Newly Diagnosed High Grade, Diffuse Large B-Cell Lymphoma, CD5 Positive, Tumour is a Double Expressor

So sorry to hear this. I just learned that "double expressor" and "double hit" are differing forms of the Lymphoma. In the States, here is an article - but I suspect you have already familiarized yourself with it.

https://www.mdanderson.org/cancerwise/7-questions-about-double-hit-lymphoma--answered.h00-159464001.html

What course of action is planned? You can always ask about a clinical trial, as even double expressor is an unusual variety. It sounds as though it is the most favorable of the 'double' and 'triple' varieties. Doctor can certainly explain that. Otherwise, the treatment regimen, dosage and duration will affect how you feel going forward. 

Hi again Charles Astigabay ........ a diagnosis is a diagnosis and helps reduce the noise between the ears.

Over all my year on here and with Lymphoma Action I actually have not heard the term 'Double Expressor' used but plenty Double and Triple Hits...... but every day is a school day.

There have been a number of members who have had DLBCL Double Hit come through this group as well as our dedicated Diffuse large B-cell lymphoma group so let's see if they are still using the site.

There are also a good number with Double Hit and Triple Hit folks use the various Lymphoma Action........... Support Platforms.

Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

You may want to check out the Lymphoma Action Buddy Service as they may have a buddy who has walked the same or same-ish treatment journey.

They also have a Lymphoma helpline on 0808 808 5555 open every week day from 10 till 3. Give them a call as they may well have some up to date info.

From the people I have talked with who have had treatment for Double-Hit........ the R-EPOCH treatment regime is often used (I had R-EPOCH) and a few people have went on to have Allo (donour ) Stem Cell Transplants....... and more recently CAR-T therapy.

As for your appointment these links have lits of various questions my may want to look at using.

     Questions to ask your medical team about Lymphoma

     Top tips for getting the best from your appointments

Do come back to us once you know more.

Hi Mike,

They are trying to get clinical approval to use Pola-R-CHP. I'm due to have a Brain MRI, Ophthalmic investigation to check for tumours behind the eyeball, Echocardiogram and PET Scan in the next week then the chemo starts.

Charles

Hi Charles Astigabay treatments like or very similar to Pola-R-CHP are used a lot….. so I am a little surprised that your team need to get clinical approval - where are you being treated?

The tests are normal and let’s look for things to get started soon.

HI Mike, Its moving quickly now.  Just had Ophthalmic check and got Echocardiogram, Pet Scan and Brain MRI on Mon, Tue, Wed then Chemo should start the wek afterwards :-)

Charles

This is good news Charles…. the sooner you are started the sooner you are finished.

You may find this link helpful Top Tips for the day of your Chemotherapy

This treatment is just one of many types of regimes available......... as for the journey?.... if we line up 10 people on the same treatment for the same NHL we will get 10 different stories...... as the Side Effects of Treatments can be ever so different.

My great CNS initial words were “……Mike you can read all the information available and then start to catastrophise that every side effect that you have read about will happen but the reality is very often rather different….. take each day as it comes, celebrate the good days, endure the not so good day”…… and she was spot on.

I had the rather demanding R-EPOCH back in late 2013/2014 and honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment.

These are some of my simple tips.

Nausea may be a challenge, but remember you must not to suffer in silence as there are lots of tools available - but your team need to know how you are getting on as at times it is trial and error to get the right one. I was only sick once during my 750+ hrs of main chemo and this was down to a bad food choice…… I just wanted some takeaway food….. believe me it’s not a good idea.

Cancer-related fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue..... the less you do the longer the recovery.

There is a real Risk of infection so care needs to be taken to control infection contacts. Generally it takes about 48 to 72 hours for the body to break down and/or get rid of most chemo drugs.

But the effects of the chemo on growth areas and your general immune system will last for weeks and is important to remember that you may well be more open to infections at about days 7-14 as this tends to be the window when your immune system is at its lowest……. then the body recovers in time for the next cycle….. but the more chemo you have the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.

I was given this simple rule for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must contact the hospital.

I would also highlight the importance of drinking lots of water (the aim is 2 litres every day) as this will flush out all the toxins released by the chemo, protects the kidneys and keeps him well hydrated.

It is VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.

There is no need to be a hermit….. you can go out. I would meet up with friends in a quiet corner of a burden centre….. fresher is a good healer……. The main thing is check that folks visiting you at home are not carrying a bug…. coughing, sneezing etc….. and open the windows and let some fresh air in,

This link will help you get you ready for your treatment as it's a collection of suggestions from people who have been through treatment and are things that helped them during treatment...... Top Tips for the day of your Chemotherapy

Well, the regimen will be a fairly stout one, yet studies have shown its effectiveness in first line therapy - a huge advance from old line therapies. The advantage of the multi-drug regimens, aside from effectiveness, is that individual drug dosing may be altered, halted for a time or even stopped, depending upon how you tolerate it.

In all such things, I find it best to keep a healthy perspective. Everything which comes to pass must be weighed against what the lymphoma would otherwise accomplish. You do have a great advantage which few lymphoma patients have, and which none before 2020 had: the novel combination. 

It all sounds such a fright, but taken one day at a time, it will be readily accomplished.  

Thanks for that - by nature I am upbeat and always look for the fun side of things.  MDT approval was yesterday so should start my treatment plan within the next couple of weeks. So far the sitting and waiting has been worse than the disease.