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Hi Bobby, I learned a hell of a lot from you and your video. There were many take home messages but the two that impressed me were, 1.) educate yourself so that you, the patient, can help the medical team fight the disease(s). The 2.) second take home message was “never give up” even though you faced many legitimate reasons to give up during the recovery ❤️🩹 and the disease processes. You were well educated about each disease process that was attacking your body but by a combination of your will to survive and live each day plus your doctors determination to care for you, you survived. I hope your diseases are in remission. The date that I watched your video today is 09/21/24. Be well and thrive.
David, you offered great advice for a person with MM. You raised an issue I hadn’t thought about and that is how do you plan leading up to the funeral?? Also, how do you “stay positive” under the circumstances? Isn’t it easier said than done? I am nearly 76 years old and have a positive attitude but I have never faced a non-curable disease in my life like MM. I know there are multiple therapies but it could be exhausting to find the right one and one could run out of gas, so to speak! I welcome your suggestions. Daniel Z.
Hi Bryon, Thank you for sharing your story of MM discovery and the success you have had in managing the medical/non-medical information that you had to face and process. Above all, your CAN DO attitude has helped you level out the highs and lows of MM you have faced and will continue to face throughout your long life. Hopefully, the disease is in remission. I wish you good health and know you are in good hands with the medical teams at UTSW. Daniel
Daniel, man thank you for the good words! I am honored to share it and hope it helps others. I don't know what the future holds, but I know I am in good hands and His hands.
Hi Kelly, I’m a 75 year old who is beginning the MM journey and wanted to thank you for the positive attitude you showed the Polygon audience. Thanks for sharing your advice on managing the highs and lows of the MM journey. Be well. Daniel
My wife’s first symptoms were relentless anemia et calfs cramps. Her primary doctor could not figure out what was wrong even after numerous tests and wrongly guessed diagnosis. He was humble enough to say - i give up - and refer my wife to someone with a better entourage of specialists. One of them happened to cross her medical file, as he was replacing her new doctor for a few days, and immediatly recognized she had all pointing towards MM. this took 2 years over all to come to a correct diagnosis. 2 stem cell transplants (auto & allo), 4 years of remission and now the bug is back. This war is tough on her and on me. We fight hard and keep our heads high but…it’s hard.
Im here because my beautiful wife has MM. i try to find information to understand and help her best i can. Thanks for sharing. Its helping a lot of people.
Gemma you have inspired me and others with Multiple Myeloma, l live in Dublin l was diagnosed in June summer 2019 had stem cell transplant by end of November went remission after but relapsed January 2022 back on chemotherapy the para protein coming down. I will be following you. Thanks again. Margaret
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I just want to say thank you very much. How's diagnosed with MM March of 2023 gone through similar treatments as you did. I'm now 4 months out of my stem cell transplant and doing good. Your advice and positive attitude is good and what people need to focus on. Thank you very much, Bernie
This person has suffered much but I wonder if he's missing something. So good he's gone a good while with no treatment--but wow 2 stem cell transplants! Traditional mm treatment docs will ignore what you can do for yourself, like a super diet that's veggie and fruit centered, and things like green tea and curcumin. Why is the obvious missed so much that can help so much.
Because we have many members of our group that have nearly died trying to do that themselves. When it doesn't work, they go to more traditional treatments and do very well in most cases. I promise, I am not missing a thing.
At diagnosis I had no real symptoms. My primary care provider picked up on some "concerns" from annual bloodwork and said I needed to check it out with a "good oncologist." My question for all is, what really causes it. This oncologist had me tested for hepatitis C, which turned out to be positive--I got Harvoni which cured that.
These stories are so valuable, thank you! Alan, I can’t express how grateful I am for you and everyone one in the Multiple Myeloma Warrior Community on Facebook. A far reaching legacy… small town Canada here
Awesome story Gemma. Thanks for sharing and for encouraging others. I was diagnosed in 2016 at the age of 49. I am also self employed so I can relate. I started the Multiple Myeloma Warrior Community Facebook group and we would love to have you as a member.
WOW..! I thought I was young to go through this .. I'm 52 just diagnosed. I was in perfect health, I've worked out my entire life maintained a healthy weight. I don't drink, smoke or do any type of drugs. And still got this crap. I am a CNC Machinist though, I don't really work with toxic chemicals,but have been cutting metal my entire adult life , so maybe that's how I acquired this garbage. Hope you stay in remission for the rest of your life.
@@frankvitucci5677 No, curiously enough. New Years off 2021 going into 2022. I contracted COVID. Got over it fine,but a cough persisted for about 6 weeks and a lump appeared next to my esophagus. They kept saying it was nothing. I knew something was wrong. July of 23 a large Neoplasm appeared on my clavicle overnight. Well here I am. I know COVID is what got me.
I have multiple myeloma and your story most definitely helped me and will help others with MM. Your experience with myeloma is very similar to mine, I have had bone fractures and surgery, it's been a frightening experience to say the least but even through all of this, the Lord Jesus has been merciful. Thank you very much for sharing your story/journey. May the Lord continue to bless you with health 🙏
Hi! Yes, I had a bone marrow biopsy to confirm diagnosis and many since then. They’re not the most comfortable procedure, but they’re really not that bad either.
What were your initial symptoms? How long it took you to get checked for MM? Did you have kidneys issues? What about your bones? Anemia? How was the chemo? For how long? Side effects? Pharmaceutical perspective is not really useful for this type of cancer, since it is often very individual specific….
In 2015, I had a really exhausting summer home from teaching. I had two kiddos - 1 and 4 at the time - and I genuinely thought it was just how motherhood was supposed to be. But in that fall, I started getting illness after illness (colds, eye infections, ear infections, sinus infections, etc.) and that in conjunction with the extreme fatigue I was feeling made me realize something was very wrong. I finally started teaming up with my primary care provider to dig deeper into all these illnesses in January. It was at this time I discovered I was anemic, but we did not yet know why, so we started to dig deeper into that to find a reason. I had two trips to the ER in January/February - one for bone pain in my hips that woke me in the middle of the night and one for a fever + abdominal pain. I could've gone to my PCP for this, but both times it was after hours and I was desperate to tell any medical professionals my story and hope that they could put together all the pieces to the puzzle for me. I was finally seen by oncology and was officially diagnosed 4/4/16. So it was a journey, for sure.
I agree with you on it not being super important to anyone but myself what specific drugs I took. Myeloma is such a strange beast and everyone's case and history is so different. Everyone's journey will look different. I am lucky that by the time I started receiving treatment, it made me feel BETTER than I had been feeling, so I was grateful. I have had very few side effects to drugs along the way. I will try to list them out. The lymphodepleting chemo I took before stem cell transplant, melphalan, was terrible stuff. I was sick for so many days in the hospital and I could not even hold a popsicle down. I remember asking the nurses to just make it so I could sleep through the whole ordeal, and that's pretty much how it went down. My second time on Revlimid, I got an itchy scalp, but it only lasted a few days... possibly a week. Lymphodepleting chemo for both of my CAR Ts was also not that fun. For both I believe it was cytoxan and fludarabine. The advantage here was that I was on my own at the hotel as I was still outpatient so I could lay around, sleep and eat saltines here and there as it worked for me. I felt very nauseous and the memory of it makes me never want to stay at that hotel again! After successfully receiving IVIG twice I think, the third time I experienced excruciating abdominal pain during the appointment. It crept up slowly, so at first, I literally thought I was period cramps and I got up to the bathroom to check. Nope. It continued to worsen, and I asked my nurse for help knowing something was wrong. They wound up halting the IVIG, giving me a couple meds, one for nausea and one called Solu-Medrol. After an hour of things calming down, we restarted the IVIG with no other problems. My specialist said with IVIG to "expect the unexpected" as far as side effects go.
I am lucky to have zero bone involvement at this time. Although I fractured my foot in 2018, finally managed to find time to have it repaired this September and so far it is not healing. :(
Hi Kelly, I am a recently retired RN, I noticed I was seeing more and more patients with this cancer. Now, that I have more time, I thought I would improve my understanding of MM by exploring RU-vid. I came across your story and you are the youngest person I have seen diagnosed with MM. Thank you very much for sharing your story. I hope you can continue to stay on top of this cancer.@@kguynup
This is a very encouraging story. I've had MGUS for 14 years and it has been relatively stable, but my last three labs have shown progression, specifically the last two the progression was a little unnerving. I'm currently waiting for my appointment with the hematologist-oncologist. Whatever happens, I'm grateful to have had 14 years of worry-free time, and to know that there are plenty of options and hope for the future
In 2015, I had a really exhausting summer home from teaching. I had two kiddos - 1 and 4 at the time - and I genuinely thought it was just how motherhood was supposed to be. But in that fall, I started getting illness after illness (colds, eye infections, ear infections, sinus infections, etc.) and that in conjunction with the extreme fatigue I was feeling made me realize something was very wrong. I finally started teaming up with my primary care provider to dig deeper into all these illnesses in January. I had two trips to the ER in January/February - one for bone pain in my hips that woke me in the middle of the night and one for a fever + abdominal pain. I could've gone to my PCP for this, but both times it was after hours and I was desperate to tell any medical professionals my story and hope that they could put together all the pieces to the puzzle for me. I was finally seen by oncology and was officially diagnosed 4/4/16. So it was a journey, for sure.
God only knows why the first one didn’t work. Similar to why some meds work for one person and not another or how some meds only work for a certain amount of time and then don’t. My second CAR T was Carvykti.
Thank you for creating this video. As someone recently diagnosed, I found this very informative and also relieved some of my anxiety. Good luck and thank you!
