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I have diffuse large B cell in the brain. Anyone else out there?

Mary N.
Posts: 85
Joined: Jun 2013

Jan. 2010 it was discovered when I felt weak and seemed to black out and was rushed to emergancey that I had two brain tumors.  They did many tests, most of which I don't remember and it ended up with a bioposy and it was non-hodgkins lynphoma large diffuse B Cell.  I eventually ended up with a consult with Stanford and they said they would do what my doc was proposing and I began treatment with high dose MYX and Rutexin.  i almost died because my kidneys decided not to operate but in a couple of weeks was out of the hospital and they said that I would lose about 15 percent of my kidney function.  However in 6 weeks my kindeys were 100 percent and my tumors had shrunk by 50 percent.  We decided to do the high dose MTX again and this time he didn't start the chemo until I had a ph of 8.5 and kept it at that the whole time I was in the hospital.  We have continued with this proceedure for the last three years.  After about 8 months both tumors were gone and MRI's each 4 months have said they are stable.  I now get HDMTX every four months and monthly Rituxin.  I seem to be getting stronger every year.  I would really like to find others with what I have.  I'm 73 and I know my doc is surprised that I am still here but is very supportive and it seems terribly protective.  I have been working part time for the last three years as a MFT but have decided that the drive to work 1 1/4 hours each way is too much and am going to be retired and get to visit my grandchildren more often.  I am finding that surviving has its own difficulties and I get pretty anxious as the 4 month MRI's and hospital stay come around.  I would love to hear from some of you.

 

illead's picture
illead
Posts: 534
Joined: Aug 2012

Our very best to you.  Sounds like you are doing so well.  I am up late so thought I would get this off.  I haven't been on in a few weeks and the site has been a little hard to maneuver, but know that soon you will get lots of support.  This is a great group.  My husband has Mantle Cell lym but is in remission and very healthy.  There are many here who have the same as you and are doing quite well, so I am sure you will hear from them.  We are from No CA also (near Sac) and our cancer center is through UC Davis.  Think we are both fortunate with two great hospitals.  Our thoughts are with you as you continue your fight and also continue your life, especially with those grandchildren. Bill & Becky

Mary N.
Posts: 85
Joined: Jun 2013

I am doing well although I guess that it is a surprise to some.  My doc actually apologized for being so neg.  I told him that when he said anything I would not pay attention and remembered that they had said at Stanford that they might be able to be treated me.  Stanford agreed with my treatment and my doc is in contact with them often. I hope on this forum that there will be someone who has what I have.  I do thank you for your concern and post.  I guess that no one is exactly the same as anyone else but I have never found anyone who has what I have to talk with.  mary

jimwins's picture
jimwins
Posts: 2038
Joined: Aug 2011

Hi Mary and welcome to the group!  Thank you for sharing your story - it's a good story and I'm glad you are doing well!

I can tell you about "anxious" - I'm sitting here waiting to be called for my CT scan today.  I know the anxiety is normal but that doesn't help any ;).  Fortunately I should get my results today so there won't be a long wait for that.

You will hear from many folks here who are wonderful people.  I think you are one cool lady by the way!

Hugs to you,

Jim

Mary N.
Posts: 85
Joined: Jun 2013

I sure understand the anxiety.  I hope that your scan turned out to be positive and if not then if you are like me, we go from there!  Best wishes!  Mary

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