How I was diagnosed with Multiple Myeloma: Multiple Myeloma Symptoms & Treatments | Cancer Journey
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- čas přidán 1. 09. 2023
- #bloodcancer #cancersurvivor #cancerawareness
In this video, I share how I was diagnosed with Multiple Myeloma. In this video, I talk about my initial multiple myeloma symptoms and how it took a year to finally get my diagnosis. I also share the various treatments I have had throughout my journey. I talk about what chemotherapy I was given and how I ended up getting Car-T cell therapy.
I am not a medical professional but just offering a patient perspective on navigating cancer. If you feel something off with your body please consult with a healthcare professional.
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I just found this Krissy. I have been following your 30 day walking journey. I hope you are ok and you kick cancer's ass! I will be rooting for you! Internet strangers got your back! ❤🙏♥
Thank you so much for your support!! I am doing much better and keeping cancer in check. 💚💚💚
Hey girl hey!!! I’m just found out about this, so proud of you for not giving up and being knowledgeable about your sickness! It’s very important and let’s me know you’re still fighting!! Praying for you and supporting you in any way I can!! 🙏🏽💪🏽💐❤️
Heyyyy girl!! I try to stay on top of all the things that go on with this diagnosis. Thank you for encouraging me I really appreciate it. And thank you for the prayers too. Hope all is well with you :)
Thank you for sharing your journey. So happy to hear you’ve continued to be in remission. ❤
Thank you for watching! I’m glad to be in remission too 🤩
Your video appeared in my algorithm today (September 29, 2023). I was diagnosed with multiple myeloma (MM) in July 2021, but for 12 years, my blood was monitored every six months because I had MGUS (monoclonal gammopathy of undetermined significance - a precursor to MM. My initial MM symptoms were excruciating lower back pain and rib fractures. I definitely can relate to your story about the bone marrow biopsy. It is the worse and I had two. The second one came two weeks before last September’s (2022) stem cell transplant and that biopsy was without pain medication because of a shortage at the hospital (The James at Ohio State University). My stem cell transplant was successful so far as no MM was detected in my body so I was deemed in remission. But a couple of months ago, I started having extreme pain in my left femur. I thought I strained a muscle because I walk extensively every day. But this pain is only getting worse. So I will soon have a whole body MM survey. I had not heard of scan anxiety, but I’m definitely feeling a lot of anxiety because my fear is that this pain could be bone cancer. I have a great support system. My husband has been wonderful throughout this whole journey and I have maintained a positive attitude. But the feelings I have right now are different. But I’m hopeful that I will get good news. Hearing about your MM journey is so inspiring. You look great.
Thank you for sharing your story with me. I’m hoping right with you that this new pain you are having is not mm related! Praying you have a long and durable remission from the stem cell transplant!!! Happy to hear you have a good support system too, that’s beautiful! All the best 💚💚💚
You are in a good time to be diagnosed not that cancer is a good thing but you can live many years with myeloma thnks to modern treatments advancements.
I have high risk IGA mgus 5 years since diagnosis do you think I will get myeloma m protein is 19 grams liter flc ratio is 28
@@Amnigaggh you are so right about that! Things have changed even since I was diagnosed!
@@Amnigaggh I couldn’t say but I do know you are in a great place as it hasn’t even progressed to smoldering. Even if it gets to smoldering myeloma i know people who have been smoldering for years and years before it progressed to myeloma so you are in a good position right now.
OMG I am so sorry for you. But at least you found out. Thank god you kept going. I probably would’ve gave up by then and just lived with it. I hope you stay in remission. I am in remission too from Breast Cancer. God bless and best wishes to you!
I pray I stay in remission too. I am happy to hear of your remission as well. God Bless :)
Hi Krissy, I hope all is well. I'm currently going getting ready to do CAR-T. I didn't do the BMT. I have a rare case its only in my blood so I refused the SOC and now that CAR-T is approved going to do this. Hopefully this puts me in a Permanent Remission!!!. Anyhow I drink lots of beef bone broth to help with RBC's not sure if you're doing that,but you may want to ad that to your regimen. Wishing you as well a Permanent Remission. 🙏🏼🙏🏼
Thank you for sharing my aunt diagnosed with multiple myeloma too. I pray you stay in remission ❤
Thank you so much! Sending well wishes to your aunt as well 💚🙏🏾
I am currently going through the same and hoping to have a transplant shortly. Thanks for your input..
Praying you have good outcomes with your transplant!! Thanks for watching :)
@@krissythewhimsy Thanks
Grateful for you making it through and thriving. I love you!
Thanks sis! Love you too ❤️
Thank you for sharing your story, you are so articulate and speak with such strength. Sending you thoughts of healing and peace
Thank you so much! Thank you for watching and sending thoughts of healing and peace! It’s definitely appreciated 💚
Hugs to you. My brother a friend and uncle had Multiple Myeloma
Thank you for the hugs! I pray all is well with them as well.
So glad you are in remission You are a strong person. Wish you continued success!
Thank you so much for the well wishes 🤩
Oh this has been so hard for you! Good luck and blessings go with you to your monthly checks.
Thank you so much for your well wishes! I really appreciate it. This journey hasn’t been easy but I’m making it by taking things day by day 💚💚
Wow what a journey you have been on. My goodness. I am so very very glad you are doing well🎉
Thank you so much! It has definitely been a wild ride :)
Thank you so much for sharing your experience. My mom who is 70 just got diagnosed in april with MM, after breaking 4 vertebrae for no apparent reason. Many years of bone pain. She was sent to an onocologist in 08' and cleared. So we think shes had it for 15 years. She had spinal fusion in april then 5 days radiation, and now on revlimid, valcade, dexamethasone and expected to do stem cell therapy. Also one more detail, the biopsy showed it is in 85-90 % of her marrow. The drs say this is a very treatable cancer and she has a 90 % chance these therapies will work. He was very hopeful it can extend her life by 10 years. 🫶
Oh wow she has been through quite a bit already. The bone pain can be excruciating. So I am praying that the treatment and stem cell will work wonderfully for her. They do say it is very treatable. I am wishing sll the best for your mom. Thanks for sharing her story!
Yes i cant tell you how many times she has told me i feel like i have bone cancer in the last 20 years. Keep your videos coming.
@@2malsahm59 thank you!!! Wishing her the best with her treatments
Well told story! Hoping the remission is long lasting! Thanks for posting your story.
Thank you for watching! And I hope so too :)
I am so happy that you are doing better. Bravo on all your research!
Thank you so much!! 🤩🤩
❤love and peace for you,
Your strong, intelligent and learning a lot. Keep going and praying your outcome is always positive. Be well
Thank you so much for your kind comments :)
Krissy, Thank you for sharing your experience. You are a strong lady! Prayers for remission to continue! ❤
Thank you so much!! I appreciate you and your prayers too ❤️❤️
Just found your channel hun and will be praying
Thank you! I appreciate your prayers 💚
♥️♥️♥️
just found and subscribed to your channel, healing in Jesus name beautiful lady🙏💐
Thank you so much ❤️
@@krissythewhimsy you're so very welcome 😊❤️
I am in remission also for multiple myeloma that once a month stuff is crazy
I am happy you are in remission. I found your channel and subbed to you too. All the best on your journey sis! We got this :)
🙏🏽🙏🏽
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Hello,
I don’t mean to be intrusive but did you have any pain in your elbows as well as hip pain? 😢 Thank you for sharing your story and journey with us all. ❤
Hi, not intrusive at all. I didn’t have any other pain besides the hip even though they found activity in other parts of my body.
Ny husband has multiple myeloma and had 2 bone marrows he said very painful
Yes, they are very painful indeed! Wishing you and your husband the best :)
Can you tell me what clinical trial did you have? My husband has the same problem, he is after chemotherapy bone marrow transplant and naw immunoterapii. I think avery person with this particular cancer type needs to be checked what drugs gonna work for them.❤
Sure thing it’s called “High Throughput Drug Sensitivity and Genomics Data in Developing Individualized Treatment in Patients With Relapsed or Refractory Multiple Myeloma or Plasma Cell Leukemia”
The id number on clinical trials.gov is NCT03389347
I wish your husband the best on his journey!
@@krissythewhimsy thank you so much for the information Krissy, wish you the best ❤️❤️
@@ajcrunch you are welcome 💚
Thank you for being so articulate and sharing your story. I started taking Daratumumab, Bortizemide, Thalidomide and of course Dexamethasone. My Paraprotein level was 79%. Bortizemide and Thalidomide had to be stopped within weeks because I suffered a side effect, that being peripheral neuropathy. Daratumumab (and Dexamethasone) took my Paraprotein level to 0%. Daratumumab was amazing for me. I have since had a T cell transplant. I wish you well.
@@FOTOMOTOGP thank you for sharing your story with me. Neuropathy is very real! I only had a mild case of it. I’m glad to hear your numbers went down like that and you had a successful transplant!! Many Blessings to you!
Best regards.
Thank you! 💚
How many types are there? My mom was just diognosed
I’m sorry to hear that! There is IgG, followed by IgA. The least common types are IgM, IgD and IgE. Then once you know the subtypes they classify it as either lambda or kappa myeloma. Igg is the most common
@@krissythewhimsy thanks so much for answering. She is 88 years old. So much. Hoping that you in remission for good. You are so young
@@bernpil4148 Thank you so much. Praying your mom has good outcomes with her treatment plan :)
@@krissythewhimsy In my humble understanding (my brother had MM and I am currently light chain MGUS) we can add light chain multiple myeloma and non-secretory multiple myeloma to that list as well. It can certainly get complicated, can't it? 🕊️🙏❤️🕯️
Bless your precious heart, you've been through so much and yet still remain an inspirational and positive person! Thank you so much for sharing your story, so informative and educational! God bless you! 🕊️🙏❤️🕯️
First question: Did you receive any Covid-19 jabs?
No, I didn't. I have heard of a few people who got diagnosed after receiving the shot though.
Ugh the misdiagnosis... sounds so familiar.
Oh no! Sounds like you know about that road. It can be a wild ride for sure
Hope you got rid of your primacy.
Thank you 💚
What did your blood work look like?
The biggest thing that was out of range with my bloodwork is I was very anemic. Around 9 or 10 hemoglobin that was the only initial thing that was off before they did more extensive work up.
Thanks for your reply, that's what my issue is but they gave me an iron infusion & come back in 8 weeks.
@@amyjenkins9187 I’ve had an iron infusion it was really helpful to boost my numbers for a while. I hope it helps you too!! 🙏🏾
Thanks, I pray for you.
So, you got the infusion & then they tested you further or did they know right off from blood work?