Diagnosed with Double-Hit Lymphoma after 8 years remission from Follicular Lymphoma.

crispi
Occasional Contributor

Diagnosed with Double-Hit Lymphoma after 8 years remission from Follicular Lymphoma.

After 8 wonderful years of remission from Stage 4 Follicular Lymphoma, within 3 weeks I had gone from being care-free, cycling to work, cycling around, feeling good, to hearing the news that first that a CT scan - whilst I was waiting for biopsy results - showed that I had a cricket-ball sized tumour in my abdomen. Then the biopsy came back positive for not follicular lymphoma, but DLBCL. PET scan confirmed a 18cm tumour, plus little tumours in the groin and arm pits.

 

Then the biopsy was double checked, and it came back a week later as Double Hit Lymphoma (MYC+BCL2)

 

I'm currently in day 11 of round 1 of R-EPOCH, and I'm knackered (from the chemo). No nausea really, but just having no energy at all. Up to a month ago, I was cycling 500-600km  a week.

 

Still somewhat in shock. And I'm worried about the long term prognosis (I'm 47).

 

3 REPLIES 3
sch
Valued Contributor

Re: Diagnosed with Double-Hit Lymphoma after 8 years remission from Follicular Lymphoma.

Hi crispi,

I'm sorry to hear this.

It's a shock at the best of times, but doubly so when you're leading such an active and healthy life style.

How many rounds of chemo do you need, and how long is each round?

-s

Reply
0 Kudos
crispi
Occasional Contributor

Re: Diagnosed with Double-Hit Lymphoma after 8 years remission from Follicular Lymphoma.

4 rounds of R-EPOCH. each cycle is 21 days.
Reply
0 Kudos
Jan2
New Member

Re: Diagnosed with Double-Hit Lymphoma after 8 years remission from Follicular Lymphoma.

So sorry to hear this, hope all goes well for you. Cancer is such an unpredictable disease, it seems as if you were doing all the right things by exercising.

Best wishes!

 

Post new topic
Talk to a health professional
Cancer Council support and information 13 11 20Mon - Fri 9am - 5pm
Cancer Information and Support

Online resources and support

Access information about support services, online resources and a range of other materials.

Caring for someone with cancer?

Find out what resources and support services are available to assist you.