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rubyCrocodile
Multiple Myeloma Discussion • July 19, 2024
Concern Over Rising Light Chains, Normal Ratio?
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Hello, I am at day 79 post SCT. I did my labs around day+60 and both free light chains were within range and ratio was at 1.12. Three weeks later, I did my labs again and the light chains doubled and are above the range. Both Kappa and Lambda were at around 28 mg/L. The ratio is at 1.02. Does this mean my I am relapsing?
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rubyCrocodile
Multiple Myeloma Discussion • July 19, 2024
Concern About Rising Light Chains Post-SCT?
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Hello, I am at day 79 post SCT. I did my labs around day+60 and both free light chains were within range and ratio was at 1.12. Three weeks later, I did my labs again and the light chains doubled and are above the range. Both Kappa and Lambda were at around 28 mg/L. The ratio is at 1.02. Does this mean my I am relapsing?
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Secops808
Multiple Myeloma Discussion • July 19, 2024
Considering ASCT: Is It Still Necessary?
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Thoughts on ASCT? I am standard risk, diagnosed 6 months ago, have been on CyBorD. With all the advancements in treatments, I am wondering if it is really necessary for ASCT/harvesting. I have heard that some MM specialists even not recommending ASCT since there are so many other lines of therapy now, compared to 10+ years ago. Looking forward to hear some thoughts on this topic! Have a great weekend everyone!
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Ann
Multiple Myeloma Discussion • July 19, 2024
Sharing Our Amyloidosis Panel Experience
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It was wonderful sharing the Amyloidosis panel today with QunBin and Dave. Great to finally put faces with the posts- which have been so valuable to me. Thank you to everyone who attended.
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SNMidkiff
Multiple Myeloma Discussion • July 17, 2024
Probiotics for Gut Health: Any Suggestions?
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Good Morning everyone. I was recently diagnosed with MM in May 2024. I take several supplements including Vit D, B-12, calcium, and methyl folate. After reading on gut microbe does anyone have suggestions on Probiotics? It seems some strains are better than others, so I wanted to check here to see if anyone has better efficacy with one over another. Thank you!
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Hephzibah
Multiple Myeloma Discussion • July 17, 2024
Abdominal Injection Experiences After Surgery?
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Hello, everyone. I had the CARVYKTI Car T Cell procedure in March 2023 and am thankful it helped to put me in remission until now July 2024. No chemo for over a year has been wonderful. But it's back and treatment will soon resume. The problem is, I am concerned about receiving treatment INJECTIONS in my abdomen. I've endured four life-threatening procedures in my abdomen and do not wish to receive treatment that involves injections in my abdomen if the side effects will worsen the pain I already experience from past surgeries. Can someone please share their experience with the injections in the abdomen? Thank you for making the time to read my post and provide feedback.
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Markus1982
Multiple Myeloma Discussion • July 16, 2024
My Journey: Diagnosis at 39, Fractures & Walking Again
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Hi. I'm from the UK, I was diagnosed in covid 2020. And had VCD chemo then DT-Pace chemo's in 2021 and then a stem cell transplant in January 2022. And then currently in full response, I still have to have blood tests and results every three months and have to take lenalidomide once a night for 3 weeks on and 1 week off and of course aspirin to go alongside of it. Anyone else here for the UK? I know that there are quite a few people who suffer from it in the UK so asking :-) I forgot yesterday to put I was diagnosed at 39 years old. It's strange because Myeloma used to be an older persons illness (I hate the word disease) and it now seems to attack anyone 30+. I have 6 wedge type fractures in my vertabre. Ironically 2 at the top, 2 middle and 2 near the bottom. I have to walk most days with a walking stick. To go from walking 15 miles a day to barely a mile and even then needing a stick is stupid. Although I was in a wheelchair for 4 months at one point and my now retired haematologist consultant said I would never walk again because of the damage that the cancer did to me, I said well Dr with respect you don't know me so I will tell you give me a max of 6 months and I may struggle but I will walk into your office. And I did 4 months to the day nearly. He annoyed me so much that I wanted to prove he didn't know everything. And then he retired a few months after my stem cell transplant. Now my consultant is a lovely German lady called Sylvia. Granted she doesn't do humour but she knows her job and actually said that my old consultant had no right to say if I would end up in a wheelchair the rest of my life or not. It wasn't his place. Granted with the vertabre issues I have it may lead to it one day but it's highly unlikely if I'm careful. Anyway there is a little low down on me and my journey. If you want to ask me anything please do I'm quite open. Just in case. I don't do shying away from anything. :-) Also thanks for allowing me here :-)