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So you need a Stem Cell Transplant this year.
That is what Suzanne and I heard at UW Madison Carbone Cancer when we went there for a treatment plan consult on January 4, 2018.
December 2013: Received diagnosis of Chronic Lymphocytic Leukemia (CLL), Stage 0
No symptoms except for blood work. Watch and wait with follow up every 6 Months.
November 2016: Enlarged Lymph nodes and Spleen noted during routine follow up along with increased blood counts. CT Scans and Bone Marrow Biopsy performed.
December 2016: Results showed that the CLL had mutated. I was diagnosed with CLL with 17p deletion.
This diagnosis required immunotherapy which began January 2017. I had a partial response all of 2017.
At end of 2017 there was discussion of treatment plan evaluation at another center. We chose UW Madison Carbone Cancer Center.
January 2018: Met with a Transplant Hematologist. Upon review, we were informed there would need to be a treatment plan change to a different drug and I would require a Stem Cell Transplant in 2018.
February 2018: Started on the new drug Venclexta
During rest of 2018 symptoms improved on new drug.
September 2018: Met with Transplant Hematologist at UW Madison. After testing it was decided that it was time to discuss transplant dates. Initial date was November 9, 2018. During pre-transplant testing in October issues were identified that needed to be resolved before transplant. This was to minimize the risks of infections or complications.
November 2018: Issues were addressed medically and transplant committee approved moving forward.
Admission date for the transplant will be December 7th and Transplant/Infusion scheduled for December 13th.
This journey started December 2013 when I was first told that I had Chronic Lymphocytic Leukemia (CLL). This was discovered after I had gone into the doctor for being tired and having headaches. I thought it was associated with high blood pressure or something similar. They noticed I hadn't had a full blood workup in a while and decided to run Complete Blood Count (CBC) and Complete Metabolic Panel. A few days went by and I received a call that they wanted to draw more blood for further testing. A week later they call and said we want to draw some blood and send it to a lab in New Mexico for further testing.
We saw the doctor and was told that I had CLL and would get an appointment with a Hematologist to review the diagnosis and next steps. We met with the Hematologist and were told people usually are diagnosed with CLL in their 60’s and 70’s although not uncommon to get it earlier. I was staged at 0 and was told I was diagnosed by bloodwork only and didn’t have any of the other symptoms. Since there isn’t treatment for stage 0 patients the plan was watch and wait. This meant follow-up blood work and exams every 6 months to check on disease status. This went on for almost three years without any disease advancement. At my October 2016 exam, they noticed enlarged Lymph nodes and spleen and my White Blood count was elevated. They ordered CT’s and a bone marrow biopsy to determine what was going on and next steps. December 9th 2016 we were told that the results came back with CLL with 17p deletion. This showed the CLL had mutated and now required immunotherapy treatment since chemotherapy and radiation is not a prescribed treatment for this type of Leukemia. I was started on a drug named Ibrutinib January 2017. It took a few months to show some improvement. Each month the results improved to the point where my lymph nodes and spleen were no longer enlarged. The White blood cell count took longer to show improvement but did improve. The doctors were calling this a partial response to the immunotherapy. At the end of 2017 my doctor at ThedaCare Regional Cancer Center suggested I get a treatment plan assessment and asked if I wanted to go to Mayo, Froedtert or UW Madison. I chose UW Madison Carbone Cancer Center because we have family and friends in the Madison area in the event I needed treatment there at some point. When we arrived at UW Cancer Center my appointment was with a Transplant Hematologist. At that appointment they explained that due to my partial response to the treatment I was on I would be looking at a Stem Cell Transplant this year. The reason for this is that due to my age (52) and that there are limited drugs for this type of Leukemia we could run out of effective drug treatments. The best option for an actual kill and cure scenario would be the Stem Cell transplant. They did recommend the next drug for CLL, Venclexta to get a better response to try and get me in remission before a transplant. I started on that new drug in February of 2018. It did get a better response and my White Blood counts began to go down and get close to normal range around April and May. I did have several bone marrow biopsies in 2018 that showed some improvement each time. After my May biopsy Dr Kenkre from UW informed me they still see the CLL under the microscope and recommend three more months on the drug treatment and repeat bone marrow biopsy. So at least I got through the summer without wondering what next steps would be. In September I saw Dr Kenkre at UW and had the biopsy. After those results she informed me we might be at the point to schedule the transplant since they didn’t know if I reached optimal treatment even though I wasn’t in remission. The transplant committee recommended moving forward with the transplant. They decided that I would be admitted November 6th and transplant procedure on November 13th. That was until I had my pre transplant testing done October 22nd. The CT of Sinuses showed I had sinus polyps that would need to be surgically removed to reduce the risk of infection. That surgery took place November 1st. They also had concerns about some small nodules that are on my right lung. These nodules have been there since 2013 and haven’t changed size and have been classified as benign to this point. I was worked up for possible radiation therapy treatment to these nodules at that time. The transplant committee was mixed about the radiation treatments to the nodules if not needed and recommended at CT Guided Lung Biopsy of the nodules. Upon consulting with the Interventional Radiologists they advised the committee they wouldn’t do the CT Guided Biopsy because they weren’t certain they could locate the nodules given the size. So upon that they have recommended the transplant take place. I will be admitted 12/7 and the transplant will take place 12/13.
My brother Gary and my sons were tested to be donors. My brother because siblings are higher odds of being a full match and my sons because they would be a half match because they are my children. My brother wasn’t a close enough match and my oldest son Tyler was selected to be my donor.
There will be more to come since I had to repeat pre transplant testing November 26th and are currently waiting on the final results.