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Blood disorders, Cancer, Bone, joint, and muscle disorders

Posts (84)

Dec 20, 2019 · Multiple Myeloma in Blood Cancers & Disorders

Hi again. I started my first treatment for Kappa MM in June 2016 at age 75. Since then I have been on 5 more protocols. As they stopped being effective, as all eventually do, my local doctor consulted with Mayo doctor and we moved forward. There are so many new treatments for blood cancers that there is reason for high hopes for all of us! You may laugh but I love change. Every change was welcome. Bottom line, all have helped much in the way of managing a chronic disease. You ask if I am in remission. The answer is yes, but the way I got there was pretty much divine. This fall I had 2 major emergency surgeries in 8 days. On learning what was ahead I asked God to take care of all things cancer because I would have my hands full with all things spinal and neurological. Two months later, after no treatment and unimaginable stress, it was time to get labs and restart treatments. We got a Christmas miracle. Against all things reasonable I was in full remission. No myeloma cells in blood or urine. So now we are back to the Mayo plan to ease into maintenance. Please know that there is always a treatment option available these days. Is your mom understanding MM in the way you are, sharing in conversation together what you learn?

Dec 19, 2019 · Multiple Myeloma in Blood Cancers & Disorders

Hi! First, I hope you are having a happy time of celebrating the season holiday. To us it is Merry Christmas.
As for onset of treatment, the every 3 month check of labs made the decision. My Mayo doctor said that when the M Spike reached 3.2 he would start treatment. Over the years I just dealt with whatever health issues surfaced and didn't worry about MM. My position was that I refused to be held hostage by fear, especially fear of something that might never happen. Routine was get labs, see local oncologist/hematoligist, put MM on "back burner" and keep living life. We made annual trips to Mayo, our "vacations"! When benchmark was hit my response was, "Ok, let's do this". And my 2 doctors started working together. So glad I didn't waste the beautiful 12 years with worry. Does this help?

Dec 7, 2019 · Reclast Infusion in Bones, Joints & Muscles

I had significant generalized pain, but when I now get Zometa I take Claritin few days before, day of and few days after. MUCH less discomfort. When I was on Darzalex I had similar pain. Took Claritin daily for the year. Without that help I wouldn't have been able to continue that protocol. Good luck with whatever it takes for you to find effective treatment. We are all so different. Will you let us know how you recover from this? Nancy

Dec 5, 2019 · Cancer Related Brain Fog: How do you cope with it? in Breast Cancer

Thank you, Laurie. Sometimes we need to hear that one more time. It is real.

Nov 25, 2019 · Waiting for scan results. Is this part of scanxiety? in Cancer: Managing Symptoms

Thank you. This experience has been full of blessings and we are again reminded of a wonderful life.

Nov 23, 2019 · Fatigue and cancer treatment in Cancer: Managing Symptoms

Hi Merry. This has been the toughest thing I have had to deal with yet. Of the 3 prior cervical spinal fusions, one totally broke loose from poor bone quality and the cord was severely compromised. The second prior fusion had to be removed, and two surgeries, anterior and posterior, a week apart, resulted in fusions C2 to T2 and discectomy at C7-T1. The 10 inch incision down my back has healed beautifully and pain is getting more tolerable every day. I was off myeloma treatment 7 weeks, started back 2 weeks ago. That has caused some back sliding since I am still healing, but just some exaggerated side effects. I am so blessed that some severe problems were discovered and dealt with and I will come out of this better than before. One miraculous thing is that hard substance had formed on my spinal cord and had to be "chiseled" off the cord!!! This Thanksgiving we have so much that blesses us. I am getting stronger each week and have great hope for Christmas and moving into the new year. Add to that, we will have a new great grandchild in about 3 more weeks. I see lots of rocking and cuddles in my near future. Yes, we are more than blessed, and God has been present every step of the way. Gene, my husband, was my rock through it all. On December 1 we will celebrate our 57th Anniversary, and we couldn't be more grateful. When my Myeloma blood work showed miraculous leaps to remission while I was OFF treatment, I had replay in my head/heart, "Be still and know that I am God". There is nothing more to say. I hope others can find hope in my experience and know that we are never alone. That is the source of my forever peace. Thank you so much for thinking of me and asking. I am slowly following some conversations on Connect and love the work all of you are doing. Nancy

Nov 4, 2019 · Fatigue and cancer treatment in Cancer: Managing Symptoms

I am currently recovering from 2 emergency surgeries on spinal cord and cervical and thoracic spine. Please know all that efforts to keep legs and abdomen strong have been huge assets in this recent adventure. Anything we do to help ourselves is not wasted. When I was able to stand the night after surgery, the amazed nurse asked how I did that. "Patients ALWAYS need assistance." And, yes, that culprit fatigue doesn't miraculously disappear. But having weapons to move forward is empowering. Many helpful ideas have been posted above. Something for everyone! Not quite a candy store, but close. 😀 Thank you everyone. Embrace your strengths. Nancy