Patient Comments: Multiple Myeloma - Prognosis

Question:

What is the prognosis for your multiple myeloma? Submit Your Comment

Comment from: Linda W, 65-74 Female (Patient) Published: September 04

I was diagnosed with multiple myeloma in December of 2011. After chemotherapy, I had a stem cell transplant in June of 2012. I nearly died after it due to infection in the lesions in my spine. I have to walk with a walker due to the spinal surgeries for the infection. Since then, I have done very well and am now in complete remission. I will stay on chemotherapy (Velcade) for the remainder of my life. I am very elated to be in remission and the Velcade treatments every other week are certainly worth it.

Comment from: Doug, 55-64 Male (Patient) Published: June 04

I found out 20 months ago that I have multiple myeloma (MM). Wait and see stage lasted 17 months. MM started progressing and I started chemotherapy treatment on March 2 2018. I had four cycles and then stem cell replacement. Not sure if I want to go through with that after reading all these stories. Sounds like you may get worse instead of better. I was stage 1 with high risk or not a favorable prognosis, in two areas. My blood totals are going down with chemotherapy but I am not in remission. I will finish cycle four in three weeks. My doctors are great but I will ask lots of questions before final decision on stem cell transplantation.

Comment from: charlie, 65-74 Male (Caregiver) Published: November 10

My husband has had multiple myeloma for ten years. He has tumors down his spine, and now cancers are coming out all over his body that need to be cut out nearly every week. He has had two stem cell transplants and neither worked. He is currently one Revlimid, and dexamethasone plus heavy drugs for the pain which is awful.

Comment from: Sarah, 55-64 Female (Caregiver) Published: August 26

My mum is going through her 10th year of multiple myeloma. This past year she has been in and out of hospital close to 4 or 5 times and we have just been informed we have run out of options. They have given her 6 months. We have tried nearly every drug on offer but there has to be something else.

Comment from: Lil Deb, 55-64 Female (Caregiver) Published: August 15

My husband has been battling multiple myeloma for 5 years. The doctor said she's going to try to get him 5 years. He has had 2 bone marrow transplants, now he just finished radiation and the results from that was not working; it still looks the same, it's still there. Now they are going to try more chemotherapy again. It's a downward battle. I need to know the whole truth and what is next.

Comment from: Candy, 65-74 Female (Patient) Published: August 03

My ALT in my liver blood test result is 85.

Comment from: mitch from england, 55-64 Male (Patient) Published: May 29

I was diagnosed with multiple myeloma in May 2016, I am 56. I went through chemotherapy and a stem cell transplant in November 2016 and was unfit for work for 6 months. I was just so tired. Two years later I am on no medication and visit the hospital every three months for checkups. I am working and have a very physical job. My blood levels have now been stable for over a year. The treatment I had resulted in damage to my nerves in my feet but I take tablets for that. I still get tired and have a daily sleep for an hour. I can't run very well and my legs and back ache if I sit or stand too long. Other than that I'm ok. I hope it doesn't return. Take care all.

Comment from: 1224, 13-18 Female (Caregiver) Published: September 21

My best friend's sister who is 12 has been diagnosed with multiple myeloma and she has been given 5 years.

Comment from: Husband and father, 65-74 Male (Caregiver) Published: September 03

My husband was diagnosed with multiple myeloma in 2011 and received his first stem cell transplant. He was in remission for 2 short years. When it came back he developed spinal cord tumors causing permanent damage. In two short weeks he went from walking to wheelchair. He had a 2nd stem cell transplant and we are hoping this one lasts a little longer. A year ago we didn't think he would see our youngest graduate from college, now it looks like he may get the chance to see her graduate with her masters.

Comment from: cesar.2, 65-74 Male (Caregiver) Published: October 03

My husband was diagnosed in 2011 with multiple myeloma. His first presenting symptoms were fractured rib and back pain. After numerous tests, x-ray and MRI, he had bone marrow biopsy and we had his diagnosis. We struggled through chemotherapy for 6 months including pneumonia. He had a stem cell transplant in 2012, and his remission lasted 1.5 years. He has had a terrible 10 months. He started chemotherapy again but developed arteriovenous malformation (AVM) in colon, had bleeding issues which have resulted in 30 plus units of blood. His oncologist suggested in-house chemotherapy, which he had 3 individual times. His m-spike got down to 0.1 and we decided to try for stem cell again. Since they didn't get enough for 2 the first time he had to try again. Long story short-yesterday we found out due to all the chemotherapy his bone marrow is not making enough stem cells. So we go home disappointed I n tears and hope is slowly circling the drain. We have been told there are other treatments and we have an appointment with his oncologist soon. Please, if you are going through stem cell, make sure they get enough for at least 2. Maybe if we had insisted they keep trying to get enough for 2 he wouldn't be in this fix.

QUESTION

What is multiple myeloma? See Answer
Comment from: love u dad, 55-64 Male (Caregiver) Published: April 25

My dad is 56 with multiple myeloma (MM) stage 2. He had his first stem cell 9 months after we found out. We were told it should last about 10 years only lasted 1.5 years. He had a second stem cell done about a year after, he keeps breaking and fracturing bones and now they have given him a painful year to live. I have read a lot of positive things on this site however this cancer is terrible, with a nasty ending.

Comment from: Tricia, 75 or over Male (Caregiver) Published: January 14

My 90 year old dad has multiple myeloma. He has had 2 kyphoplasty surgeries for broken leg. Rehab helped with all this, plus home health. He is now what I call in remission. He can go to doctor visits and walk on his walker. He has had myeloma over 5 years. My Dad's attitude has helped him. He loves life and is very happy, telling jokes and loving the great grandkids! Has very little pain now. He is not doing any treatments. He does have Procrit shots as needed.

Comment from: Becky Craze, 65-74 Female (Patient) Published: October 15

I started down the path of MM (multiple myeloma) about three years ago. In May I went to Ohio State to check into a stem cell transplant and they are projecting that in the next two years I will need one, but my local oncologist says it won't be that long. So far I have been able to dodge chemotherapy but I am going for blood work every 6 weeks now. The last M-1 spike was 4.8 and judging from past progression my doctor thinks it will be 5.2 this time.

Comment from: Todd, Male (Patient) Published: February 24

I have been living with multiple myeloma since 2007. The cancer broke my T8 and I now have a fusion. In 2008 the cancer broke my neck. I also had another fusion. In 2009 I had a bone marrow transplant and am still healthy.

Comment from: Bea, 55-64 Female (Patient) Published: February 01

I was diagnosed with multiple myeloma in 2001. I had the analogous stem cell treatment and I was in full remission until 5 years ago. My doctor said it was still slow and I have been fine until about 5 months ago. My hip is extremely painful, and I will see my oncologist soon. I am hopeful that they will do another stem cell transplant.

Comment from: Bea, 55-64 Female (Patient) Published: January 26

I was diagnosed with multiple myeloma in 2001. I had the analogous stem cell treatment and I was in full remission until 5 years ago. My doctor said it was still slow and I have been fine until about 5 months ago. My hip is extremely painful, and I will see my oncologist soon. I am hopeful that they will do another stem cell transplant.

Comment from: Eloise Marage, 55-64 Female (Patient) Published: October 29

I was diagnosed with multiple myeloma (MM) August of 2004. My doctor had checked for more than a year to find why I was anemic. When he could not find why, he sent me to a hemo-oncology clinic. They found that it was on the border line and opted to observe for 6 months. I was given thalidomide for one year. In 2006, I was given a bone marrow biopsy after which I was told to prepare for a stem cell transplant (SCT). The transplant lasted for 4 1/2 years. In Oct 2011 I started treatment again and in April 2012 I had the 2nd SCT. In 11/12 to 6/13 I did the 3rd cycle of treatment. The 4th cycle started in 10/13 to present. My treatment since 2011 has been Revlimid, Velcade and dexamethasone.

Comment from: Myeloma, 25-34 Male (Patient) Published: October 07

I am a 25 years old male with multiple myeloma diagnosed in early 2013. Since then I had 8 long months of chemotherapy then I had auto stem cell transplant which also involved heavy dose of chemotherapy. It has been 4 months since auto stem cell transplant during this period my protein counts have been high and keeps going up my doctor is also confused what needs to be done next to control this aggressive disease.

Comment from: 65-74 Male (Patient) Published: February 06

I had a fall at work which I did not consider serious but eventually saw my GP about as I was always tired - sleeping for hours- and had pain in my ribs and left leg; the latter I put down to the fall. The GP misdiagnosed the pain as nerve damage and prescribed a large dose of anti-inflammatories which shut down my kidneys (already damaged by the myeloma) and nearly killed me. Blood tests revealed the myeloma and the fact that my kidneys were functioning at about 10%. I have had several courses of chemo (Velcade) and I am, at the moment, stable with about 26% kidney function. I also have lumbar plexoplathy and have suffered a heart attack. So it is sometimes difficult to know which of my ailments is responsible for which symptoms.

SLIDESHOW

Understanding Cancer: Metastasis, Stages of Cancer, and More See Slideshow
Comment from: KvMum, 55-64 (Caregiver) Published: August 31

My mum was diagnosed with multiple myeloma in 2011 December and had her autologous stem cell transplant done in January 2012. The results have been good since then. The doctor has reduced her medicine dosage too, but since last one month she is having nagging pain in her leg and she is having difficulty in walking.

Comment from: Kate, 45-54 Female (Patient) Published: June 18

My doctor thinks I have multiple myeloma (MM). My blood work and urine are normal but x-rays showed lucency in my hip and pelvic bones which apparently points to MM. I have an MRI scheduled next week. I have pain in shoulder, back, hip and thigh. I lost a bit of weight, not a massive amount, and feel very fatigued. And I have severe headaches that last for days.

Comment from: John, 55-64 (Patient) Published: July 07

I was diagnosed with multiple myeloma 8 years ago. I had fractured spine requiring fixation. I am on lenalidomide and cyclophosphamide 10 and 50 mg weekly. My protein levels are still rising.

Comment from: Joseph1946, 65-74 Male (Patient) Published: February 20

Prognosis means, ultimately, "how long do I have?" But that question is not a valid use of survival statistics, which should be used primarily in assessing the best treatment for the stage that is presenting. This is because it is based on dead people. You are not dead, so you are not included. I was diagnosed with Stage III-B MM, type lambda, (- B means with kidney damage)with 90% marrow plasma cells, in March of 1993. I had a three-year remission with my first chemo of intermittent high-dose dexamethasone. After three years, when a small amount of Bence-Jones protein was found, I enrolled in a clinical trial "Intensification of Stem Cell Transplantation," in November of 1996, and have had no detectable disease since that time. I still monitor, but now at six-month intervals. Prognosis? Anything is possible, even for late stage MM like mine. When people ask me what I do, I tell them that I "rewrite medical statistics."

Comment from: tim, 45-54 Male (Patient) Published: June 11

I'm 45 years old and found out two months ago that I have multiple myeloma. I went to the hospital for neck pains and my c-2 vertebra was fractured. I have been doing radiation and chemotherapy. I'm at stage 3 and they have me scheduled to have a stem cell and a bone marrow transplant. To be honest I'm very scared about this because it has not been a very comfortable ride so far. I'm a single father and really hate for my kids to see me weak and down.

Comment from: 65-74 Female (Patient) Published: December 26

After leaving MD Anderson I continued chemo and developed a urinary tract infection which affected my ability to think and remember things. I was admitted to a local hospital and transferred to MN Anderson. They treated the UTI and put me on a strong chemo medication. I had to spend awhile in rehab to regain my strength. I had another bout of pneumonia due to anemia which required 2 units of blood. It is good to tell you I have been in remission for 4 months, have been able to have kyphoplasty yesterday which we ate hopeful will ease the pain from the fractured vertebrae. I am a happy person today!

Comment from: 75 or over Male (Caregiver) Published: February 27

My father is 75 and started feeling backaches. He consulted with an orthopedic doctor who started giving him pain killers, but the pain kept increasing. Another orthopedic doctor was consulted, but no treatment was given. The pain continued to increase for three months. A new doctor advised to go for some tests and a bone scan, which immediately diagnosed multiple myeloma. Accordingly treatment was started and now it is totally under control. I advise that when pain in your body persists for more than two weeks to get it investigated.

Comment from: Sandi2009, 45-54 Female (Patient) Published: May 24

I was a Caucasian 42 year old female when diagnosed with multiple myeloma. I have had 2 stem cell transplants I have been in remission for 13 years chemo and stem cell saved my life I am in Stage 3 kidney disease which does not seem to be progressing. I do exercise in the water 2 days weekly I do have osteoarthritis in much of my body. I have had 9 broken bones from hips, to ribs to arms, I also have flagrant fibromyalgia, I was diagnosed with stage 3 in 1998 but I'm still here recently my oncologist has stopped all preventive treatment for MM and feels that I have a good chance at even a longer remission there are survivors out here I wish I had known that 13 years ago when I was looking for hope.

Comment from: angelbaby120, 65-74 Male (Caregiver) Published: May 18

Disease was found Feb. 12, 2010, with Multiple Myeloma of the spin. He was on maintenance medication called Thalomid but now cannot tolerate the medication given. Pain is over a 10 in both legs. He was taking 200 mg of Thalomid then it was changed to 100 mg. His doctor has taken him off the thalomid to see if the pain in his legs goes away.

Comment from: outlaw--43, 45-54 Male (Patient) Published: January 26

I was diagnosed in Sept, 2010 and have been going thru with a regimen of doxil infusions, revlimid for 28 days a month and dexamethasone. I now have to decide on having bone marrow transplant.

Comment from: jack, 55-64 Male Published: February 27

I am on the edge between smothered myeloma and multiple myeloma. The doctor wants to monitor blood tests and X-rays every three months without any drug treatment yet.

Subscribe to MedicineNet's Cancer Report Newsletter

By clicking "Submit," I agree to the MedicineNet Terms and Conditions and Privacy Policy. I also agree to receive emails from MedicineNet and I understand that I may opt out of MedicineNet subscriptions at any time.

CONTINUE SCROLLING FOR RELATED SLIDESHOW