I was diagnosed in December 2023 with Smoldering Multiple Myeloma after having chronic bronchitis, kidney failure, and peripheral neuropathy with blood tests, urine tests, and a kidney ultrasound. It was going to be 6 months before I could see the hematologist at the cancer center and I just had surgery in 2022 for a big thyroid/parathyroid tumor hanging out in my throat making it so I couldn't talk or swallow. I was scared and this was War. I started doing research online at the NIH and for books by cancer survivors and what they did. Research in2023 at NIH Complementary Medicine Division showed that Traditional Chinese Medicine and Acupuncture were useful in treatment of cancer. I found a licensed Chinese practitioner in town. So I bought a 20 pack of acupuncture/moxibustion treatment and take a monthly energy and cancer tea. Then, some readings that led my care, Radical Remissions: Surviving Cancer Against All Odds by Kelly Turner Ph.D. and most important, How To Starve Cancer...And Then Kill It With Ferroptosis by Jane McClelland. Her "Stem Cell Metro Map" on p.333 with legend on p.334 really breaks down alternative treatments for any type of cancer, even CML. You can look up your type of cancer in the Index, but I suggest reading the book and her journey. One note, menbendazole is used in the UK and fenbendazole in the US. Anyway, I'm feeling well, my labs show lambas at 26 and no more multilpe myeloma in my bone marrow biopsy! Now I just have mild MGUS.

Is anyone here on the Iberdomide trial? How is it going?

I have been reading articles and medical journals about Multiple Myeloma. In 3 separate studies the patient had weakness in lower extremities; spinal compression; urine retention; constipation and most states they were not diagnosed until they began to have bone pain. My husband had weakness in lower extremities first - walked like he was drunk. He has been on a cane ever since approximately 2.5 years now. We went to our orthopedic doctor who referred us to the spine surgeon, who did an MRI and said he needed surgery right away. He had 7 levels in his cervical/thoracic spine opened up and pins and screws placed. After surgery (October will be 2 years) he began having urine retention to where I had to rush him to the ER because he was in so much pain. They did a prostate biopsy but the doctor came out and said no cancer prostate was a little enlarged but nothing an increase in his Flomax wouldn’t help. He continued to have issues. He would go to the ER they would put a catheter in and he would follow up with urologist 7-10 days to remove the catheter. His urologist referred him to Nephrologist who did a kidney biopsy and a boatload of lab work. 10 days following the labs he called and told him about the Myeloma. A couple weeks following that he called and said the biopsy confirmed the diagnosis. So they set him up with the hematologist/oncologist that he saw a couple weeks ago. He said he wanted a bone marrow biopsy (done), a bunch of labs he will do Monday and then he was to have a PET scan on Monday as well but of course the hospital called and said scan is down and rescheduled to the 19th. So I’m scared to death to say the least because we don’t have a treatment plan. The oncologist said he would like to work on the chronic kidney disease (just diagnosed with that) first to keep him out of dialysis and then he will work on the Myeloma. But I need details. Like is this treatment going to make him weaker and sick and in pain? My other questions are about the doctors who saw him these past 2+ years-was there any way they all could’ve saw this coming? The spine surgeon wouldn’t even come in the room for his 1 year follow up. We see his PA. Like he doesn’t have time for us to tell him that him telling us “this surgery is going to make you feel so much better” was a crock of shit. He got worse. Why didn’t they refer him to another doctor if he didn’t know?? I’m just a scared, very frustrated wife of 35 years. I cannot lose my best friend. I know I posted a lot of photos but this is my family who all depend on their dad/pop. They only know him as being strong and invincible. Can anyone help me to understand what might be getting ready to happen? I would appreciate any feedback/advice.

Hello everyone, My dad is 1 week post ASCT. He’s been home for 3 days now. Stomach cramping & burning became unexpectedly severe in the AM (Protonix & Pepcid help some) , shooting nerve pain in arms when extending and lastly aggregating back pains (previously controlled with Oxy, Robaxin, Gabapentin & Fentanyl patch). -My question is if anyone experienced these side effects after SCT? How long before they improved? And anything that you found helpful with managing besides additional drugs (he’s also trying Zyrtec daily for bone pain? Of note- he lost about 10 lb in hospital and no appetite (which we expect). Labs are trending in right direction after fist follow-up.

I saw my oncologist a few days ago. Also did monthly Darzalex. He said I was showing "no cancer cells". The added image shows what he circled when he said I was showing no cancer cells. It says: Hypoalbuminemia with an increase in alpha-1-globulinsn alpha-2-globulins or both, which is consistent with an acute phase response. No restricted band (m-spike) seen. Anyone know what this means.

13 years on Kyprolis. Has anyone noticed more diarrhea after eating seasoned food? Do u take an Imodium before dining out?

Going onto Pom After induction of DRVd starting in March, an m-spike of 0.1 by October and maintenance of Dara, my m-spike has inched back up to 0.6. Yay me. My specialist and local are putting me on Pom 1mg to tap it back down. For those who’ve been on Rev and then gone onto Pom, is Pom easier to tolerate? Fatigue, nausea, headache, sleep disruption? Is Pom Rash (Pom Pimples? Pom Pox?) a thing? Thanks.

For those of you on Employer Health Plans, Be aware that your rates may be going yuo 7-8% next year according to a study done by Mercer.

Hello. Looking for advice on lower extremity swelling. My wife is currently taking Spironolactone 25mg and it is working. She cannot take Lasix due to an ingredient’s closeness to a sulfa, to which she is allergic. The issue is every night for 3 hours, she has intense pain in her lower extremities. Going to try switching from evening to morning for the medication. Anyone have any advice/experience with this?

For the last 13 cycles I have been taking Velcade, Darcelex, and dexamethasone. My Lambda Light Chains have steadily increased are presently at 75! These drugs are not working! I am totally confused as to which protocols to move forward with! A list of choices are Stem Cell Transplant, Car-t therapy, Bi-Specific antibodies, or a mixture of Carfilzomib, Pomalidomide and Dexamethasone. My goal is to receive the best treatment which will have the longest lasting remission and has the least side-effects.

Hello I recently relapsed 18 months after transplant and I am wondering if anyone has stop taking Dex or just reduced the dosage in their new therapy regiment. Thanks

I recently spoke with a representative from United healthcare/AARP to obtain information about joining a Medigap policy. I currently have Medicare/Medicad A&B coverage along with Part D drug coverage. The agent stated that if I we're to get a policy in New York I would be terminated off the Medicad portion. My 6 month window to purchase with out underwriting is expiring this week. I would appreciate any feedback Thanks

Hello, I am in my 3rd year of remission from MM. My mental health is slowly deteriorating as my husband has had to leave the USA after being here with me under 1yr. He was my sole supporter, assisted with me in every aspect of this journey from shopping, doctor visits and my mental support. I am asking if anyone knows who I can approach to address a letter written to the US Immigration consulate/Jamaican visa office expressing my need to have my husband here with me in the US indefinitely due to my health condition? I have previously submitted a letter from my Oncologist, but that doesn't seem to be sufficient in these times with immigration. I appreciate any suggestions you all may have. Thank you

My wife has MM and we live in Plymouth, MI Is there a Zoom support meeting group?

Hello everyone My husband is considered high risk Multiple Myeloma failed the stem cells transplant this May, I was going through his test and found the Gene testing, I asked Chat GPT to explain in simple terms and he is diagnosed with 17p/TP53 loss, has anyone been diagnosed with 17p/TP53? My oncologist never mentioned or explained it, only she kept on telling me he is high risk Has any one had the CAR T CARVICTY with some good results with 17p? It will help me a lot with your experience. Thank you