Greetings,
I'm living with Small Cell Lymphocytic Lymphoma, Stage Three. I was diagnosed in 2019, so I have passed the five-year survival mark, whatever that means. It is a diagnosis that my oncologist euphemistically refers to as "Indolent" and is treating me with “watchful waiting”. I am wondering if there are others with the same type of NHL cancer and what treatment you have been given? How effective do you feel it has been and what are your next steps?
I have been plagued with minor infections this year, e.g., colds, sinusitis, etc.; however, beyond the discomfort of night sweats and enlarged lymph nodes I have been healthy.
Be well
Hi Patiently Waiting and a warm welcome to this corner of the Community although I am sorry to see folks joining us and sorry to hear about your SLL diagnosis and your journey to date.
I am Mike and I help out around our various Blood Cancer groups. I don’t have SLL but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
SLL comes under the umbrella of Low-grade non-Hodgkin lymphoma and I was basically on Active Monitoring (Watch and Wait) for about 14 years before my condition developed to a point that full on treatment was required to the point that I continued to work for 12 years in a demanding teaching job.
Do check out Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos…… basically all things relating to your condition....... pre, during and post treatment..
Lymphoma Action run regular Support Platforms...... I highly recommend these groups as there is nothing better than talking with others who have walked the journey. I also volunteer for Lymphoma Action and regularly talk with folks who are living with CLL, SLL and HCL.
They also have a great Lymphoma Action Buddy Service where you can be linked up with someone who has walked the same treatment journey.
They also have a helpline on 0808 808 5555 where the team will be on hand to give you some support - open every week day from 10 till 3.
I am always around to help more, just to chat and to answer questions.
