Mother just diagnosed with high grade NHL

Hi Ben and welcome to the group, though sorry to read about your mother. Do you know what type of NHL she has been diagnosed with and which treatment regime they are giving her?

Back in 2009 I was diagnosed with stage 4b DLBC (diffused large B cell) I had 8 rounds of RCHOP and have been in remission since then. I have met online a number of people older than your mum, well in to their 80's who have had rchop and they all coped, so whilst not always easy I am sure your mother will cope with the treatment.

Any questions just ask and if you can give us a little more information then we can offer more specific advice and share relevant experiences.

regards

John  

Hi BenM and welcome to our little corner of the community and sorry to hear that your mum is going on the NHL Chemo rollercoaster.

Do you actually know the exact type of High Grade NHL she has as we can help better with this information.

It would also be helpful to know the exact name of the chemo regime she is going to be getting (there are a number) and how many cycles (treatments) she is having.

High Grade NHL is indeed very treatable and normally has good results. My type is a rare low grade. Diagnosed way back in 1999 and it took over 17 years for me to be put into any long term remission.

As to how her treatment journey will pan out is an unknown as each journey can be very different and of course reading the info will throw up all the side effects that ‘could’ happen.

I had 6 cycles of R-EPOCH and this required me to be in hospital for 5 days/nights on IV chemo 24/7 for over 120hrs at a time and I was never sick, yes had some stomach challenges and fatigue did build up over the cycles.

Many treatments are done as a day case so once we know more the folks who have had ‘that’ treatment can help more.

Keep posting as this is a good place to talk with folks who have the T shirt.

Hi Ben

i was diagnosed with high grade (stage 4) NHL in April last year & started 6 sessions of R-CHOP chemotherapy in May… the chemo was hard & I was admitted to the AMU of my local hospital after Chemo 4, 5 & 6… after No. 5 I was very poorly with neutropenic sepsis… BUT I got through it all & was pronounced clear in November… I was just 60 at diagnosis & neither fit nor generally healthy, so get your Mum to decide that, just like me, she’s not going to die of a cancer that doesn’t have to kill her… If she’s poorly after chemo don’t naturally just assume that it’s the chemo making her poorly: I did & nearly left it too late after No. 5… but I’m now back at work (& thriving, though it took me nearly a year to be able to eat properly!)

Im sending love & hope at your mum!

Hi John,

Thanks so much for your note.

I am so glad you are in remission...big congratulations!

Mum has been diagnosed with DLBCL (high grade, stage unknown). I am not sure what the chemo treatment is called. I've asked her but she doesn't want to bombard me with too much information. When things settle, I'll find out.

I'm very encouraged to hear about all of your amazing comebacks :)

Much love,

Ben

Hi Mike,

Thanks so much for your note.

Sounds like you went to hell and back. I am so happy you are now in remission. Congrats!

Mum has been diagnosed with DLBCL (high grade, stage unknown). I am not sure what the chemo treatment is called. I've asked her but she doesn't want to bombard me with too much information. When things settle, I'll find out.

I'm very encouraged to hear about all of your amazing comebacks :)

Much love,

Ben

Hi Sarah,

Thanks for sharing your story. It is amazing you were pronounced clear 7 months after diagnosis. What a great result!

I haven't heard from mum today but my dad is in close contact. I'm sure the care she is receiving is amazing. 

Much love,

Ben

Hi again Ben, we also have a dedicated Diffuse large B-cell lymphoma group so worth joining and having a look round the posts.

Hi Ben 

My NHL was also DLCBL, so there’s everything there to show your mum that she truly can beat this one! The chemo is tough but if she’s determined, I promise that she can come out the other side! My lovely Haematologist promised that I’d get to be an old lady - & so will your mum!

Sarah xx

Hi BenM,

I too am in exactly the same situation as yourself, my mother (75) has just been diagnosed with aggressive NHL (diffused large B-cell lymphoma) and she too is starting chemo in the next day or two.

Unfortunately I don't know the staging other than it is a 15cms growth on her stomach which due to mums cardio issues cannot be removed by operation, but mum is feeling very confident and positive as we move forward and her medical team have been nothing but lovely to her explaining everything slowly and clearly and reassuring her with options.

I have to say that the online publications provided by Macmillian Cancer Support have been very useful in explaining everything, from the horrible scary bits to the realistic and positive bits.  I personally feel more at ease with the whole situation being able to read about it and learn, that's how I cope.

Best wishes to you and mum.