Frequent Infections interventions to help manage life

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Hi 

Last year  I was diagnosed with stage 4A Follicular Non Hodgkin's Lymphoma

I had chemo  antibody treatment  from July to December

it was successful and I started the maintenance does of Obinutuzumab in January 

In 5 of the  6 cycles I had an infection and ended up  in hospital for 6 days with neutropinic   sepsis 

I started the  maintenance dose in January and was ill with flu like symptoms for two weeks 

I had the second dose in March and for the  past two week I have been unwell - flu like - problems with eyesight - dizziness and having to sleep most of the day  

Talking to the team at the treatment centre they say most people don't have issues with the maintenance dose  

So is it me or have others similar experience ?

if so what was done to improve the situation? 

 I run a business  and this is making it increasingly difficult and we are very keen to go on holiday but cannot book anything while I am frequently unwell 

  • Hi again  and well done navigating across to this corner of the community.

    As I said in your post in the New to Community section I have lived with and been treated for my 2 typeS of Low-grade non-Hodgkin lymphoma for over 24 years....... and for some people, regular infections are unfortunately part of the journey.

    I actually had no infections during treatment.......... my infections and other health issues did not start until I was 11 months out from my last treatment…… with me 7 times back in hospital (40 days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x2, Neutropenic Sepsis x2, passing out….. oh and a heart attack…… but I turned 68 last Nov and still getting on with life.

    There is not much you can do to improve this, apart from controlling how you open yourself up to infections....... but the summer is coming so you can get the windows open and get out and about. Eat a healthy balanced diet and keep active as this helps your immune system.

    A holiday sounds great but yes, it is a challenge to plan as you just don't know what is round the corner. I always travel with a set of general antibiotics that I have on repeat prescription and up until I got my Shingles vaccines I had emergency meds to cover this.

    If you are looking to go outwith the UK do ensure you access travel Insurance before you book anything....... you may unfortunately find it a challenge to get affordable cover - I had to be 2 years out from my last treatment before the cost became affordable.

    Talking to the team at the treatment centre they say most people don't have issues with the maintenance dose  

    I did not need maintenance as my 2 Stem Cell Transplant re-set my immune system but most of the people I have talked with who have had maintenance treatments find it to be ok with little issues.

    I think you have to accept that as your Follicular Lymphoma is seen as being incurable....... and even when in remission...... your immune system will always be keeping on eye on your Lymphoma...... this in turn opens the back door for infections to creep in as your immune system is fighting on 2 fronts.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • There are things that can be done but haematologists aren't very good at instigating it. Immunoglobulin infusions can be given. Immunoglobulins are antibodies from donors. I've been on it for years and it stops me from getting infections as much as I used to. Mine is prescribed by an immunologist, maybe a referral to one would be useful.

  • Thanks very much - very helpful 

    Was this done on NHS or private?

    assume it was  irradiated blood - was this tricky to get ? 

  • Sorry didn't reply. The answer is NHS and immunoglobulin doesn't need to be irradiated as it doesn't count as a blood product.