CNS Lymphoma Newly diagnosed need advice and where are doctors with this specialty - HELP

jaycc

Hi,

I asking for 25 yr old. it looks like he may have CNS Lynphoma. Can survivors tell me how you are doing, and where are the Lymphoma specialist. We are in the Philadelphia area but can travel.

Can you tell us the questions we should be asking doctors ?

There is some existing comprise to the ammune system. fluid on the front of brain. Started with Strange weiryness lots of sleeping, then lost all memory but name. lessions impacting front of brain.  In Penn Presb neurtorolgy right now , MRI and spinal tap were negative,nuclear brain scan in not as conclusive as the doctors want. Heading for brain biopsy, they are bringing in an Onco team.

All comments apprecaited.

Jaycc

Sten

Experience from primary CNS lymphoma (PCNSL)

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

Mary N.

Hi, I am doing really well

Hi, I am doing really well after the five years.  I have gained back most but am still short on stamina.  At Stanford they stated that the most important part of treating CNSL is high dose MTX.  The docs need to make sure that their body is very alcholine before treatment is started.  It usually means 4 -5 days in hopital and for me follow up at home with leucovorian taken orally for sometimes up to a week.  They also gave leucovorian by IV every 6 hours after 24 hours of MTX.  Hoping for sucessful treatment for your friend.  I understand that most who get this have compromised immune systems however I didn't.  I was just old. ( 70)

country77

I was Diagnosed in 2020 at age 43 it presented in my left eye like a film over it spreading to both eyes by the time i made it in t hospital i originally seen eye dic prescribed steroid teo months later situation was worse i was sent to another specialist that took the visceral fluid from my left eye for testing i got my call stating i was suspect for lymphoma sent on to cancer center whete i fid my pet scan during the time wait i continued working eventually fell off the bucket truck at work fracturing two vertebrae on a Monday I crawled home layed in bed two days later went in for my pet results i had a 2.5cm mass on my brain go home n pack the hospital called me in the next day I spent the whole month of Oct I the hospital being diagnosed i refused the brain biopsy but during the hunt my back got fixed and due to some steroids they gave me my mass shrunk and they diagnosed me based on what info they had intended up doing 8 rounds high dose methotrexate plus pills at home 5 days cycles in hospital 9 days home in-between i gained 40 lbs during the process messed up one round didn't do hardly anything I should of but 3 yrs later I'm starting to view life different my rx ssys the chemo changed me in some ways I see it too. I'm way more quick to get frustrated extremely short on pity and my life views have grown so that I see no point in the daily struggle to gain possessions I'm not a healthy person by no means I eat like crap my consumption of illicit drugs hadn't seem to have had any effort and my doctor has explained absolutely nothing to me about my illness or any future prognosis short except routine monitoring is all I've gotten from him my resealed me to studies of lece expectancy but this dieses is more common in older folks extremely rare in you get patience it's like 50percent at five yrs 30percent at 10 and ten percent after ten yrs based on health and diet along with the age msking the difference from what I've found it's really not curable only prolonged but I'm hard headed and continue to live my life my way I have lost vision in my left eye i assume it's a cataract I had no pain during any of the process and I still am not myself pre chemo compared to post chemo my entire attitude has changed my drive is gone and I have no stamina sny idrad on improving my mentsl and physical state is appreciated

ShadyGuy

So sorry for that diagnosis. It is a very serious condition. I have no personal experience with it but I have a local person who was diagnosed about 10 years ago. It first came in his right eye. He was treated at Duke with great results. He is now NED. Duke has a separate large facility devoted exclusively to blood cancers. You may want to look into that if it is an option for you. Also its hard to do better tha MD Anderson in Texas. Best of luck.