Hi again,
I'm not really new here, just rusty. I had a diagnosis of Grade 4 FL about 6 years ago, completed 6 rounds of bendamustine and rituximab just before the pandemic. No maintenence, partly not needed, partly because of severe allergy to rituximab. Mu immunity was and still is very poor, so I'm careful and prefer to be outdoors or masked in crowds. I've had a few infections despite taking care to avoid them.
It's been otherwise fine for the last 5 years until this year. My exercise tolerance is rubbish, even for a 75 year old. I get out of breath walking up the disabled access ramp into Big City Hospital and to the uphill car park at Small Town Hospital. So, I went back to the gym and tried to build a bit of strength and stamina. After several months, I'm getting nowhere with my programme despite effort and now I have a new swollen lymph node in my neck. It was pea sized about a week ago, but now it's a bean.
So, back to my excellent consultant team...
Cecren
Hi again Cecren let’s look for a simple answer for your swollen lymph node in my neck….. I have had the same on and off over the past 10 years post my last treatment but nothing has ever been found.
If the lump is changing/growing I would be getting in contact with your team and talk this through……
They may take your appointment forward…… let’s face it, the quicker you get checked out the quicker you can control this be it your Lymphoma and if it’s nothing reduce the stress of thinking about it ((hugs))
Sorry to hear this Cecren ….. when my second type of T-Cell appeared in late 2013 we had to treat them both at the same time. The new T-cell was very aggressive…… little neck lump in Sep to a brick sized mass in late Nov.
I was told that the 6 cycles of R-EPOCH I was going to have would be very challenging……. Yes I was in hospital for 6 days/5 nights on my 2 IV pumps 24/7 for over 120hrs for each of the 6 cycles but honestly….. I was only sick once and this was due to a wrong food choice (I wanted some take away) and this triggered Pylori, a bacteria that developed ulcers and stomach inflammation. Up until this time I was doing ok with eating - even hospital food!! The 3 pack antibiotics I was given for the HP were horrendous.
But it did the job but as you know I had to go into Stem Cell Transplant to achive long term remission.
Lets look for a successful and smooth journey.
Do remember to use the great services available at Lymphoma Action as they will have the most up to date information about treatments (I just seen your post to the Nurse Team)
Their 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.
Good to hear that the system is doing it’s thing…… when my second aggressive type of T-Cell appeared (not a transformation but a completely new second NHL) the lump in my neck was growing at a significant rate and it was outstripping the ability of my great Heamatology department to get all the necessary tests done, results in and as I was going to be treated first 2 rare types of T-Cell at the same time, for my case to be reviewed by other field experts including Professor Sean Whittaker. Professor of Cutaneous Oncology at Guy’s and St Thomas’ London…… to be able to have a clear treatment plan in place.
There have been a good number in this group over the years who have had their FL transform into a high grade often DLBCL so let’s see if they are still looking in.
There are a lot of folks on the Lymphoma Action Closed FB group who actually are navigating the exact same challenges at this very moment,
