8.10.20
Hi Friends and loyal readers-
I almost wasn't going to post today, as my suffering has been OFF THE CHART for weeks, months. You know when your Nurse or Dr asks you your level of pain from 1-10 scale... well I tell them mine is near 1000!!! No joke. The suffering I have done since I tried Emplicity Elotuzumab, is insane!!! Well not to bash that chemo in any way, as I'm sure it's been a lifesaver for many, but just as I had an insane reaction to Zometa in 2018, whatever Emplicity does chemically, biologically, Wowzzaaa ooowwwzzzaaa, it sure did me in!!!!
So to recap...
Sadly, Cytoxan (400mg of pills weekly) with Velcade shots with Dex steroids (40mg weekly) stopped being effective for me in May 2020. So that's when my Dr wanted to try Elotuzumab Emplicity with Revlimid and Dex. I was not thrilled with changing, but agreed as my IGA was creeping into the mid 2000's.
Within a few weeks I noticed muscle, nerve aches and pains, but wrote it off to the new med changes in general, thought it would disappear as my body got used to it, and just suffered thru it. I remember shortly after beginning Elotuz, my Left thumb joint area suddenly swelling big, and becoming very very painful. Thought maybe I did something to it with all the ranch chores. Thought it was odd as the pain began to move and migrate up my Left arm, then into my L shoulder area, then into my collarbone, growing a HUGE tumor on my L clavicle and chest area instantly!!!!! When the size and pain was so crazy intense, never subsiding, that's when I told my Dr about it, commencing all the xray, MRI scans, as I've written about in previous posts.
Well... the rest is history, with all the unrelenting pain, pain medication adventures, etc. Then a week of Radiation, last week of July. Then recently... surprising low grade 24 7 fevers, with more intense pain on my Right side, then more xray scans, and finally today, first Velcade shot of going backwards (my choice, my request) in this new treatment regimen.
So since my last post, I developed a low grade fever. non stop, 24 7 for days and days and days and days, etc. Vacillated from 99 - 100.4 Can't tell you how absolutely AWFUL it's been. Fevers on top of excruciating pain... "Just Kill Me Now" I would sometimes say... but then quickly take my words back, as I'm not quite ready to let Myeloma win. But there were many desperate days and nights, I just didn't think I could take it anymore, and I still can't. Only reason I can post and type right now, is thanks to 40mg, (ten pills) of Dexamethasone Steriods this morning!!! Haven't had a Tylenol since this morning. Just typing hurts. I just can't get over how bone tumors and myeloma lesion pain, along with fevers, is just the most awful thing to live with...
So my new chemo regimen is the ole myeloma first line of treatment of Revlimid, Velcade, Dex. I skipped this regimen in 2010 as good ole Dex steroids and Revlimid alone brought my IGA down in a flash, prior to my SCT, and then I did lowest dose Rev maintenance for 18 months, and then resumed Revlimid again when out of Remission in 2013.
So we'll see how this goes, but honestly, even if my numbers stay the same, or even escalate a bit, or roller coaster, I'm NOT SWITCHING CHEMOS AGAIN ANYTIME SOON. THIS PAIN HAS DONE ME IN!!!
Oh, you probably want to know about the fevers? Yes they came on fast, but low after Radiation, rose from 99ish to 100ish daily. Yes good ole Tylenol brought it down, but I know that's just a band-aid on some sort of bigger issue. What the fever is, I don't know. Never went to Urgent Care about it,... you know why??? Because I didn't want chemo cancelled. If I don't do chemo, I die. Very simple concept for me. Yes I know I should have been checked. Yes I know it could be an underlying issue (infection?) that could be as serious as not doing chemo. Yes I know not treating is not always the smartest thing, but I watch and wait very very carefully, and if it had continued to rise to 101 let's say, I would have consulted. But again why? I won't go to a hospital because, #1 I don't want to die there, #2 my family wouldn't be allowed to visit me, #3 and what really can they do for me there, that can't be done at home???
I ask Jim's home health care nurses about the difference between Pallative and Hospice care. I could be eligible for both. Don't want to go there yet. But honestly friends these last few months have really really tested me. I haven't been able to be me, or function at all. Everything, and I mean everything became a super painful choice. Even with medication. Everything was just torture. I got so I couldn't change my T shirts, couldn't shower as I couldn't lift or turn my arms. Sleeping was was never refreshing. The pain woke me up, I couldn't sleep in any other position but semi upright, with many pillows propping me up. Not fun. If I turned by mistake, yikes the searing pain startled me awake, not to mention, fearing fracturing my clavicle collarbone or ribs more.
I didn't go outside, as nothing was fun anymore, as everything caused me pain. Yes, I tried Norco, Percocet, different muscle relaxers, steroids, different strengths of Tylenol. And now I have more clarity as to why i have all this PAIN!!.... I found out from my xray scan yesterday... I HAVE MORE FRKN FRACTURES IN MY RIGHT SIDE CLAVICLE COLLARBONE SHOULDER!, in addition to the LEFT SIDE I JUST HAD RADIATED, ALONG WITH MYELOMA LESIONS EVERYWHERE THEY XRAY. YEP, ALL THIS PAIN IS REAL, and that's why I've been in so much PAIN. Get this description of my fracture type! Unreal!
Fractures of several types, Comminuted fracture, lesions, holes, masses, demineralized bones, clivus eaten up, etc etc. It's no wonder I haven't had more pain over the years with myeloma eating me up like termites to wood!!! Just Google some of the specific wording in the reports. Blew me away!
"A comminuted fracture is a break or splinter of the bone into more than two fragments. Since considerable force and energy is required to fragment bone, fractures of this degree occur after high-impact trauma such as in vehicular accidents."
And...
Paravertebral extension usually occurs with aggressive, malignant lesions, but it may also be encountered in benign lesions in the presence of a pathologic fracture. Certain expansile lesions tend to occur in a specific region of the vertebral column. This may be an important clue to the diagnosis.
WHAAAAT??!!! JUST CAN'T MAKE THIS STUFF UP!!! HELLO PAIN... I UNDERSTAND NOW. ... BUT I HAVEN'T BEEN IN A VEHICULAR ACCIDENT... YESSSS MYELOMA YOU ARE MY HIGH IMPACT TRAUMA!!!
Hello Lytic Lesions, you've been Radiated already!!!
Ok Friends, I'll just leave it here... my myeloma journey just keeps getting more interesting and challenging daily... just can't make this stuff up. You Myeloma can just stop now, and give me my life back. I don't ask for much. Just pain free, with the ability to just move around slowly, and do what I want when I want, without feeling like a zombie all the time, because I hurt so much, and feel feverish and sick all the time. Oh how I took my early years with Myeloma too smugly.. how Myeloma was raging in the background, but the chemos I was on suppressed everything better than it does now. Well it was eating me up, but for some reason, the pain from all the lesions just wasn't as intense until Zometa in 2018 and now Elotuzumab, May, June 2019... but I will fight until I can't...
May your summer be full of fresh air, warm summer nights, with the moon and stars shinning brightly on you, surrounded by those you love and care about.
So sorry! I had peumonia fevers for weeks and I couldn't handle just that alone--- nor the conitinous coughing! But there was no pain.( I am 5yrs IGG high risk)
ReplyDeleteUgh Conda, that must have been awful. Hopefully that's behind you, and you're better now. Congrats on your 5 years! How did they define you as "high risk"? I remember my Dr telling me that at Dx too. Hope you are doing ok now xoxo
DeleteThis is Jewell. I haven't commented in a while but have been reading your blog. I am so sorry to hear about all your pain. My heart hurts for you. I am going on 5 years now and I really hope that I am not seeing my future. I am trying not to take for granted my life now. I am on Dara and dex. It is keeping my kappa light chains down. I sincerely hope that your pain gets better and that the fevers go away.
ReplyDeleteThank you Jewell for checking in and commenting. Congrats on your 5 years! Funny how I would read blogs and say the same thing, of "hoping I am not seeing my future". I used to think I didn't have bone issues. Ha Ha! I used to to be so smug about things, as I treated well in the beginning. But going on 11 years now, myeloma is really trying to win, but I'm feeling better now, and ready to fight more :)) Glad Darza is working well for you, I had a good run with it too xoxo
DeleteJulie, even though I may not comment often, please know that I look every day to see if you have a new post. And my heart breaks for all that you are going through. I cannot imagine the pain. It is a reminder that, for some, myeloma is particularly cruel. Always thinking of you...
ReplyDeleteThank you Sheri, for following and commenting and caring as you do. I can't believe all I am going thru either, and agree, it has become very "cruel". I was so smug before, when I treated well, with few side effects. But one day at a time for me, and we'll see what Sept brings. Thank you for caring as you do! xoxo
DeleteDear Julie, I am so sorry you are enduring such pain. When you talk about the difference between palliative and hospice care and not wanting to "go there yet", it might be good to discuss palliative care with your medical team. Palliative care doesn't mean you are at the end; it simply focuses on relieving and preventing the suffering of patients and improving quality of life at any point in the course of a patient's disease. You can still undergo active treatment, but palliative caare specialists are skilled in managing pain since it can be complicated. I do hope you find some relief. Please know that I am thinking of you. Hugs, Aurelie
ReplyDeleteHi Aurelie, yes I did ask about Palliative Care, and for Kaiser, only patients who can no longer leave their homes, are eligible. Maybe I heard wrong, but thankfully I have turned the corner, and the fevers are "gone" and the pain is lessening. I did find what works for me to lessen the pain, and I've learned to self treat and not wait for Dr help... July and Aug was just a mess. Hoping Sept will be kinder. Hope you are doing well, and thank you for reading and checking in xoxo
DeleteHi Julie,
ReplyDeleteBoy, things sound really rough for you right now. I at least hope you are getting help around the ranch. I hope as well, that things have improved in the last week. I don't tolerate pain well, so not sure what I'd be doing. My numbers are going up ( kappa) so treatment (again) is in the near future but now yet. Sending hugs your way. hang in there.
Thanks for checking in Christina. Sorry your numbers are going up, but thankfully slowly. Yes pain is debilitating, along with all the other side effects, but hopefully Sept will be better as I think I have finally turned the corner. I read your blog too, and marvel at you do! xoxo
DeleteHi Julie,
ReplyDeleteLots going on right now, huh? Hope things improve soon and that you have the support you need to push on. You have lots of love in your life; reason enough to keep going. Sending warm cyberhugs and best wishes for you to feel better soon, Bernadette
Thank you Bernadette for reading and checking in. Yes as awful as things are for both me and my husband, we are very blessed and lucky to have our adult kids so loyal and helpful and well as all the other others that care for us. We were so independent before, it's really hard to accept where we are now, but one day at a time, is all I can do :)) Hope you are well, and doing ok xoxo
DeleteJulie,I am so sorry for you and Jim!I will continue to pray for you both.I sure hope the pain will let up soon!
ReplyDeleteYou are such an inspiration to everybody including me.
Thank you
Ron
Thank you Ron for continuing to follow my blog and for your positive comments. Just one day at a time is all I can do, as my life has become so unpredictable and so unbelievable. Just don't understand how both me and Jim were sentenced with such awful diseases. Stay well and have fun with your family.
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