This morning I had a ton of errands to run, including a trip to the pharmacy. While standing in line, I was approached by an employee promoting some propolis-based products. I was feeling a bit tired and, frankly, in no mood to hear a sales pitch. So I made polite excuses, and she withdrew.
Well, almost immediately I felt like a total jerk, remembering that I used to be a fundraiser (worst job of my life) and realizing that it wouldn’t hurt me that much to have a look at this stuff, so I crossed the room to speak to her. I ended up buying a propolis cough syrup…no, I don’t have a cough, but it’s always good to have something like that in the medicine cabinet. Besides, I had to buy SOMETHING.
Encouraged by my interest, she began describing other, similar products to me. These throat drops, she explained, stimulate our immune system in order for us to be in better shape at the beginning of the flu season.
It was out before I could stop it: oh, no, I can’t take anything that stimulates the immune system. I have multiple myeloma.
She looked at me blankly and said: ah, I see. But I could tell that, in fact, she could not “see” at all. She had no idea what myeloma was, but figured that it probably wasn’t a good thing. She didn’t ask me for an explanation, so I didn’t offer one.
Those four words, ho il mieloma multiplo, ended our chat.
Hi Margaret, I am 35 and the mother of 2 boys, ages 6 & 4. My husband was DX in late Feb. His MM bothering him for about 6 months now looking back. He had fatigue and anemia. He thought he was fighting the flu and when he got to the hospital his kidneys were not functioning properly and he had severe anemia. A Dr. that was going to do a kidney biopsy suggested a test for MM and it came back positive. We were devestated. I am an information junkie so I think I put myself in a terrible state because there was NO positive news in regard to this disease. Scott has undergone treatment with Dex, thalidomide, velcade and cyclophaphamate (sp), he has stem cells harvested in July (got enough for 3 transplants) and had a STC last month. We are home now and he is recovering. He has lost approx. 30 lbs., he is aching ( using his muscles again) but in no real pain. His MM attacked his kidneys so he has dialysis at a clinic 3 times a week ( we are hoping his kidneys come back) and has a lesion on one rib & a few “punch outs” on his shoulders and hips. He is in no pain. Your site has been a huge “God send” to me. Scott is on Vit D, a multi , 500 mg resveratrol & I started him on curcumin from http://www.agelesscures.com (2 grams per day for 2 weeks, 4 grams per day weeks 3 & 4 & 8 grams per day weeks 5 & 6) I contacted DR. Aggarwal and he says this sounds reasonable. Any suggesstions would be appreciated. So far so good ( he started the curcumin yesterday) and he had blood work done Tuesday past and they will do it again in 6 weeks. We do not have the blood results yet but they said they are bnot that accurate until 3 months after the SCT.
I would just like to tell you this is a marvelous site and the amount of research and work you have put into it is amazing – Thank you.
My opinion of MM as a death sentence has changed – treatment and things are improving so fast and I hope this natural treatment helps Scott out too.
Thanks again – Shannon
Dear Margaret,
your comment about the imunesystem buster makes me wonder: I do take amongst others Beta Glucan. I am actually wondering if this is a good idea. Have you ever heard of Beta Glucan or ever known somebody – with Myeloma – taking it ? Best regards from Oslo
That’s why I’m concerned about telling people I have MM. In most of the cases you’ll get the stop of conversation. Or a conversation that starts with an obligatory ‘How do you feel?’.
I can’t stand it.
Glad to read a post of yours.
I bought a bottle of Beta Glucan capsules because I had seen an article on the internet indicating positive results with MM. However, the article was not exactly independant and I decided against taking them after I had researched it further. I think I read that Beta Glucan stimulates IL-6 (which is bad news) but I can’t find the reference now. Can anyone else help?
Paul