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Max Bunker
Multiple Myeloma Discussion • March 1, 2023
Coping With Muscle and Rib Pain on RVd?
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Hi, I'm not a patient, but my husband switched from SMM to active MM, and we are entering the 3rd cycle of chemotherapy, March 8, according to the RVd protocol. From side effects, I would single out, in addition to mild neuropathy, pain in the muscles and ribs, currently, which makes it slightly difficult for him to move. Do we have anyone with a similar problem? Thank you and God bless all you brave warriors
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AvaniPatelDC
Multiple Myeloma Discussion • March 1, 2023
My Tips for Starting Movement When It's Hard
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Hi everyone! My name is Avani, I am a chiropractor and personal trainer AND a myeloma warrior! I am excited to share my personal experience along with my professional expertise about so many things related to what we go through with regards to movement and diet. It's Myeloma Awareness month and I see Health Tree has a movement challenge this month and I am going to help out as much as possible with tips. Please ask me your questions, and I will be sharing my own tips and experiences with you all to let you know we are all here for each other. I just downloaded the HealthTree Moves app, too, so I hope to share on there frequently. Tip for the day/week/month: HealthTree is encouraging us to move for 20 mins per day! Having trouble getting your body moving, out of bed, off the couch because your body says "NO" even when your mind says "GO"? I know 20 mins sounds like a lot, but did you know you don't have to do it all at once? Science shows moving in 10 minute increments is very beneficial! Find a friend, neighbor, dog, family member to join you for a walk for just 10 minutes, and try that twice per day to get your 20 minutes in. Someone told me she will schedule a "walk and talk" by phone with her sister because they live in different states. Another great way to have a walking buddy to get you moving! Maybe you can only do 5 minutes to start, that's okay! Take 4 walks for 5 minutes each and you'll get your 20 minutes for the day. Can't walk? Then swim, use a stationary bicycle, or sit in a chair and march your legs and wave your arms around. Too cold or rainy outside to walk? Walk/march in place to music or while watching tv/movies, or turn on music and dance around if you can. Science also shows exercise benefits are CUMULATIVE, which means you can spread out your movement for the day, or week, and still get the same benefits from doing it all at once. I hope to keep up with this community well beyond awareness month. I am one year and 2 months past my stem cell transplant and have made huge progress in the last 4-5 months, but I still have days where I need motivation from others and I KNOW this community is just what I need! Have a great day, everyone!
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lab mouse
Multiple Myeloma Discussion • March 1, 2023
Managing Neuropathy: A Foot Massage Tip
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I developed neuropathy in the induction phase of treatment (bortezomib) preparing for the SCT. Was able to minimize and stabilize the neuropathy in the feet through massage. Rolling the bottom of my foot and toes over a small cork ball and a small wooden roller pin helped to stimulate circulation and has prevented the neuropathy from spreading. I also tried acupuncture but I found that a foot massage was more effective for me and did not require additional meds with unpleasant side effects.
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Jetset01
Multiple Myeloma Discussion • March 1, 2023
Managing Long-Term Burning Mouth on Revlimid?
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Hi I’m from New Zealand and unfortunately we have very few treatment options available.We have one of the lowest drug funding in the OECD.countries.Anyway I have had no taste and what can be described as a burning mouth/tongue for the last 18 months on Revlamid.Just reduced to 5mg to see if that helps.No ulcers or blisters but am using a mouth gel to relieve.Had a SCT March 2021.Has anyone had this side effect for such a long time.Started on 15 mg of Len to begin with.Many Thanks
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Rosee
Multiple Myeloma Discussion • March 1, 2023
Coping With Tingling and Grip Problems
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Tingling toes and fingers are very annoying. Makes it hard to grasp items, turn pages or handle any small items, and am always dropping things. Pressure on fingers and toes helps, but not really useful.
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PattyG347
Multiple Myeloma Discussion • March 1, 2023
Experiencing Low BP on Revlimid and Dex?
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Has anyone experienced low blood pressure while on Revlimid and Dex? I was on two meds for *high* blood pressure but recently my blood pressure dropped dramatically. The doctor has removed one of my meds and my pressure is improving. I am not complaining at all about being able to eliminate one of my meds, it's just strange and sudden. I am on Revlimid and Dex for high-risk SMM. Thanks!
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Taschinka2018
Multiple Myeloma Discussion • March 1, 2023
Fever and Blue Feet - Anyone Else?
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My mother has suddenly fever for ever a week and blue feed. It seems to put her down and as more depressed even though she is taking antidepressants. Does anyone have fevers?
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khakiSheep
Multiple Myeloma Discussion • March 1, 2023
Managing Muscle Cramps On Revlimid?
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Do any of you get muscle cramping from Revlimid? I’m on 10 mg for 21 days with 6 mg of Dex and subcutaneous injection of Daratumumab once a month? If so, is there anything which can be done about the cramping? Thanks.
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DIahanna • Admin
Multiple Myeloma Discussion • March 1, 2023
Finding Financial Help for Myeloma
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When, my husband was diagnosed in 2001 with MGUS and then 5 years later with myeloma, the first two thoughts that came to our mind is what he needed to do to survive this and how much was it going to cost? We were never told about the financial assistance that is readily available to cancer patients and specifically for Myeloma patients. It was only after the fact and many years later that I understood how we could have saved dollars and our savings could have remained intact. Even with good insurance we paid heavily out of pocket. I encourage everyone to ask about the cost of your care, understand your insurance and seek out help before the burden of debt overcomes you. Healthtree for Myeloma offers Financial monthly webinars, financial coaches, newsletter articles, and financial training as well a host of financial resource links for you. Even if you think you're ok, it doesn't hurt to get a second opinion about SSDI, Medicare, ADA, understanding financial resources that are available, and anything financial. Let us help Diahanna Vallentine
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AnneB
Multiple Myeloma Discussion • February 25, 2023
Allergic to IVIG? Sharing Tolerable Options
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I have attempted to have 2 different types of IVIG; Octagam and Gammaguard S/D Less IGA. I had some quick allergic reaction symptoms to them. Has anyone had similar reaction and found another product that was more tolerable? I have been recommended Privigen, as well as adding some pre treatment meds. Thanks for the help. Anne
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MonicaV
Multiple Myeloma Discussion • February 25, 2023
Combining Zometa & IVIG: Pros & Cons?
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I'm considering having Zometa and IVIG at the same appt. Can someone share the pros and cons of Zometa and IVIG being at the same appt. Travel is not an issue.
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Susanb
Multiple Myeloma Discussion • February 22, 2023
Managing the Wait for CAR-T: Tips?
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I am getting ready for my diagnostics and cell collection at MDAnderson week of March 7. What restrictions or suggestions does patient have for the 5-6 weeks wait when T cells are being processed? I am feeling both excited and anxious about the whole Car-t treatment.