NHL - Watch and Wait

[Josie2rulrs]

I have been diagnosed in July 2015 with NHL stage 1...Im on watch and wait...

Thank God all has been good. go to oncologist every 4 months for blood work. Just want to know how many of you are on W and W and for how many years...Also

how often do you go to oncologist?

[Russ70]

I have been on since April 2018. Not had any B symptoms so far. 6 months check ups and 6 months blood work. Glad you are doing good/

[Josie2rulrs in reply to Russ70]

best of health to you

[jmcobb50]

Diagnosed in August 2015 Stage 3 NHFL with no B symptoms Watch & Wait. Went every 4 months for 2 years with CTs and now with annual CT but blood work every 6 months. See PA every 6 months and oncologist annually.

[Josie2rulrs in reply to jmcobb50]

best of health to you

[21happy21]

I was diagnosed April 2019, watch and wait blood work every three months and pet every 6 to 9months. Stage 4

[Josie2rulrs in reply to 21happy21]

best of health toyou

[21happy21 in reply to 21happy21]

Me too diagnosed April 11,2019

[Murray58]

I have a friend with CLL form of NHL who has been on watch and wait for 17 years. I am MZL NHL and had chemo treatment 4 years ago for a slow growing form and have been in watch and wait since for its reoccurring which it will at some point

[Josie2rulrs in reply to Murray58]

Best of health toyou

[Shar0n Volunteer]

Diagnosed September 2014. On w&w since then. I go to the oncologist every six months now. Next Tuesday will be my five year check up. Just had the blood samples taken for that yesterday so fingers crossed all will be okay.

[Josie2rulrs in reply to Shar0n]

fingers crossed always...best of health toyou

[Imaginenocancer in reply to Shar0n]

When they do your blood work what levels do they check to determine you’re ok? For example ld level or lymphocyte levels and I’d so what ranges ? Have you undergone any treatments ?

[Shar0n Volunteer in reply to Imaginenocancer]

I get a full blood count which includes white blood cells, haemoglobin, all the lymphocytes ,c-reactive protein (marker of inflammation) and a few other things like thyroid and blood sugar which are not directly related to lymphoma.

I also have a full physical examination for swollen nodes (I am bordering on underweight so that is fairly straightforward).

I haven't had treatment yet.

I have several nodes up in my neck which are not so far giving trouble. I had a node removed for biopsy in 2014 which came back positive for follicular lymphoma. I was offered radiotherapy for my neck and lower face at that time which I decided not to accept.

[Lizard28]

Hi I had treatment last year, finished in November then it came back six weeks later, no B symptoms yet so been on W & W for nearly a year. I go every three months and get bloods done and my haematologist exams me, It took me a while to get my head round this, but I’m ok with it now, just hoping it stays that way for a long time. I have NMZL, it’s supposed to be a slow growing one, but it did concern me that it’s stage two six weeks after treatment. Hope you get many years before treatment is required,

[Josie2rulrs in reply to Lizard28]

best of health

[Hidden]

I had a super clavicular lymph node out of the blue! I was 50 and now am 78. I found it incredible that I was told I had lymphoma which had affected the one lymph node. My wonderful Oncologist was told ( I was handed to him on a plate labelled =this chap has lymphoma) when the previous oncologist did not read my Tuberculosis history. I had already seen a surgeon who said to me (first remark) I don't know what it is?! You will have to have a biopsy. I should have had a fine needle aspiration but no the whole gald was removed but no mention of the TB I had when I was a kid...... OK I did have an immunity of sorts to the TB but that is only one item.

TB can come back ( Tuberculosis specialist) so if there is a TB history the biospsy MUST

be labelled comprehensively because TB and lymphoma can be mistaken one for the other! Mistakes in that field will not be admitted after the event so in the first instance categorical lab-work must be carried out with full disclosure otherwise mistakes can happen.

I could write a book about my health and although I am fit for 78 I am appalled what can transpire when the nitty gritty is looked into........ Candity should be practiced in all respects when it comes to any individuals life. Will 'they' or won't 'they'?

[Josie2rulrs in reply to Hidden]

wish you the best

[OlymphicMetal]

I was dx Stage 1 Grade 1/2 FNHL in June 2018. Only one cancerous node in neck, which was surgically removed. PET/CT showed no other hot spots and bloodwork/bone marrow clean. I have been on W&W for 18 months now, getting blood and full body MRI scan every 6 months. So far, so good!

[Smileyman]

I was diagnosed December 2016 but had a lump growing under my chin since at least September 2014 so you could say had been on undiagnosed Watch and Wait the intervening 2 years.

I had a colonoscopy in 2018 for mesenteric panniculitus and after biopsies lymphoma was found in that part of the body too . I am now Stage IV but grade II.

In February 2019 my haematologist suggested having a 4 week course of Rituximab however after PET scan this didn't happen.

I am currently having 6 monthly check ups, including bloods; my hospital has policy of discharging W&W patients back to care of GP (not a comforting thought) with rapid access to hospital if required.

It is true to say that I am living with no direct impact on my day to day, I spent Christmas in New York and was able to buy reasonably priced travel insurance with Boots (high street chemist).

I am unsure what will occur after my next check up, due February, however I am much more at ease with things compared to December 2016.