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Carol M
Multiple Myeloma Discussion • November 28, 2023
Treatments for CNS Myeloma? Seeking Urgent Ideas
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I have a friend in Boston who was diagnosed in 2011 the same year as me. She just sent me a desperate note regarding MM in her Central Nervous System. Does anyone have ANY thoughts on this? Here is her note: ….’my myeloma went up into my central nervous system in Sept. They put a shunt in my brain so it keeps it out of the brain but it’s gotten into my spine so now I can’t walk again. :( I’m starting radiation today. We’ve tried Teclusimab but it won’t go after central nervous system. We are going to try one. Last goodie called Talvey . ….. Do your Healthtree peers know of any new ones that are working on CNS central nervous system involvement? I have to figure it out within the next few days as everything moving fast. Car T worked awesome on the blood… But not on the central nervous system.’
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LeslieR-G
Multiple Myeloma Discussion • November 23, 2023
Our Positive Spine Surgery & Recovery Story
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Update to Matt G's back surgery! Hello friends. I wanted to update those who offered comments on my husband's post in July. (MattG, General Discussion, July 16) No better time than today as we have much to be thankful for. The surgery - L5-S1 decompression and fusion - was Nov. 8. Surgery was successful! We just attended Matt's 2-wk post-surgery appt yesterday. As of today, Matt's pain has come down from pre-surgery 7s, 8s & 9s (and after-surgery 10s) to pain level of 4! that's reason to celebrate. the most pain relief in 6+ months, maybe a year. A couple of things to note for those interested: the procedure required anterior and posterior surgery. it lasted about 4 hrs. the surgery was done by a Cedars-Sinai spine surgeon who happened to be the 5th opinion! (We had originally agreed to surgery with a spine surgeon who left us feeling uncomfortable after every meeting. he had been referred by a specialist so we thought we should stick with him. but after the last visit with him, both of us - me, his wife and caregiver, and Matt - left feeling completely upset. he didn't answer our questions fully, we felt rushed, he was gruff, his surgery coordinator was dropping the ball. We said No! this doesn't feel right.) The point is: we went to one last surgeon and bingo! we knew right away he was the one. never ignore your gut! besides being experienced, professional, courteous, and kind, his approach and resources made for a slightly less invasive surgery (robotics, smaller incisions). He used a synthetic BMP instead of host or donated. They placed 4 screws and spacer from the front and 4 screws in the back, including 2 in broken pedicles. Bonus: the decompression and spacer gave Matt back 1/2" in height. Preliminary findings on the condition of the spine, according to the surgeon right after surgery, is "not bad." We'll know more at the 6wk follow-up appt and subsequent imaging. full fusion could take up to 1 year. The first 2 weeks have been pain management and limited mobility. He's been up and walking since day 2 at the hospital. started off as a few excruciating steps. now he's doing laps in the house and getting his strength back. tomorrow we venture outside! : ) Yesterday at the 2wk appt, the P.A. said Matt can start doing more daily personal care activities on his own. still no twisting or lifting or carrying, but they say he can now do a little bending. shocking to me! I've been treating him like glass, afraid for him to bend his spine. but they said he's "not going to break anything" so just go slowly and use judgement based on pain and tightness. (holy moly! this is a long post!) I wanted to say that we were scared at first. we had been told by doctors that the spine imaging showed mottling from the myeloma. we were scared the bones were to weak to hold the pins. but that doesn't seem to be the case. the outlook is good! and we can breathe. As we go forward, I'm going to remind myself to expect the best outcome! (sometimes drs give us scary information; they're not always right. and the body is truly remarkable at recovering!) On this day of thankfulness, I wanted to say we appreciated your support and comments on Matt's original inquiry. (Sorry i don't know how to write a short post.) Love to you All. (and good job Matt! you made it through! AGAIN!) Myeloma community - you're a strong bunch! signed -relieved wife and tired but thankful caregiver ; )
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Qunbin
Multiple Myeloma Discussion • November 23, 2023
Happy Thanksgiving!
Happy Thanksgiving!
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Stevonmfl
Multiple Myeloma Discussion • November 23, 2023
Considering CAR-T: Weighing Side Effects vs. Benefits
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I am ultra hi-risk smoldering MM w/1q21, 1q22 and q32 so I'm going to become active sooner than later. On list for clinical trial using Car-t at Dana Farber as a first and last resort. Right now I get daytime bouts of weakness and being unsteady and already have neuropathy but mostly under control. At 74 years old, I just want to live a few more years in a somewhat normal fashion but am just as afraid of Car T side effects as I am the disease and wonder if better off just not doing Car T.
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rudiflik
Multiple Myeloma Discussion • November 22, 2023
Managing Canker Sores & Jaw Pain - Tips?
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Happy Thanksgiving to all. I am in my 8th week with Darzalex, Pomalyst and Dex. All good so far, but now I am dealing with canker sores and jaw pain. If anyone has similar experiences and divulge what remedies to take would be much appreciated.
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emeraldOyster
Multiple Myeloma Discussion • November 21, 2023
Getting Kaiser to Cover an Outside Specialist?
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Is anyone with Kaiser and been successful in getting them to cover you to see an outside Multiple Myeloma Specialist? I am in Northern California and though they have malignant hematologists, there is no-one who specializes in just myeloma. The only way I might get it covered is to convince them that I need something they cannot offer. Does anyone know a source that says a doctor must see 50 or more MM patients a year to be considered a specialist? MM is such a complex disease - I feel strongly that a MM specialist is needed to help us with the best treatment and outcomes. Any other thoughts to help support my case are appreciated. Thanks.