Had a real set-back last week and feeling so anxious today. We’ve been awaiting the results for some of the tests on the biopsies they took on 23 Dec, the so-called FISH tests. Well, they’ve come through now and the histology report indicates I have ‘Double-hit Lymphoma’ which is quite a rare kind or sub-set of the previously diagnosed DLBCL. All this being a transformation from my Follicular Lymphoma I was treated for over the last six months. So many types and variants! Bottom line is, this is more difficult to treat and the treatments are even more complex and intensive.
We’re going in to see my consultant and specialist nurse today, when we’ll find out more about the disease and treatments, then it’s their MDT on Wednesday. My nurse said they might propose DA-EPOCH-R or R-CODOX-M with R-IVAC, but they’ll discuss further with us, prior to consenting. My second round of R-CHOP that was due on Wednesday is now cancelled and it’s likely I’ll start on the new treatment on Monday 7th. Also, this time I’ll be staying in the hospital for at least a week for the treatment. That’s it in a nutshell. Obviously it’s not good news and a further serious development. We of course are very frightened and anxious again, as we have a lot of questions, but we do have great faith in the medical team and with their support we will beat this!
Hi again Jona M and sorry to hear about your Double Hit Lymphoma. There have been a number of folks come through the group over the years who were in the same position so let’s see if they are looking in.
The positive in all this, yes there are…… is there are very effective treatments for this. Your team will carefully review everything and will then recommend the best route for your presentation.
I went straight to R-EPOCH…… it’s basically the same as DA-EPOCH-R but was not DA (Dose Adjusted). So my treatment plan was never changed, I had no mid treatment scan it was being used to do a job and it did.
I had 6 cycles that had me on Hopital 6 days (5 nights) on my IVs 24/7……. So I did over 750hrs by the time ai was finished.
On the whole I did ok. These treatments that have been mentioned are strong but slow burn treatment that continually works on your growth areas.
For me Fatigue was the main problem, I never was sick but yes felt like it, but the meds did a great job.
If you have looked at my story (hit my community name) the R-EPOCH was used as a steppingstone for me to go on to Stem Cell Transplant has anything like this or CAR-T treatment been mentioned tinned?
It is very overwhelming but do try and control the ‘impending doom’ thoughts as there is lots of positive treatments on the table that can provide the outcome you are looking for.
Always happy to chat ((hugs))
…… the waiting can be hard. I had to ‘suffer’ (I was in a lot of pain) a good month until my re-scans were done, core biopsy done and tested and even once all the results were in my local team insisted they send my case to be reviewed by a consultant in London who had experience in treating my specific type of NHL……. but as the saying goes, once started ‘It did what is says on the tin’ 
. . you certainly are a role model for us all Mike. Thankyou
We do this together 
((hugs))
You may find the link below from the Lymphoma Action Website helpful.
Thanks Mike, I have seen the Lymphoma Action info. on this - their website is a fantastic resource for those who are wanting to understand the many different types of Lymphoma and the treatments. My go-to for info. . . . along with Macmillan of course
Yes the information and support on the LA site is great. Have you considered joining in with one of our monthly regional Lymphoma Zoom Support Groups as they are a great place to talk feely with others.
Thanks for the pointer to the Zoom Groups Mike. Just registered
I have also signed up for a Lymphoma Action ‘Live Your Life’ Workshop, that’s happening in a couple of weeks time, which sounds interesting.
Also, this Thursday, the company I work for has a ‘cancer basics’ webinar being presented by Cancer Research UK, so there’s a lot going on! CRUK are our nominated charity and there’s a lot of good fund raising projects happening across the company. I’m doing a 1,000 mile cycle challenge over 2022 for CRUK and so far I’m on target at the end of month one. I’m determined to keep it up, knowing that it’s going to get tough for the next few months 
Great, well done, you will see on the LA site under the Support for You section there are a number of ways of centecting with people - doing this will help broden your support platform and you may actually bump into me again
Good on you signing up for the challenge, these types of focus can help you push through.
