For Those, High Risk, Aggressive MM Patients, Enduring A Lot Of Pain, Please Let Me Know How Bad Your Pain Is And How Your Being Treated.
Most MM patients experience pain depending upon the person, the type of MM and how aggressive it is. Pain levels will vary from person to person. The pain can be caused by the cancer itself, arthritis, and the medications you take. For instance, medications will kill your cancer cells, but produce side effects such as pain. Proteasome inhibitors like Velcade, Kyprolis and Ninlaro, disrupt the process of protein recycling in myeloma cells. Broken-down proteins can accumulate in and damage the nerve cell clusters that help transmit the sensory messages of pain and touch from the spinal cord to the skin, muscles, cartilage, etc. Several immunomodulatory agents like Revlimid and Pomalyst are approved for use in myeloma. These immunomodulatory agents cause degeneration that may cause loss of myelinated nerve fibers, which can cause pain. However, to a lesser degree than Proteasome inhibitors. Immunomodulatory agents can also affect the autonomic nervous system.
In my case, pain has increased over the 6 years I’ve been in treatment. I currently use several methods for pain relief. I use Lidocaine, Diclofenac, and Capsaicin as topicals for pain relief. Orally I take Tylenol. If the pain gets too bad, I’ll use an Opiod such as Hydrocodone, and a muscle relaxer such as Baclofen. I addition, I also get OMT (Ostheo Manipulative Treatment), and Massage treatment.
Greetings from Alaska I have high-risk multiple myeloma many fractures in my ribs and spine. Pain is intense not as much now since my SCT, but I do have moments of muscle spasms in my back and ribs. I get acupuncture once a week and this has seem to help. I was not a big alternative medicine person before this, but I found that between meditation yoga and acupuncture. I’m doing well. I wish I had started years ago now i go to the cancer rehab.gym three times a week. I find it if I don’t work out or scratch or get my acupuncture I do have pain not very intense. Wishing you well and have a great day.
I have a highly aggressive form of MM diagnosed 4 months ago at age 67. No pain yet, but well aware that it could change anytime. I have much sympathy for anyone going thru constant pain. I don't fear death, but living in constant pain is one of my biggest fears. Hope you get help with the pain so your mind, body & soul can experience relaxation once again.
I have high risk and very aggressive MM, 17p deletion, etc. My pain is excruciating at times and then disappears, only to appear in a new area. MRI last week revealed 3 myeloma lesions on my right hip area, each about 3.6cm. I begin radiation for them next week which they say, should ease pain. My primary care Dr prescribed a 50mg Fentanyl patch that I knew within an hour was too strong. Returned it to pharmacy and disposed of it. Now on a 25mg Fentanyl patch that is perfect. It takes the hard edge off pain but no feeling of being high nor a stoned feeling. I value being in control of myself, not a space cadet, and this patch, for me, handles it well. I wish you all the best!
Hi RickDeLaTorre
I’ve added you to my team. I was diagnosed in January with LightChains Myeloma. I am getting Induction Treatment. My light chains which were very high are now in the normal range. I am 81 and from the start of my diagnosis I’ve had no pain. My bone marrow results showed 95 percent cancer in my bone marrow but no lesions and no pain. It might be difficult but I think it’s best not to anticipate what might happen. It’s hard enough with mm to deal with what actually is happening. Ruth277
Is There Any Cases Of MM Patients Being Diagnosed Past 65 Years That Have Survived More Than 20 Years. Seems All Long Survivors Are Young.
Do Your High Risk Genetics Stay The Same If Myeloma Returns (if You Had High Risk Genetics At Diagnosis And Achieved Full Remission)?
Final Diagnostic Based On This FISH Addendum. See Bottom On Page ADDENDUM 8/15/24