Anne's hodgkin lymphoma story

I was diagnosed with Hodgkin lymphoma in December 2019 when I was 22. My first symptom started around June of that year, I would get a shooting pain down my right arm whenever I had a sip of alcohol. I went to the doctor about this but they were unsure as to what it could be because other than that I seemed fine - so I left it.


Months passed and the pain was still there, it was so hard for me to find anything on google as to what it could be until I eventually found something about alcohol induced pain being related to Hodgkin lymphoma. Soon after that I developed a cough that wouldn’t go away and I had a few lymph nodes flare up in both my armpits. I went back to the doctor and let them know that I was concerned about the possibility of it being Hodgkins so they got me to have a blood test. When the results came back it showed I had raised WBC and a raised ESR, so they decided do an urgent referral to a cancer unit.


After having a CT scan, PET scan and a biopsy, it showed that there was a tumour in my mediastinum (which explained my cough). I was diagnosed with Stage 1A unfavourable Hodgkin lymphoma and I was told that I would have to have chemotherapy.


Before chemotherapy started, I got the chance to freeze my eggs just in case it had an effect on my fertility. My first cycle of chemo was in February 2020. I had two cycles of ABVD. After I had completed that I had a PET scan to see how effective it was.


Unfortunately it had not worked as well as my consultant had hoped so I now had to start a stronger version of chemo which was called escalated BEACOPDAC. I had two cycles of this and it was much harsher than ABVD with worse side effects and I did need to have a couple of blood transfusions, but thankfully I never had to be admitted into hospital. After another PET scan, I was told that even though it was a stronger regime the tumour was still there (smaller but still active).


The next step was radiotherapy. Don’t get me wrong the side effects that come along with chemo are not nice at all, but the worst thing I experienced was the bone pain from having GCSF injections (injections that help your bone marrow to produce more white blood cells) it was like nothing I’d ever felt before! Definitely worth it though. I had 20 sessions of radiotherapy in total and I finished that in August ‘20. I had to wait three months until I could have another scan to see if it had been successful and for me this was a very hard time (and for others too I assume!) as I didn’t know how to feel. I was stuck between being hopeful and remaining positive or preparing myself for bad news just in case.


I finally got to have my scan in November, and later that week I was given the amazing news that I was in remission. I now live a much healthier lifestyle than I did before as I never want to take my health for granted, and hope to minimise any long term side effects that chemo or radio could have caused.


Before all of this happened to me, I hadn’t heard of hodgkins before, so I think Lymphoma Out Loud are doing amazing work at bringing awareness to these illnesses.




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