My wife is 61 year old. She is in good health and used to exercise at least an hour a day five days a week. She was diagnosed with multiple myeloma in July 2024. She had developed three compression fractures of the vertebrae T8,T11 and L1 Over a few days. She also developed high calcium level. She was started on quad regimen, including. Darzalex, Revlimid, Velcade and Dexamethasone. Her bone marrow biopsy shows she has one high risk feature 1q gain. We met with Oncologist after eight weeks of treatment. Her light changes have normalized and M protein has gone down from. 1.2 to 0.1. During our first appointment at the time of diagnosis our Oncologist told us that she will get four cycles of induction therapy followed by stem cell transplant. However, during recent appointment after eight weeks of treatment and bone marrow cytogenetic report at hand, he told us that stem cell transplant Is an option for her but not necessary. He says whether she gets stem cell transplant or not her survival will be the same. So she could skip the transplant and go straight to maintenance therapy with Revelimid and Darzalex. We know that stem cell transplant was being offered as a standard treatment to younger and fitter patients till recently And my wife would fall in that group, but it is also a harsh treatment with some serious side effects. After the recent discussion with our oncologist We are not sure which way to go. We are looking for feedback from patients who were candidates for stem cell transplant, but decided to go straight for maintenance therapy with Darzalax and Revlimid. We would like to know how they are doing and what is their experience so far. Thank you.

Anyone else experienced cough after central line placement? When I walk up the day after it was placed, my throat felt a little scratch, as if getting a cold. About three later I developed a cough; no mucus just dry cough with scratchy throat. I've been drinking hot tea to help, but I'm hoping it will resolve before my SCT in two days ... Or can do still do SCT if someone has a cough?

I was diagnosed with smoldering myeloma 2.5 years ago. I suspected it (I’m a physician) because of mildly elevated globulin level and foamy urine. I visited my own medical university (I’m retired) and two major medical centers with myeloma expertise. I researched a number of medical journals and reviewed a couple of ongoing studies regarding smoldering myeloma. I decided to use the data gleaned to develop my own cocktail to try to reduce the likelihood of conversion to myeloma since I was considered low-medium risk. My treatment regime includes: 4 grams of curcumin with Piperine twice daily (piperine improves absorption). This has been found to have beneficial effects. 3 grams of DHA and 3 grams of EPA daily (in two divided doses). Both EPA and DHA has caused apoptosis (death) of myeloma cells (in vitro), but I haven’t found clinical studies that have looked at this. 1,500 mg metformin (long acting) in the evening. Metformin use among those with type 2 diabetes has appeared to slow conversion. Although I am not overweight,nor do I have diabetes, I try to eat well (limit snacks) and exercise daily by both aerobic and strength training. That obese people and those with type 2 diabetes seem to have a more rapid conversion to myeloma may well be due to their higher insulin levels, is my suspicion. Both metformin and exercise along with being at a healthy weight reduces insulin levels. I don’t know if my approach is working as I am just one person. But so far my labs have been stable and regularly checked. And yes, my hematologist and internist know of my treatment strategy.

Good morning. I was just started on Tecvayli and am interested if anyone has any experience with it and its side effects after being placed on the weekly schedule I have had a few fevers and they are attributed to the cytokines release. Have they diminished? I have lesions that were treated and when the cytokines release they are painful. Has this symptom diminished?

Hi, I was supposed to start my Autologous Stem Cell treatment in November, but I don't have a caretaker. My husband was going to do it, but I kicked him out because he was being abusive and gaslighting me. I don't qualify for IHSS because I can't get MedicAid or MediCal unless I quit my job and have no income. Unfortunately, the only local friend I have doesn't drive, and my sister lives two and a half hours away. My treatment was going to be at Stanford. Does anyone have any experience with being unable to get a caretaker? What options do I have available to me?

So it's that lovely time again. My 3 month blood test, I was supposed to have it Tuesday but it wasn't too much of a problem and they just did it whilst I was in the area yesterday. So as always I hate needles but credit where credit is due the lady who took the blood wasn't too bad. There was a lady who was in 3 before me (not for cancer I believe) and she was still there when I left after having my blood taken. She was drinking loads of water before going in and still they couldn't remove it. It was actually hard hearing her crying because of how many times they had jabbed her, It makes me thankful that even after the amount of needles I have had and the big C of course my veins are still very good. Anyway results are due 9th September at around 12:30pm UK time, I don't feel ill so I should be okay but we all know that smouldering doesn't have any signs other than in your blood. Anyway we shall see on the 9th. I hope everyone is keeping as well as they can and still fighting the fight. :-)

Could someone please explain or send info about the BEAM transplant??

Hi I was newly diagnosed with mgus in June 2024 . I am 55 yrs old and I am having major anxiety. I don't really have symptoms and found out by accident taking blood work. I need to speak to someone going through the same. Can't find support groups because it's not cancer but it is still taking a toll mentallyand emotionally. Anyone interested in talking in the Brooklyn ny area??

Hello, has anyone used mezigdomide (MEZI), tazemetostat (TAZ), and dexamethasone (dex) as combined therapy to treat relapsed/refractory multiple myeloma? If you have, I'd be interested in hearing your experiences in terms of any side effects, effectiveness, and reason why your doctor put you on this treatment. Thank you!

You can apply for additional funding within the same initial 12-month grant eligibility period if you run out of funds and your balance is $0. Additional funding applies only to copay and health insurance premium grants. You can apply for a renewal grant within 30 days of the end of your initial 12-month eligibility period to start a new 12-month eligibility period if the fund is open. Renewal grants apply to all types of PAN grants: copay, health insurance premium, and transportation.

Additional information re: PAN grants You can apply for additional funding within the same initial 12-month grant eligibility period if you run out of funds and your balance is $0. Additional funding applies only to copay and health insurance premium grants. You can apply for a renewal grant within 30 days of the end of your initial 12-month eligibility period to start a new 12-month eligibility period if the fund is open. Renewal grants apply to all types of PAN grants: copay, health insurance premium, and transportation.

Additional funding Additional funding is only applicable to copay and health insurance premium grants. If your current PAN grant balance is $0 but you need more money to pay for medication before your eligibility period ends, you can apply for additional funding for yourself if the fund is open. If approved, you will be able to use the additional funds during the rest of your eligibility period.

Hello, I was diagnosed with Multiple Myeloma in September 2023 at age 37. Upon diagnosis, they stuck a tube in neck vein to clean up my blood (apheresis) because I had hyper viscosity (thick blood) due very high IGA (7,000+) and M-spike (over 6.0) levels. After that they started me on the quadruple induction therapy (daratumumab, revlimid, Velcade, dexamethasone). The induction therapy worked for about 4 cycles before my disease developed resistance to it and my numbers became stagnant. Following this, my doctor switched me to venetoclax (400mg at first, and then 800mg) with weekly 20 mg of dexamethasone - because I have translocation 11;14. Within 60 days, venetoclax brought my M-spike down to ZERO. After my M-spike was eliminated, they did a bone marrow biopsy and found that my disease had evolved from standard risk to high risk by gaining 1q23, which is considered a high risk cytogenetic abnormality by the International Myeloma Working Group.... Has anyone had a similar experience where they started out with standard risk then evolved to high risk by gaining 1q? How has the journey been for you? Did you have a stem cell transplant, how did your disease respond to it (did you have a long remission, or did you relapse quickly)? What maintenance therapy drugs did your doctor put you on as patient with 1q? Have you experienced frequent relapses as a result of gaining 1q? I'm having a stem cell transplant on 5 SEP 2024. If you have 1q and have had a stem cell transplant, I would love to hear about your experiences 🙏

Managing fatigue can be challenging, however, gentle exercise along with health coaching may help improve the symptoms of fatigue. This study is being done to gather information regarding the effectiveness of a mindfulness-based physical activity program with remote monitoring and health coaching in ≥65 year-old specifically for patients suffering from fatigue in multiple myeloma. If you would like to participate, tap the link below: https://healthtree.org/myeloma/community/mayo-clinic-fitness-study

Can someone help me interpret my Myeloma FISH panel

Hi! We're looking for newly diagnosed myeloma patients OR patients on their second line of therapy who have had an autologous stem cell transplant. Compensation will be provided for your time. If you'd like to share your experience, please react to this message or comment 'I'm interested.

Just got put on my 4th round of meds to combat MM. Was put on Cyclophosphamide in June and had extreme fatigue and a bloated stomach, which causes me to get very winded. After 2 months found that I went through all that for nothing. It did not work and my light chains went even higher. Now on Carfilzomib, Pomalyst and Dex. Getting scared and need to do whatever I can to get this under control. What do I need to eat? I suppose it tastes terrible. I'm 75 and have had MM for over 8 years.