Hi all, anyone experienced something similar? My daughter diagnosed with follicular non Hodgkin’s lymphoma a year ago. She had another pet scan last month and altho the cancerous lymph is stable, thickening of the throat showed up. She is in quite a lot of pain from that and also large soft lumps between neck & shoulders. The consultant is looking into it, but we have nothing to go on so far and no treatment yet. Any ideas?
Sorry to hear this and good that she is being looked at.
I don’t have FL but have been in my journey with my type of Low Grade NHL for over 23 years so these challenges have to be navigated.
I was on Active Monitoring (Watch and Wait) for a good 14 years before it all kicked off. In late 2013 a month after I had had some radiotherapy to my face my lymph nodes on the left of my neck started to grow.
By the time I went for my first 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, my breathing was starting to be restricted and the pain was off the scale.
I had an initial 15min blast of chemo and that got me through our family Christmas. It was amazing the difference that first a Chemo blast made to the point I actually had some Christmas dinner, I got my PICC line in then went on to have 6 Cycles of chemo (R-EPOCH) between December and April. 5 days of 24hour a day continues and it did the job for me.
I tell you this part of my story as an encouragement as if treatment is required it is very effective.
I hope she gets answers soon ((hugs))
I am doing great, I found active monitoring to be ok as it just emphasised how slow my condition was in growing.
There is no need to feel alone, do check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Action Support Platforms for patients...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.
They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
