Hodgkin Lymphoma Stage 3

Hi all. I have a few questions which I hope you can answer or point me in the right direction. 

I am a 59 year old male who started the year with a chest infection. I can usually fight these off after a couple of weeks but this one would not shake off. It spread to my lungs and I was prescribed a series of Antibiotics. 

These eased the coughing but I then started to feel tired and a loss of energy. I lost my appetite and started to lose weight. I managed to see my Doctor in May.  She sent me for a CT scan and some abnormalities were found in my stomach. Numerous blood tests followed and my levels were all low. I was sent for an MRI and after an appointment with a Haematologist I was sent for a biopsy from lymph nodes. The results showed that I had Hodgkin Lymphoma stage 3 which means that all my Lymph nodes are cancerous. 

I had a PET scan last week to measure the size of the Lymph nodes and another one will be taken after my first course of Chemotherapy. I was due to start my first session last week but after having a Echocardiogram they discovered some abnormalities in my heart. I had a heart attack 6 years ago resulting in permanent damage to part of my heart and I have Stents fitted. The Chemo ABVD medication has to be altered so that I can keep taking my heart medication. 

I cannot fault the service that I have had over the last few weeks but it is also a worry that things are going at 100mph since my diagnosis. 

It all sounds quite bad but I am generally a fit person and I have a positive attitude to what is going on. 

Hodgkin Lymphoma is generally found in younger people or the elderly (over 75). 

So I would like to hear from anyone around my age with the same condition. How are you coping? What is the treatment like and how have you been treated. 

Or is there any family members who can also give me some advice. 

Thank you 

  • Welcome to Cancer Chat Thefreckledone01 although I'm sorry to hear about your diagnosis.

    It can be quite scary when things start to move quickly, but this is good as it means less time waiting.

    Hopefully some of our Hodgkin's Lymphoma members will stop by soon to share their experiences and advice but in the meantime, you can find out more about your diagnosis and the treatment you'll be having on our website.

    We also have a team of very informative cancer nurses on hand to answer any questions you may have at this time. They're available Monday - Friday (although closed today) on 0808 800 4040 between 9a.m - 5p.m. They're very easy to talk to and will do all they can to help.

    We're thinking of you Thefreckledone01 and wishing you all the best with your chemo.

    Kind regards,

    Steph, Cancer Chat Moderator 

  • Update after my first two treatments. 

    my first treatment was on the 7th July. The process was relaxed and the staff were very reassuring. When I got home I had an episode which caused me to have major shakes. I have since found out that this can happen when your body acts against foreign bodies or a sudden temperature change. 
    I spent a few days in bed and then just resting around the house. I started to get really bad stomach cramps. I spoke to my cancer nurse and she recommended some laxatives. It got to a point after a week when I knew that I had to go to A&E. I had usual tests taken including bloods. When I got to see a doctor he said that I had to stay in due to having an infection.

    over the following week I was treated for the infection, stomach cramps and a low white blood count of less than one. This meant I had to delay my second course of chemo. My blood pressure remained low and my temperature hit 40. After some extra medication my blood levels increase to a level that I could leave and my temperature returned to a normal level. My stomach problem resolved after a few days of heavy laxative doses. 
    Again I spent a few days of not doing much and I had my second session of chemo yesterday. The Difference between the days is so different. I am not taking anything for granted but I know what to expect from some of the side effects. 

    the last 3 weeks have been hard for me and my wife. It’s a learning curve which changes everyday. We do not make plans for the following week. 
    Other side effects have included my BP staying at a low level. I have contacted my GP about getting my heart medication altered. 
    I have stopped sweating and slight tingling in the tips of my fingers. I have lost my appetite and so I have lost a few pounds.

    My dog and me are having a completion to see who can malt hair the most as my hair is coming away in my hands or I leave a lot on towels and in the bed. 

    I would still like to hear from someone of a similar age going through the same treatment. 

    I am not on social media and this is the only forum I have joined. I will update this page after my next treatment in 2 weeks 



  • I’m so sorry your going through this i can’t answer any of your questions as I am waiting for my biopsy results so I don’t know what I have got, I just wanted to reply and let you know that I cared and I hope the chemotherapy gets easier for you.

  • Update after my third treatment. 
    firstly thank you Rebecca for the reply. 
    I’ve had my hair cut short and shaved off the beard/stubble I’ve had for 20 years. Nothing is growing and it was getting me down the way it was coming out. 
    The strange thing is that my finge nails are growing so much. 
    I’ve been okay after my second treatment but I had one or two days feeling shattered. I know that I need to take one day at a time at the moment. 
    My third treatment went okay. I noticed that my white blood cell count was low. If I went into hospital with an infection they would treat me for a low blood count. 
    I know now that the need for the treatment over rides everything. If the treatment is delayed it could be the worst thing that could happen. 
    It was a bit of a reality check on how bad my condition is. My need to be more observant and monitor any changes is important. 
    My BP has been low over the last three weeks. I’ve monitored it daily after my local doctor changed some of my heart medication and it’s improving. 
    I am seeing a heart specialist this week to make sure that my heart is dealing okay with the treatment. 
    onwards and upwards in a positive mood. 

  • I’m glad your getting through this somehow -and I appreciate you updating on here as I now know I also  have NHL defuse large B cell I don’t know the stage yet but my chemo is starting pretty soon,so at least I know what to expect from the chemo - it doesn’t sound pleasant but then I didn’t think it would be- at least your halfway through this have you got 3 more to go? Wishing you the best of luck and although this is hard we will get through it and please keep updating when you feel upto it as I really do appreciate it.

  • My treatment will take a break after my 4th session so I can have some scans and tests. If all goes well there will be 8 more sessions every two weeks. I hope to be finished just before Christmas. 

  • That sounds like  a lot I’m down for 6 sessions so my last one will be early jan hopefully I won’t need anymore - best of luck hope you hear good news from your scans.

  • My dad has heart failure and a couple years later he was first diagnosed with Lymphoma and then Leukemia. He takes a chemo pill daily that doesn't damage the heart. He also gets infusions when his blood counts get really low. He's lived with it for about 10 years and will have cancer for the rest of his life, but they have been able to get it under control when his blood counts get really low. His cancer is currently stable, but he only has 20% heart function. He didn't have as many chemotherapy options with his heart, but they found other options that worked. 

  • Hello, I’m 52 female and was diagnosed with Classical Hodgkins Lymphoma stage 4B June last year.  I had a couple of episodes requiring hospital attention early on in my treatment on ABVD and the dose was also changed to fit with my low kidney function.  After 2 complete chemo sessions I had a PET scan which showed good response and they were able to drop the ‘B’ for the final 4.  This didn’t make any difference to my side effects just slightly reduced the time sat in the chair.  I found day 2-5 after chemo were the worse and I just did what my body was telling me so mostly stayed in bed.  I cut my hair short before starting chemo and when it started to fall out I shaved it off!.  I won’t lie, the treatment was hard going and towards the end I didn’t know how I was going to get through and just wanted to hide away.  My last chemo was 8 months ago and I’m getting used to my new normal.  I still suffer from fatigue, some days worse than others and get painful joints and tingling in my hands but I can still enjoy life to the full.  I can totally relate to the symptoms you have experienced so far and if you have any questions ask away.  

  • Thank you for getting in touch. Your story is so interesting and also encouraging to know.
    I may well be in touch in the future if I have any questions.