How to fight against multiple myeloma: A Multiple Myeloma survivor story
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- Опубликовано: 7 мар 2019
- 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.
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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.
@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.
@Donald J. Trump Same to you,brother.
God bless you I pray for your healing in Jesus Name 🙏🏾
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.
@@johnnyloungejazz5477 how you got treated
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.
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.
How are you doing now?
@@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!
God bless you so much. Hope you're doing ok.🥀
@@williamk1060how u doing now ?
What a story. What a brave person. And those compassionate medical team, Paul Richardson, etc. Very moving.🥀
praise the Lord this man is still alive just read article about him 2023
Kathleen The World is a BETTER PLACE because of people like YOU❗️❗️❗️❗️
My father was diagnosed with MM this week...I've been trying to give him hope through survivor's stories...thank you.
Yes n it really works
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 🙏🏻
How's your father doing.
My mom got MM too, how can i contact you ?
@@christopherhiggins4249
God bless you and your father.🥀
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! 💕🙏🙏🙏💕
Bless you frances.
Wow! That's all I can say. Blessings to you Francis
Keep going 💪
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
SIR you survived for 22 years without SCT ?
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.
All the best to you. Take it one day at s time for the sake of your mental health 🕯️
Love to you. Hope you're doink ok.
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.
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!
@@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 .
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?
Love to you. Hope you're doing ok.🥀
Hope she's doing ok.🥀
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
You need vitamin K with that D3 or else the D3 will send calcium to places it doesn't belong like your heart.
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 !
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
@@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
@@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.
What an awe inspiring testimonial THANK YOU so much for sharing. What AMAZING
people you have in your life💯💯💯💯
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...
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
How was did the harvesting and BMT go?
@@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
@@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!
@@teledogz
My mother has been diagnosed with multiple myeloma
Please provide me some information
Please 😭😭
It is very emotional and it gives us hope and determination to fight cancer , god bless you both
Seem like great people. Thanks for sharing this !!!!!
Boston is the best. The doctors, nurses and staff are amazing.
Any pediatric drs you can recommend the mylenoma
Wow what a hero 🙏 God bless you Sir
Two inspirational and amazing human beings!
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 👌👌👌
I have been diagnosed with MM in November 2019. My life has turned around, I deal with a lot of uncertainty all the time
Take care❤ u will get better.
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 🙏
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.
i will pray for all . i am sure always god help
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
Thankyou for sharing ,means a lot.
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!
How are you now?
@@venomx4093 Hello doing ok, no treatment as of yet due no symptoms! Something to look forward to I presume.
@@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.
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 😮
@@bubbafatas2588Are you still around?
Praise be to GOD ALMIGHTY!!!🙏🙏
Do clinical trials in USA recruit people from Poland ?
Where is this man today?
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.
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.
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..
any updates?
@@thomasfraser9072
I have multiple myeloma and read that Quercetin can be very effective...how has it worked for you? Hope you are doing well 🙏
This is a love story.
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
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.
I hope things get better for you!
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
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.😊
You're in my prayers.
Wonderful story , also Hope Lodge info
God is good ! & Dana Farber institute Boston , Mass ,
CLEVELAND HOSPITALS FAILED HIM
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!
Great story.I have cll and on watch and wait.I may call Dana-farber.
I just got diagnosed with M.M a hour ago.
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.
What exactly is remission from MM? How do i know i am in remission ?
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.
❤️❤️❤️✊🏾✊🏾✊🏾
Clinical trials work for some and not others. It's Russian roulette. You're better off fasting.
If at first you don’t succeed never try again