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Apr 1, 2017 Latest post:
Nov 8, 2018
Welcome to Gail's CaringBridge website. We are using it to keep family and friends updated in one place.
Original Diagnosis and update as of November 2017: Gail first learned she had Lymphoma in October 2016 when her breathing was compromised by enlarged lymph glands in her nasopharynx and other enlarged glands were found throughout her body. She immediately was started on the standard treatment but unfortunately it was ineffective. In December 2016 she was advised by doctors at NIH to switch treatments to an experimental "bridge" protocol aimed to reduce the cancer but not expected to be a permanent cure. Gail had responded well and her doctors had advised that she have a Bone Marrow Transplant (BMT) as soon as possible while she is in a relatively healthy condition. The BMT was scheduled for April 2017 and was expected to effect a complete cure; however, after many other chemo protocols and other treatments which only worked temporarily, she was told she wasn't healthy enough to have the BMT.
After many months of searching and waiting, Gail is now enrolled in a clinical trial at Massachusetts General Hospital and expecting to receive her own modified CAR-T cells. This immunotherapy treatment, although still experimental, has shown to produce an excellent chance for a complete remission. If the CAR-T therapy only effects a partial remission, she can either have another CAR-T treatment, or possibly go ahead with the bone marrow transplant as originally advised. As of November 24, 2017, Gail has received her CAR-T cells and is now awaiting what we hope to be only good results! It will be a month before a new scan will give us definitive results, but hopefully there will be some physical signs (like smaller lymph nodes on her neck) which will show positive work by the infused CAR-T cells.
Update as of April 2, 2018: The CAR-T procedure worked for only 7 weeks, and the nodes on my neck started growing again in mid -January. It has taken until now to get into another promising clinical trial and to find out it’s not working for me. Before I can try another clinical trial they have to get my blood levels back to normal, which is seeming to be a challenge. Since this drug is new they don’t know how long it will take for countermeasures to positively affect the blood counts. Last news is good, so we can hope that will continue.
BMT Procedure. Gail was tentatively scheduled to have a BMT at Johns Hopkins in Baltimore, MD on April 21, 2017, buta scan on March 31 showing that the lymphoma is not yet under control has delayed the procedure. After more rounds of a differnt chemo protocol, we are hoping the BMT can be rescheduled for late May or early June 2017. The procedure requires Gail's immune system, which is not capable of fighting Lymphoma, to be wiped out. By transplanting bone marrow from a donor, her system will be replaced, growing new healthy cells and an immune system that is able to fight Lymphoma cells. Her niece, Ariel Meaker, has been discovered to be a viable donor and has generously consented. Gail will start preconditioning for the BMT by receiving 5 days of chemotherapy and 1 day of radiation in the week prior to the BMT. Meanwhile Ariel will be donating her bone marrow.
Post-BMT. The BMT requires Gail to be in residence at Johns Hopkins for approximately 60 days. Once her immune system starts to grow again, she will be dismissed from the hospital but must remain nearby in a special residence for transplant patients. Her fever and vital signs will be closely monitored so that she can re-enter the hospital within minutes if she needs urgent care. She will also be receiving outpatient treatment on a frequent basis.
Caretaking. A number of friends and family members have volunteered to be in residence with Gail as she recovers. Her brother, JR, will attend her for the first 4 weeks. In addition to taking her temperature and taking her to appointments, caretakers will shop for groceries, prepare food, and assist her in normal living tasks. It is likely that she will need some assistance when she returns home as well. Gail's dear friend, Gladys will be arranging a calendar of caretakers.
How You Can Help. Gail very much appreciates the assistance already received throughout her odyssey - cards, calls, gifts, visits, food, dog walking, and many other kindnesses. At first she is likely to be too weak and too immunity-compromised to receive visitors or phone calls. Please look for notices on CaringBridge regarding when she can receive visitors and calls. Meanwhile, your cards and words of encouragement on this site will bring her good cheer.
CaringBridge CoAuthor. Gail's cousin, Sally Meaker Unger, will be maintaining the CaringBridge website with updates about Gail's condition and ensuring that Gail is kept apprised of messages left for her here. Please leave Gail a message and stayed tuned for further information.
We appreciate your support and words of hope and encouragement. Thank you for visiting.