Wow, way too many questions at once! I posted all that quite some time ago. Things changed and I am no longer a watch and wait patient.
After consult with a radiation oncologist, I received successful resolution regarding 2 different external issues (several months apart) via very low dose radiation treatments on 2 consecutive days. 5min. one day, 15 min. the next.
He then advised a PET scan to see if anything showed up internally, which it did. He then referred me to a specialist for oncology hematology.
When I began having adverse symptoms that were possibly related to what was on that PET scan, I consulted with the hematologist. After another PET scan, he advised Rituximab only infusions 4x weekly. I just completed those last Fri. 4.11.25. I felt better after the first one and with each infusion after.
I have a follow up appt. on 4.25. I finally feel a spark of hope that I will be one of the lucky ones who go into long term remission after receiving 4 weekly Rituximab infusions. It is a monoclonal antibody, not considered to be a chemo drug.
But I am left scratching my head because I did not know that PCMZL could cause problems internally. I am going to ask about that when I go for the follow up appt.
Hi Georgie,
First and foremost I am praying that you get fantastic news on Friday 25 April 2025! I will be thinking of you all day long.
Thank you for coming back to me. I appreciate it.
Sorry to ask so many questions. It is just so extremely rare (1 in 3 million people).
1. If you don’t mind me asking what were the 2 external issues (several months apart) in 2024/5 some 6/7 years later?
(after your last treatment of incision of the purple nodules on your arm way back in 2018).
Obviously I’m completely and absolutely over the moon that you had a successful resolution of both.
2. What showed up internally?
3. What were the adverse symptoms? Did you have 1 week of the drug?
I’m so incredibly happy you felt better by the end of the week by Friday 11 April 2025.
4. Please tell me what explanation they give you to your question at your follow-up on Friday 25 April 2025?
I am praying you go into long term remission. Take care.
Kindest regards