Hello Friends,
So much to share...
Pain is off the chart
MRI results: Holes, Tumors, Mass, Lesions
Skull, spine, neck, collarbone
Crazy painful swollen awful tumor bump protruding on L side collarbone clavicle driving me nuts- wanna see a picture of it?
Radiation coming next week forward
Myeloma is eating my bones, like Termites to wood
Finally gave in and tried Norco; not even making a dent in the pain lol!
Took Labs Thurs July 9
May have results to share
I think it will be GOODBYE Elotuzumab Emplicity, as I think you are the Pain Culprit, and not really doing me any good anyway
Decisions to make re next line of treatment
How about going backwards to good old Revlimid, Velcade, Dexamethasone... skipped that firstline option back in the day
Hate switching to new meds
Hate the unknown side effects out to get me
Just hate you Myeloma for stealing my life
I'm so beat up, so discouraged in so many ways, scared in ways I haven't been before
But looking forward to Radiation to put this Humpty Dumpty back together again
I just want to live
Live a calm, peaceful, pain free life
I don't mind being on chemo for life, so used to it now
Just want freedom of movement and to feel good a few days a week
I don't mind being on chemo for life, so used to it now
Just want freedom of movement and to feel good a few days a week
Is that too much to ask Universe!
I'll be back with the details, Dr reports, and a bit of reminiscing about my 10 year Stem Cell Transplant anniversary on July 5th! Wow, 10 years ago where I was, what I was doing, and what my body was doing to me... guess as bad as things are now, I sure wouldn't want to be where I was then, as the Melphalan chemo was totally crashing my system, and wow, was I sickie. Have linked my July blogs below...
Too be continued....
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7.11.20 **** UPDATE !!!!!
So my Left side Clavicle, Collar Bone area continues to do me in. I feel so disabled, but still trying to be me, and do something, anything around here. I feel better if I can move around, as sitting or reclining or trying to sleep is even more painful. I'm beginning to wonder if this DRAMA began with the immobilized position I was in for so long for the MRI scans back on June 30. Seems as if it's a knotted bundle of muscles and nerves wrapped around a tumor, pulling and tweaking EVERYTHING :((( Here's a lovely picture of it my daughter took the other day. I've been trying to carefully stretch, bend, creak, tweak, crack, move on my L side, but this is just so dang painful, and limiting. Amazing how our anatomy and physiology is such an incredible interconnected machine. Which is wonderful when it's healthy, but so awful when not.
Hilariously, I did try a Norco 5mg/325 on Thursday night, and it literally did NOTHING for me! Didn't even take the edge of the pain, or give me any woozy, relaxing relief. So who needs that stuff, if I just have to take a larger dose. Plain Tylenol, Advil, muscle relaxer Flexeril AND my BEST FRIEND EVER Dexamethasone Steroids, seem to be the best treatment for me. I just need Anti-inflammatories!!! I don't have an "addictive personality", so I was never worried about taking the Norco. All I want is to be pain free, without meds. I don't "need" anything to boost me up when I feel ok!!! Feeling ok for real, is the BEST feeling Ever!!!
And did I mention, the disabling pain is so awful, I've been using my hubby's remote hospital bed to sleep in, as I can't get in and out of a normal bed with the intensity of my pain. I use the side bar and vertical head lift position to get in and out. He hasn't used it in months, after his weird seizures earlier in the year. He does better sitting up in a chair. We're a crazy train wreck... Ridiculous and unreal!
And did I mention, the disabling pain is so awful, I've been using my hubby's remote hospital bed to sleep in, as I can't get in and out of a normal bed with the intensity of my pain. I use the side bar and vertical head lift position to get in and out. He hasn't used it in months, after his weird seizures earlier in the year. He does better sitting up in a chair. We're a crazy train wreck... Ridiculous and unreal!
So the main concerns my Drs have is the bone damage in my neck, skull base, skull bones, R side head, etc. Thankfully, my lovely mass is NOT a brain tumor, but a mass, tumor, holes, lesions, etc, in the skull and bones. Areas I have read and reread as I never fully learned detailed Anatomy and Physiology. Just took sooooooooo much for granted, as we all do, when we are Well!!
Here's a summary report of about 20 pages of MRI, CT, Xray reports. Main areas of concern are the: clivus, foramen magnum, chordoma, You can Google those, as there's so much info there, my head is spinning. OOpps, shouldn't use that term, as that's what will happen when myeloma cracks all those body parts and my head starts spinning on it's own. I've become a "bobble head"!!
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RECENT IMAGING Report
June, July 2020
6/30/2020:
MRI BRAIN: There
is abnormal bone marrow signal within the clivus which enhances heterogeneously
postcontrast. There is also abnormal enhancement within the
right side of the skull base at the foramen magnum.
There is no
intracranial mass or intracranial extension from an enhancing right skull base
tumor involving the clivus.
In a patient with
known multiple myeloma, metastatic disease is most likely etiology...
Other skull base lesions including a chordoma are not excluded.
6/30/2020: MRI NECK:
Normal soft tissue
neck MRI pre and postcontrast.
There is bone marrow
replacement within the clivus most consistent with metastatic disease in a patient
with known multiple
myeloma.
6/30/2020: MRI C
SPINE:
There is age expected cervical spondylosis that causes mild C4-C5 and mild
C5-6 central spinal stenosis. There is abnormal bone marrow signal
replacing the clivus. There is patchy enhancement in the cervical vertebral
bodies consistent with the patient's known metastatic disease.
7/5/2020: XR LEFT
CLAVICLE:
The bones are
demineralized. There are 2 well-defined lytic lesions of the clavicle lesion of
the mid clavicular shaft, unchanged from the prior CT scan. There are no
fractures or dislocations. There is mild degenerative change of the AC joint.
PHYSICAL EXAMINATION:
GENERAL: She appears
well in no acute distress. Speech is fluent and
coherent. Cognition is
normal.
ASSESSMENT: 60 year
old female with progressive myeloma with left clavicular pain and neck pain.
Recent imaging showing clivus, cervical vertebrae and left clavicular
involvement.
RECOMMENDATION: A
lengthy discussion took place with the patient. Offered palliative radiation
therapy to the clivus/c-spine region and the left clavicle areas. The
indications for radiation therapy in this setting were discussed in detail.
Also discussed were the potential risks and side effects of treatment.
Specifically emphasized was the risk of radiation damage to the normal tissue
structures in the treatment field including the skin, underlying bone, throat,
brain and lung. Logistics discussed. She agrees to treatment. She was advised
to call should she have any further questions or concerns.
Department of
Radiation Oncology
* L clavicle pain, tenderness, feels getting
more painful and swollen, protruding large. Has headaches on right lower
head/neck area. Neck pain - clicks and stiff. Dr prescribed Norco today since Tylenol
does not help much.
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Am I really writing about my Life? How can this be? I think back over the 10.7 years of treatment and realize how "lucky" I was in the beginning with not having to deal with Bone Involvement with this stikn Myeloma. I was so Naive and Optimistic, and just didn't think this awful cancer would attack ME as it has. But ha ha on me, it did, always was getting worse, and now I cannot ignore or laugh off it's impact on my life.
I'm still waiting for my IGA results from Thursday. I really don't have an intuition as to how Bad or Good my status is. I'm just so worried about what treatment to do, as I hate side effects, and there are some I just won't tolerate. Not sure come Monday, if I will be doing Elotuzumab/Empliciti, or try Velcade again, with the Revlimid and Dex steroids. Can you even comprehend how medications are the "only" thing keeping me alive. And without an effective treatment... yikes... won't go there now...
Here's a look back on my 10 year July 2010 Stem Cell Transplant:
So Crazy how I've been writing my Myeloma Life story for this long. And that's only the July posts! I'm glad I have been loyal to writing, as it's so helpful to look back on my status, treatments, feelings, life stories, and this will be the "book of life" everyone tells me to write.
Ok, my Farrier is here to trim the horse hoofs, it's a million degrees of heat out, and gotta go get all doggies corralled. I will post my IGA when it comes in, and next post will be all about the Radiation plan and hoping to get this pain under control and the muscles and nerves calmed down, so I can live my life!
Thank you for reading and caring as you do! Stay well, healthy and pain free, as truly "Health is Everything"!!!
oh Julie, I'm so sorry.It's not too much to ask for a pain free and calm life. I'm confident you'll get there. hang in there. I'm sending you hugs and positive, healing energy. Chat soon.
ReplyDeleteThank you Matt. I'm being challenged beyond challenged. Hoping you are doing well and "in charge" of your myeloma. I'm doing steroids more often, and that helps a bit. Dex is the only thing that takes the edge off xoxo
DeleteAlways thinking of you, your challenges and "kick its ass" attitude! You inspire me to avoid complaining, living life abundantly and choosing to be happy. xoxo
ReplyDeleteAww Laurie, so very good to hear from you! Thank you for following my story and letting me know you're reading! Thank you for letting me know my writing inspires you. That inspires me to keep writing. Thank you Laurie xoxo
DeleteMy husband and I are loyal followers Julie so thank you so much for being a loyal writer! I read your posts to my husband to remind him that he is not alone in his Myeloma battle. He too would like to try Revlimid again. Very tolerable drug. Stay strong Julie!! Please know that you are not alone. Love and Prayers to you and your family oxox
ReplyDeleteThank you so much Bonnie for letting me know my posts matter and you read them to your husband. Hope it's not too raw or intense. And thank you for reminding me I'm not "alone" in this insane myeloma battle. I "know" it, but so good to hear it from another myeloma family. Thank you for caring as you do. How is your husband doing, and what meds is he on now? xoxo
DeleteSo sorry to hear. And sobering for what is a possible/probable future for many of us myeloma patients.
ReplyDeleteHi Conda, thank you for reading and caring. I used to say your words to myself, when I would read other myeloma patient blogs, posts. I could not imagine feeling, experiencing what I would read, and now I am that read! Hoping your myeloma is under control better. Share your story with me, if you'd like. Thank you for reading and commenting! xoxo
DeleteJulie, this is just awful!!!!! I'm so sorry to hear how much pain you're in. I love you and pray you will get relief. Love, Gay
ReplyDeleteHi Gay, thank you so much for checking in and reading. Thank you for your love and prayers. Can you believe what has happened to me! Did we know each other before my diagnosis? If only we could meet up and have some fun and laughs together... soon, we will friend. Thank you for your friendship over all these years Gay xoxo
DeleteJulie, Read all your blog posts , your myeloma life sounds so much like mine, I have been fighting this insidious disease since 2015 so exhausting and painful . Drugs seem to be worse than disease , bad side effects that I don't handle to well. I too have a house full of animals that I cannot even care for anymore My fabulous son clean up after them but bothers me cause not fair to him. Hate that my kids have to see me in pain with no energy to even get up off a couch. Your story is an inspiration to me and I hope and pray for any relief you may get. You deserve it. God Bless you and yours. Continue the fight Myeloma will not win this battle.
ReplyDeleteThank you for following my blog and commenting. Yes, the drugs, meds, side effects are often worse than the myeloma itself. But we have to push forward and try to kill this monster off. Good to hear you are a 5 year survivor. Which meds have you done so far? And yes, sad we cannot care for our critters as we once did. Amazing how when life works it work, and when we are ill, everything becomes such a chore. Glad you have your son to help. I'm sure your kids feel terrible seeing you ravaged by stupid MM. But we'll fight forward, right, for our kids and animals :)) Thank you for commenting and sharing your story!
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