Hello, I've recently developed an allergic reaction (severe itching) to venetoclax, which I'm taking for maintenance therapy. As a result, I'm looking to change my maintenance therapy, and would like to know what other maintenance therapy options are there. Revlimid wasn't effective for me during induction therapy, so I can't do the usual revlimid/dex/dara for maintenance. Could you please let me know what your maintenance therapy is, how long you've been on it, and if any adverse side effects you've experienced with it? thank you 🙏

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Your state may allow financial grants that help cover out of pocket costs such as copays co-insurance, deductible apply to your max out of pocket. Check with your State Health Insurance program for more information

Concerns about Social Security changes are mounting. Before you rush to take Social Security prior to Full retirement age, check to see how that will impact you fand possibly your spouse financially. Once you make a determination they may be impossible to go back and change. If you have questions on this please request me as a coach c=via the coach website.

Hello everyone! This is my first post on this platform. As a 66 year old MM survivor who was diagnosed in 2013 and who is gratefully thriving today, I just want to say a word about exercise and encourage you to stay physically active. I realize that some of us have had severe bone/skeletal issues and are limited as far as physical activity - but if your skeletal frame is stable enough for normal, daily activity, I want to recommend weight-bearing and strength training exercise. When diagnosed, 80% of my bone marrow was displaced by malignant plasma cells, my kidneys were severely damaged, and I had scattered lyric lesions throughout my skeletal frame. With treatment, bone deterioration stopped and things stabilized. As soon as I regained some energy I began to diligently strength train, first at home with body weight exercises, and then at a gym with weights. What benefits have I seen as a result? - Resistance training builds bone mass. My bones are stronger now. - Increased muscle mass. Muscles serve to stabilize the skeletal frame and protect bones and joints - all the more important as we age. - Increased muscle mass boosts metabolism and results in more energy. Fatigue is a frequent complaint of MM patients and exercise improves energy levels. - Resistance training boosts the immune system. - Resistance training is one of the best ways to manage weight. Excess weight puts strain on the body in a variety of ways - joints, cardiovascular system, and respiratory system. Resistance training burns more calories over a longer period of time than simply walking or running. I travel internationally for work, to some very difficult places (going to Sudan next week), and regular exercise has been a key to maintaining my health and stamina, even while doing monthly maintenance chemo to keep the myeloma in check. I encourage you to get active, stay active, and build strength! I’m happy to respond to questions about this post. Wishing everyone the best!

I will be posting in the Financial Connect site up to date information about current status around the New Administrations possible changes to a number of issues, such as Medicare, Medicaid, ACA, SSDI, etc.

I am in need of a stem cell transplant but found out recently that I have a hip that needs to be replaced. I need a cane to walk and use a wheelchair if I'm traveling any distance. Does anyone know of someone who's had a ASCT in this condition?

Does anyone know if people who are over 65 years old and in a wheelchair can be a viable candidate for an allogenic stem cell transplant?

Be aware there will be some changes coming to Social Security. Many employees with the social security administration are being laid off from an already short staff. The average wait times for application processing was 255 days and will now be pushed out much further. There is a 1.2 million app backlog. If you need to put in an application, my suggestion would be to consider hiring a Disability attorney to make sure your application is complete the first time to reduce even further delays. Also, if you are not working du to a disability, contact cms.org - Center for Medicare, and see if you can get started on Medicaid and SSI, Social Security Supplemental Income. Doing it sooner than later may be a better option.

While many of you post with your experiences or seek advise about your situation, i feel its quite difficult for the people to correlate your situation clearly. To give a better knowledge of your situation, I feel, you could add your age, gender, etc. and some disease Diagnostic history to your profile under About Me section. That way, people can have more clarity on your demographics and disease state to give better advice or support. Do you all agree? Or am I expecting something too much?

Hello, I was diagnosed with MM about 4 years ago with translocation 4;14. I recently relapsed after 6 months post Carvykti Car-T where they found 17p deletion as well as 1q gain. I am quite concerned about all these high risk cytogenics and was wondering if there was anyone out there with similar profiles and what your treatment/myeloma journey has been like. Thank you!

I just finished all my 90 day post transplant testing. I see the doctor next week, but have access online to some of my results already. Anyone have an echocardiogram that shows pleural effusion? I compared it to my pre transplant echo 4 months ago and there was no mention of it. I had an autologous transplant with Melphalan given two days prior to it. Just wondering if it’s cause for concern. No trouble breathing or shortness of breath. Thanks