Thriving with Myeloma: What You Should Know About Care and Treatment
ฝัง
- เผยแพร่เมื่อ 28 มิ.ย. 2024
- Link to Full Transcript: bit.ly/3Pk8zCS
What does it mean to thrive with myeloma? Myeloma specialist and researcher, Dr. Joshua Richter discusses the goals of myeloma care, reviews treatment options -including research updates - and shares tools for taking an active role in decisions.
Dr. Joshua Richter is director of Multiple Myeloma at the Blavatnik Family - Chelsea Medical Center at Mount Sinai. He also serves as Assistant Professor of Medicine in The Tisch Cancer Institute, Division of Hematology and Medical Oncology. Learn more about Dr. Richter, here: www.mountsinai.org/profiles/j....
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Six years on many treatments”,76 years old and still going strong, can’t fault my treatment in the uk.
❤Dr Joshua Richter you are amazing and this was the best talk on this topic thank you I learned a lot
Excellent presentation! Thank you very much. I am a 70 years old ,stage one level just finishing induction therapy on DARA/REV/DEX. I have reached CR. Two of my takeaways from your presentation are: 1. Stem cell transplant (which I will not undergo even after having collected stem cells). 2. The suggestion of taking revlimid at night to minimize the fatigue level which has been a large concern for me.
On a side-note; as a newly diagnosed myeloma patient. The term PFS or progression free survival is a confusing and scary term and should be renamed as Progression Free TIME.
Your other suggestions are wonderful. I only wish I had your perspectives a year ago. Again Thanks!
Would love to know how you are doing with your treatment and what symptoms you hope will subside with the meds. Right now I am positive for MGUS in both blood and urine with minor symptoms. So not certain If at age 75 I personally will rush to any med treatment for fear of bad side effects. Cheers
Amazing. Just given me so much Hope
This was very educational and concise. Thank you!❤
❤Terrific Presentation!!
Great host, great speaker
I am 75 and a Vietnam Vet who was at Camp Lejune and Vietnam. So for the heck of it ask my VA doctor to run a MGUS test on me and sure enough I am positive for M Protein in both my blood and urine; but no other issues except for edema in my lower extremities. Shortness of breath upon climbing my stairs and some numbness and tingling with intermittent numbness of my left hand arm and feet all of which I am now tolerating very well. So far my other blood work is within normal range except for my increased eosinophils that I have had for years now
I now have a appointment with an oncologist who I am certain will recommend a bone biopsy of which I am now more fearful of then MM itself. Did anyone reading this go through a bone biopsy and was it painful? As I hate pain worse then death.
Over the past two years i have taken Quercetin and Vitamin D3 which I believe through my reading of these two substances can effectively stall the major symptoms of MM. Any thoughts on this? Cheers
Hi Thomas, This is a scary time. You are in good hands I'm sure. Don't worry about the bone biopsy. It’s not a big issue at all. One thing I would suggest in the early days of Receiving treatment on revlimid Is to be conscious of brain fog. This may seem subtle but I would advise you to not make any significant decisions on your own without loved ones questioning your judgment.
As to the side effects of treatment, everyone is different. If you are truly at an MGUS stage you may not want to take treatment right away. Your DR. will know. One thing you might ask the Doc about is getting a DEXA-SCAN to check for Osteoporosis and maybe start some bone remodeling agent. MGUS can go on for years and, from what I understand can inhibit proper bone rebuilding just like MM. As supplements I also take Calcium, Vit.D and Vit K2 , NAC and Quercetin. One YT channel I follow is the IMF (International Myeloma Foundation). This was valuable for me in learning about MM and treatments.
Good Luck!
Wow thank you very much for reading and responding to me and for letting me know about what you are doing with your MM along with your toleration of your line of treatment today.
I wish you all the blessings in the world for you to get better soon.
I will know more about all my numbers and ratios of my blood test by mid October after that my VA doctors and team wii reviews and I will then decide for myself what is best for my wife and I to get through this.
I had a great life and not afraid of dying except I cannot die peacefully as my wife keeps telling me I need to stay alive for her. And I can’t argue that one. Ha ha. Crazy the millions of emotions my wife andI are going through right now.
Hope we stay in touch and get well together.
Cheers and hope and prayers for a future discovery of this dreadful disease.
Hi Thomas, hope you are doing well. As was previously shared, don’t worry about bone marrow biopsy. It’s relatively pain less. I’ve just started induction therapy. So far so good.
Hello….and I am so sorry that you are going through this. My husband was in Vietnam and was in one of the heaviest areas that agent orange was sprayed. He was a navigator on a Mohawk helicopter. He will be 75 in Aug. He was diagnosed this year with diabetes and suddenly started getting numbness, burning and tingling in his feet. His balance is way off. His PCP referred him to a neurologist and it went this past Tuesday. The lab drew over ten vials of blood. The neurologist was very thorough and told my husband that he suspected he had MM or it could be two other issues. M husband only heard MM. I have been reading a lot about this blood cancer and the only symptom my husband has is the permanent neuropathy in his feet. The numbness does start right above his ankles. Just curious…..did you have any neuropathy issues before your diagnosis? What is the status of your treatment plan now? I may be worrying for nothing. Thank you for your service.
@@TheMimiof7 is your husband service connected for Diabetes? Did he have an MGUS diagnosis? Who told him he has multiple myeloma? Did he have a bone marrow test? If your husband a serious diabetic needing medication the neuropathy is related likely to his diabetes?
Right now I believe the quercetin I take is an active chemo preventive of developing full blown MM. I been taking it for over 3 years now no paraproteins in my blood and just a little in my urinalysis
Because I was in Camp Lejuene and Vietnam Nam I am entitled to medical monitoring for MM every 6 Month by the VA
CURRENTLY I AM 10 percent service connected for heart disease. Will send you links about Quercetin. Treatment and prevention of a variety of cancers A doctor order is not required. Hope I helped
I have been just recently diagnosed with MM, on May 2022, which in being treated with DEXAMETHASONE, BORTEZOMIB AND LENALIDOMINE. May go for a cell transplant if some remission is accomplished.
Best of luck with your treatment.
Peace be with you ❤
So good
Superb presentation. Such a shame you are in the USA, and I am in the UK. You all seem to work together over there, whereas here we are supposed to be told what to do and not question actions taken. I cannot do that, and learn everything I can. I had to chase my blood results, otherwise I would still be waiting. The NHS is in a bad way.
Best wishes to you all. Eve