Well that was quite the bombshell. Yesterday we had an appointment with Dr. Reeder to discuss Valerie's treatment and we expected that he was going to have Valerie do a 3rd cycle of ICE chemotherapy before her stem cell transplant. Nothing could have prepared us for the news that he shared with us.
"Valerie, you don't have Hodgkin's Lymphoma". I think that's what he said. It was kind of a blur and after Valerie and I picked up our jaws up off the floor things began to make sense. He said that Val has a rare form of NHL (Non-Hodgkin's Lymphoma) called Large B Cell Lymphoma and that it can look like Hodgkin's in biopsy. More testing and scrutiny should have been done to determine the right type of lymphoma. Somebody at the lab in 2010 definitely dropped the ball.
He mentioned that there were two red flags that made him doubt Valerie's initial diagnosis in 2010. He said that there was a marker in the biopsy that was not consistent with HL (Hodgkin's Lymphoma) and the 2nd was the brain tumor. It is extremely rare for HL to show up in the brain. Back in February when I asked him how rare, he said that Valerie was probably one of three people in the country; so he was unsettled since we first came to him.
This whole time Valerie has been getting the wrong kind of chemo...for years. When one is diagnosed with lymphoma there is something called "1st line treatment". Its the kind of chemo you get first and if you relapse, they give you "2nd line treatment" or "salvage" treatment. First line treatment for HL is ABVD (adriamycin, bleomycin, vinblastine, dacarbazine) which Valerie received for a long time and grew resistant to so she got the 2nd line treatment for HL, ICE (ifosfamide, cardoplatin, etoposide).
She never got the first line treatment for her particular form of NHL called R-CHOP. I'll spare you the stupid names, you get the idea or click the link if you want to know what it is. There is a good chance that this could have put her into remission, but we don't want to dwell on that too much.
Dr. Reeder is going to put her right into 2nd line treatment R-ESHAP. She starts tomorrow with the R part which is Rutaximab, or Rituxan and then the full treatment of R-ESHAP starting on Monday. This chemo is given over 5 days so she will be going to Mayo for five days straight and then get 2 full weeks to recover and then do it all over again. Then God willing, start the stem cell transplant process.
We are grateful that Dr. Reeder was diligent in his care for Valerie. We are grateful to finally be on the right path. This did set us back about 2 months so please continue to share the site with your friends and family. Thank you all so much for your contribution even if you were only able to give $5. Every little bit counts.
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