Over the past four years I've been dealing wih MGUS and this past September myKappa/lamda light chain ratio went up to 110 so my Dr.(hemotologist/Oncologist suggested I have a bone marrow biopsy which I had in late September. The results of the biospy show I have 15% plasma cells in my bone marrow and the FISH results show I have a high risk for MYC/igh myeloma which I understand is an agressive, hard to treat myeloma. I will be 80 years old in December and I have no other Myeloma symptoms like kidney problems, high calcium, and anemia. All my other blood work has been normal for the past four years. I'm in good health and walk on a regular basis. Is anyone else dealing with this issue? My Dr. has requested I have blood work every 3 months which I have already scheduled. I hoping I will continue to be healthy, but if not, does anyone have the difficult to treat myeloma and if so, what helpful information can you give me. Thank you for your response.

Has anyone never recovered IGG levels back to anything close to normal and not gotten IVIG treatment?

Hello have any one out there had the Bispecific done

Does anyone know about Beta 2 MICROGLOBULIN Serum and a level of 3.38? I’m getting confusing information. Thank you!

Anybody have MDS AND HAVING SUCCESS WITH CHEMO.? Ever go off of it?

Anyone familiar with tooth & jaw pain that flares up for several days & then subsides. An upper tooth that is capped aches periodically. Recently I’m also having pain in the area by my back lower left molar. The pain can be controlled with Tylenol. I’m receiving treatment for relapsed myeloma.

Today is Open Enrollment for Medicare. Please review your plan annual change docs you received in the mail. Make sure you still have the coverage you need. Costs has increased and coverage areas networks may have changed.

Medicare Enrollment Starts today!! Review your Annual Plan change booklet that you should have received from your insurance plan. Look for any changes that will not benefit you. Are your providers still in network? Is your insurance plan still good for you?

anybody have neck issues with their myeloma....my husband has a stiff neck, can't turn side to side, been about 3 days and no change....trouble sleeping and has to take Tylenol constantly

A hidden tool.....My oncologist team told me about taking probiotics on an empty stomach in a pill form and it helps with constipation far better than anything else. Walmart or prescribed. Take 2 tablets a day. I take 1 in the AM and 1 at night. If you aren't going anywhere for 2 hours you can take them together in the AM. I think food from 3 weeks ago was dislodged. 😆

¿VAS A PASAR POR UN TRASPLANTE? Únete a este evento diseñado para pacientes y cuidadores con mieloma múltiple. Conoce cómo prepararte para el trasplante, descubre un checklist práctico para los primeros 100 días creado por otros pacientes y escucha la experiencia de Susana Vivares, coach y paciente, sobre su propio camino. Una sesión con consejos reales, apoyo y recursos para transitar esta etapa con mayor confianza. INSCRÍBETE: https://healthtree.org/myeloma/community/events/oct25-mieloma-transplante-checklist

I'm interested if anyone has developed MDS as a result of chemotherapy for MM treatment. If so, could you tell me what that experience has been like?

I was diagnosed with MM in 2019; 5 months taking Revlimid, Velcade and Dex.; stem cell transplant in same year. Recovered from transplant in 3 months then began taking 10 mg Revlimid for five years (21 days on 7 days 0ff). Woke up at 4:00 am in October, 2023 with burning on my face, upper abdomen, tops of thighs and shins. It felt like severe sunburn. After many tests and conversation with my neurologist and oncologist, I was diagnosed with truncal neuropathy and was taken off of Revlimid. Apparently, once one gets neuropathy it usually doesn't go away. It is now October 12, 2025 and I continue to experience daily occurrences of burning in my face and upper abdomen. The tops of my thighs and shins rarely seem to be on fire. I now take three 300 mg gabapentin capsules spaced during the day and one 300 mg time release gabapentin tablet at night. Every day the burning usually begins by 2:00 pm when I take the first gabapentin capsule followed every 2 hours. I then take the time release capsule by 7:00 pm. Sometimes the burning begins as early as 10:00 am. I then adjust when I begin taking gabapentin. I don't know if what I have experienced helps anyone else. I know that I wish I had known to look out for different forms of neuropathy. The only one I had read and heard about from MM support group members was peripheral neuropathy.

I am a SMM patient but want to be ready with a right insurance. Company sponsored insurance benefits will be open for sign up later this month. I wanted to be ready and prepared if and when i move into active treatment. Hence, I wanted to seek some help here who can guide me to choose the right plan? Please advise.

In Jan 26 I will be on Medicare/Medicaid. How will I get my Pom? My local pharmacy does not handle this drug. Presently I am on private insurance and get it via CVS pharmacy. I guess I could get it delivered to the cancer center pharmacy. This is all new to me - presently it's keeping me up at night.