My mother was recently diagnosed with Stage 1E CNS Lumphoma. She had a mass in her cerebellum that was causing her severe balance issues, dizziness, and nausea. As they could not reach a diagnosis any other way, they ended up doing a biopsy and resection. They were able to remove some of the tumor But not all of it. The treatment options are six rounds of high-dose chemotherapy, which has a 20 to 50% chance of curing the cancer, or radiation to treat the cancer but it can’t eradicate it. Fortunately, as far as we know, the brain tumor is the primary tumor, and all scans and a lumbar puncture have not shown cancer elsewhere.
she is and, otherwise, very healthy and active 81 year old. She very much is in favor of the chemo as it is the only choice for a potential cure. I am looking for input about people’s experience, in general, as well as what to expect from chemo, both during the process and after affects. I don’t know how much she is understanding all the information being presented to her,’particularly about the risks involved, and I want to make sure we all have realistic expectations before we make a final decision. Also, I am really struggling with how much to share with her about The negative affects and the less than positive outcome possibilities. I don’t want her to go into a state of despair before we even begin treatment, but I want her to realize what the possibilities are and what the possibilities aren’t .
Also, if anyone has chosen different treatment, I would appreciate hearing about that, as well
Thank you for reading. I appreciate any and all input about how to navigate this with her.
Hi again SuzieQ48073 and well done navigating across to this corner of the site.
As I said before I don't have CNS Lymphoma, but a rare incurable type of NHL but so far the treatments that have been available have kept me ahead of my cancer. Like my type of NHL your mum's CNS NHL is on the rare side but can be treated effectively.
There have been a few folks post who have CNS NHL or are supporting family so let's see if they pick up on your post.
You can also use the search tool 
near the top, put in CNS Lymphoma, select 'Anywhere' and this will bring up the older posts and as always you can hit reply and see if the members are still using the site.
To widen your support base you may also want to check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos
As for the Chemotherapy Treatment everyone reacts ever so differently. I had over 750hrs of very strong chemo spread over my 6 x 6 day/5 night cycles and honestly I did ok.
Yes I lots my hair, Nausea may be a challenge, but remember she must not to suffer in silence as there are lots of tools available - but her team need to know how she is getting on as at time it is trial and error to get the right one.
Cancer-related fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue..... the less she does the longer the recovery.
There is a real Risk of infection so care needs to be taken to control infection contacts.
I would also highlight the importance of drinking lots of water as this will flush out all the toxins released by the chemo and protects the kidneys.
This link will help you get her ready for the treatment Top Tips for the day of your Chemotherapy
As there are over 60 types of Lymphoma the journey's will be ever so different - you can see my journey using the link at the bottom of my posts.
Always around to chat or answer questions as best as I can ((hugs))
