Waking up is good! One day at a time. Thanks for posting this. I was diagnosed with smouldering MM in 2012 and have two transplants behind me. Feel pretty good right now and am very grateful.
12
u/LonelyChampionship17
Seven years for me. Still on maintenance but I work full time and have a good life. The gratitude does not fade.
11
u/LeaString
Powerful telling and so happy you are here to write it. Ten years from back then on dex and one other drug only…you really beat the odds on SOC back then. I’m sorry you are in pain however. I hope you get reprieves from it with the help of palliative care. But to have no signs of disease now and off treatment for three years is something to be thankful for and celebrate. Taking wins when you can.
I read your post to my guy, who like you was stage 3 with bone damage at diagnosis. He found it very interesting and hopeful. Back then when he asked, ten years was a good estimate for him. He’s now at almost 4. We’re hopeful for many more beyond the ten and feel good of his chances with advances in MM research and treatment. He was in extreme pain at diagnosis with several collapsed vertebrae, underwent ASCT, and still on treatment. Fortunately he feels good and without pain.
Guess we never know what tomorrow brings but tomorrow does hold hope for better. Thank you for sharing your anniversary with us and we both wish you another ten at least. It’s encouraging to hear more stories of people living longer and longer lives.
11
u/iNap2Much
Amen brother! Fellow MM patient here, bone marrow transplant last November and now recovering steadily. Glad for your recovery results. Hoping mine are the same.
10
u/L31121
Thank you for your story. I can only hope to make it at least that long. I'm going on 2 years since being diagnosed at stage 3 also.
8
u/BrokenEffex
Thank you for posting this.
I’m 1 month post-BMT and 6 months post posterior spinal fusion from T9 to L1 with a corpectomy device at T11.
I deal with pain every day, usually around a 7–8 out of 10. Right now, it’s my biggest source of anxiety. I’m 37, and it feels like the rest of my life may be heading toward pain management, which honestly scares the hell out of me.
Your take makes it seem a little less severe than the picture my mind has been painting, so again, thank you.
8
u/DeciduousEmu
Thanks for sharing I think I'm one of the fortunate few where they diagnosed me very early before I had any CRAB symptoms.
Unfortunately my MM is considered high risk due to TP53 deletion from the genetic analysis.
Hopefully I can get as many years as you.
6
u/Fantastic_Fly_6434
Thanks for your hopeful post. It means 10 years and beyond is doable for all of us. If you don't mind me asking, where is the pain coming from?. Bless you.
4
u/Icy-Town-5355
9 years for me as of 4/7/17. I don't focus on it, and I think this is why I'm still here.
Hugs to you all xox
4
u/ShadowBard0962
Thank you for sharing your story. 🫂🫂 Going on 4 years for me. Like you, I an in pain everyday all day, on Revlimid, but the cancer is in “deep remission”. I just saw my oncologist this past Thursday and he said I good stop the meds pending a negative bone marrow biopsy! So, wish me luck.
3
u/Mommie62
Good for you. I have chronic pain and a resource that helped me is an app called curable. They also have a Facebook group. Pain is a fun y thing despite things being repaired or healed the pain can persist but with the help of curable you can work in breaking down the established pain pathways . I wish you luck. My hubby has mm. He was low risk. Nearly 4 yrs post transplant and still on treatment. Doing well other than all his arthritis decking his joints. Awaiting shoulder replacement and had brutal foot surgery 5 mos ago
3
u/WerewolfBarMitzvah09
Thanks so much for your sharing your story. You're very strong. This gives me hope for my family member with MM.
3
u/tofuraisin
Thank you for your post and I am so happy that you are cancer free!
3
u/BB5er
My wife is almost 17 years post-transplant. Even off the Rev for a few months, here and there, the pain is more than it used to be. Like you, she works through it. Thanks for sharing your story.
3
u/Myeloma-Fighter
10 years is a milestone. I like seeing posts like this. It gives people like me hope. If you don't mind me asking, how old are you?
3
u/AltruisticAccount909
How are you able to be off maintenance therapy?
2
u/Sad_Secret8253
Thanks for sharing your story! sending lots of love and healing energy your way for the rest of your incredible journey 🙌🏻
2
u/Sorcia_Lawson
I had a very similar diagnosis story - broken clavicle, stage 3. I'm at 7½ years. But, my treatment ended up more complicated with more broken bones and other complications. The chronic and long-term pain sucks.
But, similarly I'm appreciating still being here. Things with MM can change on a dime. For a while, I wasn't sure I'd make it to year 3 let alone year 7!
2
u/Redneck-Astronomer
I appreciate your post, as it gives me insight into my fight. Diagnosed over a year and half ago (MM IgD lambda, an unusual one), started Griffin induction right away and had ASCT four months into the treatment. It's been a year and three months since the stem cell transplant and am currently in the maintenance chemo with only Velcade. Pain is there, but I have a good palliative care physician as well. Wishing you all the best in the path ahead you.
2
u/Mantisman51
I was told it was a ASCT or palliative care. I couldn't wait to get the ASCT started. I'm glad you're doing well.