangerous" because of where it's located (Abdominal near Kidney, Liver, Adrenal), and the Mass would just grow back, as the Myeloma is everywhere and just keeps recreating itself. Same with the Lung Mass, Skull mass, etc, not to mention all the bone fractures, breaks, lesions, plasmacytomas, etc. Myeloma just loves me and wants to make it's presence known everywhere, 24 7. Ugh, where did it come from, I will always wonder...  Whyyyyy meeeee???? 

Well time to try some tea, drink a bit of it, hate the taste, throw it away and try another. Not to mention see if what I ate earlier, agrees with Alien... doggies sure get a lot of left-over treats now lol.

Thanks for reading and caring as you do, and offering medication suggestions and heartfelt comments as you do. Means so much to me :))  x0x0

2 New Options: Blenrep and Melflufen

 3.1.21

Hello Friends, 

All's the same... extreme fatigue and exhaustion thank you to very very very low CBCs, Platelets, Hemo, Reds, Whites, etc. I am so sick of feeling sick all the time. So tired of being tired all the time. Over the years, I had the flu and colds just like everyone else, but recovered like everyone else, and life went on. With Myeloma side effects, I can barely move and do anything now. Everything is challenge. Not a ton of pain, but it's there. But the weakness, fear of falling, I can barely get in and out of bed, the car, chairs, etc, and the inability to do much of anything is startling for me. It's just all totally disabling and I can't wrap my head around it. Never watched so much TV in my whole like. Never had to "force" myself to eat and drink. I am sick of hydrating. Sick of trying to eat the "right" things. I could live on the pre-boxed protein drinks, if that was healthy. But it's not. A while ago I weighed 131 when doing the High Dose Dex Steroids. Now I'm 121. That's fine with me, but I also know "what it means"...

So the regimen of Darzalex, Pomalyst, Velcade, Dex Steroids is a big joke to Myeloma. I'm "refractory" to all of them most likely. Oh well. I'm tired of blood tests, and needles sticking me. Never bothered me before, but now my skin is so sensitive, I tense and bristle up when the needle goes in. Never had this issue before. And the nose bleeds. Weird clots come out when I blow my nose. Oh well.... And the Extramedullary Lung and Abdominal Masses... who knows how big they are now. I care, don't care anymore. I get mad at myself when I mumble and bumble around the house and say I don't care anymore, I'm done, I can't take this anymore, and just want to feel what it's like with NO meds in me. But truth is, I do care. I care a lot. I want to live. But it's just so hard now. All I do is whatever I have to do to treat Myeloma and then deal with the side effects. Nothing tastes good. I try to eat, but it's not fun, nor tastes good any more. I try to drink, but I throw more tea and juices away, then I drink. And I used to love my herb teas and Cranberry sparking water mix. Can't stand plain water any more. Force myself... I haven't had coffee in weeks. Doesn't tase good at all anymore. I watch the Food channels and laugh at all the incredible concoctions. Onions, Garlic, Fried, Jalapenos, Carnival Burgers to Elegant dishes. I'll never be able to eat any of that any more... LOL, not that I ate it before, but for sure now, I will never be able to. 

Fun Show!

Will never celebrate with Jim and others again

He loved a good steak, I was never a regular meat eater

But we had a lot fun times at lovely restaurants... 

So Steroids and Darzalex today. The Benadryl is still affecting me with woozy brain mush, which is ok, cuz feeling mellow is ok with me. But I've developed "Restless Leg Syndrome" from the IV Benadryl. Weird. But my amazing Nurses reassure me that it is a known side effect. Hope to get back to the woozy effects, rather than stomping around trying to get rid of the "leg fizzies". Super tired and weak, but I am always careful, but I do worry about the Little Doggies getting under my feet and tripping me... I am very careful, don't worry about that! Use a cane most all the time now. They're Jim's canes. So funny. I had bought him several with very nice decorative patterns on them, NOT knowing I would eventually be the one using them LOL.

Tomorrow, Velcade and possible Platelet transfusion. Dr wants me to go for blood tests after injection. Don't feel like driving to another facility. Don't feel like doing anything. Would love to stop everything and see what happens, then if not good LOL, go back on some do me good chemo... would love to just sleep and sleep and sleep, then wake up refreshed, go outside and realize it's all been a crazy dream,,, ha ha...

Did my Ophthmology appt last week, and my eyes are good, and ready to be destroyed by Blenrep. 

Ironically a blog follower mentioned "melphalan flufenamide (Pepaxto; melflufen)"  .  I had read about it previously too. It was just approved yesterday, Feb 28,2021! The most amazing thing I read, and couldn't believe my eyes, was good results with EXTRAMEDULLARY Myeloma:

 "Notably, the combination also showed activity in a subset of patients who had extramedullary disease (EMD; 41%). "

Thank goodness for the BRAVE people that do these Trials!!!

Last paragraph of another article:

Furthermore, melflufen in combination with dexamethasone demonstrated activity in a subset of patients with Extra Medullary Disease (41%), an aggressive and resistant disease associated with a poor prognosis. 

Well isn't this an amazing twist... will ask my Dr about Blenrep vs Melflufen!!

And in my recent Labs, Steroids have brought my A1C to a little over 6. But that could also be that I am not eating well, and eat more bread type things now to settle my stomach. I'm too Neutropenic for fresh fruits and veggies. But honestly, I eat whatever I want. Does it REALLY matter at this point... care, don't care... but I really do care... I think I'll try some Hot Chocolate now... sugar, sugar... who cares... 

LOL hadn't read this before just finding it to post!

I eat almost all the banished foods here LOL

Thanks for reading, caring and following my story. Sorry for being so sad and pesimistic now, compared to the upbeat, joking, positive, it will all be ok Julie, through out most of this blog since 2010...