Multiple Myeloma is a BROKEN field | How I treat frontline | Conflicts | 1k RCTs but Weak Evidence

[@bryana8383]

Thank you, thank you, thank you!!!! My mom died of Multiple Myeloma..... and she took all of the drugs velcade, revlamid, and transplant. We thought we were lucky catching it early, but she went faster once we started. We had her less than 10 years after the diagnosis. It wasn't fair and you confirmed my belief that the drugs were too strong for her, while she believed she was the lucky one. We were so happy getting a discount off revlamid which was very new at the time. I'd often wondered what that look was on our oncologist's face was it pity just feeling sad for us or was it shame because she knew. I know what it is now. Don't ever become one of those soldiers fight an unjust war forced to just continue without questioning. You are right in the end its about the patients and long term survival. Thank for keeping it real. It was very real for us and for all those that lost someone so dear to them.

[@theskeptic2798]

Doctor your righteous anger and your charisma is so refreshing

[@sigrid3553]

Brilliant interview! Very important subject.

[@MrShreyz]

Dr. Prasad has really gone deep into clarifying the mess around the myeloma treatment plans and it’s wide acceptance/ non-acceptance, despite high number of trials. Really appreciate the time and effort here

[@seahorse2]

Thank you, VP. I have CLL and a good friend has smoldering multiple meoloma, and I was disturbed that the thalidomide drug changed the name to lentithalomide, and she has been given lentithalomide. Very concerned, this repurposing of a known harmful thalidomide drug for a different purpose. Just think, the large campaign against ivermectin as a repurposed drug - wow. Go get them.

[@junyuzhang414]

I would be cautious to call thalidomide or lenalidomide bad just bc of the pregnancy/ teratogenic risks. Yes those r true but these are also very effective drugs given for multiple myeloma treatment so I would discuss with your doctors if you are questioning why one drug was given etc. for smoldering myeloma it’s debatable on whether to treat and for some high risk pts it’s been better to treat up front again I would discuss this with ur Doctor as clinical trials are the best resource for this setting. Please don’t just listen to the internet or news but consult with ur doctor first if u have questions about ur txt.

[@MK-ih6wp]

Am I the only one who remembers a brief moment in time where they entertained giving thalidomide for COVID?? I swear I saw some headlines about it early in the lockdowns. I saw the effects of IVM with my own eyes, in my unvax elderly parents w comorbidities. I will never trust public health auths ever again. Criminals.

[@junyuzhang414]

@@MK-ih6wp IVM as in ivermectin?

[@MK-ih6wp]

@@junyuzhang414 yes

[@larryjacobs3180]

Dr. Prasad, let me start by saying that I truly admire the type of person that you are. I have been watching you for years because of your knowledge and honesty, which is very rare to find in the medical field these days. This interview devastated me. My 74 year old dad has MM. For the last 7 months, he’s been on Revlamid, Dex, Faspro, & Velcade. The goal is to get his M spike down to as close to 0 for transplant. Last we checked it, he was at 0.8. I’ve taken him to Two MM specialists in the Baltimore/DC Area- one has suggested transplant and the other has suggested a maintenance plan. We decided to go with the one who suggested transplant. My dad is falling apart! Ever since he started these meds, he’s always tired, sick, and down. It has truly just killed his spirit. And I feel as I keep lying to him that this will all make him better when I really don’t feel that way. I urge him to continue with the meds but I feel that they are doing more bad than good. I love my dad so much and watching him suffer like this is slowly killing me. Sometimes I feel as I should take him off of everything and just let him live! He allows me to call the shots and I feel as I am doing it all wrong 🥹 - Side note, he has never had any bone pain- before or after treatment. Last I have read a lot about Fenbendazole being a possible treatment. Any thoughts on this? Most importantly, If this was your dad, what would you do? Would you transplant?

[@channel1_channel]

Well put. Quality of Life.

[@MK-ih6wp]

God bless you and your father. I have been researching panacur (fenbendazole) myself as I am seeing a lot more cancer diagnoses in my social circle lately. IVM as well. I would go this route if it was my father. I wish I had known about these cheap drugs when my loved one was diagnosed with glioblastoma. He had nothing to lose with such a terminal diagnosis, he would have been happy to take "horse paste" as a last ditch effort. Like I said, he had absolutely nothing to lose.

[@MK-ih6wp]

I assume you have read Joe Tibbets cancer story?

[@MK-ih6wp]

kzbin.info/www/bejne/foqsfaGgmMSqq7s

[@junyuzhang414]

I wouldn’t give up so easily bc even in the relapse setting there r a lot of possible options like daratumumab in combination with krd, vrd, pd etc are all possible. Talk to your doctor first about quality of life , goals of care as he or she would be best to advise next steps.Vinay is trying to say there r too many options n not enough discussion on how to sequence but every doctor will do their best n try to provide the best care.

[@gjwhite]

This was a very engaging discussion. My dad was dx'd with SMM in q4 2018 and progressed (biochemically) to active MM in q4 2019. Did ASCT and biochemically relapsed after around 22 months. Is now on darzalex, pom, and dex. Has been in remission on this triple for just about a year now.

[@huddunlap3999]

I spent six years taking care of my sister as she slowly died of Breast Cancer. She was convinced she was getting experimental drugs because she was on Medicare and not private insurance,

[@MK-ih6wp]

I'm so sorry for your loss. It is incredibly hard to walk this journey alongside them. Esp as a sibling/parent/child/spouse doubling as caretaker. God bless you!

[@SgtHodl]

Mind-blowingly informative

[@2hotscottpro]

It’s over my head.22 min in I’m learning .Feel the same.

[@MikeSawyerwhitewater]

I'm almost 3 years in to treatment. Did radiation then VRD. Tough side effects. Severe neuropathy, almost starved to death. No transplant. Slight relapse, then Ninlaro, Dex, and Dara. MSpike went to zero. Bounced up once to .2 then back down to non-detectable. Recently, I"m back to a .2. I'll have another Pet Scan and see. This roller coaster is tough. Thanks for your work.

[@richware1]

Thanks for the info even though it was incredibly depressing. Keep up the good work.

[@JCResDoc94]

*20:00** military have to wait 7yrs b4 going private. something along those lines.* but we need more: a kind of lifetime zealotry appointment where you cant *ever* go into industry. or serve 10yr, wait 10yrs, something like that. then youll get some angry, poor, skilled scientists dragging these companies into the world of actual science. gr8 interview. -JC

[@jaja2123pall]

Thank you for all your amazing work. My mom died of MM 7 years ago and now my 79 yr old dad got diagnosed with it. I am in disbelief they both have MM. My mom got put on too many meds towards the end and it was painful to watch her suffer. They are starting my dad on Daratumumab, Revlamid, Dex but now wondering if he should even take these, Praying he recovers. Thank you for discussing these topics!

[@RonDansec]

Great content

[@aimeedale9645]

My 71 year old mother was recently diagnosed with smoldering multiple myeloma. Her oncologist is taking a "watch and wait" approach. Is this a normal route? Makes me nervous. Now moving from paso robles ca to Missouri to be near her.

[@kathybrady4033]

She desperately needs a second opinion, best from a large university-affiliated hospital. If there is not one nearby it would be well worth a weekend in St. Louis or Chicago to hear what the experts say.

[@jananilcolonoscopu4034]

@Aaron what's the "best place" in your opinion?

[@larryjacobs3180]

I would start her on turmeric. I have read that this could stop smoldering myeloma from progressing.

[@soccermetallicaak47]

Smoldering MM, despite have a scary name, is not as aggressive as MM, typically not treated with chemo, just observed to see if it progresses

[@alicekigurumi6325]

I'm afraid so. Watch and wait is standard practice to see when paraprotein level increases at alarming. There won't be bone or kidney damage at this point in time. So better quality of life at that point. There are studies in Iceland, the Black Swan project that had treats smouldering myeloma.

[@bryana8383]

Preach brother!!!!

[@marylynmunster8989]

Awesome podcast!!

[@jschafer9205]

"It is difficult to get a man to understand something, when his salary depends on his not understanding it." - Upton Sinclair, I, Candidate for Governor: And How I got Licked.

[@MK-ih6wp]

Accurate.

[@janjohnson1253]

Anyone else noticing how many adds Dr. Prasad is getting. More every time I listen to him

[@Think-dont-believe]

BRAVO!!! 👍🏿👍🏿🙏🙏

[@MatthewElvey]

We need a Cancer Consumer's Union! Eh, Vinay?

[@sgeorg80]

👍