12/06/2025
Helluuurr I hope everyone is having a great day. It's been a while since I posted an update on my health. This is easier than 50 DM's. I'm not really up to a bunch of messages asking questions. I'm very overwhelmed. Prayers and good thoughts are fine.
Ok here it goes (deep breath) back in Feb or March I think it was, I had what is called a VDPACE (I think I posted about it, my last update). It's 4 chemos they give you at the same time for 5 days straight. And then a chemo they give you the 1st day and last day. I lost my hair very unexpectedly. Not everyone does, but with great sadness for me I did. Everyone knows how hard and proud I was of my new hair. It was devastating. I went to the Dr on Tuesday, he stopped the teclistamab (shot in stomach) and his nurse had me going into the hospital the following Monday. Came home on Friday was bald a week and a half later. It all happened so fast. It's been a sad few months. Teclistamab put me in remission twice for like a couple months each time then bam relapse. I found out Wednesday that it isn't working again and the reason why is I don't have enough T cells; which is an immune cell; to let the shot fight. The VDPACE somewhat worked. I was covered in tumors and my next PET scan after the chemo showed 2 tumors in my right leg. One in my tibia and one in my fibia. Both places have been treated before. I went to get mapped for radiation and got a call a week later from my radiologist that they were canceling radiation due to further damage to my leg. We were going on vacation and I was and still in severe pain so a week before we left for pain management he did one very large dose to my tibia. Not my fibia, to delicate. It didn't really work I still lived and live in pain everyday.
Fast forward to starting my shots again, hoping it will work after all the chemo, kinda resetting my body, still didn't work, actually my numbers went from normal April 25th; 18.36 to June 4; 121.63 which is extreme for only 2 months and having large doses of chemo and starting treatment again. I received a total of 4 shots I think before he stopped them this past Wednesday. 😢😢 this drug is saving people putting them and keeping them in deep remission and they are living. Nothing will work for me because of my T cells. So lots of fruits, citrus fruits and lean mets help raise T cells to fight. So as soon as I can I'm getting all that stuff, probably next month. My immune system has always been my enemy because on top of bad immune system I have hashimotos and that definitely isn't my friend. Does not matter what I do, what I take, even immune medication it won't budge.
So as of Wednesday we stopped teclistamab again and i was sent over to infusion for 500 mgs of steroids as a bridge to keep things hopefully where they are until they can get authorization for 2 chemos; 2 chemos that are OG to me my very first treatment regimen back November of 2019. We are going back to old school because my body just isn't strong enough to fight with these new treatments. I went into remission after my Car-T in May 2023 for maybe 3 months starting in September and felt the best I have felt in years. I relapsed in November 2023. That is a treatment that's supposed to give you years. So anyhoo, next week I go back to Kyorolis, Cytoxin, and 500 mg of steroids. 3 weeks on, 1 week off. This is a very good treatment, it never put me in remission but would keep my numbers low. The issues I was having on that about 2 yrs in was plasmacytoma in my sinuses. I'm not having those issues anymore so maybe it will work. My Dr is extremely upset. We are very close. He cries with me, he hugs me, he comforts me. He feels defeated. His death rate is low. He's one of the top Myeloma specialists in the US.
So this chemo is the absolute last option and being administered to give me time because all in all I don't feel horrible, just in pain 24/7. My palliative care nurse has worked well with to make sure I have pain management. One is a patch that I absolutely hate and the breakthrough meds in pill form. So I can keep it under control but never stops hurting. They are not doing anything with the tumors so hopefully the chemo cocktail I'm going back on shrinks them and I have to get my T cells up!!!! There are many drugs in the works for myeloma. They are either in the manufacturing stages or waiting for FDA. I just don't know. I want to give my very first treatment a chance. If that doesn't work then you can probably figure out the outcome. So please send prayers, good vibes or whatever you have in you that this works to get me back down to a manageable stage. He's never had a patient do everything he's tried and something no stay and work. He's devastated.
Also he's leaving IU for Miami in October to open private practice with his wife. He's been doing so much for so long. His list is never ending. My new oncologist has been his partner at the hip up there for years and her credentials are amazing. I have been reading about her for 2 days. The only thing she has that Abonour doesn't is a biology degree. He said that will be beneficial and he has told her about me and she's already studying my case. So prayers to her healing hands she can fix me with these new drugs if they come out fast enough.
I know this was long. I'm sorry. I will update occasionally on the chemo I'm starting because I know you will wonder if it's working. I had great results in 2019 and covid hit and I had to start taking a chemo pill at home because they weren't doing chemo in the center. This was at Sue Wortman in Greenfield. And I WILL NEVER STEP FOOT IN THERE AGAIN, another long story. I have a good feeling. This chemo did stop working before but I was on it maybe 3 years and it was putting a toll on my body. I have had a reset and I have faith it's going to keep me around a little longer.
Thanks for listening to my Ted Talk 😊
We are doing t-shirts again, 1. To raise awareness
2. Just a little extra money. My diet is changing big time. We all know eating healthy is so expensive.
3. I want to keep the extra burdens, like an extra set of groceries, extra gas, or whatever off my husband. He pays all the big bills, buys a lot of groceries, works 12 hour days even when he does not have too he works extra hours. So really every penny helps. He deserves the world and I wish I could give it to him. So patient, caring, attentive, when he isn't home he's checking on me all day and he has the emotions of steel. He's actually taking all of this really well, staying strong and I'm so in love with him. I couldn't ask for a better lover, husband, papa, step-dad, dad and caretaker ❤️ My cup runneth over and I'm extremely blessed ❤️ t-shirts $25 gray or black.
Be blessed ❤️❤️❤️❤️
