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 

  • Update after my 4th treatment. 
    I had my 4th treatment las5 Thursday. I really did not want to go because I have not had a good day for about 3 weeks. I was originally told that I would be taking a break to have tests and scans. 
    It has been decided that I will continue my programme without a break. I keep getting reminded that the Chemo is the most important thing. I have seen my consultant today and my PET scan will take place over the next few days. The results will take sometime will determine if the cancer is reducing. I will also be reducing one of my Chemo meds to protect my Lungs but this is standard after the amount of chemo I have had so far. 
    I’ve managed a walk today for the first time in a while. Hopefully I can keep it up and move a lot more over the nex5 week until my next treatment. 
    im staying positive and hoping for more “normal” days. 

    Best wishes to all 

  •  very well done and hope you feel better each day I have had my first treatment, i had a day of vomiting and then 6 days feeling sick . The nurses said that’s how you know it’s working if it makes you really sick ( that didn’t help - I wish I had a fast forward button I’d press it for everyone just to get past all this chemo- good luck for treatment 5 and I hope you have good news on your scans and plenty more normal days

  • Update after 5th Treatment. 
    I had my PET-CT scan last Tuesday. I was stressing about the result. As long as the cancer cells reduced then I could continue with my treatment. 
    I had my 5th treatment on Thursday. They did not have my result and the other two who are on the same programme as me didn’t get there’s either. 
    the hospital did decide to reduce the chemo medication that could damage the lungs if used to much. 
    I contacted the treatment centre yesterday to ask about the results. I was told that the cells are reducing as required. I was not given a figure but as long as it is going in the right direction. 
    my only concern is my immune system numbers are on the very low side. It’s making me more aware of my surroundings. 
    my heart meds have also been changed due to low blood pressure. 
    I had a good week leading up to my treatment. Fingers crossed I have a few more of them to come. 
    onwards and upwards with a positive attitude

    Best wishes to all 

  • Well done i bet it’s a relief to know it’s all going on the right direction wishing you luck with treatment 6  - I had my treatment delayed because of low bloods count so I know how u feel about that , it makes you very aware of being extra careful not to pick any nasty bugs up off anyone.

  • Update after treatment 6. 
    The chemo day went well. I’ve felt my usual after treatment mainly fatigue. My blood pressure is consistent after a reduction in my medication. Luckily my local GP asks for weekly readings. I got a copy of my PET-SCAN report. The cancer nurse explained it to me. I wanted to know if the cells were reducing in size or disappearing. Apparently it’s both. The cancer has reduced by about 95%. This is amazing news and it means I can continue with my present course of 6 more sessions. The downside is that my immune system is still reducing. Again I have been advised to be more careful of being around people and to monitor any temperature rise. 
    onwards and upwards. 

  • Very well done that’s such good news 95% improvement at only halfway point is amazing and I’m genuinely so happy for you Freckkledon. Update on myself is I have had cycle 2 and it went just that sam as the first cycle only this time I have to inject myself for 5 days with Filgrastim to boost my white blood cells. Onwards and upwards for us and I look forward to hearing about your chemo 7 good l k- stay strong  positive

  • Hi Freckledone I was wondering how you are doing and hope all is well with you. I have one more chemo to go and my halfway scan was looking fairly good  by 75% shrinkage of a bulky mass so not as good as yours but still good  hope your nearly finished with chemo.

  • Update after treatment 7,8 & 9

    sorry for the delay in my updates. I went back to get treatment No7 but the day before I had a temperature. The decision was made to delay treatment for a week. I was told not to take paracetamol to get my temperature down. All it does is surppress the infection. I was told to go to hospital in the future so that they can find out what the infection is. 

    I  returned a week later and my blood results were really good. This to me was a positive sign that when my chemo is over my body should be able to recover. I also thought because my blood results were good that I was going to have an easier time during treatment no7. I was so wrong. 
    I suffered for 2 weeks. Fatigue, dizziness, loss of appetite, shakes. I seemed to go from one treatment to the next without a break.

    I have got treatment No10 on Thursday. I have to keep looking at the positives and realise that I only have 3 more treatments to go.

    Other positives are my finger nails are growing, I’m not used to having to trim them so much. I have gained weight after my initial weight loss and the hair on my face has started to grow back. ( feeling like a teenager again with bum fluff)  

    I noticed that a couple of my toe nails had turned black. I arranged through my doctor to see a chiropodist. She explained that it was a side effect of the chemo and that it was nothing to worry about, She has asked me to see if anymore go black and to contact her if I have anymore concerns. 

    Rebecca, That is really good news. Thank you for posting the reply it gave me the incentive to put this update.

  • Thanks for the update I’m So glad to hear from you and u seem to be doing much better now and treatment is nearer to the end. You’re not alone with felling worn out with it all I feel the same too, I think the more cycles you have the more tired you get and it takes longer to get over,. I havnt had any probs with nails but hair is still non existent.