I am a IGG kappa patient , aged 69 , active , and pretty healthy other than MM I have t 11:14, and I am under the care of an amazing MM specialist in Toronto, Canada Started induction in March this year, on DRD. I elected not to take V due to already having some foot neuropathy. I had MGUS for nine years and SMM for 2 , so had plenty of time to read and learn and research. Knowing my own body well , and my co - morbidities , I decided against having a SCT. There is no guarantee it will definitely give me a long or lasting remission, it’s not an easy process or recovery for many , and it does not mean I will survive longer , necessarily. My caregiver is my 71 year old husband , who , I know is finding this diagnosis difficult, and may not cope with a long recovery on my part , and who also has his own potentially serious health issues. Even if you decide on a SCT , the chances are you will still stay on maintenance drugs , so what’s the point ? You also up your risk of secondary cancers with high dose Melphlan , even more than just on Rev alone. I start maintenance this month , and am so happy to have the Dex gone ! I generally feel well and manage my side - effects without much trouble , generally. Doses can always be reduced / changed etc I believe new and improved treatments are fast emerging in myeloma , and there will be more options to keep us going down the line , hopefully. SCT, in the near future, May no longer be the standard of care for most. All the above is just MY opinion , and of course your decision is very personal , taking all your own factors and your doctor’s recommendations into consideration- and your own gut feeling. My best wishes , going forward, whatever you decide

Can either Zometa or Rev irritate areas in the joints or bone where previous surgery has occurred?

Hello. This last week I found out I was positive for amyloidosis lambda light chain. I was dx in 2023 with SMM but had progressive neuropathy , CTS, autonomic dysfunction and afib and junctional rhythm. After three biopsies they finally found it. Starting on Dara + Cybord on Thursday. If any one could tell me if they have this and how they did with this regime? Thank you.

12 years ago I'd never heard of MM. My beloved Wife died after fighting this disease so heroically for all those years. This year, I also learned that, a member of the Royal family whose Coronation I attended in 1953 sitting on my father's shoulders above the crowds, also had a chance to shine a light on this terrible affliction but chose not to. A huge opportunity missed, I feel.

I am a year and a half post transplant and on maintenance Pomalyst. I have a lot of problems with my skin especially my face with it scaling up and peeling. When I am on my off week it seems to get better. Does anybody have any suggestions for creams, etc that might help with this.

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.

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.