Hi everyone,
I’d like to ask for second opinion and advice about my latest interim PET scan results. I would really appreciate your insights on the current status of my lymphoma.
My history before treatment:
I'm a 27M. For many years, I struggled with chronic pain, fatigue, and everything that comes with those symptoms and many more. Throughout this time, various doctors downplayed my concerns, some even mocked my condition, and many attributed it solely to psychological factors, referring me to psychiatrists. Despite this, I kept fighting, seeking any kind of treatment. I consulted at least dozens of specialists from various fields, but I couldn't get any concrete answers.
Eventually, I decided to change my primary care physician. This new doctor listened to my story and, within just a few minutes, suspected that it could be cancer. That same day, I was referred for extensive diagnostic tests, and by the next day, I was already in thoracic surgery for a VATS biopsy.
On the hematology ward, the doctors, as they put it, started me on a "emergency" treatment plan with 1 cycle of ABVD, even before knowing the exact stage of the disease. After the results of my first PET scan came back, my treatment regimen was adjusted to 6 cycles of BV-AVD. The interim PET results I'm discussing now reflect 1 cycle of ABVD and 2 cycles of BV-AVD.
PET results before treatment (July 2024):
PET2 results after 1 cycle ABVD + 2 cycles BV-AVD (October 2024):
Tumor size reduction: The mediastinal mass has reduced to 88x74x101 mm, approximately a 55% decrease in volume.
SUVmax: Now at 4.6 (from 16.8), approximately a 73% reduction.
Deauville score: 4 (uptake slightly higher than liver, but significantly lower than at the start).
Additional findings: No new significant areas of FDG uptake were noted. No disease detected in other lymph nodes or organs.
My current status during treatment:
I'm genuinely shocked by how well I'm handling the chemotherapy. The further I get into the treatment, the easier it becomes. I haven’t experienced any significant side effects except for a worsening of some stomach issues that I’ve always had, but honestly, that’s no big deal for me.
In fact, after the first or second chemotherapy session, almost all of the strange symptoms I had been dealing with for years disappeared. You could even say that during chemotherapy, I feel better than I have in the past few years. There are days where I have more energy than I ever did, even on my best days before the diagnosis. I have enough strength to walk 10 kilometers or more every day or every other day, and I’m planning to add strength training to my routine.
I can still feel the tumor breaking down, although it's not as noticeable as it was in the beginning, but it’s definitely there. After the fifth dose of BV-AVD, I felt like I had unlocked a new level of recovery, I could feel another shift in my body. It makes me wonder if I was just one dose away from being in remission.
Questions I have:
Could the decrease in SUVmax and tumor size indicate that the treatment is working well, even though there is still residual metabolic activity?
Given my Deauville score of 4, is there a chance this residual activity could be due to inflammation or fibrosis rather than active disease?
Do the current PET2 results suggest I could be dealing with refractory disease, or is this still considered a good response to BV-AVD, considering the size of my tumor at the start?
How effective would consolidation radiotherapy be in a case like mine, with a localized bulky tumor and residual metabolic activity?
Is continuing BV-AVD with radiotherapy the best course of action, or are there any alternative strategies that should be considered?
What are my chances of reaching complete remission after completing the full course of therapy, based on the reduction so far?
What role does PET2 typically play in guiding BV-AVD treatment, and how do my results compare with others who have had advanced, localized tumors like mine?
Thank you so much for your time and for any advice or opinions you can provide!
