Multiple Myeloma: Come introduce yourself and let's talk

Hello @packgb19. I'd like to add my welcome to @jcather's. You may also notice I moved your discussion and combined it with an existing discussion of the same title. I did this so you could meet many of the other members who have posted about living with Multiple Myeloma here on Connect so they could have a chance to see your message and help answer questions and so you could also read through some of their posts as well. If you are replying by email, you can simply click on VIEW & REPLY to see where the post now is and to read through some of the previous posts.

@packgb19, if you are comfortable sharing, were you recently diagnosed with multiple myeloma? Do you have specific concerns you'd like to ask the community?

Does anyone here know some with Multiple Myeloma?

I just spent a half hour posting a reply and was disconnected so I’ll try again. I have MM stage 3. I had just climbed to the base amp of Mt. Everest, 17,600 ft. in September 2018. I was slicing up logs on Nov.1st, 2018 and heard a couple vertebrae pop. I saw a chiropractor who fractured 3 ribs. On Dec. 21st 2018 I was put in the hospital for Kidney Failure only functioning at 6%. Clogged up with the Calcium that my cancer had eaten lesions in my vertebrae. I had a Blood transfusion and Dialysis. I could only walk with a walker. I did Dialysis 3 times a week for all of Jan. 2019. I was lucky that my Kidneys began working again! I then went through 3 cycles of Chemo Therapy. The first couple of cycles were Velcade, Cytoxan, and Dexamethasone. I was lucky to get a grant from the Revlimid Company and did a cycle of; Carfilzameb, Revlimid and Dexamethasone. Aurora could only get the bone cancer to about 40%. By the way, the Celgene Co. charges $18,000 a month for 21pills. Three weeks on of one Revlimid pill and a week off. Lucky I got a year grant! I’ve had 12 fractures in my upper spine an shrunk about 2 inches. The fractures started healing up. I then switched to Froedtert Hospital, Milwaukee, to get a second opinion. They told me about Kyphoplasty and Vertebroplasty. I had the cement put in the L2 vertebrae and immediately got off the Oxycodone every 3 hours. Still on the 125mcg/hr Fentanyl patches. I had a Stem Cell Transplant in July 2019. Got out in 2 weeks and a day. Shortest stay possible for an inpatient Transplant. A rough recovery especially for the first weeks. I still pushed my self to walk a mile of laps every day except for the first 2 days. Now I’m down to only 5% cancer and they give me about 3 more years. I’ve had gene deletions of 17 P before the Stem Cell Transplant. After, they’re seeing 1Q gene deletions. I’ve gained back 5 lbs. of the 20 I lost. Now I’m about 140 lbs and trying to get some muscle back. Thank god for the technology and drugs available. I’m ready to take a vacation! Larry

I was on Velcade for 4 cycles, with Rev. 14 days on/7 days off. And DeX 40 mg/week. I had terrible neuropathy in hands and feet, the 1st week, and a rash to lower legs and feet, and some high fever for like three days, in the evenings. The 2nd week, my Hematologist held the Velcade, and continued it again on the 3rd week, at the same dose, so I was told. Had less neuropathy, no rash, and no more fevers from it. Was told, my body went into shock during induction. I recieved it in very slow sub Q injections, once a week. The injection sites would be red, then turn brown, and scaly, then resolve.

I am glad to hear that slower is working better for you. Less side effects means being able to stay the course. Prayers are with you.

Hello All

A Youtube video was recently released by Mayo Clinic regarding Multiple Myeloma and the disease progression. I was wondering if any of you had any early symptoms of this disease before the diagnosis came about. After looking at this video will you share your experience of being diagnosed?

Hi Nancy, my mum was diagnosed SMM. Noticed that your treatment started after 12 years of diagnosis. Would you please tell me why the doctor started treatment after 12years? Thank you

Mum was recently diagnosed after a compression fracture on her spine after a fall.

Thanks for sharing that information, @blessing19. How is she being treated now that she has this diagnosis?

She does not have any treatment now. Her K/L ratio is 50. IgA is 22, upper limit is 4. Her blood calcium is borderline. BMB shows 26% of abnormal cells. No other symptoms. Local Doc wants to wait and watch. I really want to get a second opinion at Mayo. But mum can’t travel now due to fracture. We live in Australia.