Hello peeps, new to all this, just joined the group, very recent NLP hodgkin lymphoma diagnosis

  • 5 replies
  • 11 subscribers
  • 1606 views

I've very recently been diagnosed with Hodgkin Lymphoma, NLP type, in the side of the neck. All been a complete shock. And its been advised to have radiotherapy of the neck, though  watch and wait could be an option, but not advised.

I'm really worried about the side effects, esp permanent effects, of radiation to the neck  - has anyone got experience of the risks involved ?   ( The radiation would be strength 30, 5 treatments per week over 3 weeks).

Anyone else been involved in this sort of treatment choice, with related decisions to be made? 

  • Hi  and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike  and I help out around our Lymphoma groups.

    I was diagnosed way back in 1999 with a rare incurable but treatable type of skin Non Hodgkin’s Lymphoma Stage 4a and although my blood cancer ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix.

    25–30 Gy minimises damage to the parotid glands in your neck, anything more resulting in a decrease in saliva production, and associated discomfort. So this is good. I also see that you posted in the Head and Neck group. Do remember that Non Hodgkin’s Lymphoma is completely different from solid tumour cancers that people in the Head and Neck group will probable talk about.

    You can hit my community name to see my story but I did have 10 zaps over 2 weeks (15 Gy) to all my bodies lymph nodes leading up to my first Stem Cell Transplant and apart from some fatigue and dry skin I had no real issues.

    You will also see I also had 35 other zaps over my treatments and on the whole these were ok….. just the fatigue and skin issues again.

    I also had a brick sized growth on my neck but Radiotherapy would have been as useful as a chocolate fire guard so we used some big gun Chemo.

    As to making choices I always went with the consultants recommendations….. let’s face it what do I know about these things, but ask about making a stair Stuck out tongue winking eye

    Happy to talk more.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thank you for the welcome Mike, it's very much appreciated ; wow, you have been through a lot !, and good to hear you beat it and now in a much better place.

    You mention that 25–30 Gy minimises damage to the parotid glands in your neck - that is very useful info, encouraging to hear, and i hadn't come across that in my reading.

    Have you come across any stats on risk to the arteries of the neck due to treatment in the neck area ? 

    It's an odd one in that the nlphl on my neck is not causing pain or discomfort, just the visible lump, but hearing about the treatment effects , that could cause more pain and discomfort than i have now.  But at the same I do have a cancer that could spread, so best to be treated.

  • HI again , there is always a chance of damage from treatments but this is a question for your team as they are the ones who know your exact circumstances.

    My main treatment ‘left over’ ‘damage’ is heart A-FIB but this was caused by my final chemo.

    Lots of people do experience pain in growth areas as the mass breaks down, treatments targets the cancer cells but there is also collateral damage to healthy cells as well. The main pain I had in my neck was down to trapped nerves being released from the mass and stretching - the pain was rather bad but no pain no gain as the saying says.

    The main focus is to evict this uninvited resident from our bodies using any tool available Wink

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi,

    this is just to post to say how it's been going so far with my radiotherapy treatments .

    I've now had 4 treatments ( 2 Gy each), with the weekend gap.  And so far, relatively feeling OK!  Noticeable tiredness is the main effect I'm noticing, which started on third day, plus throat a little croaky.  Not sure if it will stay like this,  or start to get worse by third week - but just taking it one day at a time, and see what develops!

    I'm trying to get on with my mask, but to be honest I do find mask a little irritating !  :-)  but I'm trying to see it as helping me!

    Will let you know how it goes.

    Take care. 

  • Hi again and thanks for your update. I did put up a reply to your other post.

    You may want to consider putting some of your journey into your profile (Click to see how to add details to your profile) as it helps you unpack your journey and helps others looking for support but don’t want to put up a post. As always you can hit our community names to see the stories of those who have done their profile Wink

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge