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Waldenstrom's Macroglobulinemia

jayjen
Posts: 1
Joined: Apr 2008

I am a 55 year old female diagnosed with WM in January 2008. I am on a second course of Chemotherapy (fludara). I'm wishing to connect with other people who have this terrible and frightening form of cancer.
I feel for all cancer sufferers. Please be strong and never give up hope.
Jayjen. Email: jayjen@xtra.co.nz

Your CSN Staff's picture
Your CSN Staff
Posts: 200
Joined: May 2008

Hello,

Welcome to the CSN Community. I recommend that you do a search of the CSN site by entering "Waldestrom" in the search bar at the top of the page. You can then see who else on the network may be experiencing this diagnosis. For information on all of the CSN functions, I encourage you to visit the "help" link at the top of this page.

Take care,

Your CSN Staff

lymphomaladd
Posts: 3
Joined: Aug 2008

Hi I just joined today. I was diagnosed with Waldenstrom in April 2008
Kim

cindyjo
Posts: 3
Joined: May 2008

Hi Kim, I was also diagnosed with this rare form of cancer in March 2007. I am so very confussed about this cancer. You see I am a 4 time cancer survivor. Make a long story short I was diagnosed with cervical cancer in 1991, then in 1999 I was diagnosed with Right Lung cancer, then in 2007 I was daignosed with the Waldenstrohm's and then in Feb. 2008 I was diagnosed with Left Lung cancer. I have SURVIVED all of these and will continue treatment the rest of my life for the Waldenstohm's.
What do you know about this type of cancer? What has been your course of treatment?
Last year when i was diagnosed I had to do chemotherapy and the drugs used were Fludarabine and Rituxin. I had to do this for 5 days in a row and then 5 days a month for 2 more months well after that everything went all screwy with my labs and we stopped, then about 6 months after that thet started treatment again I got real sick ended up in the hospital and treatments were once again stopped, then while undergoing radiation treatment for the Left lung cancer I was needind treaetment again for the Waldenstrohm's, but they put it off as long as they could and then decided that I had to go ahead and have treatment but could not give me the fludarabine, the only gave me the Rituxin and I did this 1 time a week for a month, that was in March 2008 and I haven't had atreatment since then. I have no idea what is going on. Please let me know what you know, Thanks

gyrene72
Posts: 7
Joined: Oct 2010

Hello all. I too have the same type of cancer as each of you. Mine was diagnosed in June of 2009. It was discovered by accident when my Neurologist found something he didn't like while treating me for Perpheral Neuropathy. Turns out, the neuropathy was an outgrowth of the cancer.
My treatment regimen goes like this. Rituxan, 860mg, intravenously, once every three months. Doc says the Rituxan stays in the body for 3 months, so any more is useless. My initial IgM level was 7,900, instead of the 350 it is supposed to be. When the Rituxan didn't do the job quickly enough, the Doc added decadron, a steroid. This I take every Friday AM. I then stay up most of the weekend, cause that much steroid just will not let you sleep. Then, he added alkeran, which is chemo, which I take once a month for five days, at the five pill a day dose. This knocks the socks off of you, and if a fly landed on your nose, you'd just let him be. You don't have the energy, or the will, to slap him off.
That combination of meds has dropped the IgM level down to 2,900, and falling.
The Doc has taken me off of everything but Rituxan. He is just going to watch to see how far the level drops. Can't go too far, or you'll have no immune system, and will have to spend a couple of weeks in isolation in a hospital until your backbone produces enough new cells to give you back your immune system.
When, and if, the IgM level drops to an acceptable level, there will always be a maintenance dose of Rituxan every three to six months, as Waldenstroms is not curable. But, thank God, it is treatable.
I have talked to people on other sites who have had this cancer, and have successfully treated it, and have lived, so far, for 10 to 15 years, and are doing fine. I hope that by the time I spend 10 years chasing this thing, there will be a cure for it, and for all cancers. From what I've read, they are chasing this disease harder than just about any other illness.
God be with each of you. After all, He determines the outcome, we don't.
Tom

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