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.

NK-LGLL is my recent diagnosis I am trying to learn more about this to understand what to expect in the future I am hoping someone can help

Hi I had a SCT September 2024 and am now MRD. My doctor wants me to have a yearly scan and I’m just wondering if anyone has been in this situation and had scan that identified Myeloma that blood tests were not picking up. Thank you

I am going this week to have cells collected for Car-T. (CARVYKT) treatment. I am having the treatment done at the Sara Cannon Research Institute in Nashville. I will be Signing consents on Tuesday, get IV inserted on Wednesday and cell collection on Thursday(4 to 6 hrs). The date for cell return is scheduled for November 25th. I will have to be there a week before on the November 18th for pre treatment. This will include new IV inserted on the 17th that will stay for 21 days. On the 19th,20th, and 21st. I will receive low dose chemo. I will rest 22nd,23rd and 24th. On the 25th I will get cells back(15 min or so). Will have blood work daily for 14 days as well as a call nightly to make sure I don’t have any neurological issues. After 14 days I will go Monday Wednesday and Friday for blood work. I share this so anyone who may be looking at this in the future will kinda see the process of the Car-T treatment.

hi everyone, I was wondering how many of you had to get prior authorization from your insurance company before you could start treatment only to have your insurance company deny coverage for said chemo injections. I have bcbs of texas federal , they finally approved the revlimid capsule but denied the darzalex and velcade. and nobody is telling me why. Dr was supposed to have a peer to peer appeal this past Friday. and since Monday is a holiday , I am left here stewing in my own juices feeling like I have been dismissed and back burnered