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sapphireLlama
Multiple Myeloma Discussion • November 7
Teeth implant
Has anyone has had teeth implant while on multiple myeloma? I’m interesting about inthe healing process of teeth implant. I wanted to have one, but I’m kind of scared just in case it doesn’t heal properly. Any one ?????
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Iliana • Admin
Multiple Myeloma Discussion • November 6
Celebrating Our HealthTree Challenge Fundraisers
That’s a wrap on the 2025 HealthTree Challenge: Hike + Wellness Fundraiser for All Blood Cancers! 🏔️ This incredible team of 20 participants pushed themselves physically and mentally, raising vital funds to fuel blood cancer research. Huge thanks to our 2025 Challengers and their amazing supporters for believing in HealthTree’s mission. Inspired to continue making an impact? Meet our Challengers and support them in reaching their goals! https://give.healthtree.org/event/healthtree-challenge-hike-and-wellness/e663485?c_src=socialmedia Together We Care. Together We Cure.
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KIgKappa
Multiple Myeloma Discussion • November 5
Not tolerating lenalidomide 10mg after ASCT
Encountering severe body hives with my 1st Rx after my ASCT in MAR. Lenalidomide 25mg was part of my induction therapy (KRd) and I had some minor rashes, but now at 10mg, I just cannot tolerate the hives. I can't take it for any longer than 7 days and I have to stop, use steriods, then try again. I have been trying this since the end of AUG. Anyone else experience this? If so, did a reduced dose ot 5mg or 2.5mg help? Thanks in advance.
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MLichtenstein63
Multiple Myeloma Discussion • November 5
Exciting News - MRD Negative
I am 64 years old, diagnosed with MM last August. I was in a medical trial but ended up in the "control" group receiving a ASCT in June. My latest bone marrow aspiration is in....I am MRD Negative (1:100,000)! I am happy beyond belief. We always hope for these results, but don't believe that it can really happen! Well, it does! Happy to share my experiences with anyone. I am posting this both to share this great news and also to advertise that ASCT really does work. It's doesn't work for everyone and not as well for everyone, but it is still the Gold Standard of Treatment for Newly Diagnosed MM patience - I am a living example! Moshe Lichtenstein mlichtenstein.mbl@gmail.com
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ChioOsuna
Multiple Myeloma Discussion • November 5
#10DayCaregiverChallenge!
Are you ready for the Challenge? 💜 For the next 10 days, we’ll share a simple daily prompt to help you take a few moments for yourself. Each day’s idea will guide you to pause, relax, and practice a little self-care, because you deserve it. Here’s how to join: 1. Follow the daily prompt we post on our Instagram Stories and take a moment for self-care. 2. Take a photo and share your self-care moment on your Instagram Story and tag @healthtreeorg so we can celebrate you and other amazing caregivers. Stay tuned, we’ll be sharing your stories and special moments on HealthTree Stories!
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DIahanna • Admin
Multiple Myeloma Discussion • November 5
ACA Open Enrollment
Open enrollment for ACA started on Nov 1st and will run till Dec 15th and possibly through Jan 15th or later depending on the state in which you live. I know that deciding on a plan while not knowing if the subsidies are going to continue or not is a challenge. Make sure your contact information address phone numbers as well as income has been updated on the the ACA site. Don't delay registering or looking at possibly other insurance coverage if it is available to you such as spouse employer insurance.
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Robin
Multiple Myeloma Discussion • November 5
Medicare Part D
When comparing plans this year, I noticed that the cost of Acyclovir in even the low premium plans has increased dramatically. I wonder why and if there is a generic version for this drug.
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margarim
Multiple Myeloma Discussion • November 4
Joint pain and muscle tightness with Teclistamab
Has anyone experienced knee pain and swelling, rigid calf muscles and limited range of motion in the joints (knees)while on Teclistamab? I have had several tests to determine the root cause but everything has come back negative which is leading me to believe that it is a side effect of the medication.
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carryon4ever
Multiple Myeloma Discussion • November 4
Fasting
Hello, has anyone used fasting as a way to reduce your numbers, symptoms, what type of fasting did you do, length and outcome. Thank you.
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Ogamisa
Multiple Myeloma Discussion • November 4
Car-t and talvey
I had Car-T therapy in June of this year and PET scans in October showed the myeloma was still active. I have had one full dose of Talquetamab and will continue with a biweekly dosage of 90mg. I still have bone pains but due for a PET scan in a couple of weeks.
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gknautz
Multiple Myeloma Discussion • November 3
velcade stopping after 6 months
Hi, I did induction therapy with sarclisa, vel, dex, and rev then sct then started on Dara, vel,dex and 10mg relimid. I am coming up to 6 months of this and the doc is suggesting I stop the velcade after 6 months and continue the dara, dex and rel. Anyone else familiar with this?? no adverse effects.
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cejiri
Multiple Myeloma Discussion • November 3
Managing Kd Infusion Speed & Side Effects?
Hi everyone, I’m on Isa-Kd (isatuximab + carfilzomib + dex 20 mg only week 1) since Oct 2024. Stable VGPR, FLC suppressed. 4–5 weeks ago I shortened carfilzomib infusion (my idea to save time and reduce anxiety in box). Since then: Nausea G2 (vomited Thursday night) Low-grade feverish feeling G1 Headache G2 (taking paracetamol) Brain fog G2 (worse than my baseline chemo-brain) KO Friday/Saturday → missed sports which I try to do daily Labs just spiked: CRP 1.3 → 6.3 mg/L (+385 %) Triglycerides 212 → 479 mg/dL (+126 %) Questions for the group: Anyone on Isa-Kd / Kd with symptoms + CRP/TG spike after shortening infusion? 1) Did slowing back the infusion fix it? 2) Fenofibrate helped your TG? 3) Any pre-med tricks (montelukast, olanzapine) for delayed IRR? Thanks!
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ladeseck
General Discussion • November 3
Post stem cell concern
Our 31 year old daughter has a terrible gag reflex (has all of her life) and is really nervous about getting a feeding tube placed after her Stem cell transplant:-( She is afraid she is just going to throw-up the second they try to place it! She knows that this has been shown to allow her other organs to basically not work so hard and so she can just get the nutrition she needs, but is really freaking out about this! Any suggestions or recommendations? Anyone else have this issue?
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Bella
Multiple Myeloma Discussion • November 2
Myeloma Returns
Has anyone in this feed know of a situation after a successful Car T Cell Therapy (treatment date June 30, 1025), for several months and suddenly develop swollen masses developing in their neck, head and groin? This growth developed within 3 Weeks in October after 4 months of successful recovery?
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Spring2
Multiple Myeloma Discussion • November 1
Lower bone marrow % at diagnosis
I was wondering if any patients have been diagnosed with MM at a lower bone marrow percent eg 15% or less. My doctor said that bone marrow is notoriously patchy and can vary based on where it is taken from.
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Isaac
Multiple Myeloma Discussion • November 1
Blenrep (belantamab mafodotin)
Hello, I just learned that the FDA just approved Blenrep (belantamab mafodotin) on 23 October 2025. I understand the most common side effects is ocular toxicity/vision problems. Has anyone taken this drug yet, and what has your experience been? I'm considering asking my oncologist to put me on it instead of Kyprolis, since I'd rather have vision problems than heart problems. I appreciate your response in advance!
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kenlevy
Multiple Myeloma Discussion • October 31
CPR Fund for MM Now Open
CPR Fund Now Open: Multiple Myeloma The specific eligibility criteria for the Multiple Myeloma fund can be found at https://copays.org/funds/. For personal assistance with the application process please contact us toll-free at 866-512-3861 or visit our application portals at https://portal.copays.org/#/login, with access available for patients, providers, and pharmacies. PAF on Facebook CPR Website PAF YouTube Channel Copyright © 2025 Patient Advocate Foundation, All rights reserved. You signed up for this list in order to receive messages, newsletters, event announcements and other relevant information from Patient Advocate Foundation. Our mailing address is: Patient Advocate Foundation 421 Butler Farm Road Hampton, VA 23666