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CNS Lymphoma newly diagnosis-ed need only 27, need to know your treatments

jaycc
Posts: 136
Joined: Jul 2012

Hi,

Posting for another, just diagnosis-ed with CNS Lymphoma, with comprised immune system.

Where are the specialist, where are you being treated.

Anyone use Penn, what did you think of the doctors ?

This rare cancer, is going to be a rollacoaster, any insites would be appreciated.

Thanks Jay

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hi Jaycc,

I live in Sweden.

You can see to that the disease is properly diagnosed, and you can ask the doctors about the best treatment.

I was diagnosed with PCNSL in my cerebellum in March 2012. I had headache.

First I got high dose cortisone, and the tumour shrank.

Then I got three rounds of four day chemo (Methotrexate and other stuff) and antibody treatment. The tumour vanished completely.

To remove possible micrometastases (invisible daughter tumours), my stem cells were collected, I got a five day high dose chemo treatment according to the BEAM scheme and then an autologous stem cell transplant. The high dose chemo was tough, I became weak and my stomach took three months to recover.

After that, I took Temodar chemo pills for four days every month for two years. This was recently completed.

Now I am awaiting the result of an MRI to check that I am cancer free.

I am perhaps a little weaker than before the disease, but this is also dependant of increasing age (71). I lead a normal life, and my wife and I have made long travels after my disease.

Good luck!

Sten

leprechaun2
Posts: 79
Joined: Jul 2011

This is the most treatable brain cancer. My husband was diagnosed in 2008. He is still here although he has difficulties after so many treatments. My friend's husband was also treated there and he has been cancer-free almost 5 yrs. 

God bless you on this journey. 

 

Btw, treatment involved methotrexate, vincristine and procarbazine with rituxan and whole brain radiation. Husband followed with sten cell transplant. Her husband didn't need it!

 

Mary N.
Posts: 100
Joined: Jun 2013

I was treated in Fresno but in consultation with Stanford.  I was first given steriods and went to Stanford to see if there was a clinical trial - none that I would be good for.  I was given high dose Methotraxate and Rituxan every 6 weeks at first.  First time had horrible reaction with kidney shut down but in 6 weeks turmors were half in size.  My doc changed protocol and I didn't start MTX until my urine ph was above 8.5 and I didn't have any difficulty with it.  Did this every 6 weeks for 9 months when tumors were both gone.  My doc continued on with treatment for 4 1/2 years going first to two months, than every three months then every four months.  I was 70 when diagnosed and not a candidate for stem cell transplant and I think that is why he treated me for so long.  I have been free of chemo for 9 months and all is well so far.  I hope your friend gets good care.  (My immune system was not compromised.)

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