I have to share something with our group here. Last Monday 10/13 about 4:00 am I was awakened by a very loud crash sound. I called out my husband's name thinking he bumped into something but was not answering just to mess with me. Which he does a lot. After he didn’t answer me after my calling out I got up and went into the bathroom. What I saw scared me to death. Of course, at first look I thought I had lost him. I was screaming his name thru the tears but he would respond. He had fell off the toilet face down in the corner with his shorts down around his ankles. I tried to pull him out of the corner. He was making this loud snoring sound so at least I knew he was breathing. I pulled on his shoulder to see his face and his eyes were half rolled back and his tongue was half hanging out. I just knew he had a stroke. So I ran back in our room to get the phone to call 911. Then after them I called my son who lives about a mile and a half away. He got here in minutes. He was able to turn my husband over and get his shorts pulled up before the EMT’s got here. After my son helped him and put pillows around his head and bandaged up his nose where there was a gash that kept bleeding, he began to form his words. He was TOTALLY OUT for nearly 15 mins. The EMT’s came in and got him off the floor and back in bed. They checked all his vitals and they were normal. He was answering to her commands so she said he didn’t have a stroke or concussion. They said they would take him if he wanted to go. Well, I knew my husbands answer to that. I was hysterical in the whole situation. I was crying and having trouble breathing myself. I hope that never happens again. The EMT’s said that chemo patients tend to have sudden drops in their BP. They felt that was what it was. Any thoughts? Comments?

I am 4 years out from my stem cell transplant and my IGG numbers have remained stubbornly around the 150-160 mark. This is way below the bottom end of normal. My oncologists (I am now on my third in four years) as well as my MM specialists have all told me that I do not need to get IVIG unless I am getting a lot of infections. I am very careful when I go out (which is not often), always wear a mask around other people and do not eat out or go to places with crowds. I haven't had any infections so far but I'm pretty sure that is mostly because of how careful I am. What has been others experience with getting IVIG? Has anyone gotten it as a prophylactic?

I'm looking for a new hospital that puts emphasis on bone health. Currently, I'm at HUP with fabulous docs but when it comes to my bone health it's a miss. Even though I've been in remission since 9/23, I had another compression fracture in Feb and now somethings brewing agn. I pushed for new testing and pet scan showed tons of new lesions throughout. I'm awaiting a bone marrow biopsy, as well. If I am in "remission" and my dr kept saying everything was great, why is this happening and why isn't more emphasis put on bone health? I've also watched my m-spike increasing since May, but still in safe zone at .5 Background: In 2020, I started w/ xgeva which caused osteonecrosis. I now receive zomeda, but only twice a yr.

I am a 54 years old male and have been with low risk SMM for the past 4 years. If i have to have any life insurance, are there any chances with this health condition?

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.