Stage 3 Hodgkin’s lymphoma

it all started around July time. I started to experience extreme itching with no rash on my chest neck and arms. I went to the doctor and was told it was eczema even though my skin was clearly not dry. I went back again and was prescribed a different cream. Went back again and was prescribe antihistamines. Went back again and was prescribed steroid tablets. Went back again and was prescribed antidepressants. Went back again and was prescribed more steroids and more antihistamines. At this point the itching was all I’ve and unbearable to the point I could no longer wear a bra of long sleeves and it was just so so itchy. I couldn’t go out or go to uni. Work was absolute hell. But I didn’t feel I could take time off because I was itchy? Eventually, at the end of December just before Christmas my doctor arranged a blood test. The results came back that my white blood cell count was extremely high as well as  as my inflammation levels. He arranged a non urgent CT scan. In the time I was waiting for the scan I started to experience night sweats and also shivers (one extreme to the other). I ended up going to hospital at the beginning of January this year as I was in complete agony in my neck and my armpit and 5 lymph nodes had swollen up. The hospital adviced I go back to my GP and arrange and urgent referral to the haematologist (blood cancer specialist) which scared us. This was done. When I saw him he said I looked very helpful and he could only feel one lymph node (the others had gone down). He explained he wasn’t worried and it could be glandular fever but to have a CT scan and ultra sound. I had my scans and a few days after the severe pain returned. My dad called the hospital and spoke to a cancer nurse, she reassured him that when the lymph nodes are hurting it is very unlikely that it is cancer and more likely to be an infection so this made us feel better. The haematologist received my scan results and said a lot of my lymph nodes were swollen internally so arranged a biopsy. I had this and two weeks later went for my results. They weighed me and I had gained a stone! A massive symptom of lymphoma is weight loss so this made me feel better. I went into the doctors room with my parents and he said he Is very shocked at my results because even now I still look really well. He explained that I definitely have stage 3 Hodgkin’s lymphoma but I am having a PET scan tomorrow in case it is stage 4. Then we can discuss treatment. I think people need to be made aware of these symptoms especially itching and do not hesitate to push your doctor into running tests. At the end of the day doctors are only human and they clearly aren’t as aware on symptoms of uncommon cancers a maybe they should be. I am not blaming them because I am extremely grateful for all they have done to help and the care some of them have shown. However I know that if my skin had been examined and itching taken more seriously from the start, my lymphoma may not be advanced and that is the thing that is upsetting me the most 

  • Hi, sorry to hear all you have been going through. I had stage 3b NHL, finished my chemo in November. Strangely enough I had also been to my doctors about losing weight, fatigue and a terrible itch on my scalp. It was awful scratching all the time, I had my husband checking my scalp but he cudnt see anything. Doctor said my scalp was dry, probably because I was scratching it all the time. She prescribed a coconut oil shampoo which didn’t help, also my bloods were normal. A lump appeared on my neck weeks later and she sent me to an Ent consultant. Many tests later I have a rare form of lymphoma. It’s very strange about the itching as I mentioned this to my consultant and she said it was unusual, the minute I started chemo, the itch went away. Maybe the scalp itch was unusual but I will be watching out for this in the future. I wish you well with your treatment. X

  • Hi I’m glad to hear you have finished treatment and are on the road to recovery. I was told that for my type of lymphoma about 1/3 people experience and unfortunately I’m in that one! It’s a relief to know it went away as soon as you started treatment.

    thank you and all the best x

  • Hi, I know this post is months old and not sure you'll see the reply, just curious about the scalp itch you experienced. I've had a very intense itch on my scalp since the beginning of August, worse at night as has had me awake, so bad it's bled where I've been scratching it. A pharmacist suggested an anti fungal cream, but that did nothing and said try my GP if it persisted. I didn't until a couple of weeks ago as it was driving me insane and felt like it was never going to stop! It feels like it's burning sensation sometimes. I also noticed a hard lump on my neck, so mentioned that at the GP appointment thinking he'd say it was nothing to worry about but he wants to refer to ultrasound if lump is still there at a follow up appointment on 30th.. he prescribed a steroid shampoo for a scalp but it's not helped.. so now my mind is in overdrive and concern about lymphoma! How bad was your itchy scalp and did you ever scratch it so much it bled etc? Hopefully I'll get some answers for my situation at some point in the not too distant future but for now just researching all I can!

    I hope you are both well,

    Thanks for reading x

  • Hi, sorry to hear about your problem, I scratched for months before I went to the doctors, I did scratch till I had it bleeding, it was so embarrassing. The shampoo didn’t help me either, fast forward a few months, the weight was falling off me, was so tired all the time with drenching night sweats. Still didn’t think anything was wrong as I have auto immune problems so put it down to a flare. It was only when the lump on my neck got bigger I went back to doctor. She told me she was referring me to ENT consultant urgently and told me to still go even if it went down. I think they can tell by examining  the lump. Unfortunately, he sent me for a biopsy and it was a rare form of lymphoma. I coped well on the chemo but unfortunately for me it came back 6 weeks after treatment finished. This took months to get all the relevant tests before treatment. They don’t always start treatment for lymphoma right away, it has to be at a certain stage, this time I’m on watch and wait and go to hospital every three months, I hope this continues for a long time before I need more treatment. Just getting on with life and enjoying it although it was hard to accept it at first. Hope this hasn’t worried you more but even if it is your worst nightmare, if I coped with it anyone can. Best wishes, let us know how you get on and fingers crossed it will be nothing.

  • Hi, thank you for your reply, I'm so sorry to hear what a tough time you've had and with it coming back so soon after too.

    The more I'm reading into it and thinking about symptoms etc I getting concerned about the chance of lymphoma. I know there's no ideal time to get ill but I've recently got divorced and children are only 1 and 4 so the last few months have been stressful enough :'( 

    I keep hoping this lump will just disappear but don't think it's going to.. trying to stay positive that I can get tests and find out what's going on and hopefully it's nothing serious. 

    Thanks again for your reply, it's great to hear you're getting on with life and hope you don't need any more treatment in the future x

  • Hi i'm sorry to hear about this . I'm going through something similar. I wasn't given CT scan though. I've been given Mri neck no contrast. No biopsies/cytologies. Had ultrasounds but only showed slightly enlarged nodes in particular left side. They didn't even try and do further investigations and just said it's unlikely cancer. I have a LOT of the same symptoms as you and it is spreading quite rapidly over the 8 months. I thought I had viral tonsillitis to start with but it's never gone and just got worse. I have red and white patches in mouth too. And an enlarged inflamed very red left tonsil with holes in and nodules swelling in left cheek. all my lymph nodes are up including saliva glands especailly left sided and under chin. I'm not sure myself if they can carry spread malignant cells and not picked up on MRI neck 3 months ago. :( 

  • Hi,

    sorry you're going through this! My advise would be to see your GP and asked for a referral to the haematology department at your nearest hospital. That's how I got started, hope this helps!

  • Thank you/ I 've been trying but they just won't take me seriously :( 

  • Reading this is like reading my own life story these last 3+ years. I have experienced everything that you have. The itching, the hot and cold flushes, the disturbed sleep. Also the numerous lotions potions and creams. I tried homeopathic remedies and vitamin pills. Nothing works! I see three 'specialists' and had three separate diagnoses. Eczema, allergy and neurological. I had yet another appointment but couldn't go due to covid restrictions. When the hospital finally rang me to re-arrange my rash had gone so I cancelled but it came back worse that ever about 3 or four weeks ago. I just can't take it any more. I am lying awake now at 2.30 in the morning scratching my arms until they bleed. 

  • I can totally remember the pain and discomfort you're feeling at the moment and I can't believe how long it's been going on for! My advice would be to ask for a blood test as it can detect your white blood crlk

    count and inflammation markers (both of mine were very high). From this they would hopefully strange scans if something doesn't look right in the blood test results. Failing that, I would ask your gp for an urgent referral to heomotology. This is what I did and I was seen my the heomotologist within a couple of weeks. Sorry to hear you are going through this