Multiple Myeloma Support Group

My wife passed away from MM last year. You KEEP fighting. Your mom may have the cancer, but the rest of the family is going through it as well. I know. My wife was a very independent women. Until the MM. Support your mom in any way you can. Continue to ask questions of all the doctors, nurses and anybody else that will listen. If you don't think they are giving the treatment you think she needs, get a second, third, and even a forth opnion if need be. Make sure that, that all is been done to help. Mind and body, not just the body. It was very hard on me to see my wife just waste away to noting. KEEP FIGHTING.

Kevin

" I was diagnosed with MGUS in 3/09. It is a pre MM condition. I also survived stage 3 ovarian cancer in 1988. I'm also a registered nurse. With all this background my best advice is to keep having hope. Ask questions and as Kevin said in the previous post if you aren't getting answers keep on till you find someone who will listen. The internet is a great tool for information. The Mayo Clinic site is wonderful. I went there in March. They have lots of information for patients and famlies.I will keep you and your Mom in my heart, Carol

I was diagnosed with MM stage III in June 2005. Had four rounds of Chemo (VAD, then HDT (High Dose Chemo with Stem cell Transplant). Well and without medication for two years. Relapse after two years. 9 months on Thalidomide and the the 8 cycles of Velcade. Now in partial remission.
Good info from International Myeloma Foundation (based in California)on www.myeloma.org and from United Kingdom Myeloma Foundation (based in Scotland) on www.myeloma.org.uk.
It's very important that your mom is treated by doctors with extensive experience in treating MM patients (big centre?)
May be you would like to look for some alternative treatments as well (as the conventional medicine does not provide a cure for MM!). The most promising I could find are Low Dose Naltrexone (www.ldninfo.org) and Cesium High pH Therapy (www.cancer-coverup.com; www.mwt.net; www.essense-of-life.com; and google, of course!). I will try one of them also.
Please, have courage, I know that it is not easy.
Wishing you and your mom the strength to endure and hoping for fast improvement,
Sanda

I was diagnosed with MM stage III in June 2005. Had four rounds of Chemo (VAD, then HDT (High Dose Chemo with Stem cell Transplant). Well and without medication for two years. Relapse after two years. 9 months on Thalidomide and then the 8 cycles of Velcade. Now in partial remission.
Good info from International Myeloma Foundation (based in California)on www.myeloma.org and from United Kingdom Myeloma Foundation (based in Scotland) on www.myeloma.org.uk.
It's very important that your mom is treated by doctors with extensive experience in treating MM patients (big centre?)
May be you would like to look for some alternative treatments as well (as the conventional medicine does not provide a cure for MM!). The most promising I could find are Low Dose Naltrexone (www.ldninfo.org) and Cesium High pH Therapy (www.cancer-coverup.com; www.mwt.net; www.essense-of-life.com; and google, of course!). I will try one of them also.
Please, have courage, I know that it is not easy.
Wishing you and your mom the strength to endure and hoping for fast improvement,
Sanda

Hey just want to give a shout out to everyone who is so supportive and helpful on here.

My mom was diagnosed in 2002 and has had loads of chemo as well... she's gone into partial remissions twice each followed by a stem cell transplant and now is starting a new drug just 'oked' here in Ontario called--- revlamid? Anyway, speaking as a 23 yr old at this point, it's toughhhhhhhhhhhhh as *&^$ to have a family member going through this, hard on everyone even if thy don't show it. My mom was originally given only 2 yrs and being so young (and scared as I was the youngest child), I started distancing myself and was constantly preparing for the worse. I don't recommend that path lol. Luckily nearly 7 years of my mom still fighting it and living her life with admirable love, humour and strength... I feel lucky that I've had time to grow closer and learn to treat her as my 'mother' again... and not someone i thought i had lost... because time line don't count for anything... diagnosis or not, non of us are given a time line, so my LAST and probably the olny actual advice i can give as a daughter to a daughter... is stay positive, be curious, get to know your mom... and still live your life and let ur mom be a part of it! Hope any of this was helpful...

if anyone else has started or been on revlamid I'd really be curious to know how it's goind. Thank you so much! keep givin' er everyone!

I have been on Velcade since I tarted taken chemo in April, I was told had this cancer MM in Nov of 2008 and yes it scared me. In June they added Cytoxin to my chemo one day out of the 4 that I tak Velcade, It seem like it is a long journey, but one thing I can and will say is god is the only one who knows how long we will live, he gives the dr's sense enough toelp us on our journey. Keep figting, but also as a child thatlost my mother to cancer spend as much time as you can with and tell herhow much you love her because it does come a day when you won't be able to do that. you are in my thougths and prayers.