CancerCompass message board discussion started by tickledsilly on 4/12/2008 http://www.cancercompass.com/message-board/message/all,22983,0.htm Fri, 05 Sep 2008 00:00:00 GMT Fri, 05 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ The originally thought that it wasGBM4, so it was great news for us that it wasn't BUT from what I understand, the treatment of lymphoma could be as dangerous as the tumor itself. The dr said that patients tend to get dementia due to toxicisity of the brain during treatment. Freaky. Who knows what my mom will decide. The dr also said that this type of brain tumor is rare so there are not as many studies. Anyone with info or advice - please let me know. Thanks a bunch,Kelly tickledsilly Sat, 12 Apr 2008 00:00:00 GMT KellyI am sorry to hear of your mom's dx. I do not know anything about this form of brain cancer, but my suggestion is you and any other caretakers have to be the "experts."  Do research, research, research!  Make sure you get her to the best doctor available for this type of cancer.  Not all drs are created equally, and some drs. have more experience with specific cases than others. Hopefully, you have already found this person.My prayers are with you,Jackiekay jackiekay Sat, 12 Apr 2008 00:00:00 GMT I am so sorry your family must go through this.  My 59 yr old husband has had Primary CNS non-hodgkins lymphoma of the brain since April 2006.  He has undergone high dose methotrextate chemo, whole brain radiation and temodar.  The methotrextate failed after 5 cycles, the whole brain radiation along with temodar put him into complete remission July 2007.  He remains in complete remission.  If your mom decides to treat, find a neuro-oncologist, not just an oncologist.  I can't stress this enough.  At this time my husband has not shown any problems with his thinking, no dementia at all. He did have some short term memory problems at the end of radiation treatments but this seems to have vanished.   He has had slight problems with motor functions, but this presented at the onset of the tumors, not treatment.  Everyone is different and response to treatments will vary from person to person, age, general health at onset and many other individual factors.  You are correct this is a rare cancer, not nearly enough information or data is available on it or the treatments.  My husband functions well, we have a good quality of life, he is working very hard to increase his walking and working on some balance problems. He is able to get around quite well by himself.  So do not give up, treatments can be difficult at times but well worth the end result we have experienced.  What treatments are they recommending at this time?  If you have questions I will try to help.  Good luck to you and your mom.   daybyday Sun, 13 Apr 2008 00:00:00 GMT