Post treatment follow ups

Hi Lisa - Glad to hear your husband got some good news!

I finished treatment almost 12 months ago and the follow up is just based on doing blood tests (every 3 months first year, every 4 months second year), and then consultant also does some 'exploration' and feels neck, abdomen, etc. but then I could probably feel that myself if I ever had enlarged nodes... 

I was told the same, watch out for symptoms... I did have fevers for a few days every 2 weeks at the time (retrospectively you could see a trend in my blood results but apart from a very high LDH and reactive protein C, the rest was within liimts). But I did also ask the consultant, would the symptoms be the same? Would your inmune system react the same way? Unfortunately no clear answer for anything, just watch out for swollen nodes, fevers, sweats, weight loss... 

Obviously this is extremely frustrating as the follow up is a reactive process and there is nothing to prevent it or pick it 'earlier', so you kind of learn to live with this. I had a private medical insurance through work and got 2nd opinion to see if it was worth doing CT scan, but I was told that is not the protocol and it would only be for me to have piece of mind, but it is not something a doctor would advice (no need for extra radiation...). I just wanted to make sure the NHS wasn't being 'cheap' and getting me blood tests when I should get scans, but apparently this is the medical advice and what is written in protocols around Europe. 

So, it is normal. But for the patient and the family it doesn't give much piece of mind.

Hi Lisa Frankie21 and great to hear that the all clear has been given.

As you know I was treated for 2 different types of T-Cell NHLs (one classed as incurable) and 2 Allo (donor) SCTs as part of my treatment.

I had a post treatment CT scan but no other Lymphoma related scans over the past 9.5 years…..

Just as swift_dc described I had 2 years 8 months of appointment gradually reducing from every week (normal for SCT), once a month, every 2 month then every 3 months…..

Then in June 2018 I was discharged from my Consultants care with my primary care returned to my GP……. but I reminded that they were always there if I needed them……. I have made 2 calls over this period of time but my great CNS was able to answer my questions.

There is a good article in the 2024 Spring edition of the Lymphoma Action - Lymphoma Matters Magazine covering Patient-Triggered Follow-Up as this was basically what I was put on….

https://lymphoma-action.foleon.com/lymphoma-matters-spring-2024/128/ask-the-expert?utm_campaign=14351781_Lymphoma%20Matters%20Feb%202024&utm_medium=email&utm_source=Lymphoma%20Action&dm_i=WSK,8JLWL,UHWXGH,ZDBN1,1

Thank you for the info both and the article Mike, 

At least we know its normal procedure I suppose but I would feel better if scans were done!

Lisa AKA Frankie!