Gregory's Myeloma Story: Diagnosis to Remission & Undergoing a Transplant | The Patient Story

[@ThePatientStory]

We’d love to hear from you: what side effects did you have during your cancer treatment? Leave us a comment below 👇

[@jgc3695]

So far the worst medication was Velcade. I experienced a lot of side effects with Velcade such as peripheral neuropathy, severe pain in my feet and my hands were always on fire, with discoloration of my feet and hands too , and I had multiple styes in my eyelids at one time. They eventually had to withdraw that medication. Stem cell did not work for me as 100 days post transplant there was 2-3 percent in my bone marrow. Treatment resumed with Dexamethasone, Darzalex and Selinexor. Selinexor cause so much nausea. I was given Varubi, Compazine, Zofran and Olanzapine for nausea - nothing helped. It also did crazy stuff to my lab numbers, dropping my platelets to 40s and 50s for a 1.5 months, ANC was as low as 44 and was not climbing and my WBCs were as low as 1.2 and barely got to 2.0. They had to stop that medication too to get my bone marrow to recover. It is nearly a year (July 29 2023) since transplant and although I am not in full remission, the cancer cells have remained at 2-3 percent (last checked May 2023). I am glad that you are doing well and are MRD negative. I only hope to get there sooner than later.

[@FOTOMOTOGP]

I started chemotherapy with a combination of Daratumumab, Velcade, Thalidomide and Dexamethasone. Within three weeks my consultant stopped Velcade and Thalidomide because I suffered severe neuropathy. I also became claustrophobic, my eyesight was impaired, I had severe constipation (I was fitted with a catheter bag), and my body was covered with different types of rashes. On diagnosis my Paraprotein level was 79%. Within about three months the Daratumumab , on it’s own, had reduced my Paraprotein level to 0%. I was then given a bone marrow transplant. I am now, one year after my transplant, on maintenance therapy with Lenalidomide. I have no great side effects apart from feeling tired.

[@Summerrose400]

Thank you so much for you sharing your horrible journey through cancer and the financial challenges. You are helping so many people just starting on this terrible journey with your articulate and thoughtful information. I wish you and your family the very best for the future.

[@kmarie1351]

Thank you. I've just been diagnosed, I'm 53. Your story is a boost for me.

[@richardhutchison3123]

Mr. Procter, I have AML (Acute Myeloid Leukemia). I had a donor stem cell transplant and have had several issues. I can't tell you how much I appreciated your story. It's almost like I knew what you were going to say before you said it. I was officially diagnosed in March of 2022 but know for a fact from the swollen lymph nodes that I was ill for about four months before the official diagnosis. You are definitely someone I can absolutely relate to. God bless and keep you and may you stay well and strong. Richard H.

[@faithf5846]

I appreciate your articulate, clear, explanation of your health journey. My friend & neighbor have been battling myeloma for a few years. She has a good team of physicians and has fatigue from time. A few years back she had a bone marrow transplant some difficult issues that she came through and did well for years. She had a recent blood test that show some of the cancer cells are returning. Her doctors have suggested car T cell therapy. I’ve read this can be very helpful! What I’ve read T cells are like little pac- man which can gobble up the bad tumors ! I believe & am hopeful she will improve and return to health. 🙏❤️

[@sharonlittle7067]

Thank God you're doing better. Praying for you and your family

[@FOTOMOTOGP]

Gregory, thank you for sharing your story. You are an inspiration to us all. When I had my transplant there were five people having a transplant in the same ward, each in their own room. The nurse told me that two of them were suffering side effects more than me and two were suffering side effects less than me. It goes to show we all respond differently. One thing we all share is the same illness. Lets inspire each other. Your words will helps us all to focus on the positive things about our lives that we should focus on each day. Thank you from the bottom of my heart.

[@michaelwinkfield5826]

Thank you for sharing. I was diagnosed with MM in February 2024. Stem Cell transplant July 2024 and it was something I never want to do again. I’m in remission and building up my strength. I pray for you and others going through challenging times. Stay Strong 💪🏾👍🏾

[@devin1820ify]

God bless you brother.. My dad got diagnosed November 2023 and he starts stem cell this week August 2024.. my heart is sunk. But I pray for you health. Send one for my pops

[@michaelwinkfield5826]

@@devin1820ify Praying for your father as he starts this part of his journey.

[@mikemuchene2045]

You are a true worrier mate ❤

[@hapi10]

My sister was diagnosed with Multiple Myeloma in September of 2023. She has chemo therapy treatments once a week and she has blisters on her body thats causing her discomfort she has been in rehab because of the blisters, which affects her mobility. She can walk only 40 feet. I'm being supportive but medicaid is a problem for her as far as her rehab. She need 24 hr care and they're discharging her from the facility without the 24hr care in place. We live in different states so I'm traveling a lot on my off days to be with her for moral support and because I love her. Your story is informative and encouraging for me because I'm at a loss dealing with the insurance issues. Thanks again

[@entertain_me_eh]

The time you've taken to share your challenging experience with multiple myeloma, in such detail. and with patience and intelligence - is very much appreciated! Thank you! 🙏💕👍😊

[@anaferguson5135]

So happy that you are doing so well. You look great! You are very strong mentally and physically! I am amazed that you were able to walk so many miles! GBY and keep on fighting!

[@lesliewatson6131]

What an amazing testimony!!!

[@MelissaHash]

My Dad got diagnosed with Multiple Myeloma in June of '23 got into deep remission by March of '24 & April 15th is his new stem cell birthday. He is currently home from his stay at City of Hope Hotel. He has a long road ahead but thankfully his insurance covered most of his procedures & care. I am so sorry for all the trouble you had & I am glad you're doing better & in remission yourself! Stay strong & fk cancer!

[@devin1820ify]

Fk cancer 🙏🏾

[@apache318]

I am glad to listen to your story, my spouse is getting to start her stem cell transplant next week. I am glad you recovered, Take Care!

[@briankoester2164]

Your courage inspires me. Thank you for sharing your story.

[@karensaurage1120]

I would love to know if your in pain. My husband is on day 56 after stem cell transplant. My prayers are for you.

[@copernicus7549]

Thanks for taking the time to share and help others. Take care.

[@richardthornton5829]

WIFE JUST FOUND OUT SHE HAS IT . THANK YOU FOR YOUR STORY . HER LOVING HUSBAND

[@davidshepherd7362]

Good on you I am in same situation going for a stem cell transplant next week

[@devin1820ify]

My dad starts his stem cell this week. Pray for him

[@BlazingSadles]

So happy you are on the other side of this monster called cancer!❤ God bless you and wishing you the very best in all of your endeavors and continued health!

[@KathilynBigler]

God bless you!!!!❤😘🙏

[@helenharris5539]

Thank you for sharing your story. You are amazing and I’m so glad you are doing well.❤

[@kylecarr288]

I have been receiving weekly chemo injections since July of this year. It’s now early November. I am approaching remission and my hematologist wants me to have a stem cell transplant. Otherwise, I will continue the weekly chemo injections. After watching this video and speaking with a PA and my Dr, I am not sure if I want to go through with the transplant. I am 69 and live alone with my dogs. My Dr told me that a “successful” transplant could add 8-10 years to my life span, but then the myeloma returns and the downhill slide begins. I m just not sure if the misery associated with the transplant is worth it for me.

[@devin1820ify]

My dad went from 240 down to 160 in 8 months. So depressing

[@suzannastevens4059]

My husband and daughter go to Dana Fabre great team of doctors there.

[@jamiec6671]

❤