CNS Lymphoma

Hi SuzieQ48073 and a warm welcome to the Community although I am so sorry to hear about your mum.

I am Mike and I help out around our various Lymphoma groups…… I don’t normally post in this group but I just noticed your post and thought I would make contact.

I don’t have CNS Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different from your mum’s I do appreciate the challenges of this journey rather well.

It’s very important to understand that CNS lymphoma is rather different from Brain Cancer as the growth areas your mum has is not a Solid Tumour as blood cancer tumours are rather different.

In most Lymphomas the most effective tool is chemotherapy as this breaks down and hopefully eradicates the tumour and rogue cancer cells from her body.

There have had been a number of folks with CNS Lymphoma or people supporting family who have CNS Lymphoma post in our general Non-Hodgkin lymphoma support group.

Do consider joining the group, you can copy and paste the text from this post into one on the NHL group.

I will keep an eye open for you.

Thank you so much, Mike, for reaching out. I am still figuring all this out and I appreciate you pointing me in the right direction.

Hi Suzie,

I’m so sorry that you’re going through this. CNSL is very scary and I know exactly where you’re coming from. My dad (66) was diagnosed with CNSL in April 2022 and completed his MT-R chemo protocol (high dose methotrexate, temozolomide, rituximab) in September. He had a complete response to the treatment and has been in remission with no evidence of disease since. Everyone responds differently to the chemo, but for my dad he said it wasn’t that bad. You have to stay in the hospital for about a week (it depends on how long it takes for your body to get rid of the methotrexate) and then you’re out for a week and then back in. Usually for a minimum of 7 cycles. My dad really didn’t have many side effects from the chemo & if he did the drs gave him medicine to solve anything. My dads biggest problem was how the methotrexate effected his kidneys. It’s basically a poison and your kidneys need to filter it out of your body and it’s in high dose so it really beats up your kidneys. This is why it is harder for older patients to complete the treatment. My dad was able to complete 7 cycles but he did end up with acute kidney disease, which sounds worse than it is and honestly it was worth it to save his life. The MT-R chemo is considered induction chemo, which is basically to get rid of the cancer. After you complete induction chemo and there isn’t evidence of disease, you complete consolidation which could be stem cell transplant or consolidation chemo. My dad’s doctors chose consolidation chemo, which is another high dose type of chemo that basically nukes your immune system and your body has to build back the majority of its blood cells. This was an inpatient stay of about a full month. Since your mom is 81 I would assume she would probably do consolidation chemo as well, stem cell is very hard on your body and can be toxic and as far as I’ve read it’s usually not used on older patients. From researching the disease, it’s pretty unusual for treatment to involve resection of the tumor. My best advice is to find a dr that has had patients with CNSL before, it’s a rare disease. It’s important to act fast and get treatment as soon as possible because it’s so aggressive.  I’m hoping for the best for your mom and know that there is hope.

Thank you so much for your thoughtful reply. How wonderful that your dad had such a good response to the chemo. May I ask what he does to manage his kidney disease? 
The oncologist told us that it would likely be six rounds of MTX. 1 week admission per round with 3-4 weeks between. They have not mentioned anything about consolidation chemo or stem cell transplant. Is this something they planned from the beginning, or didn’t they determine this course of treatment as you went along?

I’m glad I can shed some light on our experience, I know it was rather hard to find information on CNSL because it is so rare. In terms of the kidney disease there is actually nothing to do aside from eating right, exercising and not excessively drinking alcohol. Stage II kidney disease is actually semi common in older adults and some people don’t even know they have it since it doesn’t really present any symptoms. Basically it is just the kidney being damaged and there is nothing you can do to undo that damage, just live a healthy life so that it doesn’t suffer any further. 

In terms of the protocol, I think a lot of doctors will have different ideas of how to treat it. The protocol my dads team used was pioneered by Dr. James Rubenstein out of UCSF in California, he’s a top researcher for PCNSL. You should google him, he has medical journals that outline how he treats PCNSL that are relatively easy to understand as a layman (you will still probably have to google some of the medical jargon but it is very informative).  We got a second opinion at UCLA oncology and they said they would use the same protocol, plus or a minus a few things but after researching and getting two top doctors opinions we felt comfortable trusting them. There may be the added weeks between your moms treatment because of her age, the methotrexate is very hard on your body and she may need longer to recover in between treatments. You should ask your doctors about the length in between to understand why they’ve made that decision. I would also ask why they’ve chose 6 cycles vs 7 (which is what Dr. Rubenstein suggests as minimum). Some people who can stand the MTX better even have more cycles. I would also ask about consolidation options as well. When we first started the treatments our doctors didn’t mention consolidation either, I think they tend to focus on the task at hand and don’t bother going over future treatments because it’s far off and you need to see how the induction chemo works for you first. But just for a peace of mind and to show you’re invested in your mothers proper care, I would ask about. I would also take notes whenever you have a doctor appointment or speak to doctors. I wasn’t allowed at the center during the chemo but any time a doctor came in my dad would call me so I could take notes and understand how the treatments were going/what’s coming up etc. It’s hard to remember everything they say and some of it is in doctor-ese where you may have to google it later to even know what questions to ask. I’m no expert but I did a lot of research/read as much as I could soI will try to give you any info I can. 

EDIT:

Oh and I wanted to add that induction chemo is what gets rid of the cancer and the consolidation is what is used to try to ensure that it doesn’t come back. Just to clarify!

Thank you, once again. Where was your dad treated? We live in Michigan in the US.

My dad was treated at the USC Norris Cancer Center in Los Angeles. On another PCNSL forum I’ve seen people mentioned Dr. Yoshie Umemura in Ann Arbor, MI having treated PCNSL. She completed a fellowship in neuro oncology at Memorial Sloan Kettering in NYC. MSK is one of the best hospitals in the world for treating PCNSL. I’m not sure if you’re near Ann Arbor, but having a doctor that has treated PCNSL is pretty important to get the best care. If you’re not near Ann Arbor, you may even contact them via telehealth as a second opinion or to assist your doctor team. A good doctor won’t be offended by you getting a second opinion or seeking the knowledge of other doctors. This disease is tough and you want the best to save your mom’s life. Hope that helps!

I’m so sorry for the delayed response, but I had to come back and thank you for taking the time to share your knowledge with me. We actually had an appointment this morning at the University of Michigan (which is 45 minutes from home) with Dr. Clarke. Dr. Umemura is his boss. We were amazed by his expertise. Their protocol  sounds very much in line with what you described for your father. Mom was set to start treatment tomorrow at our local hospital, but we now plan to start treatment on Wednesday at U of MI instead. We feel much more optimistic and hopeful that she will get the very best treatment. Thank you, again, for pointing me in the right direction. We are incredibly grateful.

Suzie, sorry I didn’t get on here for awhile. I’m glad you were able to find good help. How is your mom doing through the treatment so far? I hope she’s doing well.

Hi, there. Mom is doing well. She just finished her fourth round of chemo. Unfortunately, during her second round she developed pneumonia, so we had to delay round three by two week but we’re back on track now. The MRIs show the cancer shrinking, so we keep going forward. She is scheduled for two more rounds, then we’ll do another MRI to see if rounds 7 and 8 will be needed. They won’t do more than 8. We know that a consolidation phase will be required but have not yet discussed the details of what that might look like. 

Mom is tolerating the chemo, itself, quite well. However, given her age and the extended hospital stays she’s endured, her strengths and stamina have really taken a hit. She was super healthy, active and independent before all of this, so this has been really hard on her (and those of us now having to help care for her). We are all buoyed, though, that the chemo seems to be doing its job and hope that, once the chemo is finally done, she can make some real progress with PT. Right now it’s hard for her to make any real strides when she’s in and out of the hospital so often. How did your dad do in that regard? How is doing now?