Smoldering Multiple Myeloma and symptoms

Good morning folks,
I have an update on what is next for me. A clinical trial is reopening from Regeneron is supporting this. It’s a bispecific, Linvoseltmab, for Non high risk Smoldering Multiple Myeloma and High Risk MGUS. I have a consent appointment scheduled the first week of November with a full day of testing, labs, images, biopsy etc the following to qualify. Treatment will begin in December. I am grateful that I am able to consider and plan to participate as well as worried, and concerned. It’s has not been simple to arrive at this moment. This treatment is FDA approved and used in 4th or later line of treatment with good results and the research is working to ascertain if it might be even more effective as a first line, early in the progression. At least that’s what I understand from my research. I will do my best to share the experience with the community in the interest of supporting this trial and the learning as best I can.
For my baseline I am actually doing much better than I was back in May. I continued to decline with some challenging symptoms, extreme fatigue, plenty of neuropathy in extremities, neck and especially feet, walking was difficult. I managed to travel with family, becoming more active, and spending 10 days at elevation in the mountains, and began to feel much better. I have been working out consistently during the moment of feeling able to and am much stronger than I was, working cardio, strength training, swimming with more rest between workouts and have maintained this for 2 months. It’s strange to consider going into treatment when I am feeling much better and it’s not so easy to remember the discomfort and fatigue that was swallowing me up last may and June. I have two friends who are both working thru translplants and moving into maintenance and they are both doing well. I guess one of the ways I have organized this moment is to hope that if there is a chance for me to find a route that would not have to include such chemo down the road. I will also be getting Dex to protect my system from the more toxic effects. Back in the day I have used Dex while mountaineering for high altitude. It did rev me up, and I do get irritable on it but it makes sense to help my body stand up to the carnage that will ensue when my T-cells get special glasses and go on a killing spree….thank you for this community and I am hopeful that my posts will be useful for folks and their journey. I send my greetings to each and every person here. I will let folks know if I qualify sometime in November. They were really helpful and did adjust the schedule to allow me to travel to South Africa to connect to a community of artists that I hope to collaborate with in the future which I am able to imagine at this point. Thanks
Brian

@maddogstormy
Hi Brian,
I too am SMM since 2022 and my numbers are ratcheting up slowly.
All the best. May I ask why they decided to start treatment?
Best regards
Mascot

@mascot
Hi. It’s been on my radar from the beginning and I have a hunch that it is a good plan for me given all of the cofactors. My hematologist agrees and the oncologist is one of the researchers on the trial. It’s also a treatment that has been fda approved for late stage so there is a track record of safety and effectiveness. There is risk and I am working to stay present with that. As well as keep a clear mind. Thanks for the question.

@treehouse5437
How long did you do treatment

Good morning folks,
I have an update on what is next for me. A clinical trial is reopening from Regeneron is supporting this. It’s a bispecific, Linvoseltmab, for Non high risk Smoldering Multiple Myeloma and High Risk MGUS. I have a consent appointment scheduled the first week of November with a full day of testing, labs, images, biopsy etc the following to qualify. Treatment will begin in December. I am grateful that I am able to consider and plan to participate as well as worried, and concerned. It’s has not been simple to arrive at this moment. This treatment is FDA approved and used in 4th or later line of treatment with good results and the research is working to ascertain if it might be even more effective as a first line, early in the progression. At least that’s what I understand from my research. I will do my best to share the experience with the community in the interest of supporting this trial and the learning as best I can.
For my baseline I am actually doing much better than I was back in May. I continued to decline with some challenging symptoms, extreme fatigue, plenty of neuropathy in extremities, neck and especially feet, walking was difficult. I managed to travel with family, becoming more active, and spending 10 days at elevation in the mountains, and began to feel much better. I have been working out consistently during the moment of feeling able to and am much stronger than I was, working cardio, strength training, swimming with more rest between workouts and have maintained this for 2 months. It’s strange to consider going into treatment when I am feeling much better and it’s not so easy to remember the discomfort and fatigue that was swallowing me up last may and June. I have two friends who are both working thru translplants and moving into maintenance and they are both doing well. I guess one of the ways I have organized this moment is to hope that if there is a chance for me to find a route that would not have to include such chemo down the road. I will also be getting Dex to protect my system from the more toxic effects. Back in the day I have used Dex while mountaineering for high altitude. It did rev me up, and I do get irritable on it but it makes sense to help my body stand up to the carnage that will ensue when my T-cells get special glasses and go on a killing spree….thank you for this community and I am hopeful that my posts will be useful for folks and their journey. I send my greetings to each and every person here. I will let folks know if I qualify sometime in November. They were really helpful and did adjust the schedule to allow me to travel to South Africa to connect to a community of artists that I hope to collaborate with in the future which I am able to imagine at this point. Thanks
Brian

Good morning folks,
I have an update on what is next for me. A clinical trial is reopening from Regeneron is supporting this. It’s a bispecific, Linvoseltmab, for Non high risk Smoldering Multiple Myeloma and High Risk MGUS. I have a consent appointment scheduled the first week of November with a full day of testing, labs, images, biopsy etc the following to qualify. Treatment will begin in December. I am grateful that I am able to consider and plan to participate as well as worried, and concerned. It’s has not been simple to arrive at this moment. This treatment is FDA approved and used in 4th or later line of treatment with good results and the research is working to ascertain if it might be even more effective as a first line, early in the progression. At least that’s what I understand from my research. I will do my best to share the experience with the community in the interest of supporting this trial and the learning as best I can.
For my baseline I am actually doing much better than I was back in May. I continued to decline with some challenging symptoms, extreme fatigue, plenty of neuropathy in extremities, neck and especially feet, walking was difficult. I managed to travel with family, becoming more active, and spending 10 days at elevation in the mountains, and began to feel much better. I have been working out consistently during the moment of feeling able to and am much stronger than I was, working cardio, strength training, swimming with more rest between workouts and have maintained this for 2 months. It’s strange to consider going into treatment when I am feeling much better and it’s not so easy to remember the discomfort and fatigue that was swallowing me up last may and June. I have two friends who are both working thru translplants and moving into maintenance and they are both doing well. I guess one of the ways I have organized this moment is to hope that if there is a chance for me to find a route that would not have to include such chemo down the road. I will also be getting Dex to protect my system from the more toxic effects. Back in the day I have used Dex while mountaineering for high altitude. It did rev me up, and I do get irritable on it but it makes sense to help my body stand up to the carnage that will ensue when my T-cells get special glasses and go on a killing spree….thank you for this community and I am hopeful that my posts will be useful for folks and their journey. I send my greetings to each and every person here. I will let folks know if I qualify sometime in November. They were really helpful and did adjust the schedule to allow me to travel to South Africa to connect to a community of artists that I hope to collaborate with in the future which I am able to imagine at this point. Thanks
Brian