I'm new-Does anyone know anthing about Primary CNS Lymphoma?

charles'mom · New User Joined: 18 Mar 2006 Posts: 2

Hi, My 27 yr. old son had a headache Feb. 20th that wouldn't go away.
He went to 2 urgent care facilities and was treated for a migraine even though he had never had a migraine before.
They gave him the pills first for the headache and nausea and then the shots.
Still had it Sat. Feb. 25th, when I then took him to the emergency room.
I insisted they do a CT scan as he had some vision changes in the past 2 years they just called uveitis (sp), and had a slight tremor to his right hand for 3-4 years. I tried to get him to go to a neurologist for that but he never did.
Anyhow, they definitely found something and then did an MRI.
We were told he had 3 larger brain lesions and other numerous ones scattered throughout the brain.
They admitted him and did neck, chest and abdomen CT's which were clear.
After surgery on Mon the 27th of Feb., the results came back as Primary Central Nervous System Lymphoma.
I have also heard them refer to it as B-Cell Lymphoma.
I don't know if there is a difference or not.
They tested him for HIV and AIDS which is supposedly common among this group.
He was very upset about that as he is marrried with a 5 yr. old.
It came back negative.
He has had a lot of problem with brain swelling which has sent him back to ICU.
They treated it with Manitol which is a diuretic that works well on removing extra fluid from the brain.
It worked very well.
Tues. the 7th of March he started his 1st round of Methotrexate.
The brain swelled again, and again he went back to ICU and was successfully treated with the Manitol.
He was finally released just this Thurs. the 16th.
He has to go back in the 21st to go through the 2nd round of chemo.
He is being treated with the chemo in hospital as follows:
4 hours of Methotrexate, then 24 hours later they give him Leukofuerin (sp) 12 times, 6 hours apart.

Is anyone else familiar with this form of brain cancer, it's survival rates, best treatment options, etc.

His Oncologist has only treated 1 other patient, it's that rare.
He is consulting with Sloane Kitterling Cancer Specialists in New York.

Any help would be greatly appreciated.
Thanks, Charles' Mom
_________________
Son diagnosed Sat. Feb. 25th, 2006.
Surgery Mon. Feb. 27th, 2006.
First Methotrexate chemo treatment- Tues. March 7th, 2006.

charles'mom · New User Joined: 18 Mar 2006 Posts: 2

Oh, also, they removed a ping pong ball size tumor from the right temporal lobe.
They couldn't remove any more.
I have seen the CT scans- before and after surgery and I have to say, they don't look good.
He has a large area of abnormal brain cells.
I of course am extremely worried.
_________________
Son diagnosed Sat. Feb. 25th, 2006.
Surgery Mon. Feb. 27th, 2006.
First Methotrexate chemo treatment- Tues. March 7th, 2006.

missymet31

Hello Charle's Mom,

My husband has just been diagnosed with the same as you charles. He is in Sloan Kettering right now waiting for his first chemo treatment. It's true that the disease is rare...you should go to a specialist. I don't know where you're from, but if it's possible, go to Sloan. There is a dr there named Lisa DeAngelis who pioneered a new chemo cocktail that has been successful. The younger the patient, the better. My husband also had surgery since a different hospital thought it was an astrocytoma, but once the path report came back, it was PCNSL. The treatment we are going to do is as follows: Every 10 days in the hospital for 3-5 days to get a chemo cocktail of R - M- V- P. 4 different types of chemo. The "M" being the Methotrexate (which is the most important one in this treatment). This will go on for 5 -7 cycles, then we will do a low dose radiation treatment and finally take an MRI to see the results. They tell us that 90% of people respond to the chemo. Please let me know how things go....It's hard enough with a spouse being sick, but your child no matter how old....it's just too cruel. I'm so sorry. We have 2 children, ages 13, and 15 and I am so afraid for them and their future. Please post back. I have been looking for someone with this disease.

	Cancer Forums Forum Index -> Brain Tumors Forum	All times are GMT - 5 Hours
Page 1 of 1

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others