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Oct 11, 2016 Latest post:
Jul 19, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. As you know since you are visiting this website, Mom was diagnosed with Lymphoma on Friday night, September 30th. During that prior week, her neck lymph nodes had suddenly swelled up and there was no explanation as to the cause until the CT scan late Friday which indicated that it was, in fact, Lymphoma. Through Uncle Roger and his friend at MD Anderson cancer center in Houston, Mom was connected with Dr. Oliver Press, an oncologist specializing in Lymphoma at the Seattle Cancer Care Alliance which consists of the research teams and cancer specialists of Fred Hutch, Seattle Children's, and UW Medicine.
On Sunday, October 2nd, Mom and Dad drove to Seattle and started a long week of testing/blood draws/PET scans/biopsies, etc. Although it was first thought to be a "standard" Diffuse Large B-Cell Lymphoma, the final pathology results, received late Friday evening on 10/7 confirmed that the Lymphoma is a sub-set of that referred to as "Double Hit Lymphoma". This makes the treatment more difficult as quoted from Dr. Press:
Thanks for your message. Your situation is a complicated one. The "short version" of the story is that you have a rare variant of Diffuse Large B Cell lymphoma (DLBCL) know as a "double Hit" lymphoma. Double Hit lymphoma has mutations of the MYC and BCL2 genes that aren't present in most other DLBCLs. This type of lymphoma represents only 5% of the cases of DLBCL, grows much faster, and is not usually cured with R-CHOP chemotherapy which is the standard regimen for "routine cases" of DLBCL.
The current National Cancer Center Network guidelines for treatment of double hit lymphoma advocate using an intensive "induction regimen" such as dose adjusted EPOCH-R given every 3 weeks for 6 cycles , followed by collection of peripheral blood stem cells (PBSC) and then high dose chemotherapy and autologous stem cell transplantation (ASCT). The high dose chemotherapy regimen (BEAM) given just prior to transplantation is given to eradicate any remaining lymphoma cells (bischloronitrosourea, etoposide, cytosine arabinoside and Melphalan). BEAM will not only kill any remaining lymphoma cells but will also destroy your bone marrow cells, unfortunately, which is why we subsequently need to give you back your blood stem cells to re-establish blood cell production. Blood stem cells are collected and given back to you through a special catheter (tube) called a Hickman catheter, which will also be used to give you chemo, transfusions and draw blood.
The plan now is as follows:
1. Switch from R-CHOP to a more aggressive induction regimen (DA-EPOCH-R is the best choice since you are 69 and other intense regimens wouldn't be tolerated well). 2. Each cycle of DA-EPOCH-R usually requires 5 days in the hospital; this should be done next week ASAP, but after insertion of a Hickman catheter. 3. Switch to placement of a double lumen apheresis type Hickman catheter rather than a portacath, since blood stem cell collection and transplantation is contemplated after 6 cycles of chemo (catheter placement tentatively scheduled for Tuesday 10/11/16) 4. You will get growth factor shots (Neulasta or Neupogen) under your skin after you get out of the hospital. They may cause some bone pain. 5. Plan blood stem transplantation in first remission (probably 18 weeks from now). You will be on the transplant service for 3 months including 3 weeks in the UW Medical Center as an inpatient.
Therefore, today, October 11, 2016, Mom is having the catheter placed and may begin the chemotherapy regime later this evening. We will continue to post journal updates as we receive them in the section below.
Thank you again for all of your love and support. I know it will make a difference as we all face this battle together. Love Stacey