Your Feed

Filter by
See content from
Back to the latest
Avatar
Sally T
Multiple Myeloma Discussion • September 14, 2023
Managing Ankle Pain from Lytic Lesions - Tips?
AI-generated title
Here is a new one (at least to me). About three months ago my left ankle started swelling, and hurting when I walked. Hurt more when I lifted my for to take a step. Got a referral to an ortho/oncologist who took X-rays and his first "diagnosis" was I probably broke it in Feb when I fell in the garage and hit directly on my SST knee OR it broke and I fell. He ordered nerve studies as I also have PN in that leg. Of course waited three weeks until he finally got back to me and now said he thought I had torn a ligament -- ice it. And he wanted me to see a podiatrist. Another two weeks, another X-ray, and now voila, he says it all due to walking barefoot and I have flat feet. And Arthritis. Need to get a special brace. You guessed it, two weeks later an appointment to get fitted for an ankle brace --$1500! I ordered a brace online for $40. I said whoa. 1) All these "diagnoses" don't explain the top-of-the-foot pain, the up-the-leg deep pain, the throbbing. So, I waited to talk to my specialist today. I told him the saga since I had last discussed it with him and he shook his head. He looked at the last CAT scan of my ankle and showed me two lytic lesions in the large bone! I didn't know they were there. Dr. A told me of his very bad ankle (he said mine was beautiful compared to his. Walk through the pair, use topicals, and use the Mobix 7.5mg and try to lose weight. (Sounds like he talking to my sister!) My question is, after this LONG explanation, does anyone have suggestions on topicals or what pain relievers you use -- no opiates, please?
Avatar
une1@hotmail.com
Multiple Myeloma Discussion • September 13, 2023
A Good Reminder: Not All Scares Are MM
AI-generated title
I am on 6th treatment plan with oral chemo now. Yesterday I had some kidney function problems that I supposed could be MM. However, after spending the night in emergency rooms in two Charlotte facilities, the problem was related to Prostate. Back home with follow up to see if problem is resolved or more.
Avatar
GonzaloSotomayor
Multiple Myeloma Discussion • September 9, 2023
Seeking Tips for Managing Severe Bone Pain
AI-generated title
Hello everyone, I wanted to ask you about the bone pain, the lytic lesions that occur in MM, the effectiveness of zoledronic acid (zometa), and the fractures that arise during this disease. My dad started with pain in his femur, there is post-relapse wear and tear. He is currently receiving daratumumab (dartzalex), pomalidomide, dexamethasone, gabapentin, fluconazole, acyclovir, etc., but for pain, I can't find anything more practical than tramadol and with fewer side effects. Thanks a lot
Avatar
Banklady
Multiple Myeloma Discussion • September 9, 2023
Managing Weight Gain On Dex - Experiences?
AI-generated title
Could someone please give me their experiences with taking Dex? Does everyone gain weight with this drug? Does it make your appetite increase and is that what causes weight gain? If you control your appetite, can you control the weight gain? Thank you.
Avatar
CoyneLane
Multiple Myeloma Discussion • September 6, 2023
Finding Clinical Trials & Travel Support?
AI-generated title
My request has two parts: 1) Besides searching the HealthTree clinicaI trial search function and SparkCures, I would like to find other sources with clinical trial information, such as NIH and others, and 2) I would appreciate guidance on whether there are medical centers, NIH, etc. that provide compensation for travel and lodging expenses.
Avatar
Itapia
Multiple Myeloma Discussion • September 5, 2023
Prolia Experiences and Side Effects?
AI-generated title
Has anyone tried or is on Prolia for osteoporosis? What is your experience and side effects? I have heard and read bad things Can anyone share their experience please
Avatar
Itapia
Multiple Myeloma Discussion • September 5, 2023
Considering Prolia and Kyphoplasty: Advice?
AI-generated title
Hi my mother was diagnosed with MM 2020. She recently got diagnose with Osteoporosis and has a couple lumbar compression fractures. Her doctor is recommending PROLIA. Has anyone tried Prolia what are your side effects and experience? I am scared because I have read horrible side defects such as osteonecrosis of jaw, severe muscle and bone pain, and rebound or stress fractures increases? Also we are looking into possibly doing kyphoplasty. Any thoughts please advice
Avatar
lavenderYak
Multiple Myeloma Discussion • September 2, 2023
Deciding on ASCT for Mom in Remission
AI-generated title
Hello all. My mother was diagnosed with Lamba light chain MM in April 2023 at the age of 60 yo her FISH test was normal but had a few small bone lesions around her body. She started her treatment with a MM specialist at UCI in Orange, CA in June 5. Her doctor slowly started her on Dexamethasone first for two weeks, then every week or two Velcade, then Revlimid and lastly Daratumumab by July 11 her doctor confirmed she was in a complete remission 2-3 months earlier than average according to her doctor. The next step her doctor is recommending is an Autologous Stem Cell Transplant (ASCT) soon. We are hopeful but scared for this next challenge. We would appreciate your thoughts if this the best plan, other treatment alternatives for her or share your stories with your ASCT. Thank you so much.
Avatar
lavenderYak
Multiple Myeloma Discussion • September 2, 2023
Sharing Hope: Mom's Journey to Remission
AI-generated title
Hello all. I thought of sharing my mom's journey since being diagnosed with Lamba light chain MM in April 2023 at 60 years old. I hope to help or give someone hope just as some of your stories did to us. Her FISH test was normal and a few small bone lesions around her body per her PET scan. She started her treatment with a MM specialist at UCI in Orange, CA in June 5. Since my mother wanted to avoid having to get a blood transfusion as much as possible, her doctor slowly started her on Dexamethasone first for two weeks, then every week or two Velcade, then Revlimid and lastly Daratumumab by July 11 her doctor confirmed she was in a complete remission 2-3 months earlier than average according to her doctor. Although she did felt tired, fatigue at some times, specially after her infusions days once a week she did not have major side effects. We believe what helped her the most was her low carb and low sugar diet, taking daily vitamins D, B12, B complex, Iron, Folic acid, Vitamin D, and her green juice Beetroot juice every other day. She also takes IV iron and vitamins every week which are a big help with hydration and energy boost to withstand the treatment without interruptions and major side effects. The next step her doctor is recommending is an Autologous Stem Cell Transplant (ASCT) soon. We are hopeful but scared for this next challenge.
Avatar
Cyndi
Multiple Myeloma Discussion • September 1, 2023
Coping With Husband's Complications & Feeling Alone
AI-generated title
My Husband was diagnosed with MM in 2021 we have been through sct 2022, he is now in stage 3 kidney failure and heart failure. We have our good days and bad days.I am alone will all this we have a wonderful son who is going to school in TX, where he lives with his family. Thank you Cyndi
Avatar
rubyCrocodile
Multiple Myeloma Discussion • September 1, 2023
Concerned About Light Chain Plateau - Thoughts?
AI-generated title
Hello Community! I was diagnosed with high risk stage three IGG Kappa. I started my induction therapy on July 13, 2023 with VRD. My free light chain kappa was at 1934 before the treatment. After one week of treatment on VRD the Kappa's went down to 1647. In second cycle of treatment Isatuximab (Sacrlisa) was added to my weekly treatment. A week later my labs showed significant drop in kappa's, it went down to 429. I am on weekly four drug therapy of VRD + Isa. My light chain labs are done every 3 weeks. I am in my 8th week of treatment and my last labs during this week (8/30) show no improvement. Kapps are at 428. Is this normal or does this mean I am plateauing?