Primary CNS Lymphoma

packvic00 said:

Primary CNS Lymphoma
It is good to see some updated discussion on PCNS lymphoma.
Although the case is VASTLY different from yours, ziegs22, my 73 year-old mother was diagnosed with it in 2/11 after fighting vertigo, vomiting and unsteadiness for almost 10 months. Many specialists were seen and it took several falls and an ER visit to finally find the tumor. Everything I have read online is very negative in terms of prognosis, part of the reason I am sharing at this stage.
Her primary lesion is in the cerebellum. She is in good health otherwise. After undergoing 5 rounds of methotrexate in-patient, she also had radiation just aimed at the cerebellum in an effort to reduce neuro-cognitive decline associated with WBRT in the elderly.
Again, these stats don't respond to your question due to age difference, but maybe helpful to others who look online seeking some answers. Her oncologist told us the following for long term prognosis:
"Prognosis is variable, but for someone her age and in otherwise good medical condition, would expect about 80% alive in 2 years, 50% alive in 4 years, 30% alive in 6 years. And remember people in the 70s and 80s can die from other things too. Regarding remissions, I would estimate about 60-70% chance of achieving remission and about half of those patient maintain remission long term (3-5 years or more). These figures are all specific to PCNSL. If relapse occurs, there are treatment options but I would reserve that discussion for the setting of a recurrence."
She is doing quite well, has resumed driving and has been officially told she is in remission. Her kidneys did suffer a bit as a result of the chemo, but seem to have stablized. We are optimistic. I spoke with a colleague whose 79 year old mother had the same diagnosis and she barely made it through the chemo before she developed pneumonia and died. It is so variable. I will try to update this as we do expect more developments, but hope she can fight off recurrence.

My mother's case sound very similar to your mother's - but I have been struggling to get her the right treatment.

My mom started with dizziness and nausea in Aug 2015, the US doctors focused on Colonscopy/Endoscopy and misdiagnosed her issues as Hiatal Hernia and allowed her to take your bi-anual trip to India.  While in India she continued to have diziness and after a major fall ended up in a hospital Jan 25-Feb20 - again misdiagnosed as Limbic Encephalitis.

On Feb 26, after I tranfered my mother against the treating doctor's recommendations, they diagnosed CNS Lymphoma.  By the time I brought my mom back home to the US - Fairfax Hospital for the biopsy the doctors refused to give her Chemo; she was given 10 doses of whole head Radiation and sent home for Hospice care.

Prior to Aug 2015 - she was hiking, running around, and even working part time giving Massages at Massage Envy - her second career after retiring.

Based on what the doctors are telling me I have no hope of remission of the CNS Lymphoma for my mother.

At miinum if I can improve her cognitive ability to speak, swallow or move her hands - I would be sooooo greatful.

Is there any specialist that you can suggest that can help with this aspect?

Younique said:

victello martinez

i am sorry to in form the group that Vic passed away during his stem cell treatment. I didnt hear from him in a long time and his wife finally informed me.

He loved his family.  I am so sorry for their loss.

My husband was diagnosed with Primary CNS Brain Lymphoma on Father's Day this year.  PET Scan did not reveal any other cancer. He has been receiving treatment from Stanford.  The first 2 rounds he was receiving heavy doses of Methotrexate but it was very hard on his kidneys and he was having a hard time ridding the chemo.  It has been one month and his level is still .05.  On treatment #3 they switched him to Ara C/Cytarabine  We have been home an entire week and He is unable to eat, drink, or stay awake.  In one week he might have drank a gallon of fluid.  He feel nauseas all the time.  He has lost 8 pounds in less than a week.  It has been two nights and he can't do his Neuprogen shots.  I am so afraid that he is going to dehydrate and not be able to receive IV treatment next week.  I am a nervous wreck and for the past two days all I can do is cry openly when I look at him.  He can hold a conversation but then he tires quickly.  Can someone tell me if anyone else experienced these side effects on Ara C?

After 7 months of chemo, Dr. Alizadeh from Stanford has said we are ready to meet with Dr. James Rubenstein at UCSF because we are ready for Maintenance.  Met with Dr. Rubenstein and after 4 short month my husband has been told we are in Remission or as he says, NED (No evidence of disease).  He will continue to take Revlimid for maintenance but in a couple of weeks the Port is coming out and we will meet once again with our doctors in Stanford and God willing, say good bye and Thank You.  For anyone taking Revlimid, I would like to share that this drug is hard on the body.  Some side effects are rash (as the body gets use to the drug the rash will subside).  Some mental confusion and foggy brain.  Very little energy but the best news is that if it can help keep the cancer from returning then that is nothing compared to all the chemo treatments he has had to endure.  CNS is a curable cancer but sometimes the brain is not as strong as it use to be.  Sometimes it is very frustrating for me as his physical being still looks good and strong but his mental and emotion state is very different.  The doctors warned me that he may never be that person I knew prior to the Brain Cancer. If you have a story to share, please do as I check this site regularly for updates. 

Hi!  I haven't checked in here for quite a while, but I thought I'd give an update, and hopefully a positive note for others who have been diagnosed for PCNS lymphoma.  I am now 5 years out from my stem cell transplant, and am having no real issues.  When I get fatigued, I do have a bit of tingling in my left leg for some reason, but it is not debilitating in any way.  Have run several 10 k races and put in lots of skiing in the last 2 winters.  Hope you all are doing well, and that treatments & prognosis are good.

Hi there,

A family member of mine (age 70's, male) has been diagnosed with PCNSL for about a year and treatment doesn't seem to be working, even though we have tried twice. The tumor seems to be coming back and this is the third time. After reading your posts, it seems like the ASCT has been successful for so many of you and I was wondering how much of a financial burden this was and how you guys went about the treatment. I heard that it is not paid for by Medicare. I would love to pass this info on to my relatives, this is our last hope otherwise we're considering hospice so any information would be so helpful. Please let me know as soon as possible, I'll be checking this often. 

Thank you!

In Aug 2014 I was diagnosed with testicular lymphoma and tested and treated for cns lymphoma. . I had six rounds of LyCHOPR and three rounds of methotrexate. Now, (May 18, 2017)I had been suffering from brutal headaches for a couple weeks and checked into emergency where they did a CT scan and found a tumor approx 6cm long. They removed a portion of the tumor May 24th and have me scheduled for further rounds of methotrexate and then Autologous stem cell transplant three months from now.

qnbea76 said:

Brain Cancer

My boyfreind was diagnosed with T Cell Primary CNS in 1/19 he has had  crainotomy to remove the tumor, has completed treatments of Chemo  where it showed his markers were low and cancer was disaapearig, however after chemo treatments were  completed his lasted MRI Showed new lesions and regrowth.  He is now doing WBRT, which scare the crap out of me.  He is miserable cant eat ,  really quiet  and has no strength and sleeps all day.  He is supposed to also have a ASCT done, he has already done the harvesting but was put on hold due to the regrowth and new lesions.   I have been reading about all the wonderful outcomes of the ASCT  I pray that we get there. I am so afraid.  

qnbea76 : I'm very sorry to hear about your boyfriends diagnosis and regrowth of the lesions. I don't check in here often - how are things going now?