You might want to make a clarification here. Are you looking for info from any survivors or just multiple myeloma survivors?
Multiple Myeloma Questions
- Questions Emailed to WhatNext
Multiple myeloma, how did you survive?
Asked by WhatNextEmails on Monday, March 11, 2013
Multiple myeloma, how did you survive?
We need your help. This month we are putting together a collection of articles for those newly diagnosed on what actions survivors took to beat their specific type of cancer. Please take a few minutes to share your experiences and advice for those newly diagnosed, and your posts might just get included in our articles. Feel free to share whatever comes to mind. Here are some more specific questions to help get the juices going: What kind of support did you have? Were there things you did that really made a difference? How do you go about finding your medical care team? Who made up your team? What resources did you find that were most helpful to you?
4 Answers from the Community
I tried to stay positive. My faith in God sustained me. I knew that as His child I would be fine . I didn't know what the journey would be like, but I knew that He would be with me every step of the way. He still is. Because of my faith, I was able to look forward and I just believed that it would be ok.
I also had a tremendous support system with family, church and work.
I was diagnosed with MM in August of 2011. I had had a back ache for 7 months which my orthopedic dr. felt was muscular so was treated with muscle relaxers, pain pills and physical therapy. The extreme pain would kind of come and go until finally I decided I needed to see their spine specialist. I was working out alot during most of this time at our local hospital gym and was very active outdoors, boating, kayaking. By the time I went to the spine dr. she did xrays and found 5 compression fractures in my spine. She knew something was going on so ordered an MRI when the myeloma was found. Sent immediately to my oncologist who began velcade and zometa. She also made an appointment at UNC Cancer hospital to see the Stem Cell Transplant Dr. I was treated weekly with Velcade for 4 months, reached a plateau and then was treat with velcade and revlimid for 4 months until my levels were at the optimum point to do the SCT which was done on June 1. After two weeks in the hospital and one week in a near by Ronald McDonald type facility for adults, I went home. In Nov. I started a maintenance dose of 10 mg Revlimid and so far seem to be doing fine, just tired alot due to the pain meds i have to take for my severe back pain from the fractures and the Revlimid. I had balloon kyphoplasty two months after my diagnosis on two of the fractures but lost the window of opportunity to do anymore since I got shingles.
What has really helped me a lot is keeping a positive attitude, continuing to work with the wonderful support of the church where I am the Church Administrator, wonderful friends and my 3 adult children who have been there for every dr appointment, chemo treatment, hospital/facility stay, and becoming the caretakers of my house. I also have fantastic friends who took turns coming to stay with me for a month after I came home from the hospital since I live with my 93 year old mother who could not be my caretaker. My two college roommates each came and stayed with me for a week, I have been friends with them both for 46 years and that meant the world to me. It for sure has not been an easy road, but with this support it was certainly easier.
My local oncologist was wonderful, very straight forward and her team was very supportive and responsive. The chemo clinic nurses were the most compassionate and caring medical professionals I have ever encountered. The SCT team were wonderful, the Dr. spent as much time with me as I needed, answered every question and is still being supportive and communicative. If I have a question I just email the administrative nurse who either answers the question or passes it on to my Doctor. She has been very kind and supportive and we get along very well as she has been appreciative of my attitude towards my myeloma. I just feel it is what it is, I have it, and I just have to keep the positive attitude for my kids and myself. Being depressed and morose will not help me nor them get thru this. Now, on top of my issues my kids have to deal with my ex husband who has been diagnosed with stage 4 pancreatic cancer. I worry so much about them, it has been a bit depressing, but I have to be supportive of him and them thru the next months.
As for resources, the chemo center here has alot of info but UNC Cancer Hospital has extensive support. I even was able to get after the transplant free hats, scarves and a wig from their family care center. My older son (my official caregiver) and I joined the myeloma association and have gotten alot of info from them plus several of these web sites for cancer patients.
I was just diagnosed two months ago with multiple myeloma and have been through one month of treatment. I too was being treated for a back problem due to a fall at work on a wet floor. When the chiropractor seemed to be doing more damage, I went to my primary doctor and the x-ray showed just enough of my problem area to alert the doctor. I'm taking this one day at a time. The hardest part is trying to continue to work when some days I would like to sleep all day.
I have gotten a lot out of reading your answers, know what to expect, see some of my symptoms listed and now know they are coming from the medication and fractures. Thanks for the support. Lovs2knit