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...
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
hi Julie, I'm thinking of you. thanks for the update. And I also get the restless leg...just in my left leg during my infusion. It ruins my nap and loopy time.ReplyDelete
Ah, thank you Buddy. Yes, I'm trying to figure out which med is doing this to me in addition to Benadryl. Sometimes I get it from Omeprazole. I take more stuff now than ever, and never did all this back in 2016, 2017 with Darza. It's probably all the meds together. And omg, what I've gone thru with side effects in the several weeks, I thought this was "it". This Extramedullary is vicious.Delete
Hoping you and Leslie are doing good, feeling well, and able to enjoy some "normalcy" xoxo Julie
I was diagnosed with Myeloma last August and my treatments were Darzalex, Velcade, Dexamethasone and Revlimid. I quite often got "Restless Leg Syndrome" when I was getting the Benadryl and steroid premed, so I can relate to that uncomfortable feeling of needing to move and just wanting that sleepy, calm feeling for a bit. I went through 6 cycles and this last week went through the stem cell harvest for my transplant which I go in for on the 23rd. It was a horrible week and they didn't even collect what they were hoping for (as you know they like to collect for multiple transplants). The jug cath was the worst for me and I think I have PTSD from worrying something was happening with it as anytime my neck still hurts (I had it pulled yesterday pm) I quick grab my neck like I've been shot. I look forward to hopefully, in the next few days, feeling more like myself again (or as myself as I've been able to feel since starting treatment), and having my platelets go above 40 so I can run with scissors again :) Thank you for sharing your story with us all and I wish you luck with all you're going through and know my thoughts are with you.
Hi My, thank you reading and sharing your story. Yes, I remember all that from my July 2010 SCT. Sorry you are reading all this at 11 years. I had some very very good years after my SCT, and I'm sure you will too!Delete
Just take the "Maintenance" and never let Myeloma get ahead of you. Julie
Good to hear that Blenrep as well as Melflufen can attack those extramedullary tumors. Maybe with less myeloma your bone marrow will be able to produce more regular blood cells and stabilize your counts? I certainly hope so. Such a giant leap in the dark to take these new drugs, but then again, most of the drugs we are taking are only a couple of years out from trials. At least the side effects of Blenrep and Melflufen are known and the doctors know what's best to prescibe for your situation and what side effects to monitor. It sounds like you have a good medical team too. Thinking of you.ReplyDelete
Thank you for checking in Ruth. Yes it's amazing what us cancer patients put in to our bodies, all these powerful chemicals, and we survive! I do a lot of ready the research when I feel well, and let my Drs know how I feel about taking chances, avoiding High doses, etc. I asked to start at the lower dose of Blenrep, so we'll see. I just want to know what side effect train is coming my way. Just hate being a sickie. Thank you for all your support and comments :)) JulieDelete
Julie, I appreciate your very candid description of what you really feel and not sugar-coat your MM journey when your acceptable options are limited. You bring lot of humor out in painful situations, as well. The discussions about your reasoning behind Blenrap / Etc is very useful as many of would be facing such decisions. Please keep up your helpful blog.ReplyDelete
Hi Vince, thank you for finding my Blog and for your appreciation of my honest rants. Not everyone wants the "real guts". I do feel bad for the newly Dx that finds my Blog, as they most likely will have many months, hopefully years, of postive treatment success. But yes I can only be honest and tell my story as it is. And yes I will do the lowest dose of Blenrep to start and see what side effects is causes, but NO WAY will I do eye complications if that happens. I barely have a "life", but I do have my Independence :) Hope your journey is going well, if you are a myeloma warrior too. JulieDelete
I too wanted to thank you for your honesty with this disease. I have it for the past 4 yrs and have gone through all(almost all)the meds you describe. I have refused some--the Blenrep for the eye issues. I don't see the point of living a few more months with no eyesight as I am an avid reader. My doctor laughed but I did not take the drug. I also turned down a Phase 1 trial after reading the sponsor's (aka drug co.)requirements. I would be spending all my time as a human guinea pig without any guarantees and this would basically go on for the rest of my life or the side effects which they don't know yet what they are caused me to quit. I was chewed out by the onc research dr for refusing the trial and wanting to spend what time I have feeling as good as I can enjoying the company of friends and family. There is no cure in this disease as you know. We are just buying a few more months that may or may not be 'quality'. Everyone has their priorities and must make their own choice. I choose quality over unknown quantity. I really respect you and hope you will keep your column going. It is the ONLY one I have found that tells the truth of the disease treatments. Most columns try to make myeloma sound like an outing with Mary Poppins and pity for those people who DON'T have myeloma. You are a good person and please stop beating yourself up for stopping treatment and giving time to your beloved husband. In the end we will all be judged on how we loved one another. You loved very well.
God bless you. Keep writing if you can and if it doesn't insult you I am praying for you.
Hi Dallas, Tx- thank you for Your comments above that (lol) come out of my mouth everytime I have discussions with my Drs and Nurses. They seem (especially the Drs) to believe that strong treatments and Clinical Trails are the answers. I ranted about this in prior posts, so thank you for the good laugh, and understanding perspective we agree on. More is not More in this case...Delete
I could write at length in response your post, and I so appreciate your honesty too! I have gone on and on with my Drs re NO WAY do I want any chance of "serious" eye issues, and my adult kids laugh and agree too. What's the point of affecting the Myeloma, if we then can barely see, etc. I too love to read, and also not being able to see what is left of my life, would be stupid and devastating, Not to Mention losing Independence. No Way!
Whenever I am offered Clinical Trials, well... I let everyone know I will, at this time only do FDA approved meds. I have great respect for those who do them for us, but No thank you, and I will not be a Lab Rat or Guinea Pig, or Placebo. I tell everyone that asks why, more or less what You said above. I do not want to lose even more control of what goes in my body, as it's bad enough putting in all the chemicals we do, and then waiting for the Fireworks to go off LOL.
Surviving 11+ years is pretty remarkable for MM, and 4 for you, and perhaps our "Methodolgy" works. And YES, quality over quanity... altho I am pissed I won't have the years I thouht I would :((
By the way, my husband passed last year, and thankfully that was before this Awefulness set in . I still "blame" Elotuzubab for picking this awful additional war within me, with my IGA type myeloma. All the other varieties of MM may just do fine with it, but I truly believe it triggered the Extramedually invasion...
Ok, thank you very much for your reply Dallas, Tx! I appreciate everyone that comments.
PS- I am still waiting for the glow in the dark Rainbow Unicorns to visit me ;)) Julie