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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 :-)
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SNMidkiff
Multiple Myeloma Discussion • July 15, 2024
Rising Lambda Chains: Seeking Understanding
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Hello. I am newly diagnosed and started treatment with velcade, darzalex, dex, and revlimid in May. All my numbers seem to be going down. My protein band has gone down to 0.37 from 2.59 with my light chain ratio at normal now. I was diagnosed with IgG Kapaa. My blood was drawn last week but did not receive treatment due to double ear infection. Why would my lambda light chains rise from 80 to 170? This makes me nervous that my way of thinking about normal is incorrect.
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violetLobster
Multiple Myeloma Discussion • July 13, 2024
My Journey to Remission and Healed Lesions
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I was diagnosed with MM in the beginning of 2020 (yup! right in the beginning of Covid pandemic!!) after months of pain in my bones...I quickly got connected to the MM service at Penn Medicine and started induction. I then moved to NYC and had my ASCT at Memorial Sloan Kettering...I stayed in remission for almost 2 years, had a slight rise in Kappas so was put on Daratumamab which quickly put me back in remission. I had to get off of Revlimid as it made my immunity so low I got pneumonia so my MM doc then put me on Velcade along with the Dara. I have been in a wonderful remission ever since and my PET showed all my lytic lesions were healed!! I am so blessed and my daughter is now pregnant and I am excited to become a strong and energetic Grandma!! I continue with my Qigong and yoga and long, long walks in the city!!! Blessings to everyone here!!