James Bond, diagnosed with multiple myeloma in 1992, shares his experience of fighting against multiple myeloma and his perspective on the “huge power” of clinical trials.
Пікірлер: 136
@heru-deshet3595 жыл бұрын
I was diagnosed with MM stage one 11 months ago. I'm getting ready for my my first stem cell transplant using my own blood. I'm praying with all the new meds I've been taking with chemo and radiation I will achieve remission this time around. God bless.
@heru-deshet3594 жыл бұрын
@Donald J. Trump Thank you.. They found mine from a plasmoid tumor that formed and broke off in my right clavicle. removal of one third of my clavicle came beck malignant and a bone marrow biopsy confirmed MM stage one. I'm lucky it didn't get my kidneys and lower back or I would be in a wheelchair. I recommend that you see an oncological specialist. Don't settle for a first opinion from a family doctor. God bless.
@heru-deshet3594 жыл бұрын
@Donald J. Trump Same to you,brother.
@michellegarth24084 жыл бұрын
God bless you I pray for your healing in Jesus Name 🙏🏾
@johnnyloungejazz54774 жыл бұрын
Just had a Marrow Biopsy today! My bone scan was clean, The results will take a week so I really don’t have a clue what the results may be.
@ranirajput14973 жыл бұрын
@@johnnyloungejazz5477 how you got treated
@davidrosenman18894 ай бұрын
What a story. What a brave person. And those compassionate medical team, Paul Richardson, etc. Very moving.🥀
@camr34153 жыл бұрын
My father was diagnosed with MM this week...I've been trying to give him hope through survivor's stories...thank you.
@shamithapa47213 жыл бұрын
Yes n it really works
@christopherhiggins42492 жыл бұрын
Hi Cam. I’m sorry to hear of your fathers diagnosed. My mom has it as well and I know how hard it can be on their loved ones. They have made some remarkable strides the last few years. If I can be a source or reference to you or your father please reach out 🙏🏻
@ulisesalmanza59682 жыл бұрын
How's your father doing.
@anime4u2555 ай бұрын
My mom got MM too, how can i contact you ? @@christopherhiggins4249
@davidrosenman18894 ай бұрын
God bless you and your father.🥀
@lifeandamyloidosis85515 жыл бұрын
26 years sounds like a cure to me. Thank you both for sharing your experiences. It's inspiring, helpful and understandably, difficult. Much continued health and courage to both of you.
@valeriecopeland99683 жыл бұрын
Kathleen The World is a BETTER PLACE because of people like YOU❗️❗️❗️❗️
@williamk1060 Жыл бұрын
I'm 29 years old and was diagnosed with stage 3 metestatic MM 2 months ago in the ER with total kidney failure and multiple bone fractures. I only did 2 weeks of dialysis in the hospital before my kidneys completely recovered. Now I'm doing my 4 cycles of Revlemid and Velcade in preparation for stem cell transplant in a couple months. Between the chemo and the bone pain it's hard to go to work, but my numbers are continuing to improve. The doctors are all very optimistic based on my youth and fitness and I hope I can live the rest of my life as pain free as possible. All my doctors told me that an MM diagnosis just 10 or 15 years ago would have been a death sentence, it's amazing that you've survived this long and still continue to amazing things.
@rxmw40 Жыл бұрын
How are you doing now?
@williamk1060 Жыл бұрын
@@rxmw40 I’m doing well! I’m responding very well to the treatment and am almost finished with my 4 cycle initial infusion. I have a stem cell transplant scheduled for late May timeframe, which the doctors are confident about. I feel very lucky, the oncologists say that we are in “a golden age for meyoloma treatment” and I definitely feel that!
@davidrosenman18894 ай бұрын
God bless you so much. Hope you're doing ok.🥀
@ravikushan99793 ай бұрын
@@williamk1060how u doing now ?
@LivingforJesusMotherof2 Жыл бұрын
praise the Lord this man is still alive just read article about him 2023
@francestintelnot23632 жыл бұрын
In my 22nd year with MM. At diagnosis, Stage lll, no SCT, no maintenance. Many side effects from the high dose chemo. Came back in 2020 in my kidneys. Chemo was so much easier this time around. You just can't give up. Keep the Faith! 💕🙏🙏🙏💕
@christopherhiggins42492 жыл бұрын
Bless you frances.
@stylebybbm6759 Жыл бұрын
Wow! That's all I can say. Blessings to you Francis
@joannaspieszna6863 Жыл бұрын
Keep going 💪
@beinghuman12349 Жыл бұрын
God bless you always My mother has been diagnosed with MM STAGE 3 We are in much panic situation this Please Please suggest me some feedback how to handle this situation
@anime4u2555 ай бұрын
SIR you survived for 22 years without SCT ?
@georgetootle4853 Жыл бұрын
Hello I'm just a Limey from Liverpool ,been diagnosed with MM Aged 59. Two treatments have not worked .Back with Consultant Wednesday. You've given me so much Hope.Cheers.
@stylebybbm6759 Жыл бұрын
All the best to you. Take it one day at s time for the sake of your mental health 🕯️
@davidrosenman18894 ай бұрын
Love to you. Hope you're doink ok.
@LAVIKOKA Жыл бұрын
I am so proud of him. When I see what he went through I can not complain . I was diagnosed with MM in the ER with a horrible bad pain due to several fractures and a couple of broken ribs 2 years ago. I am in remition now but I continue to have back pain. I am trying to think positive and make the best of it.
@mijumaru97 Жыл бұрын
You are very lucky the ER was willing to go to that length to help diagnose you. And I am happy to hear you are doing better. I went with my mom to the ER due to horrible side pain and they thought she had a UTI. All they did for her was a simple urinalysis and just sent us off but I knew we had to continue to do more tests with help from talking to her doctor. CT scan results show my mom *might* have MM and she has to get a biopsy. If only more ER doctors were perceptive and just listened to the patient!
@LAVIKOKA Жыл бұрын
@@mijumaru97 This is what I have been told, that I was lucky the ER did something about it and looked further to find out what the problem was. I am sorry no-one helped your mother when she needed it the most. It is very sad. I had to pushed doctors to send me to Physical Therapy to help me with the pain. No one cared . This is why I do not trust doctors in general I simply listen to my body and do my homework by researching and finding answers to tell doctors what they need to do for me. They do not like that at all. Hope your mother is doing well now. There is a light at the end of the tunnel .
@anime4u2555 ай бұрын
can you please tell us w what was your stage back then?, did you do SCT, also if its okay how are you doing right now?
@davidrosenman18894 ай бұрын
Love to you. Hope you're doing ok.🥀
@davidrosenman18894 ай бұрын
Hope she's doing ok.🥀
@teledogz Жыл бұрын
Thank you! I was diagnosed on May 19 of this year with MM at 54 yrs old. I just finished my Velcade treatment and I am scheduled for my stem cell harvesting next week and my BMT in mid December. I have a lot of fears but you give me inspiration. Thank you for sharing your amazing story, keeping the faith! God bless...
@curtanderson7978 Жыл бұрын
I had the same treatment route as yourself 1.5 yrs ago..Transplant Last Feb...after a good 4 months of some sick,rehab strength back, focus for the future I feel great, exercise every second day, just a hint of the odd cancer cell now...AND you will too. Strength to you too,looking forward to 60 this Oct bucking wood and Camping with my wife. Never giving up
@rxmw40 Жыл бұрын
How was did the harvesting and BMT go?
@curtanderson7978 Жыл бұрын
@@rxmw40 The harvesting was easy peasy..took all day but wasnt painfull other than injecting myself with a needle everyday in the stomach a week before so my bones would release stem cells.Not everybody has to but mine were stubborn. Sounds bad but its not really. 6 months later I had the Transplant.. almost 4 weeks until I was able to go home but again It wasnt painful, mostly cant sleep getting checked every 4 hrs blood tests for a week and alot on the toilet lol. Pretty scary stuff killing everything in your blood and then re-booting it back up again with stem cells. It worked,..Im lucky so far..its a long road to get your strength back took me 4 - months but its been15 months no Cancer to speak of !!! Hoping it last 2 more yrs , hoping is all you have , with no hope you'll fade away. I hope good things in your life !! Let me know if u have anymore questions...I had alot too
@teledogz Жыл бұрын
@@rxmw40 Thanks for asking! All went well. Except for fatigue I had minimal side effects and my recovery was quick. I feel so fortunate to be where I am. I am now on maintenance treatments and able to enjoy every day!
@beinghuman12349 Жыл бұрын
@@teledogz My mother has been diagnosed with multiple myeloma Please provide me some information Please 😭😭
@valeriecopeland99683 жыл бұрын
What an awe inspiring testimonial THANK YOU so much for sharing. What AMAZING people you have in your life💯💯💯💯
@christopherhiggins42492 жыл бұрын
Boston is the best. The doctors, nurses and staff are amazing.
@NkNk-vg8fc Жыл бұрын
Any pediatric drs you can recommend the mylenoma
@youtubeokay5769Ай бұрын
Canada needs to learn from them
@thomasfraser9072 Жыл бұрын
I am 75 with positive MGUS in both blood and urine. I am just taking Quercetin and Vitamin D3 with multivitamin and mineral and hoping for the best. Don’t like the idea of bone biopsies as at my age I am currently doing OK; so what the point. Just hope to keep a smile on my face and keeping my cytokines down from now to the day I die. Will be glad to communicate with anyone else my age who has this dreadful disease Cheers
@venomx4093 Жыл бұрын
You need vitamin K with that D3 or else the D3 will send calcium to places it doesn't belong like your heart.
@debbiel8168 Жыл бұрын
Hi Thomas, My doctor diagnosed me with MGUS in 2019. I was 67 at that time, so you're not much older. than me. In 2020 I tripped on a garden hose in my driveway and fell flat on my chest on the hard asphalt. I was in a lot of pain so my doctor took x-rays to make sure I didn't have any broken bones. Amazingly no bones were broken but the x-rays did reveal something we weren't expecting. I had numerous bone lesions which indicated that I had probably had Multiple Myeloma.. He immediately referred me to an Oncologist for further tests. The bone marrow biopsy sounds worse than it really is. They numb you really good so you don't feel it. Are you seeing an Oncologist? The first Oncologist my primary care doctor referred me to didn't seem very knowledgeable about MM. I told my primary doctor I wanted a second opinion and he then referred me to the City of Hope. Now I'm seeing a Myeloma specialist and it has really helped me feel more confident in the treatment plan.. I hope you continue to do well and may God bless you !
@toneenguyen6323 Жыл бұрын
Hi there Thomas, my mom is 81, and was diagnosed a few months ago. She is on her second week of Velcade. It has spread to her liver and kidney. How are you doing and handling your situation? Hoping for positive feedback. Thank you take care
@thomasfraser9072 Жыл бұрын
@@toneenguyen6323 currently I get tired and fatigued in the middle of my day. And I get shortness of breath from a 6 minute walk. I have a history of ischemic heart disease with double bypass surgery of my heart in 2018. Will be having a repeat Heart Echogram at the end of the month to determine if my aorta artery has delated more from 4.5 a year ago. My MGUS test had M spike light chain lambda at 1.3 percent which is not much Also surprisingly my Gamma Globulin is a low 0.54 with a 2.19 High Free K/L LC Ratio My IGA antibodies are within normal limits at 145; but my IGG and IGM antibodies are low at 608 and low of 25 My VA Oncologist did not tell me much and did not examine me; but wrote that he had. He dismissed my concerns immediately so I am now seeking a second opinion from my private insurance doctor who agreed to send a consult in to another oncologist. I will tell him about all I have been taking over the past 2 years to prevent COVID symptoms and that I think it may have kept my Multiple Myeloma in check. Will be looking forward to see if he thinks I am crazy for even thinking this. Will show him research papers to him to suggest that I might not be crazy as he thinks. Hope your grandmother gets well with whatever continued treatment she decides on. Tell her doctor to look up Quercetin and it’s effectiveness in blocking P13K to kill multiple myeloma cells
@thomasfraser9072 Жыл бұрын
@@toneenguyen6323 this may be of interest for her doctor to read The flavonoid quercetin has shown anti-tumor effects against a variety of solid tumors. However, its effects on multiple myeloma (MM) remain unclear. In this study we examined the proliferation of human myeloma cell lines U266, KM3 and RPMI8226 and MM derived cells from four patients with MM after quercetin treatment, and detected the expression of IQ motif-containing GTPase activating protein 1 (IQGAP1), a scaffold protein involved in mitogen-activated protein kinase (MAPK) signaling, by reverse transcription-polymerase chain reaction (RT-PCR) and Western blot analysis. We found that quercetin inhibited the proliferation of MM cells in a dose- and time-dependent manner, accompanied by reduced IQGAP1 expression at mRNA and protein levels, and reduced extracellular signal-regulated kinase 1/2 (ERK1/2) activation. Furthermore, we found that quercetin inhibited the interaction between IQGAP1 and ERK1/2 in RPMI8226 cells. In summary, our results suggest that quercetin suppresses the proliferation of MM cells by down-regulating IQGAP1 expression and ERK activation, and has potential as a novel agent to target oncogenic kinase cascades for MM therapy. Keywords: IQ motif-containing GTPase activating protein 1; MAP kinase pathway; Quercetin; multiple myeloma.
@heidipucci9078Ай бұрын
Your talk is so very inspiring ❤thank you for always hoping...that's why it can help us! Much love and many many more years to you and and your family ❤❤❤
@nesreenfahmi86082 жыл бұрын
It is very emotional and it gives us hope and determination to fight cancer , god bless you both
@graciousgirl51613 жыл бұрын
My husband only 41 years old. Been going on for 3 years now. Thank you for car t cell treatment clinical trial. To year remission, numbers are just starting to go up slightly.
@pj10128NY4 жыл бұрын
Two inspirational and amazing human beings!
@nayangsanoto462 жыл бұрын
I have been diagnosed with MM in November 2019. My life has turned around, I deal with a lot of uncertainty all the time
@GD-cr5um2 жыл бұрын
Take care❤ u will get better.
@emmanuelking99887 ай бұрын
I was diagnosed with multiple myeloma this year and I understand what you wrote 100%...my life has been turned upside down too and there is so much uncertainty now that I get high anxiety and feel deep sadness that I simply can't shake off. How are you today? I hope you are doing well 🙏
@bubbafatas25882 жыл бұрын
Just diagnosed with smoldering MM. This sounds arduous for everyone from family to friends. Watched two dear friends die of cancer! I have no interest in living just to fight cancer over and over and over!
@venomx4093 Жыл бұрын
How are you now?
@bubbafatas2588 Жыл бұрын
@@venomx4093 Hello doing ok, no treatment as of yet due no symptoms! Something to look forward to I presume.
@venomx4093 Жыл бұрын
@@bubbafatas2588 Good to hear. Battling a lot of health issues as well. I'm like you. To hell with chemo, high med bills just to suffer more and still die.
@thomasfraser9072 Жыл бұрын
Look up Quercetin in treatment of MM and other cancers. Told my oncologist I was taking it and feels it is helping me. He said he knew of Quercetin and for his own reasons takes it himself. I said then why don’t your tell your patients about this natural substance for cancer treatment. He said because it is not FDA approved 😮
@venomx40938 ай бұрын
@@bubbafatas2588Are you still around?
@bhavyasrinivas24043 жыл бұрын
May God bless you both with a long and happy life..So hard to imagine what u both have been through..but so amazing to see the fighting spirit in both of you and especially being so positive..Hats off..Need more of you people in this world 👌👌👌
@F.Constantin2 жыл бұрын
Wow what a hero 🙏 God bless you Sir
@ymandinoart93454 жыл бұрын
My mother in law was just diagnosed just curious what was your diet and life style like and did you ever have any family history of this disease
@JimXultra2 жыл бұрын
Seem like great people. Thanks for sharing this !!!!!
@shahramamini6106 Жыл бұрын
i will pray for all . i am sure always god help
@stylebybbm67594 жыл бұрын
I was diagnosed 4 months ago with MM. I was told that my spinal cord has holes in it. I'm taking oral chemo and radiation. It's awful
@carolynwilliams33194 жыл бұрын
Please check with cancer centers in your area to see if there are clinical trials in your area. I am at the end of an eight month drug trial and heading to stem cell transplant in 2 weeks...there are so many more options than there were years ago, when chemo and radiation were the only options.
@j3m3r34 жыл бұрын
I hope things get better for you!
@lifesajoy96774 жыл бұрын
I was diagnosed with MM seven months ago. I was told that I'm still in the smoldering stage, too early for any treatment. As I'm told it's a good thing that it was found early. Although I'm being checked every 3 months for any progression, I do find it strange that I'm kinda waiting for the train to come barrolling my way. So I wait, pray and wonder what comes of my future. I'm 57, and single sole provider, that's what scares me the most. I pray that I can continue to work through this all. I love reading of others journey with MM for the education and encouragement. I pray that I'm Blessed to be feeling as well as I do
@lifesajoy96774 жыл бұрын
I pray for you, I hope things are better with your treatment. I too am a African American female, who has been diagnosed. Let's stay hopeful and encouraged.😊
@heru-deshet3593 жыл бұрын
You're in my prayers.
@debbieparks81083 жыл бұрын
My blood work shows elevated free Kappa light chains, not sure what that means yet, but hoping for he best. Have an appt with oncologist.
@thomasfraser9072 Жыл бұрын
I as well. positive MGUS. Been taking Quercetin to prevent possible MM. so far so good. Just goggle it. And tell your oncologist you might want to try it. And see what he or she says..
@venomx40938 ай бұрын
any updates?
@emmanuelking99887 ай бұрын
@@thomasfraser9072 I have multiple myeloma and read that Quercetin can be very effective...how has it worked for you? Hope you are doing well 🙏
@NEGAN_3102 жыл бұрын
My dear friend Tracy, has just discovered her MM has become active. She had smouldering MM. She's having a bone marrow biopsy this week. She has bad Anemia and a broken rib. She's waiting to here which stage she is. She lives in Virginia. Does anyone know of any place around Richmond which might put her on a clinical trial. I live in Sydney Australia, so it's hard for me to help. She's in her 40s.
@StalloneSRB2 ай бұрын
Where is this man today?
@chelimartinez99993 жыл бұрын
Praise be to GOD ALMIGHTY!!!🙏🙏
@dianeclausnitzer20012 жыл бұрын
Thankyou for sharing ,means a lot.
@MrGODINTHEMAKING2 ай бұрын
I just got diagnosed with M.M a hour ago.
@kathleenbond65672 ай бұрын
Keep the faith - there’s a lot of good news in the myeloma world now. Very important to get an assessment by a myeloma specialist - someone who sees myeloma all day every day! That doc can coordinate care with your local physician.
@christophersandmann Жыл бұрын
This is a love story.
@PatriciaKane-tz3yd5 ай бұрын
Wonderful story , also Hope Lodge info God is good ! & Dana Farber institute Boston , Mass , CLEVELAND HOSPITALS FAILED HIM
@kathleenbond65672 ай бұрын
Hi Just wanted to clarify this - Cleveland hospitals didn’t fail - the only place in the whole country at that time where the clinical trial was open was at Dana Farber. The trial was later available in Cleveland, but Jim didn’t have the luxury of waiting. Dana was working closely with the drug company developing the drug so that is why they had it first. Hope all is going well for you!
@carlyoung8657 Жыл бұрын
Great story.I have cll and on watch and wait.I may call Dana-farber.
@hollybrabeau3 ай бұрын
Clinical trials work for some and not others. It's Russian roulette. You're better off fasting.
@casiusclay29873 жыл бұрын
Do clinical trials in USA recruit people from Poland ?
@Ijnwanze16 күн бұрын
Please food is good for MM kappa light chain
@thomaskrymkowski-om5mk10 ай бұрын
What exactly is remission from MM? How do i know i am in remission ?
@emmanuelking99887 ай бұрын
Please speak with your oncologist about explaining the blood work... kappa and Lambda light chain numbers is a good indicator of how your MM is doing: if it's progressing, if it's moving down towards remission or if you are in full remision. Your kappa, Lambda and ratio numbers all have to be down and in range to be in remission.