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multiple myeloma

Posts: 4
Joined: Jan 2001

I've just recently been diagnosed with several types of cancer&"possible" cancers. Multiple myeloma--thyroid--jugular vein--large bowel--skin cancer. Can someone out there give me some info on any of them? I can't go through-chemo-radiation or bone marrow transplant.thanks. sonitikki@earthlink.net

Posts: 1
Joined: Mar 2002

I don't have much info. My dad was diagnosed with mm four months ago. He is holding off on treatment until all testing is completed. Seems they keep finding more cancer. I'm confused as to weather or not it is all related to mm or not. He does not want to get treatment if it's not going to extend his life for quite a while. I'm nervous that while he is waiting for all this info he will cross over the chance for successful remission.

Posts: 1
Joined: Nov 2003

My dad is going through the same thing and Im so desparate to find out some information on his illness. so i can understand better. His protein level is really high. They are really concerned about this and so am I. He doesn't want to do anything until after the holidays. Im worried if he does that his chances for remission will be decreased. Help me. Please.

Posts: 1
Joined: Feb 2004

My dad was diagnosed with MM at the end of last September. His doctor told him if he didn't start treatment immediately his prognosis was dire. He started treatment that day. He has tried two different medications since that time, the first with no success. He has been in and out of the hospital due to complications over the last five months. Eventually they took him off all treatment for three weeks so he could regain his strength. During his treatment his M-protein was reduced to 5,000 and he just began treatment again last week. He is walking unaided and off oxygen, which is a significant improvement. I haven't talked with other families or patients, but I would be happy to offer any information about our experience (and I truly mean "our") and welcome the opportunity to learn about how others are dealing with this disease.

Posts: 1
Joined: Mar 2004

You don't mention how old your dad is , but I was diagnosed with MM on Dec. 22. total shock. How did I get it? Well, It took me a long time and a lot of help from angels to find a specialist in NYC at the Weill Cornell Medical Center. I think it's important to find a doctor who specializes in the disease. I found my doctor to be so much more knowledgeable than the other 4 doctors who treated all types of cancer. I am in stage 3. My doctor tells me after treatment_ 4 months of chemo at home and a stem cell transplant that I will have a long life expectancy. A positive outlook helps a lot with the treatment. I will have the transplant in may or June. I also do a lot of low impact exercising, stretching, and low weight (2 lbs) lifting for my arms. I am in good health and spirits. My husband is taking this very hard. he hasn't slept in 2 months. The doctor put him on paxil but it seems to make things worse. I feel bad for him while I am happy to be off of work. I rarely think about my disease, I just take the Decadron and Thallimide. I don't know if this helps, but hang in there.

Posts: 3
Joined: Jul 2004

hello, read your reply to the above,you seem to be in high spirits, just like my daughter says I am. my name is Suzannah age 56 diagnosed with MM in March 2003 undergone chemo etc Stem cell Transplant in November 2003 doing WELL feeling fine gone back to work do exercise to strenghten my body and walk my Dog alot. My Partner left me couldn't handle it. I wish him well if he ever is unwell I hope someone is around for him cause he sure wasn't there for me. I am pleased you are dealing with MM, we must be very alike for I am coping with life just fine. Please reply to this e-mail I loved to here from you it is now April 2005.

Posts: 3
Joined: Jun 2005

My friend has just been diagnosed with MM. I am following your stories with interest therefor.
She also might have a condition called amyloidosis. Did any of you have this also?

Posts: 1
Joined: Oct 2005

Was diagnosed abou a month ago with Stage II MM---am on thalidomide, decadron and awaiting more blood test results. My husband is checking alternative therapies and teatments we might consider--anyone know of anything other than the usual drug regimens and treatments the oncologist has already started discussing with us? This is all very frightening and confusing too--so much to deal with and I am feeling overwhelmed at times.

Posts: 3
Joined: Sep 2005

My dad had MM stage III. He just passed away last week. He was on Zometa once a month, Thalomid daily, Decadron once a month and Valcad once every 2 weeks. His dr did bone marrow biopsy on his left side and found no trace of MM. He was slowly going down hill with fevers and sweats around 3x's daily. His dr did a PET SCAN and showed his right side of his hip and thigh were totally taken over by MM. He confirmed it with another bone marrow biospy on the right side and the cancer count was 10,000 plus were the left side showed 1,500. PET SCAN are not used for MM but if you can talk with your dr and hopefully your ins company will cover it, it did prove very helpful with my father. He was in Stage III for 2 1/2 yrs with a failed stem cell transplant.

PP020771's picture
Posts: 1
Joined: Feb 2018

 My ENT found lesions on my lytic bone on CT of Sinuses I had 02/17/18 (radiologist actually saw them it was totally random)and was told it looks like MM with Paget's Disease. Had MRI 12/14/17 and it was not visable. Now I will be having a second MRI in the next week. Am I correct in saying that because the lesions are there I know have some sort of Cancer or just have to go thru the process to determine what type or if its a benign lesions.

bkkennedy's picture
Posts: 1
Joined: Apr 2018

I had not heard of this disease before being diagnosed in January.  Since then I have had bone scans, blood tests, bone marrow biopsy, to determine the treatment.  I have an infusion of Kopralis two days a week for three weeks and then a little break.  After 6 rounds of this it will be determined if I have a bone marrow transplant or if they freeze the marrow for later use.  Lots and lots of pills as well.  I feel fortunate that my side effets are little to none.  My appitite isn't up to usual and I am struggling to keep my weight up ( 99 lbs)  I am on the ketogenic diet. Tom Brokow wrote a good book on his battle with myeloma...A Lucky Life Interrupted and I am just starting The Mission is Remission by Pat Williams.   Oh my gosh....I just realized the pic I posted waw probably not the best choice! lol  I'll try to figure out how to change it to something with a different setting.  But it was a great vacation trip with friends to Savannah



Posts: 5
Joined: Apr 2020

hi, I see your post is from 2018, how are you doing and did you get stem cell transplant?

i was diagnosed 2 months ago with MM and don’t know wether to do stem cell transplant.


Posts: 5
Joined: Apr 2020


looking to talk to anyone who has multiple myeloma and would share some of their experiences with me, I have 3 more chemo treatment cycles and I’m supposed to decide 

if I am proceeding with the stem cell transplant, but I am curious if there are MM survivors that didn’t receive a transplant and how their life has been, the good, bad any thing to fill in the blanks a bit. My oncologist says stem cell is the only way to get 3 or more years?    Thanks in advance 













Posts: 3
Joined: May 2020

If you are unable to go through chemo and radiation, I would try a plant based diet.  I have had MM for 10 years and just recently changed my diet. It is too early to tell, but I feel 100% better than I have in the last 10 yrs. 

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