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

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.

has anyone taken magnesium glycerinate for nerve pain in back while on pomalyst,dex and dara?

Is there an Android app? Have it on my iPad but don’t see it in Playstore for my Samsung phone.

I am confused about the definition of "Newly Diagnosed Myeloma". Does this mean right after your diagnosis but no treatment yet? Or does it mean when you start your first line of treatment? (I am SMM since 10/2021, high risk 4:14, 2 docs say no treatment yet, which kinda worries me) Please explain definition of newly diagnosed myeloma.

My ABECMA cart T lasted eight months and then I relapsed. I started Teclistamab in August 2023. I have had a loss of taste and appetite , ever since starting treatment Now,I have GI issues. All testing from GI doctor are negative. This is week 6 no solid poop. Am I alone ?

Has anyone gotten their labs to show up in "cue hub"? My labs and health records are linked and downloaded. Still nothing shows

HI All! This is my first post In here because I really don't know what to write! When I was diagnosed in 2018 both of my parents had been deceased for years! What rest of the family one left on both SIDES are about 3-4 aunts an uncles! I have two adult children my daughter who lives with me who was still IN high school i a son who is married who I feel like doesn't support me! He has never been to A chemo appointment nor doc appt, with me!I have A best friend and A out of town Cousin who is also on list of my supporters! I just feel alone! When I reach out to support groups i haven't connected with anyone that I feel wants to keep IN touch, I don't know what's wrong with me that no one cares. I really feel alone! I used to literally my drive self to chemo 1 half hour each way to my Chemo, I Couldnt get a SCT because I did Not have soul who would stay with me for a month 24 hours A day which was Required! This was to me At The TIME life & Death! I think IM STILL harboring hurt, angry1 feelings to the few In my Life who I feel could have don't It mainly my kids....... I just can't get past this.. Why am I not loved enough? My parents never loved me so iguess In used to this.in there for every owe else emotionally & everyway! I down know. But what I do know is how much God loves me cause In I'm remission for five years on revlimin & dex! Thanks for listening!

I am a multiple myeloma patient already recvd 6 cycles of chemo and the lab results are ok. Is it necessary to go for bone marrow transplant by autologous.

I suppose this is more of a basic adulthood question, but I'm moving to a different state. Do I just call up the place I want to receive care at to establish a new doctor and they will get the electronic records transferred from my current myeloma doctor?