Is there anyone else in the Clinical Trial Sim0500 “Trispecific”

Hi Jeff, Since this is a specific clinical trial for patients with relapsed multiple myeloma, it may take a little bit of time before replies trickle in for you.

I did a quick search about the trial and see it’s to evaluate the safety and tolerability, efficacy the drug, SIM0500 in adult with Relapsed or Refractory Multiple Myeloma

You mentioned this clinical trial has been harder than your ASCT and CAR-T experiences. I have a pretty good picture of that in my head from my own experience with a bone marrow transplant so you have my empathy!

What types of symptoms or side effects are you dealing with? Is this an infusion or pill form of medication? Of course, with any clinical trial you won’t actually know if you’re getting the product or not. But if you’re experiencing side effects, that doesn’t seem to be a placebo. Have you had any labs as to how well this is working?

This is a phase one trial. All patients are given the medication. I had extreme pain the day after the injection. It is a subcutaneous injection. I am assuming this was due the high disease load. I have lost taste for salt and sweet. I had the skin on my hands completely peel off and now my feet . I have had nausea and vomiting such that I have lost 15lbs.
Is it working? Yes definitely. The large mass in neck area almost disappeared overnight and my light chains dropped dramatically. The radiation oncologist said that the lesions that were seen initially and shrunk dramatically. This is all after one injection. I go in for my second injection on Thursday.

@jefe You have my sincerest empathy for what you’re having to cope with. This sounds very similar to my intensive chemo for AML, The nausea and loss of taste buds was pretty rough and I know the rapid weight loss can be very frightening.
The consistency of food in the mouth is really off putting. Sometimes a tiny drop or two of maple syrup can make food ‘palatable’. I learned that from a Chemo Chef. Not sure what it is about maple but actually made a difference. Also helpful was no full meals. At least for me, looking at a plate of food…I’ll leave that unsaid. 😉 My husband would make me food, cut into bite-sized pieces and have ready in the fridge for me when I felt like I could eat. About a bite or two of one type of food was all I could stomach at a time before it left me squinching my face in rejection. LOL. Also, if you can eat some Greek yogurt daily. It can really help with gut issues and adds protein. Hang in there, my friend. It gets better!

The best news is it’s working! That’s amazing and motivational! Keeps you going through the tough times!
Please keep me updated with your progress. You can bring hope to so many people with refractory or relapsing MM!
I’m sure you’re not looking forward to injection #2. Hopefully this time it’s less painful for you. How many more rounds do you have?

This is forever