CancerCompass message board discussion started by Floridabeach on 3/20/2007 http://www.cancercompass.com/message-board/message/all,10558,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My mother has been diagnosed with multiple myeloma.  she is refusing treatment (chemo).  Has anyone been in a similar situation?  please advise.  Also, for those who have had or know someone with multiple myeloma - how are they doing now?thanks so much in advance for your reply.nur Floridabeach Tue, 20 Mar 2007 00:00:00 GMT Some more information would be helpful.  How old is your mother?  Is her health otherwise good?  Do you know a stage of her MM?  What about some labs? Albumin, beta 2 microglobulin.  Why would she refuse treatment?  Median survival is 5-6 years in early stage MM with treatment. Oncrx Tue, 20 Mar 2007 00:00:00 GMT  Everyone has the right to choose what they will do with their body and it is hard to stand back and not want to help. Having said that, I agree with the other reply that age does have a factor.  MM can be an extremly painful death.  I was a end stage 3 or 4 depending on who rates this (My doc said stage 4 you are dead)  and I had one foot in the grave, so to speak...I did try the following:3 weeks of dexamethasone    10 dys radiation treatments.  Both of these affected me adversly but I wanted to walk again hence the radiation to slow the spread of disease and to ease some of the pain. I took a natural supplement plus No sugar, coQ10, lots of antioxidents and immune system boosters.The website you can go to is  www.polymva.com  www.facr.comthe poly worked for me and it has for many others but it does not work for everyone.  However it does reduce the pain and allow for a boost of the immune system. if you wish more infor just post your yahoo email and I will answer...Elaine  On 3/20/2007 Floridabeach wrote:My mother has been diagnosed with multiple myeloma.  she is refusing treatment (chemo).  Has anyone been in a similar situation?  please advise.  Also, for those who have had or know someone with multiple myeloma - how are they doing now?thanks so much in advance for your reply.nur  Commonsense2265 Tue, 20 Mar 2007 00:00:00 GMT Thanks so much for all your posts.  I greatly appreciate it.  My mom is 55 years old.  She has no previous medical concerns. Prior to finding out about this - my had back pain along with some difficulty walking.  The family doctor said it is arthritis.  However, she woke up with no feeling in her legs and from there she went to the hospital.  A MRI was done and a tumor was found in her spinal cord - it was removed.  Now the doctor says it is MM.  The doctor says there are one to two myeloma cells which have been discovered....through the results - biopsy/tests.  She otherwise seems healthy and is regaining her strength in her legs. As for the stage of MM - it is said it is early stage - but i will get more information when i meet with an oncologist tomorrow.Any additional advice from you all would be greatly appreciated..  thanks so much for your prompt replies - it feels so good knowing that someone is out there listening/reading. thank you,nur  Floridabeach Wed, 21 Mar 2007 00:00:00 GMT  On 3/21/2007 Floridabeach wrote:Thanks so much for all your posts.  I greatly appreciate it.  My mom is 55 years old.  She has no previous medical concerns. Prior to finding out about this - my had back pain along with some difficulty walking.  The family doctor said it is arthritis.  However, she woke up with no feeling in her legs and from there she went to the hospital.  A MRI was done and a tumor was found in her spinal cord - it was removed.  Now the doctor says it is MM.  The doctor says there are one to two myeloma cells which have been discovered....through the results - biopsy/tests.  She otherwise seems healthy and is regaining her strength in her legs. As for the stage of MM - it is said it is early stage - but i will get more information when i meet with an oncologist tomorrow.Any additional advice from you all would be greatly appreciated..  thanks so much for your prompt replies - it feels so good knowing that someone is out there listening/reading. thank you,nur  I am a 53 yo female who was having severe back pain and was later dx'd w/MM. It has ben 10 mo's since I started tx and I'm having an excellent response to Velcade. I will not lie and say that the journey has been easy but it has been worth it. Most of the info that I read was not very encouraging so I've relied on my faith in God, a good hematocolgist/oncologist and my support systems to get me through.           Blessings,          SC Dee sc Dee Wed, 21 Mar 2007 00:00:00 GMT I was diagnosed with MM in 2006, a week b4 my birthday.  I'm stage 1.  I too, was very frighten & confused.  I've had two biopsies and about to have my cells harvested.  I'm in perfect health other than the Myeloma.  I don't have any tumors or lesions.  I've only had minor discomforts from the medicines.  I took Dex for 6 months & it caused me to put on 20 pounds :( , but that's only temporary.  I have great doctors & nurses, and have been told that treatments are different for each person and have come a long way to prolong life.  I would strongly advise your mother to accept & embrace the treatments, and look forward to many more years.  I pray for all everyday that are going through any cancer.  Blessings Thu, 22 Mar 2007 00:00:00 GMT When you're first diagnosed with MM, you're usually given one very scary sounding option: some kind of induction therapy and then high dose chemo and stem cell transplant.  I can see why your mom says she wants to decline treatment.  I wanted to, too.  I was rushed through a bunch of tests and then told I was to start a chemo regimen called VAD a few days later, in preparation for a stem cell transplant.  Four years later, I have still not had a stem cell transplant.  I've had several different treatments, which managed to keep me stable during this time.  What I'm trying to say is that there may be other treatments your mom can start that will give her some time to think about what she wants to do and how.  If she needs to hear from others with MM, there are a few mailing lists you can sign up for.  There would possibly be hundreds of other people with whom to compare experiences.  One is at:http://web.mmsupport.net/content/view/188/80/ The other can be found at http://www.acor.org. My blog, which I've been keeing for 4 years, is found athttp://www.myelomablog.com/  Please let her know that there are options.Beth Unco1 Thu, 22 Mar 2007 00:00:00 GMT You said she has early stage ie. solitary plasmcytoma?  Basically the treatment for MM is symptomatic.  Many people live a good many years with no treatment or intermittent treatment.  With younger patients it is a more aggressive disease.  The natural history is the same irregardless of treatment but sxs can be controlled.  The tumor is usually sensitive to minor chemo agents and these can put it in remission.  Local radiation therapy is very effective for bone lesions and Zometa or other may prevent decalcification etc. Witchdoctor Tue, 27 Mar 2007 00:00:00 GMT http://www.multiplemyeloma.org/treatments/ www.nccn.org Witchdoctor Tue, 27 Mar 2007 00:00:00 GMT  On 3/22/2007 Unco1 wrote:When you're first diagnosed with MM, you're usually given one very scary sounding option: some kind of induction therapy and then high dose chemo and stem cell transplant.  I can see why your mom says she wants to decline treatment.  I wanted to, too.  I was rushed through a bunch of tests and then told I was to start a chemo regimen called VAD a few days later, in preparation for a stem cell transplant.  Four years later, I have still not had a stem cell transplant.  I've had several different treatments, which managed to keep me stable during this time.  What I'm trying to say is that there may be other treatments your mom can start that will give her some time to think about what she wants to do and how.  If she needs to hear from others with MM, there are a few mailing lists you can sign up for.  There would possibly be hundreds of other people with whom to compare experiences.  One is at:http://web.mmsupport.net/content/view/188/80/ The other can be found at http://www.acor.org. My blog, which I've been keeing for 4 years, is found athttp://www.myelomablog.com/  Please let her know that there are options.Beth I can relate to the person considering not wishing to submit to treatment.  I feel the same way right now, though I don't need to make this decision right now.  Still, I am wary of the treatment...if Iit is painful or toxic.  I'm sure it's because I feel just fine right now, except for a little anemia and an m-spike in my labs.  Reading some emails from a group I joined, I hear a lot about side effects and other mishaps.  It's a very negative experience to read this stuff, yet I can't keep myself away from it.  I keep looking and hoping for good news.  ssstefaniaaa Sat, 08 Sep 2007 00:00:00 GMT