Hi everyone,
I was diagnosed with classical Hodgkin's lymphoma in April 2020. I underwent 6 cycles of ABVD (2 cycles ABVD + 4 AVD) and since then I had an end-of-treatment PET/CT in December 2020 showing complete metabolic response. I was therefore declared in remission. Following this, I had another PET/CT in October 2021 which was also negative.
I have been feeling fine until the beginning of March when I contracted an infection. It started with a sore throat and has now developed to be a suffocating cough with phlegms. My wife also caught it and she is also fighting it but not as bad as I am. I don't seem to be getting any better and even though I appreciate that it's been only about 10 days that I've fighting this, I worry that this is really how it all started prior to my diagnosis... Back then, I spent a period of about a year (maybe more) when I would catch every single bug there is and I simply could not fight it without antibiotics. My body was unable to recover from the infections no matter what until all was explained with my diagnosis.
I worry that this may be the beginning of it all again? Does anyone know whether our immune system even in remission with Hodgkin's is compromised and will never be as good as normal, healthy people's? I don't want to start taking antibiotics again and would had hoped that I would be able to fight infections without the need of medications. I am due to see my hospital consultant for a routine appointment in April and of course I will let them know but I just wanted to see if anyone has had similar experiences with mine.
Any piece of advice will be greatly welcomed.
Wishing everyone all the best.
Manos
Hi again Manos, sorry to hear about your infection, the first thing that stood out is your wife also caught this....... there are a few bad infections doing the rounds at the monet (covid not included) and due to your treatment history you are going to be more open to these.
I was speaking to my Specialist Cancer Nurse (who we know very well now) and she was saying that there are more Haematology patients reporting infections this side of New Year that over last year and thy are putting it down to how things are reopening as covid restrictions are being removed...... we were better protected last year not just from covid but from many other bugs.
i have an incurable NHL so different from your HL...... but it's all down to what the actual treatment does to our immune system and our bodies ability to fight infections. i am now over 6 years out from my last treatment and it took a good 2 1/2 years for my immune system to be able to fight it's corner. During those 2 1/2 years I was always fighting something and was 5 times back in hospital (31 days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia and Neutropenic Sepsis twice.
I am on one type of antibiotic for life and I also have a set of general emergency antibiotics to use at the first sign of any chest infection.
I would say things are good now, not looking over my shoulder looking for infections and getting on with as normal a life that any 66 year old can have.
If I were in your shoes and have been for years, I would be calling this in to your clinical team and reporting this and see if you can get your April appointment pulled forward so you can get a good check over.
Oh the post treatment Symptom Association is a big challenge.
It takes time to develop a trust in your body and in your own logical thinking.
I had a rare skin Non Hodgkin's Lymphoma so where you had tumorous growths inside your body..... my ones were on my skin.... yes not great to see and at times my body was 70% covered with tumours.
So in the early days any little skin change can set me off on one...... but I have now developed the ability to filter these out. I am treating an area on my bum at the moment, exactly where I had a tumour...... but it's the same place as I had radiotherapy on the tumour and that is what I am dealing with, not the Lymphoma.
I also had a lump appear in my neck on the opposite side from where I had my brick sized growth - this was about 5 years ago. Again down that rabbit trail but it was checked out and is a fatty build up that is no problem...... but my brain tells me to keep fidgeting with it then this inflames it and it gets sore........ but not as sore as the effects of my wifes slipper hitting me with the words "DON'T TOUCH THE LUMP!!!!!"
All the best.
Good to hear that you have got some antibiotics and that your nurse had reassured you that this is happening to more than just you - let's look for these meds to do the job for you.
