Hi Moh,

I’m sorry to hear that you’re in pain. It’s remarkable that even after the cancer is dead and gone the scars, the lesions still leave their little piece of remembrance due to the pain.

I’m praying that they find a solution for you.

After my stem cell transplant in February 2021 I stayed off all medication until May 1921. The number started to go up and there were lesions new ones and healed ones.

My doctor prescribed it Ninlaro dexamethasone and revlimid.

They also gave me painkillers, because that was the only thing that worked. I tried walking, but I’m afraid to be walking I used to think what if I collapse

I recently underwent a Carvycti car T cell transplant and unfortunately it only lasted seven months. or I could say, fortunately it lasted seven months seven months of scientists and doctors pushing FDA approvals on medicines that would work for us.

There’s a medication change, the pain does get worse because they’re giving medication‘s that stimulate the bone marrow to create new T cells. Very very uncomfortable.

Recently startedTeclistimab another medication. It required me to be in the hospital for two weeks. They give you two stepup doses they give you the third dose. They kept me there another day or so just to watch for my reactions. These bones these bones. I was in a total pain crisis. They wanted to change my medication from oxycodone to fentanyl in the box. That way I could press every time I felt like I needed pain relief.

Then they put me back on oxycodone pill. They also added another medication to assist with the painkilling medication called. I can’t believe I can’t remember it right now.

It seems to be helping because I can’t imagine what it would be like without the painkillers.

My body always hurts worse after treatment. And they stand there like they don’t understand why I’m in so much pain. Well the bone marrow is producing clean T cells and it hurts.

I’m adding you to my team and my prayer list.

I really hope that you feel better soon sooner than later

Best always
Susan

We are all so different Moh. What kind of pain are you experiencing? My maintenance is only Lenalidomide (Revlimid) and the only pain I have from it is a slight headache, some gastrointestinal pains off and on, and a tiny bit of neuropathy pains in my feet. Tylenol works for me. 🤷🏼‍♀️

thank you Moh the car accident was one of my 9 lifes from the 1989 earthquake in California and the freeway that collapsed and killed 67 people I was on top when it fell that’s how I broke my Back

Susan, I hope the pain is a sign the Teclistamab is doing it's job. You have been through enough. 🙏💖

I take Velcade only for maintenance and blood cout drops for 3 days and become very fatigued 4 day back to normal. My pain same as yours except prior to being diagnosed with MM I was in car accident that smashed S1 and Arthritis set in and now standing washing dishes and bending at that spot in spinal column cause extreme pain and legs want to give out. I sit and pain leaves.