Hello Thowels

I'm sorry to hear about your Dad's recent diagnosis. I'm sure it's a difficult time for you all and it's understandable that your Dad may be concerned about his upcoming treatment. 

I've had a look through the forum and whilst I can't see that we have any members currently active who have had the same diagnosis or DA-EPOCH treatment, we do have some posts from a few years ago that you may want to read. If you use the forum search function to look for "plasmablastic lymphoma" or "DA-EPOCH" you should see a number of posts in the results. 

Alternatively, you're most welcome to give our team of nruses a call. I'm sure they will try to help with any information or advice that they can offer. If you'd like to chat with them they're available Monday to Friday from 9 am to 5 pm on 0808 800 4040. 

I hope that whatever treatment route he decides to take, that all goes smoothly. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hi,

I'm male,36 and I have PBL. I am immunosuppressed. Found PBL in July 2020 in my illeum.

After a bowel resection and 3 cycles of CHOP I was found to be in remission from a PET scan in December 2020.

Relapsed occurred around March 2022. Had 3 rounds of VTd-PACE starting in April 2022. PET scan showed CMR in July 2022.

In preparation for an autologous stem cell transplant was given two days of Etoposide in September 2022.

What was perecieved to be a fungal infection of my chest ensued and a  relapse occurred again in Oct/Nov 2022. After a PET scan and shoulder muscle biopsy showed this.

Started Thalidomide and Dexamethasone combination in November 2022. Within 48hrs noticed an improvement in symptoms. Reduction of pain, no fevers, rigors and little to no sweats.

January 2023 my LDH continues to fall and I am largely well, with little in the way of side effects from the regime. From my understanding I am now being treated more like a multiple myeloma patient as the two diseases are similar and this treatment is far less aggressive than other chemotherapies I've had.