Hello and thank you for allowing me to join this very necessary group. First, I want to wish each of you a speedy recovery and I will pray for you daily. On November 16, 2023, my life changed with a cancer diagnosis. I was diagnosed with Multiple Myloma at Stage 1 at the Cleveland Clinic. The big issue with MM is bone pain, especially on the spinal cord. This pain has hit me extremely hard. There are some days I can hardly function because of the pain in the center of my back even with high potent pain medication. I am working with a palliative care who is managing my pain. Now that they have a diagnosis, their treatment will be targeted. I do see an oncologist radiologist this coming Tuesday he will be targeting two of my lesions with radiation; especially the T-8 which is the largest lesion and causing me the most pain. I will also begin Revlimid tomorrow and chemotherapy injections next Friday. I want to say, that my oncologist and his team were very compassionate and informative. I actually felt relieved and confident when leaving the cancer center at the Cleveland Clinic. I was told multiple times that my immune system will be compromised and it is critical to try and maintain a smart style of living. Mask wearing, stay away from large groups, constant handwashing, etc. They also said do not stop living. This will be difficult since I am a big 🤗 hugger, social and love hosting family/friends at our home. I want to close by saying that this group is a blessing and I will visit and comment daily. I want to give my love and thoughts to each of you. I want to say that I am going to beat this cancer’s ass. I want to thank my family and friends for being my biggest cheerleaders. And finally, I want to thank God for walking on my side throughout this process. Trust me, I feel his presence each and everyday. ❤️❤️❤️

Hi, I was wondering if there is a standard for high risk MM after SCT for staying in remission? It seems when I search this up on the internet it is around 2 years and CAR-T even less. Can anyone share what they seem to be hearing/reading as a standard for remission after these procedures? I am in remission now from a SCT at 2 years. Thank you! Kathy

Dear Friends, I was diagnosed with MGUS in 2015, then watch-and-wait light-chain SM, with labs every three months. MGUS was discovered when presenting with skin sensations and balance issues, which have persisted, the balance problems getting worse, so that I now use a walker and cane. Other than old age, 85, the source of the imbalance is a mystery. Brain and ears have been imaged and Parkinson's has been ruled out. My understanding is that smoldering, like MGUS, generally has no physical symptoms. I'm wondering if you have heard otherwise from medical sources and whether you have balance issues that have been attributed to smoldering myeloma. I know I have to live with the mystery (and the falls and near-falls), but I'd love to expose SM as the culprit! Thanks much for reading and responding.

Hi, just wondering what some numbers look like for SMM diagnosed patients on this site. My FLC ratio differs significantly depending on what FLC assay test is used (freelite vs n-latex). Anyhow I am IGG Lambda, my paraprotein is at 20 (2.0), Lambda/kappa 419/9 (freelite assay) or 2020/9 (n-latex assay) and BMB 20%. Do these numbers look similar to those patients diagnosed with SMM? Has anyone else out there had such variations in the FLC ratio numbers based on what blood tests method is used. Babsy (Sydney / Australia)

I am 73 and they keep asking me about Stem Cell Therapy. I had Mesothelioma in 2012, did Chemo and have done well. They told me, I would only live 18 months. So, I was told I am not in the danger zone, so why would I do SCT. I am so confused!! I’ve been praying but, have not gotten an answer. All of this chemo concerns me!! Just venting but, it difficult to talk to my husband about it. One adult child says, do it!! The other one says, I’ll support you whatever you do. I belong to a group on FB who have not done SCT. MM is crazy!! There are so many components and so much to learn. Still venting!!!

I would like to kick off a 'Weekly Win Wednesday' post where we can all share our wins for the previous week. I will add my win in the comments below. All small wins lead to big wins

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.’

It’s Motivation Monday! Share something that helps motivate you through your myeloma journey and more!

This article applies to AL and ATTR Cardiac Amyloidosis. https://www.medscape.com/viewarticle/998193?form=fpf

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 ; )

Happy Thanksgiving!

Happy Thanksgiving to all fellow warriors!

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.

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.

I have had great success with capsaicin cream for pinched nerve pain. It could not believe how it worked John Hill