Hi! I am looking for a coach ! I'm told I'm in the smoldering phase and I have some pains now here and there after being diagnosed since 2016. I'm meeting today regarding receiving training on new medication to help with some numbers that have changed that should help me with this. I'm needing someone who is familiar with the smoldering phase as well as what symptoms am I to look for for the MM. I'm really in need of someone eho can share their experiences with the beginning of this. My body aches and I don't know if it is arthritis which I have been told for years the pain in my back was or if its the MM. As per my questions you can see I'm all over the place 😵‍💫🤗

Has sweating , particularly from the head, been seen as a concern for a multiple myeloma patient as a part of the therapies? My father has just finished his first cycle of KPd. Thanks

Hello everyone. The CDC (see below) states that immunocompromised people can get the Covid vaccine after a 2 month interval (as I interpret this). I have a lot of international travel this year so the thought of getting a booster/vaccine early is appealing. I see CVS is requiring just a 2 month interval when scheduling.. Has anyone reduced the amount of time between your Covid vaccines to less than 6 months? Was your physician supportive (I’m still trying to connect with mine)? “For persons aged 6 months who are immunocompromised, the recommended interval of the second dose is 6 months but can be as early as 2 months or later than 6 months after the first dose of 2024–2025 COVID-19 vaccine.” Thanks!!!

Any one have experience with Gamunex-C as IVIG med? when I read about it I do not see much information on immunity. It takes a lot about use with ICID which evidently has polyneuropathy as a symptom. I am wondering if this could help with my neuropathy

I have been receiving Darzalex Faspro since the beginning of November 2024. I am currently receiving it every 2 weeks. I experienced awful bruising with my last shot. I have not had bruising with past shots. Does anyone have a possible explanation as to why I bruised so bad? or experienced this happening to them? Was it possibly the way it was administered? Thank you.

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.