Hello New diagnosis NHL, DCBCL primary breast

Hi Runninglady76 and a warm welcome to this corner of the Community although I am sorry to see you joining us.. I am Mike and I help out around our various Lymphoma groups. 

I don’t have DLBCL but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

As you may know Lymphoma is a blood cancer….. and basically can turn up anywhere in or on the body….. I have a rare 7 in a million type of Skin Lymphoma (CTCL) but I am now 8 years out from my last treatment, turned 68 last Nov and am living a great life.

Over my years helping on this Community but also on the various Lymphoma Action Support Platforms I have talked to a number of people who were in the exact same position with the same presentation and were treated successfully.

Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment….. so your safe go-to place for info.

Your DLBCL is a fast growing High-grade non-Hodgkin lymphoma but the initial aim of the R-CHOP is to cure.

You may already know that Staging in Lymphoma is rather different and unlike most other cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.

Staging in Lymphomas identifies

1) Where the Lymphoma is presenting in the body (it can be anywhere)

2) What is the best treatment approach and best treatment type for your presentation

3) How long your treatment needs to be.

As you get ready for your treatment you may find these two links helpful…..

Top tips for getting the best from your appointments

Top tips for the day of your chemotherapy

R-CHOP is one of many types of regimes available, it is widely used and very effective......... 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 big brother of R-CHOP - 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........ R-CHOP is nothing like this.

My story is rather complicated See my story as I had to go onto other treatments but as I said I am over 8 years out and doing great.

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 our immune system is at its lowest……. then the body recovers in time for your 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 to check that folks visiting you at home are not carrying a bug…. coughing, sneezing etc….. and open the windows abd let some fresh air in,

Always around to chat.

((hugs))

So sorry to hear of this. However, lymphoma in the breast - as bad as it is - is far better news than breast cancer. DLBCL is well known and treatment well established. Rituxan is known for melting tumours like ice cubes in the sun. The remainder of the R-CHOP regimen will not be as friendly, but is certainly tolerable.

I would suggest that you read up on DLBCL and its therapy. Knowledge is power as well as confidence. I view cancer as a challenge rather than a curse - for there are far worse illnesses. No one asks for it, but once it arrives, I think it is healthy to resolve to do what is needed to eradicate it.

You will have family, friends and co-workers to support and, once the new routine is in place, it will be yet another patient, oddly enough yourself, to nurse.

Hi I love the idea of it melting like an ice cube  

As at the moment its getting massive.

And yes the outlook does look promising so weirdly enough I'm grateful for that 

I've learnt not to do Dr Google already ! I should no better  ha 

I'm certainly doing my research and pulling my big girl pants up ! 

I agree I don't see it as a curse even after 8 days

More of an inconvenience  

And believe  it will make me stronger 

Thanks for your  supportive words 

As odd as it may sound, I consider the cancers I have endured to have been a blessing. Without them, my life had been daily drudgery; sand sifting through my fingers whilst I took no notice. The sudden shock of being confronted by my mortality sharpened my perception of the blessing that each day is. We are given but 24 hours at a time to endure.

Without my diagnoses, I would never have met the people I have, gone to the places or experienced the things which came to pass. Ever more to confound, I would do it again - I may indeed have to do it again. Yet, I was sustained through it all. 

EDIT: morTality

Thank-you! Poignant words 

And very true I'm sure 

I'm buckled up !!

I'm ready to start my journey:-)

Thanks for your support