Nov 12, 2019 Latest post:
Apr 23, 2020
I have a diagnosis of recurrent Classical Hodgkin's Lymphoma (cHL). I was diagnosed with cHL 3 1/2 years ago and underwent nearly 6 months of chemotherapy. Officially I went into remission. I have had checkups every 6 months since then and there was never any indication that anything was off. Then, late summer I went to the ER when my arm swelled up leading to a blood clot diagnosis and blood thinners which led to a CT scan showing a 8cmx5cm tumor in the same place as last time, pushing up against my blood vessels, blocking blood flow. After a surgical biopsy and studying that tissue sample, the cHL recurrence was confirmed.
Typically with Hodgkin's Lymphoma, it is a highly curable form of cancer. 80% of people respond favorably to the chemotherapy treatments. However for some 20% of us, it comes back. This means that some of the population have a resistance to the chemo and chemo is unlikely to work well again. For this reason, those of us who have recurrent cHL do not statistically have a good prognosis. It's difficult to put exact numbers on but I did read a study that showed 50% of patients responding well to further chemo treatment. Interestingly, an aside, Hodgkin's Lymphoma is affecting more and more young people in their 20's and more people in affluent countries. However, the cause is still unknown.
So I was over the moon when I learned about a clinical trial that I was eligible for. That whole process took several weeks but ultimately I fit the bill and am taking part in this trial that tests the combinations of the two drugs I'm taking and how effective they are. Another arm of the group is taking the same drugs plus one other immunotherapy drug. Nobody is taking a placebo, I promise. The way I see it, instead of being completely out for 6 months with a 50/50 chance of beating this cancer and a high probability of long term organ damage, the trial allows me to have the best possible treatment taking it long and slow and leaves me able to function in every day life. It is safer, less toxic and has been proven to shrink tumors. I also get to be a part of the cancer treatment solution for future generations to not have to go through chemotherapy which is truly awful both physically and emotionally. It lasts far longer than the actual treatment, taking months to years to regulate back to "normal."
So that's my story so far. If you or someone you love is struggling with cancer, know that you and they are not alone. Not by a long shot. I feel so much gratitude in between my other feelings, that I live when and where I do. That I have insurance. That I have a loving family, kind and loving friends and a broad support network. Thank you all so much!!! Tia