topic Re: Diagnosed with Double-Hit Lymphoma after 8 years remission from Follicular Lymphoma. in I've just been diagnosed

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

crispi — Mon, 15 Jul 2019 12:53:24 GMT

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).

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

sch — Thu, 25 Jul 2019 13:06:47 GMT

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

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

crispi — Thu, 25 Jul 2019 23:09:39 GMT

4 rounds of R-EPOCH. each cycle is 21 days.

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

Jan2 — Fri, 26 Jul 2019 02:38:36 GMT

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!