Feel like symptoms returning but told to keep going

January 2019 I had confirmed diagnosis of Hodgkin Lymphoma, had 6 cycles of ABVD (they kept the bleomycin in after interim PET scan as I still had some active cancer in my chest). I had an all clear PET scan September 2019 and then I’ve been trying to recuperate and get back to normal since. The chemo really knocked me for six and I don’t feel like I’ve fully recovered from it. 

However, a few months ago I started with a few symptoms. Initially just getting short of breath and some chest pain if I was doing a bit too much (although it doesn’t take much!). I also noticed that my resting heart rate was quite high, it never fully lowered after treatment but has been quite high at times. As I’m sitting on my bed typing this my hr is 110! I also found my temperature has been elevated. Usually I’m between 36.6 and 37 for normal, but a few months ago it’s risen to typically between 37.3 and and 37.6. If I’ve had a busy day it will be around 37.7-37.9.

I’m also exhausted all the time. I’m getting a good 8 hours sleep but struggle on a daily basis. And if I’ve done a little activity I’m wiped out for the rest of the day, to the point of feeling ill as I’m so exhausted.  

About 5-6 weeks after the shortness of breath I started coughing and felt quite rotten for a while. I did a covid test just in case but that came back negative. My cough has been persistent since and I think getting slightly worse as time goes on. My GP sent me for a chest X-ray which came back fine. I’ve just had some bloods and my haematology consultant appointment today (Phone call) and told him how I am feeling and all he’s said is to keep going and he’ll see me in 12 weeks!

I have asthma which makes me cough terribly, but it’s triggered by the cold so I don’t suffer in the summer. This is exactly how the symptoms started 2 years ago. I became short of breath and started coughing over the summer of 2018. I thought it strange for my asthma to be bothering me but then other symptoms started like raised resting heart (went from typical 60 to over 80 in 6 weeks) and extreme tiredness. I never really got the night sweats or itching, even my bloods looked ok just before they diagnosed me. So I’m worried that this is the cancer coming back but I’m told to keep going. My body just doesn’t feel right. I felt I was making a gradual recovery from the chemo, each day a little better, until about about May this year, then things seem to have gone downhill. 

I don’t know what I should do now. Should I go back to my GP as I’m clearly not right? I’ve just started a new job working from home and I’m very conscious the last few days I’ve been constantly coughing through video calls. I’m sure people will ask if I’m alright and I have no idea how to answer that question. 

Any advice please, what with this and covid concerns I’m quite worried. 

thanks 

Kairen

  • Have you had any CT or PET scans done this year?  I finished chemo a couple of months ago and a post-treatment PET showed no sign of lymphoma but I will be having a CT scan every 6 months for the next 3 years and I've been told to contact my haematologist if any of my original symptoms return.

  • Hi no I’ve not had any CT or PET scans since September 2019 which was my post treatment scan to see if I was cancer free. At my first follow up appointment my consultant said I wouldn’t be scanned for every appointment but to keep an eye out for symptoms. I’ve told him what symptoms I have now, but because my GP sent me for an X-ray he said today “we won’t keep bombarding you with xrays and CT scans” Disappointed

  • There is a lot to be said about not bombarding your body with radioactive scans as this can go bring other problems along. As you are booked into see your team anyway you could call up and ask if there are any earlier appointments. But do go talk with your GP to set your mind at rest.

    I am coming up to 5 years post my last NHL treatment and have just over the past weekend developed a bad cold that is now going into my chest so if left will change into something far worse so I will start my emergency antibiotics today to see how it developed.

    Another busts to your GP would be on the cards if this persists ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • My consultant, who I spoke to on the phone this week, said he’d book my next appointment for 12 weeks time. But if I got worse or wanted to see him before then to call my specialist nurse. My mum is on at me to call my GP again on Monday.

    I’ve been coughing now for nearly 3 months  and it’s getting worse, to the point of making me sick at times. What worries me is that it’s pretty much mirroring my decline 2 years ago which then finally led to a diagnosis in January 2019. 

    I started feeling a little short of breath and coughing a bit July/August 2018. By September / October I was coughing constantly to the point of being sick, High heart rate, swelling feeling coming round my neck, extreme tiredness. I know this exactly as my daughters birthday is 9th September and after holding her party in 2018 I rapidly went downhill. I was referred to ENT, cardiology all over for various tests until my asthma nurse in November 2018 sent me for a chest X-ray which showed soft tissue around my trachea and over December/ January further tests and biopsies to confirm the diagnosis. 

    I know my GP had just done a chest X-ray which was ok, but I wonder if it’s too early for it to be clearly visible on one? I know my cancer grew very quickly, as a pea size lump in my neck that they did a biopsy of late December 2018 came back negative. But by the time I had a PET scan in early January 2019 it was walnut size and showing active in the scan. The mass in my chest at that point was 5cm x 10cm.

    Both a registra GP I saw this week and my consultant have asked if I’ve tried a cough suppressant.  I feel quite taken aback by that. I’ve been coughing and getting worse for 3 months. I’d really like to know why I’m coughing so much, not just take a cough suppressant!

  • My Specialist Nurse was like our mother hen and she was and still is (5 years on) our first call...... mobile or text..... give her call on Monday as a starting point.

    I have to say my wife (no cancer) had the same type of cough for 4 months basically through main lockdown but has cleared with no treatment required. Let’s look for you to get answers soon.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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