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SCT For Non Secretory Myeloma With Tumor

SCT For Non Secretory Myeloma With Tumor

I was diagnosed 9/2019 with MM that impacted my pelvis and spine. I chose not to do SCT and my light chain counts have been stable using Revlimid. At the beginnings of March this year, my doctor said I could take a break from Revlimid
Two weeks later, we found out that the myeloma had actually become non secretory (I.e. did not secrete the light chains any more) and it had destroyed my T3 vertebrae and 4 other vertebrae in that area. There was also a 3 centimeter myeloma tumor in the same… read more

posted 2 months ago
A MyMyelomaTeam Member said:

You might want to look at a PET/CT. It can find cancer issues with bones and soft tissue that other imaging methods will not show. Another cancer imaging is a Full Body Bone Scan (FBBS) but it will not show cancer in tissues or organs. FBBS is probably easier to get from a resource being available and its a good starting point. When I was in the hospital for my initial testing. They had X-Ray, CT, MRI, FBBS but not PET/CT at that facility. I went to another facility for the PET/CT. I recently had a Bone Density Test (BDT). I'd recommend it as well to set a baseline. Though men do not normally get a BDT, since I had MM my GP was glad to write the order. Glad I got the test - it showed where I had any bone weakness and that it was only minor.

posted about 1 month ago
A MyMyelomaTeam Member said:

I’m so sorry you’re experiencing this Julie. I don’t have an answer either. I would think your doctors might have had another patient with this experience that you could talk to. Hopefully, you’ll get more responses here as well. I did have SCT last August and I’m doing ok but I never know what a day will bring as far as fatigue, pain and side effects. I try to be thankful for each day God grants me and to focus on the simple pleasures in life. It’s hard not to think about the future but I resist fear and discouragement daily. Our God is mightier than any disease! He will give you strength for whatever decision you make.💗

posted 2 months ago
A MyMyelomaTeam Member said:

I have had the aching pain you describe since 2019 when multiple vertebrae in my lower back collapsed. I got vertebroplasty in manyI of the lower vertebrae to stabilize, so don’t worry about that ache and it has gotten better. I take Tylenol or Norco when my back is sore from a long day of activity and have avoided ibuprophen. My back also likes afternoon naps to take the pressure off. 😀
In March, it was more of a stabbing pain in my shoulder blades when lying on my sides to sleep at night. It was strange that there was no pain in my upper back. The shoulder blade pain was caused by pressure of the tumor on the spinal nerve that radiated to my shoulder blades. Very strange/scarey that I felt nothing in my upper back.
Thanks for your reply!

posted 2 months ago
A MyMyelomaTeam Member said:

I wish I had an answer for you. I don't. It sounds like SCT may be a good option that will prevent this bone damage in the future? I am having back pain too. I am getting an MRI soon. Can I ask you about your back pain? Was it different than the "usual" back pain? Any difference? Did advil help it? Mine is like a dull ache....hate having to worry about all of these symptoms and treatments. I hope you get some support from your doctors and end up making a decision that you feel good about.

posted 2 months ago
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