Post NHL treatment and recovery

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

I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a (CTCL) so although my Lymphoma ‘type’ is different I understand the challenges of this journey very well especially navigating post treatment life.

I have relapsed a good number of times over my 23 years (Hit my community name to see my story) so have had plenty time to develop the ability of getting over treatment and enjoying my hard fought for life.

The post treatment journey is full of steppingstones so you may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights these post treatment milestones.

Di get back to me once you have had a look and tell me what you think.

Hi, post treatment can be a new roller coaster ride, but be assured you will adapt and find your new normal and life will improve, I am 13 years ahead of you and whilst its not always been straight forward life is good.

John 

Thank you!! I am generally a very positive person, but sometimes I suppose  am allowed to feel low 

Hi there

I was stage 4 too, however didn’t have any symptoms, only discovered following gyne surgery. So I felt well and I think that helped with the physical side. I had my r chop last summer and got the all clear in Dec.

I still have an occasional throb in my jaw where one of the lymph nodes came up, this worries me but my consultant doesn’t seem too concerned.

Mentally, I’m struggling, I think the diagnosis and treatment was so quick I’m not sure I really realised the enormity of it and it’s only now that it’s starting to sink in.  Also, when my 3 monthly check up comes around my anxiety peaks and I develop symptoms, like itching and night sweats…I put it all down to anxiety. 

At my last appointment I raised these issues and I’ve now been referred for counselling.

Hope things improve for you.

Take care x

It takes a while to get over it all. Its a gradual process at at some point it stops being at the top of your thoughts anymore.

Personally I think it was about eighteen months post treatment. Still get a bit concerned when checkups are due and I'm not certain that well ever disappear but it is getting less.

Hi..First post although I've be an avid reader the last 5 months!

60 years old male  and previously fully fit and hrealthy. Stage 4 DLBC diagnosed last October. 6 Rounds Rchop, 2 extra Rituxin chemo, 4 spinal intrathecal , and 15 rounds of Radiotherapy later I'm here!.  (Oh yes and x2 bone marrow biopsies)..MRI Scan after round four of RCHOP. and second bone marrow biposy (I had bone marrow involvement).and the consultant has told me i've had a "Complete Response"

This week has been the first week since last October I don`t have any medical appointments to go to or planned..I feel like ive just stepped off a moving pavement that I was not in control of

Emotions all over the place at the moment and obviously concerned about the future although I appreciate having " A complete response" is a positive situation right now

Due to Covid i've basically been avoiding people since diagnosis and before that was involved in lots of local groups and activities..

If i'm honest with myself I have some sort of depression but i'm not a pill popper and want to work through it without taking chemicals to sort it (I've had quite enough of those put in my body recently thankyou )...I also realise its really early days for me as only just completed treatment

For me Covid is still the elephant in the room. I live on my own and have kept covid free so far. 

Need to start my life again somehow I guess...answers on a postcard please

:-)

Hi Old Rocker (I do like your community name )

Well done getting through the past 8 months and achieving "Complete Response"……. it took me 17 years to hear those words but I have a completely different type of NHL

Navigating the final 1/3rd of the NHL journey can be as hard, if not harder than the first 2/3rds being diagnosis and treatment.

Covid has indeed made these journeys just that more complicated but it is important for your wellbeing that you take advantage of the summer and get out in the fresh air (sun safe)

I reflect back to post my two Stem Cell Transplants. The challenges with developing a minor infection turning into full on life threatening Neutropenic Sepsis was very real and indeed happened a few times…… but it’s important that we don’t let our cancer define us……. but we strive to define out post treatment life.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and do run very good Heamatology Support Groups (on line at the moment)

There is an element of therapy in putting your journey down in print…… you can do this by putting some info into your profile (link as to how to do this is at the very bottom of my post) this also helps others looking for hope as they can look at our stories and like yourself don’t want to connect in immediately.

But the group is here to help out as best as we can. 

Thank you…know all about neutropenia sepsis, been there, done it, got the t-shirt.. in the hind sight that was the scariest thing compared to the chemo.

im glad to hear that after what you have been through still continue to support others like me..

it has taken me a long time to join this and talk about it and post something on.. I will update my profile, but my head is not yet in that space.

all the best for your continued good health and support x

I know what you mean.. after the event everything slowly starts to sink in .. my diagnosis was given and chemo r start as outpatients  in 3 days was the. Brought forward to 2 days with inpatient and in covid times too, so you can imagine…

my treatment was a bit different r hop, r codex m, Rivac, r codex m, r ivac and 8or 10 intrathecal .

neutropenic sepsis after rchop was the scariest.. but I am here today to tell the tale.

hope you are feeling better xx

So good to hear that you have come out on the other side many a times.. gives confidence to the newbies like me.

I dont worry too much about it, but talking about it helps. 

it’s just the tiredness and having to be extra careful.. I went to my first event a few weeks ago and was the only one with a mask on.. didn’t bother me but thought - people behave as if covid is gone.. 

But I did enjoy the event

thank you for taking time to respond and all the best x