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.
@PolygonHealth4 күн бұрын
Thanks for sharing Patrick, totally understand. We are rooting for your wife, you, and the rest of your family. Shout out to MM warriors!
@LindaMerritt-tk7tu2 ай бұрын
Shout out to MM warriors! Thank you Alan!
@patrickboudreau38463 ай бұрын
I listened to it all…Good man.
@patrickboudreau38463 ай бұрын
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.
@orscrub31615 ай бұрын
i’m happy abecma helped you. my husband developed plasma cell leukemia 5 months after his car t cell therapy. i miss him terribly.
@melindavanscoy98285 ай бұрын
Thank you Peter for sharing your story of hope! ❤
@nancybryant65486 ай бұрын
You are really doing a great job. Crush your competition with S M Z E U S.
@margaretauma12106 ай бұрын
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
@Rakib_Gazi726 ай бұрын
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@bernardconnelly6 ай бұрын
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
@acousticbwoi7 ай бұрын
Hi. My dad has MM. Can I talk to someone at Polygon?
@PolygonHealth7 ай бұрын
Hi! Yes, we would be happy to speak with you. Please send an e-mail to [email protected] and we will get back to you as soon as possible.
@serferten7 ай бұрын
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.
@MultipleMyelomaWarriors-ih5st5 ай бұрын
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.
@serferten7 ай бұрын
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.
@vanessahargrove-dz1si7 ай бұрын
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
@MultipleMyelomaWarriors-ih5st7 ай бұрын
I’m very thankful God is using me to help others. It lifts my spirits to know I am making a difference in the lives of others.
@user-sm4uc4kx9w7 ай бұрын
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.
@user-sl9uz8ut6z8 ай бұрын
PETER. CK OUT JOE TIPPENS CANCER PROTOCOL FENBENDAZOLE AND JESUS BLESS YOU
@user-sl9uz8ut6z8 ай бұрын
KELLY CK OUT JOE TIPPENS CANCER PROTOCOL FENBENDAZOLE AND JESUS BLESS YOU
@yeahyeahbutno47498 ай бұрын
Man I lack all the good bits aka divorce poverty homelessness and mm
@JesusSanchez-xu2is8 ай бұрын
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.
@frankvitucci56777 ай бұрын
Did you receive a Covid vaccine?
@JesusSanchez-xu2is7 ай бұрын
@@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.
@raymondseager12998 ай бұрын
So proud of you Gemma ❤️
@user-ee8th3bn9b8 ай бұрын
Looking for Gemma’s feed on IG?
@jackiebruney4498 ай бұрын
Thank you so much!❤
@MultipleMyelomaWarriors-ih5st7 ай бұрын
You are very welcome. I’m glad you found it to be helpful.
@user-ee8th3bn9b9 ай бұрын
True warrior, well done Alan. The Facebook group is such a great source of info. Chris Newcombe from UK 👍
@user-sm4uc4kx9w7 ай бұрын
I am glad that you have found the group to be helpful and I love to see people from outside of the US joining. WE FIGHT TOGETHER!!!!
@emmanuelking99889 ай бұрын
I have multiple myeloma and this interview truly resonated with me...thank you 🙏
@MultipleMyelomaWarriors-ih5st7 ай бұрын
I’m glad it helped.
@alan-ps9pm9 ай бұрын
Thank you for allowing me to tell my story. I hope it helps some others dealing with Multiple Myeloma. They all need to know that there is hope.
@emmanuelking99889 ай бұрын
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 🙏
@MultipleMyelomaWarriors-ih5st7 ай бұрын
I’m glad it helped. If you haven’t joined my Multiple Myeloma Warriors Community, please do so
@michelleseguin29309 ай бұрын
Did you have to have a bone marrow biopsy to get diagnosed?
@kguynup9 ай бұрын
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.
@JWB6714 ай бұрын
@@kguynupare you igG Kappa? What were your numbers like when you first found out? M protein, FLC ratio, bone marrow%
@simil2529 ай бұрын
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….
@kguynup9 ай бұрын
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.
@kguynup9 ай бұрын
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.
@kguynup9 ай бұрын
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. :(
@Jenny-oy3xs7 ай бұрын
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 KZbin. 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
@1GoldenBreeze9 ай бұрын
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
@karapotts76239 ай бұрын
Thanks for sharing. What were the symptoms?
@kguynup9 ай бұрын
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.
@karapotts76239 ай бұрын
Im so sorry Kelly! Thank you for sharing your story. Praying for continual healing, peace, and hope for you and your family. @@kguynup
@Amnigaggh9 ай бұрын
Why didn't the first cart t work also what was the name of the second cart t ?
@kguynup9 ай бұрын
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.
@tomandgronkforever466310 ай бұрын
Love you mom❤
@kguynup9 ай бұрын
I love you, Evan! Sorry I am just seeing this. <3
@tomandgronkforever46639 ай бұрын
Love you too
@DonAllman-mn1zc11 ай бұрын
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!