Anyone here been on Venetoclax now? They are prescribing it for me? Wonder if my insurance will cover it since not FDA approved?

Hey, friends! In less than 2 hours (noon, Eastern) Cancer Active Support Group. (register below) This month we're talking about our experience at the HealthTree Coach summit in July. Let's talk about CureHub, why you should participate, and why all cancers should replicate this model of inclusivity and general wellness. If you haven't registered, register. Meet me there. https://throwing-bones.org/cancer-active-support-group/ Kenny

Hi. My husband had car-t in December, and is doing quite well. I'm just trying to understand what comes next. Is a bi-specific always the next step after a car-t, or are there other options? Thanks.

Hi Here Hans from the Netherlands. Sins March I’m diagnoses MM. Now in a cure with Daratumumab, Lenalidomide and Dexamethason. After a month 44%, ter month 68 % and now almost 100 % less Cancer cello. Now every 14 days the Dara. Although everything in live is changed, I’m glad the treatment is going good so far. Anyone also on Dara ?

Is anyone losing their hair after car t therapy? Mine is falling out in brush fulls and don’t understand why. I’m wondering if it’s from taking acyclovir for so long. It’s not common but side effects for acyclovir says it’s possible.

Hello all. A few days ago was the 1 year anniversary of... The second clinical trial I was on was Cevostamab. It was different in that it was 1 treatment every 3 weeks, 17 treatments = 1 year. After that treatments stop so they can see how durable it is. ... not being on a treatment and my MM is still UNDETECTABLE

Would love to share after-effect information with anyone who is on a talquetamab (Talvey) regimen.

I have a question about Revelimid. Any success stories while on this chemo medication. I just had a SCT in April that was difficult, developed a rare infection, colitis — which has finally resolved and have been left with chronic neurogenic body pain — it is managed with gabapentin. I am in remission, praise God but now they want to do 10 mg of Revelimid orally, 3 weeks on and 1 week off. The side effects seem deterring to me…I would not start until September…Any wise words or experiences are appreciated. Thanks in advance!

hello

Good evening from here. I'm due for my 3 month blood test and 3 month results. Now whilst I am not too fussed about the blood test (even though I freaking hate needles still), I ALWAYS get nervous whilst waiting to be called in by my consultant. Granted as I put last week or a few weeks ago she is great, but it still doesn't change how I feel. So I get in there. She is sat at her computer screen and honestly there has been a few times where I swear my brain tricks me into mishearing what she says. She has always said about the results being perfect but at least twice I imagine she says that the beast (it's what I call myeloma) has returned. I'm literally sat there shaking before she gives me the results. Maybe it has left me with PTSD or something but honestly it is so confusing. The first time it happened I left and went into the waiting room and my cancer nurse came out and asked if I was okay. And she reminded me that the results were good and that I was still in remission. To say I was confused was an understatement. I never fully know how I'm going to feel until that morning but as it gets closer towards it after my bloods are taken 2 weeks before I feel my attention span starts to go, I phase out so much more than usual. And then on the day I'm a wreck inside. I don't show it on the outside often. How the devil do I deal with this? And does anyone else ever feel like this?

Anyone added Heathtree to their Will besides me?

I’ve seen it mentioned in numerous places that Lambda forms of MM (be it such like IgA Lambda or light chain Lambda) has a poorer prognosis. What about Lambda as opposed to Kappa causes this apparent observation. I have only seen the statement but never the reason behind it. Thanks.

Hello all! I was dx in 2009 with Kappa light chain IgG. SCT in 2009. Drug free for five wonderful years then relapse in 2014. Been off and on maintenance therapy since 2014. I have been doing really well with maintenance and currently on Darzalex injections every four weeks. My light chains have been in the abnormal range since February of this year. With low IgG levels for several years. My MM specialist ordered more testing done a couple weeks ago and my MM has now evolved into Light Chain Escape. Which I understand that my MM can no longer be monitored by blood tests but with BMB. Has anyone have this form of MM? How is your disease monitored? What treatment are you currently on? Side effects?

Hello Everyone, Keep an eye out on the non-profit grants. They open and close rather quickly sometimes. Also Medicare is in process of solidifying 2025 changes. Please tune into my Webinar regarding the changes and how they will affect you, September 6th at 1:00 EST. Pease register if you're interested. A lot of interesting stuff is happening!!!

Hello Everyone, Keep an eye out on the non-profit grants. They open and close rather quickly sometimes. Also Medicare is in process of solidifying 2025 changes. Please tune into my Webinar regarding the changes and how they will affect you, September 6th at 1:00 EST. Pease register if you're interested. A lot of interesting stuff is happening!!!