Hi my 24 year old son has recently been diagnosed with stage 4 Hodgkins lymphoma which has spread to his lungs. He is just coming to the end of his first cycle of escalated beacopdac. He tolerated the chemo pretty well but has spent the last week in hospital because he was severely neutropenia and developed a serious blood infection. He is ok now but it was pretty scary for a while. I’m very proud of him because he is dealing with everything so well. I’m really struggling though, I am able to be strong when I’m with him but privately I’m very anxious and overwhelmed. I was aware it was going to be tough and I thought chemo would be hard but I wasn’t quite prepared for this week, the infection etc. I don’t know what to expect going forwards, will every cycle be like this? Will it get worse? Is there anything more I can do to help prevent the same thing happening? Will we ever feel we have any sense of control?
Hi again Vlow and well done navigating across to this corner of the Community and generate that you have had a few reply’s.
As I said in my reply in the New to Community I have been in the road with my 2 rare types of T-Cell NHLs for coming up to 26 years next month…… eventually reaching stage 4 in late 2013…… but 2 years of treatment and I am now living a great life and planning my 70th birthday at the end of the year.
There is no getting away from the fact that the treatment journey for some folks can be demanding and rough but viewed in the great scheme of life this is a temporary period.
There can be Side Effects of Treatments like infections but most people learn from the first treatment and often change things to reduce Infection: risk and prevention.
Unless you see scans showing how treatment is working there can be some doubt that things are happening…..
My main mass was in my neck and it was basically the size of a brick 21cm x 10cm x 6cm.
By the time I went for my first blast of chemo it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was being restricted and the pain was off the scale.
I had an initial 15min blast of chemo and It was amazing the difference that first Chemo blast made.
Over that first night the staff kept coming into my room to look in my mouth as my teeth were slowly re-appearing to the point I actually had breakfast including toast that morning.
A few days later I sat with the family and had some Christmas dinner…….. this can be done,
I always say it can be just as hard a journey for these looking on…… with this in mind you may want to also check out Lymphoma Action.
Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey……. especially their monthly Zoom Group for Family, Friends and Caregivers.
They also have a great Buddy Service where you and indeed your son can be linked up with someone who has walked the same treatment journey.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
((Hugs))
Hi Vlow,
I am 33 and last year I went through escBEACOPdac, for Stage IV too. I am a scientist and I thought I knew better than others when it came to preventing infections 
, but the doctor said sometimes it's not even external infections but bacteria or pathogens that are in your body and in normal circumstances they are under control (thanks to your inmune system) but when neutropenic they can 'overgrow' and just colonize parts of your body. She said there is a 20% chance of developing an infection with this treatment.
I lived in a sort of bubble, only had close contact with my gf and my parents, any indoor space outside the house I would wear a mask. Had Neutropenic diet during treatment too, washed my hands a lot when I was at the hospital... I didn't get any infection but I think I was very lucky.
My mum and dad were also struggling a lot, even though they tried to put a strong face out for me. I think in some cases this is much harder for the family / carers than for the person.
I did feel some sense of control, you follow a treatment protocol that has been reviewed and approved by experts all around the UK and most EU countries. Knowing that you are following a path that many others have successfully gone through. That was my sense of control.
