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Support for Multiple Myeloma



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Betsee

				          
            Posts: 1

          
          
            Joined: Mar 2004

          
        					
				
		
									

        			    March 8, 2004 - 1:10pm			  			

			
			
Hello, anyone out there with this disease? I recently have started the journey with this disease. Diagnosed with MM in July due to abnormal protein in blood IGA. Compression fracture on spine found on bone scan and few spots elsewhere were noted in July 03. Hospitalized in August03 with severe back pain, two days later went paralyzed from waist down. Doctors found tumor on spine coming from comprsession fracture. Radiation for couple weeks didn't reduce the tumor. Surgery was only option. First one done Sept. 10th after six hours in I started to hemmorhage and had small heart attack, collapesed lung and woke in Intensive care to be told they had to finish the surgery in two weeks. Second surgery was successful and removed the tumor and vertebrae. Movement began to return and doctors were hopeful that I would walk in six to eight months. Prognosis was good for me as far as the cancer because I am 43 years old and healthy. Treatment started with the Thalidomide and Decadron. My counts were going down and I was almost in remission last month 400-500 range (3000-4000 in Aug). Two weeks ago they were 1100, so doctor said the drugs stopped working. He stared me on Velcade IV twice a week for two weeks and one week off. I have a blood test scheduled with week and will find out more when I see him next week. Stem cell transplant in the future will be discussed when I see him also. I am starting to walk with a walker and doing real good.  Would like to hear from others with this disease.


‹ MM cancer My Leukemia, Lymphoma, HD, and MM Site ›

						
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CSN Admin

				      
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March 16, 2004 - 4:04pm

			
Re: Support for Multiple Myeloma
			
Betsee - unbelievable story - I was diagonosed with MM in Sept 2003 after having a bad back ache!!!!!! Been all down hill since then.........chemo and cancer, thats all that rules my life now...... its been tough......



			
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pc_thompson

				      
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April 2, 2004 - 11:57pm

			
Re: Support for Multiple Myeloma
			
Betsee,


Sounds like you have had a very tough go of it.  Wish you nothing but the best.  Keep a positive outlook, it makes things easier to handle.  I was diagnosed with MM in June of 02, and have done radiation, chemo, and two stem cell transplants.  Feeling good now, with things more or less under control, so it can be done.  Would be happy to share my experiances, if it would help you.  I find that if you have an idea of what to expect, it makes things more tolerable.  I get my care at University Hospital in Cleveland, the Ireland Cancer Center.  It also helps if you take and active role in deciding your own treatment options.  Never be afraid to ask questions or be a total pain in the butt if helps you be more informed.


Shot me a note if you like, and the best of luck!


Andy



			
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haynycr

				      
	        Posts: 1

	      
	      
	        Joined: Apr 2004

	      
	    				
		
			
April 4, 2004 - 7:19pm

			
Re: Support for Multiple Myeloma
			
I would greatly apprceiate any info you could give to me on mm.  My mother -in law was just diagnosed with this on Thursday and we go for a bio on wed.  Please give me info on what to expect.  She has had terrible back pain. Hope you are doing well.  



			
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mygen

				      
	        Posts: 9

	      
	      
	        Joined: Mar 2004

	      
	    				
		
			
April 7, 2004 - 9:36am

			
Re: Support for Multiple Myeloma
			
MY MOTHER HAS MM.  SHE WAS DIAGNOSED IN 1988 AFTER HAVING FLU SYMTOMS FOR SEVERAL MONTHS.  FROM WHAT WE HAVE BEEN TOLD THE CANCERS THAT YOU CAN GET FROM MM ARE FAR WORSE.  THE STEM CELL TRANSPLANTS CAN BE VERY BENEFICIAL TO PEOPLE WITH MM.  MY ADVICE FOR YOU IS TO GET ALL THE INFORMATION YOU CAN BEFORE DOING ANYTHING.  MY MOTHER HAD A FEW TREATMENTS THAT WERE NOT IN HER BEST INTEREST. MY MOM NOW ALSO HAS AMYLOID WHICH HAS COMPLETLY SHUT DOWN HER KIDNEYS.  IT HAS BEEN VERY HARD ON HER.  SHE ALSO HAS NEUROPATHY IN HER LEGS WHICH THE AMYLOID HAS ALSO CAUSED.  SHE IS HAVING A VERY HARD TIME GETTING AROUND.  I WOULD LIKE TO COMMEND YOU FOR YOUR CONCERN.  MY HUSBAND IS A VERY CARING PERSON BUT HAS NEVER TAKEN AN INTEREST IN HER DISEASE.  MY MOM IS NOW 60 AND HAVING TO RETIRE FROM HER JOB DUE TO THE NERVE DAMAGE IN HER LEGS.  HOW OLD IS YOUR MOTHER-IN-LAW?  I DON'T KNOW HOW MUCH I CAN OFFER YOU FOR INFORMATION BUT I AM VERY WILLING TO SUPPORT YOU EMOTIONALLY.  THIS IS A VERY HARD THING TO GO THROUGH.  MAY GOD BLESS YOU AND YOUR FAMILY.



			
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jemasoc

				      
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	        Joined: Jul 2002

	      
	    				
		
			
April 9, 2004 - 9:59pm

			
Re: Support for Multiple Myeloma
			
I was diagnosed MM in Dec. 2001 after a long period of anti-biotics to cure a cold or bronchitis that would not go away. Like everyone one else the shock was enormous but after checking around I chose the transplant following the usual chemo etc...On June 4th I went through the transplant using my own cells. The 21 days of isolation and treatments were nothing to write home about, but I survived.I continue to receive one shot of Nuepegon per month and Zometa for my bone build up every 3 months. I was going for a bone marrow check up every 3 months and as of my last check in UNC Chapel Hill NC I am in remission and only have to go back in 6 months.I still have blood tests every month & the shot but all readings are well.Because of the Myeloma your ant-bodies are weak and your fight against colds is down.In Dec 2001 I thought I would never see 70 and as of Mar. I had my 70th and still going strong.



			
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CWHITE

				      
	        Posts: 1

	      
	      
	        Joined: Jan 2004

	      
	    				
		
			
June 14, 2004 - 4:33pm

			
Re: Support for Multiple Myeloma
			
Hi there, I am new to this website and was wondering if you could give us some information about the stem cell transplant.  My husband is scheduled to have one in late July.



			
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kickbox

				      
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	        Joined: Oct 2004

	      
	    				
		
			
October 24, 2004 - 10:30pm

			
Re: Support for Multiple Myeloma
			
Andy, 


My husband was diagnosed in May '04 with MM.  41, great health, active, and in shape.  What a shock!  Anyway, you said you were up for questions so I have one fo ya.  Jim has responded well to Thalidomide, decatron, and arideia and is almost in the "remission" phase 10/04.  His Dr's want him to do a stem cell transplant as early as January.  They say it is the optimal time becasue he is so healthy.  We go to Barnes in St. Louis.  With your experience through all your trials, what do you think?  Should we go ahead with the stem cell transplant?  It is a very scary thought to be so vulnerable.  Your comments are appreciated.  Best luck to you, our prayers are with you and all those who share MM.


Sharon



			
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CSN Admin

				      
	        Posts: 557

	      
	      
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October 25, 2004 - 11:54am

			
Re: Support for Multiple Myeloma
			
Hi Kickbox,

My husband was diagnosed in March 2004 at age 51. He too is very early stages and in fairly good health.  He just had his stem cells collected for the transplant that will be done fairly soon.  He got shots of a drug called Neupogen for a week to mobilize the stem cells.  It is usually a 3-4 day process of collection to get the quantities needed for transplant, however my husband only needed it done once and they got all they needed for the transplant.  Now we are waiting for a date for the next step which is high dose chemo followed by stem cells being infused and waiting to see that complete remission is achieved. This is from all I have read the best treatment available and the best time is early in the disease.  


Anyhow, best of luck to you and your husband.  Linda



			
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prisgage

				      
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	        Joined: Apr 2004

	      
	    				
		
			
April 28, 2004 - 3:53pm

			
Re: Support for Multiple Myeloma
			
Sounds like you been through it!  Keep up the fight...do you have any feedback for a healthy 79 year old mother who is now in her 2nd year of fighting. We are looking at my own Stem Cell transplant, but worry about procedural complications...Prayers to you and good luck 



			
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gabbie60

				      
	        Posts: 1

	      
	      
	        Joined: May 2004

	      
	    				
		
			
May 2, 2004 - 1:16am

			
Re: Support for Multiple Myeloma
			
My Mom was diagnosed with MM 1 yr and 1/2 ago. So far the Oncologist says the blood test show MM but she has no symptoms so far. Where did you start with your search for info? Your story is very incouraging even with the trials you've survived. I have survived Breast cancer since 6/7/99. My Mom is 82 yrs of age and I don't know if she could take some of the treatments I've heard about. What is your sources? If you don't mind I could use some help from someone who has been there and knows the truths about what works and what doesn't. Thanks my name is Carol but gabbie60 is my nickname



			
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DrSteve

				      
	        Posts: 8

	      
	      
	        Joined: Mar 2004

	      
	    				
		
			
May 6, 2004 - 6:02am

			
Re: Support for Multiple Myeloma
			
Hello, Betsee and others.MM hit me like a ton of bricks end of Oct. 2002 with the hyperviscosity, decreased hemoglobin, lost 3 inches in height(all in back that collapsed)and 40 lbs. in less than 3 weeks.Went through pheresis to delete 6 liters of bad protein just to keep me alive long enough to begin the chemo. for 4 months. Then an autologous stem cell and experimental T-cell transplant. These lasted for a few months before the MM reared its ugly head again with a great vengence that gave me 4 to 6 months to live. Barnes Hospital got me into an experimental program which uses Revimid and dexamethasone as the drugs. The change for me has been dramatic. My monoclonal spike has dropped from 6.5 to 1.6 in 56 days. My back still kills me, but that will be the case for the rest of my life. When I am off the steroids, the other bone pain is also quite nasty,BUT I am still alive and working. I see a full day of patients and still exercise and run 3 miles 3 to 5 times a week. It hurts like the devil, but it hurts anyway. So I force myself to do it. With this disease, as others have said, your attitude is everything. Be strong for yourself, and more for your loved ones. They know the struggle you're going through, but it's easier on them if you can fake some of the strength. Good luck and my prayers go to you and your family. There are many great things on the horizon for this disease. Keep the faith. DrSteve



			
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GeoM

				      
	        Posts: 1

	      
	      
	        Joined: May 2005

	      
	    				
		
			
February 10, 2006 - 5:21pm

			
Re: Support for Multiple Myeloma
			
My husband also has myeloma.

I was wondering if anyone who reads these messages has read about the protocol which cured a guy with myeloma. This protocol is listed on many web sites, just do a search with these words "myeloma beta glucan remission Scheinbart" and you will find them. Anyway, for right now, here is one of the sites which list this protocol:

www.beta-glucan-13d.com/beta%20glucan%20myeloma.htm

I found that Eric A. Scheinbart, M.D., who is co-author of this protocol is at:

Memorial Family Medical Assoc.

213 Mims Rd # A

Sylvania, GA 30467

(912) 564-2026

I did not contact the place. I would like to know if any of you had any experience with taking any of the meds listed in this protocol, and what kind of results you had. Please comment for all of us if anything good or bad happened to you.

Here is the protocol:

- Beta 1/3 D Glucan

- Mak-4

- Mak-5

- Pro-Boost Thymic protein A

- Gerovita GH3

- Maitake mushroom extract

The quantity and how to take everything is described on the web site above.

I did lots of reasearch on each of the meds listed and I found very good things about all of them. It's only one thing I found bad (?) about beta-glucan, so I don't know if beta glucan is good for everyone or not, although, it is stated in many places that is very good for MM.

This is the bad thing i found:

http://www.jbc.org/cgi/content/full/278/3/2043

Does anyone undestands well this article ?

Thanks for reading this comment and God bless you all. 



			
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leann52

				      
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	        Joined: Nov 2006

	      
	    				
		
			
November 8, 2006 - 6:16pm

			
Re: Support for Multiple Myeloma
			
GeoM,

Have you found anyone who has tried this protocol?  I am an MM patient, and wouldlike to know if it worked for you or anyone else.



			
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DARRELLD

				      
	        Posts: 196

	      
	      
	        Joined: Mar 2006

	      
	    				
		
			
March 26, 2006 - 4:48pm

			
Re: Support for Multiple Myeloma
			
This is my 6th year with MM.Now Ihave compression fractors in spine and pain also.I am on Velcade 2days a week, 2 weeks on 1 week off.Just started Treatment 2weeks ago. I had a stem cell transplant in 2004. did well untill now,cancer is flaring up. There was small talk about back sugery, I still have wobbly legs.Will see Dr. next week and see where I am at.

good luck to you.



			
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GypsyGal

				      
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	        Joined: Sep 2006

	      
	    				
		
			
May 9, 2008 - 12:04pm

			
Re: Support for Multiple Myeloma
			
my MM was diagnosed in 2001. i didn't need any treatment until August 2004. went into remission for 6 mos. had more cheom, and drugs didn't work. now i'm going ready to go back on chemo, but with new drugs. hopefully these will work. afrer my proteins go down, i will be considered for a stem cell transplant. this a wierd disease!



			
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