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 

  • Hi Freckledone,thanks for updating , I know how you feel as I feel the same I feel like I have been kicked everywhere, I had my last cycle last week, also lost my appetite, white blood cells are always low- I started drinking ensure supplements to try and maintain my weight, and also been offered help from cancer care nurse with exercise to build myself up but I haven't got the energy just yet - the thing I am finding the hardest is I will now have to wait 6 weeks for a scan and then probably 10 days for results. I do hope you start to feel better soon and o am wishing you well.

  • Thank you Rebecca. Please keep me updated. 

  • Hello. It’s been a while since I sat and put anything on this forum and I apologise for that because I know that it was good for me to put down in writing what I was going through. 
    I had my last chemo session in December and I got to ring the bell which was a very satisfying day.
    During December I started to get severe back pain. This began to get worse after my last treatment. I spoke to my doctor and I was prescribed various painkillers including patches. These had no effect and I was eventually given morphine tablets and morphine syrup to take as required. This really started to slow me down but it was still not reducing the pain. I was sent for an MRI in January and it showed that I had 3 fractured bones in my spine. The probable Cause of this was the chemotherapy. I was given a zoldronic acid infusion to strengthen my bones. 
    I contined on the strong medication but the pain was so much that I was admitted into hospital and I was seen by a specialist spinal department who put me on a waiting list!

    We also saw the haematologist who told me that there was no evidence of disease. This should have been a jubilant day but the back pain was causing so many problems.

     I was sent for another MRI and x-rays. I was seen by 2 consultants. One was at a specialist spinal unit. He said that I had at least 3 fractures and he recommended a procedure called Elevative Balloon Kyphoplasty. This involved inserting a needle into the collapsed bone, filling it up with a balloon and then injecting cement into the cavity to fill the gap and to stabilise the bone. The consultant believed the damage was caused due to a mixture of the cancer and the chemo. 

    Four weeks ago I underwent surgery. The consultant said that he would fill the bones that had collapsed. He eventually filled 6 bones. The surgery took 5 hours. The difference was immediate. I have been able to sit up straighter but the jubilation was short lived. I feel that I have not progressed much in the last 4 weeks. The wounds have healed up and so I am allowed to go swimming and do exercises in the pool as well as use an exercise bike. 
    We saw the consultant again last week and after another x-Ray he wants me to see the haematologist for a follow up as he has concerns for another 4 bones in my spine. 
    I was due to have follow up appointments after being told there was no evidence of disease. I have called to arrange this but I have been told that I don’t need so many follow up appointments and that I am on a list. 
    I have a phone appointment tomorrow with a rheumatologist who might be able to chase up the haematologist. 
    I have not been able to reduce my pain medication at the present time. 

    Sorry it’s not the best news after my treatment. It’s been a long 12 months since my diagnosis and I was hoping by now I would be back on my feet and getting my “normal” life back. It’s just another obstacle that I am sure with the help of my ever supporting wife we will get through. 

  • Hi Freckledone

    I’m so sorry to hear about all the pain you have been in with your spine and hope you in a better place today, I have been wondering how you were doing I’m so glad you got the all clear from the lymphoma and you won that battle, I think I’m winning too I finished 20 rounds of radiotherapy then waited 3 months for a scan, I have one lymph node still looking active to I waiting for a small operation to remove it and go from there, it’s been a long 12 months here too, and I often think will I ever feel the same again,.

    I hope your on the mend and on top of that pain medication, I’m  sure your ever supporting wife is cheering you on to keep on winning and you will soon have to life back to a new normality, Best wishes to you Both.