Good morning May I inquire from you, I have had MGUS for about 4 years and most recently smoldering. I am a 76 year old woman, I also suffer with M. S. ( 20) years, remitting. I also have multi level stenosis, neck, thoracic and lumbar. I am in terrible pain constantly. I have not agreed to a bone marrow test as the MGUS moved so slowly, but truly terrified. Is it possible to not have one? Thank you for considering answering my question .
I have MGUS, I live in Apache Junction Arizona...how do I get help to stop MGUS from going to MM..why make us wait around to get full blown cancer when we could be helped right now thus avoiding MM all together?
Most cases of MGUS don't turn in to full blown MM. I got diagnosed 3 years ago now. I know watch and wait is frustrating, but you get used to it. I get my blood work from my hematologist/oncologist every 6 months. So find a doctor that you trust. My numbers are up slightly this last time, but nothing to worry about. Considering my doctors initially thought that I had lymphoma, remember MGUS is not cancer yet, and getting it monitored will help them catch any changes early. Know what type you have (mine is Iga kappa) so you can take extra care against opportunistic infections (for example I am more prone to respiratory and urinary tract infections). Get your flu shot every year because your immune system isn't as strong as healthy people since you have rogue antibodies. Wash your hands often. Get enough rest. Find a good hematologist/oncologist and get your blood work done on schedule. Treat the anemia with supplements and stay hydrated to protect your kidneys from the proteins. I use marijuana medically at night, and it made my numbers go down for two years, but now they're up this year, so I don't know maybe it helped, maybe it didn't. Multiple myeloma is usually found late once someone breaks a bone or worse. So we will be monitored and they will find it early. There is a 1% chance per year that MGUS turns into MM. But first year, 1%, second year, 2%, third year, 3%...so getting your blood work is really the most important thing. Dana Farber and other clinics have studies you can join. Some are testing low dose MAB's, but consider the side effect profile of chemo that permanently alters your genes vs the symptoms of MGUS. Good luck!
Just diagnosed with MGUS doing more tests, blood,urine,skeletal scan. Then talk to dr again. Ongoing bladder infections that are hard to beat. lots of other symptoms. Ugh. Where will this go?
I'll be finding out tomorrow (I hope) whether I have MM or just MGUS or SM. If I have either, this Dana-Farber group will be treating me. Am trying to be hopeful but not in denial that it may be MM. LOTS of praying today.
@@huetran4361 I have full MM. Have started the Revlimid, Velcade, Dexamethasone with a possible ASCT in a couple of months. I feel fine, just fatigue. And I get the subcutaneous Velcade because there's MUCH less chance of neuropathy vs. the IV Velcade.
@@umm8446 They can't tell anyone what their life expectancy is with Myeloma. There are so many things that impact it. Though, there have been SO many advances in Myeloma meds in recent years that they say it's on the verge of being treated like a chronic disease. Not curable, yet, but definitely treatable. The chemo is less caustic than I thought it would be and I've got the stem cell transplant ahead of me after I finish a couple more rounds of chemo. You have reason to feel optimistic for your sister, Myeloma is not as bad as it used to be. But the sooner she gets into treatment the better to stop some of the ongoing damage to bones and kidneys. Best of luck to your sister !
@@umm8446 I had a lot of pain in my lower back and a lot of fatigue. In my case (and frankly for others) both of these things are common symptoms for a LOT of other things. I knew I had a herniated disk in my lower back but the pain had gotten so much worse and was all throughout my entire pelvic/hip area that I asked for an MRI and that's when the lesions (holes, really) were spotted in my bones. They then did the blood test and a 24 hour urine collection to check for Myeloma. The blood test is really the definitive test. Some people get unexplained bone fractures that turn out to be from the holes that form in the bones from the Myeloma. The blood and urine tests are really the only way to diagnose it, though. Bone pain and fatigue and for a lot of people, unexplained weight loss are the 3 main symptoms.
I think all of us have had exposure to Roundup, it's all over our food and people spray it freely in their yards. Good luck with your blood tests. If it is MGUS, you will be getting LOTS of blood taken every 6 months for the rest of your life. But that's a must so they can find any changes early. Find a hematologist/oncologist that you like. Mine is one of the best doctors I have ever been to, he's so intelligent but puts all my worries at ease. It's been over 3 years since I was diagnosed.
@@jessicah3450 How have you come along in these past two years? I was diagnosed 2 years ago and have also begun a keto life style at the same time. Any recommendations?
