I began treatments July 2021 And have gone through several. I'm currently on DAX Moving from every week , to 2 weeks, now Coming up to once a month. I know you move to different treatments when one stops. I don't plan on continuing treatments When this 1 no longer works. My specialist says if I stop treatments he will no longer see me. QUESTION: Has anyone Heard of this? My oncologist Whom I take treatments from says he'll still see me. I'm just tired of the treatments. And excited to see what God Will do. Either way I win. If God takes me home to be with Him or if I stay. I'm just tired of putting this stuff in my body. And it's side effects. Even though this treatment doesn't seem as bad as others. Thank you all

Hi everyone! I am new here and live in the United Kingdom (London). I was first diagnosed with multiple myeloma in 2016, went into remission after chemotherapy and transplant but now relapsed and back to chemotherapy again. Unfortunately, this is not working well for me now as my very low platelets blood 🩸 is disturbing the process. As at now my platelets count is below 30 and my consultant does not want to continue the chemotherapy when is below 24. The normal platelets count of a normal human being is supposed to be: 1500-4500. You can see that this number of mine is with great concern. Traditionally, I have a history of low platelets. To cloth during bleeding is just not there and I fear this could even send blood to my brain and have stroke. Platelets transfusion was done ones but only pushed it up by 13 points and went back low the next week. Can any one help me?

Has anyone had a hip replacement? Did you ask for a ClonoSEQ test be performed on the hip joint that was removed? Any advice or suggestions regarding the pre and post surgery, recuperation?Coordination of maintenance treatment and taking Xgeva? Thanks!

Hi everyone, I am new here and about to start RVD. I would like to know if you take Revlimid in the morning or at night and does the time of day matter?

A bit confused. Recently went through CAR-T, with no response. It did not work. It seemed like a perfect solution. I am Extramedullary, and NonSecretory. My numbers were stable and low. After CAR-T my kidney numbers started to drop. PET CT, MRI showed plasmacytomas surrounding both kidneys and Adrenal glands. 2 a day radiation for 4 days helped this issue. In the mean time my Myeloma numbers started to climb. After some recovery from radiation I am on Elotuzumab, Pomalidomide and Dex. I have no idea if i am still Nonsecretory, just trying to get in a better place. Anyone else have similar characteristics.

Fred Hutch wants to know if they should keep storing my stem cells or if they should be moved elsewhere or discarded. I don’t suppose they’re still viable after nearly 19 years in the freezer. But I’m wondering if they would be of any use for research or anything. Any thoughts?

The HealthTree Moves Columbus 5K and 1 mile event is open for registration. This will be a virtual and an in person event so don't let distance discourage you from registering. Click on the link below for more information. Feel free to PM me if you have any questions or concerns Also, please send me an email if you would like to volunteer for the event. michelle@healthtree.org https://www.facebook.com/events/1274031416532390/?acontext=%7B%22event_action_history%22%3A[%7B%22mechanism%22%3A%22your_upcoming_events_unit%22%2C%22surface%22%3A%22bookmark%22%7D]%2C%22ref_notif_type%22%3Anull%7D

Hi, I am a high risk MGUS/BGUS patient who undergoing a partial total knee replacement in 2 weeks. Is there any standard protocol for salvaging the marrow &/or aspirate from the reaming of the femur or tibia for onncological analysis? Thanks, Peter

Specialty pharmacy delays delivering drugs: I have not had a RX refill delivered on time since last September 2022. I take Revlimid (lenalidomide) and Ninlaro. Both must be ordered through a specialty pharmacy and shipped to me. I've used 3 different specialty pharmacies. The first, Kroger, was the best, but fell out of network for Revlimid. Accredo was recommended and was by far the worst. One delay was 4 weeks with every excuse used to explain the delay. Every order was delayed significantly from October 2022, through January 2023. I worked with my physician's office to change to CVS. So far, with two refills, both have been delayed a day or two due to CVS issues processing the refill. My current refill is delayed due to CVS requiring payment of the co-pay in advance to ship. That is fine. My credit card has been on file with CVS for payment of the co-pay ($1474.39)! Does anyone have a good experience with their specialty pharmacy? Do you receive medications, especially Revlimid, on time?

I hope everyone is finding a way to move their body each day this month for the challenge. If you don't get 20 mins per day, then just aim for whatever your body can do on a given day! It's okay if you're not at 20 mins every day yet. I was barely there a year ago. I was happy if I could get out of bed, walk to the living room, and park myself on the couch for the day watching tv instead of laying in bed all day! Or sitting the front or back yard in the sun for 10-45 mins to get fresh air, sunshine and not be stuck inside while recovering. I have been doing a lot for this challenge (and with work) since the 1st of the month and feel tired now. Yesterday was my "rest" day from doing extra exercise. I spent about 1-2 hours cooking and cleaning, and about an hour standing around while with a personal training client. That was enough for me since I was tired, and my back was sore because I pulled something almost a week ago - it's healing up slowly but surely. I had to lie down and stretch, which was not easy to do, yesterday after standing just over an hour in the kitchen making food for the week. Today, I played a couple of games of softball which felt difficult today. My body felt slow and weak, back still sore, but it got me out and exercising. I love to play and am so happy I am able to do that again. It gets me moving and allows me to be around my friends again after everything I have been through. It's the thing that brings me so much joy, and aside from the usual "living for my family" cliches, it was the one thing that if I was not going to be able to do it again, or be active in any way, I would not have wanted to keep living. So I guess for me, personally, being able to play softball again was my reason for living. And here I am, playing softball 4 days per week! And starting flag football for a second season! I am going to enjoy being able to move my body this much while I can now that I have experienced how easily I could lose it! Some days are harder than others, but I won't stop yet. I'm just getting started!

Hello! I am newly diagnosed with MM. I am 66 and live in Bend Oregon. It was discovered after my Kidney's were in failure and I ended up in the Hospital for 5 days in early January. This led to many appointment and lab work to determine the cause. Just have a full MRI and they found proof of MM. Also had a Bone Marrow Biopsy but waiting on results. Now trying to find a specialist in my area to start the treatment process. Thanks for listening to my story!

Hi all, my Mum 74, is possibly heading in for a transplant in April/May. Its been a very fraught and challenging decision to make for us for a variety of reasons, but the 3 big ones are 1. Here in India transplants in patients her age is virtually unheard of and all the specialists we consulted with were largely discouraging. 2. We will have to travel to the US for the transplant which just adds to all the anxiety and its very difficult to feel "ready" for something that is so FAR away both in terms of actual distance but also in that the reality of it is not HERE. And while she is baseline eligible she still needs the more comprehensive evaluation to know if we should/could go ahead. 3. She hasnt been able to connect to a lot of other MM folks her age and who have gone through transplant around her age. We've been able to talk to 2-3 folks but I think to her thats not been enough to build her confidence. I think what she needs is to be able to see herself in someone else and see that if they got through it so can I. I'd really really love for her to be able to talk to more people who are on the other side of this who can give her an honest take on what their experience was like, good bad ugly so she knows what she has to prepare herself for from people who got through it! So we can embark on this fully ready!

Hi all, my Mum 74, is possibly heading in for a transplant in April/May. Its been a very fraught and challenging decision to make for us for a variety of reasons, but the 3 big ones are 1. Here in India transplants in patients her age is virtually unheard of and all the specialists we consulted with were largely discouraging. 2. We will have to travel to the US for the transplant which just adds to all the anxiety and its very difficult to feel "ready" for something that is so FAR away both in terms of actual distance but also in that the reality of it is not HERE. And while she is baseline eligible she still needs the more comprehensive evaluation to know if we should/could go ahead. 3. She hasnt been able to connect to a lot of other MM folks her age and who have gone through transplant around her age. We've been able to talk to 2-3 folks but I think to her thats not been enough to build her confidence. I think what she needs is to be able to see herself in someone else and see that if they got through it so can I. I'd really really love for her to be able to talk to more people who are on the other side of this who can give her an honest take on what their experience was like, good bad ugly so she knows what she has to prepare herself for from people who got through it! So we can embark on this fully ready!