This is the condensed chronology of how a long search for an explanation became a cancer diagnosis, a treatment plan, and the beginning of therapy.
I am not listing every routine blood draw or every appointment here. Instead, this page highlights the moments that changed what we knew, what we were looking for, or what happened next. The Journal contains the fuller day-to-day record.
Jump Through the Treatment Timeline
- Spring 2026 — Allergy testing and early workup
- May–June — Hematology/oncology workup
- July — Diagnosis and staging
- August — Treatment and transplant planning
- September — MOGA treatment and response
- October — Donor search and transplant authorization
Before 2026 — Years of recurring skin problems
For more than five years before my cancer diagnosis, I had recurring skin problems that were treated as fungal infections with numerous topical and oral antifungal medications. At least some of those episodes may have been genuine fungal infections. Looking back after my Sézary syndrome diagnosis, however, it is impossible to know whether every rash during those years had the same cause.
August 2025 — The rash becomes more widespread
By August 2025, the rash had become more widespread, including across my chest and back. My dermatologist thought the newer rash might be drug-related and treated me with steroid cream and a course of oral steroids. The treatment helped, but only temporarily. The rash and itching returned and continued to become harder to explain as simply another fungal infection or medication reaction.
Spring 2026 — Allergy testing uncovers something unexpected
April 17 — New allergy/immunology evaluation at Methodist
I saw a new allergist/immunologist at Methodist because of the persistent rash and itching. She first ordered extensive blood testing for a wide range of possible allergies. Those tests were negative.
Further bloodwork reveals elevated lymphocytes
Because the allergy testing did not explain what was happening, she ordered additional bloodwork. That testing showed an unusually high lymphocyte count, and she recommended that I see a hematologist/oncologist.
May–June 2026 — Initial hematology/oncology workup at Methodist
May 26 — First hematology/oncology evaluation
The hematologist/oncologist at Methodist began a more specialized evaluation of the abnormal lymphocytes and possible T-cell disease. Blood testing, including flow cytometry and additional T-cell studies, showed an abnormal T-cell population. With those findings and the persistent skin rash, the concern shifted toward a T-cell lymphoma.
Specialty testing sent to San Diego
Some of the more complicated blood studies had to be sent to a specialty laboratory in San Diego. The results took about three weeks to come back, which made the waiting especially difficult. When they returned, they added to the evidence that the abnormal lymphocytes represented a malignant T-cell process.
Decision to move care to MD Anderson
Once I understood that I was dealing with cancer rather than simply an unexplained skin problem, I decided I wanted the rest of the diagnostic workup, staging and treatment planning done at MD Anderson. My July 8 visit there began the next phase of the evaluation.
July 2026 — Diagnosis and staging at MD Anderson
July 8 — First MD Anderson evaluation
My MD Anderson team began a more extensive evaluation. The presentation was not considered completely typical, so additional blood work, skin biopsy and PET/CT imaging were ordered rather than assuming the diagnosis from the earlier findings alone.
July 10–11 — PET/CT and blood findings
The PET/CT showed enlarged lymph nodes and additional areas of disease, including deposits beneath the skin. Blood testing also demonstrated a substantial malignant T-cell population. The accumulating evidence brought Sézary syndrome into focus as the diagnosis.
July 24 — Lymph-node and subcutaneous biopsies
The groin lymph node and paraspinal subcutaneous lesion were biopsied. Both showed involvement by the same malignant T-cell process identified elsewhere, confirming that the disease extended beyond the blood and skin.
July 29 — Bone-marrow biopsy
The bone-marrow biopsy also showed involvement by the same malignant T-cell population, adding another important piece to the staging picture.
August 2026 — Treatment and transplant planning
Early August — A treatment strategy takes shape
My case had two features that made the treatment discussion less straightforward. Although the rash covered much of my skin, it was actually less intense than what my doctors often see in people with Sézary syndrome. The second feature was much more unusual: I had numerous nodules beneath the skin. My MD Anderson doctors told me this was not something they had encountered in this form before, and my case was discussed at as many as four of their weekly multidisciplinary tumor conferences.
The initial treatment plan is mogamulizumab—MOGA. The first cycle consists of four weekly infusions. The next dose comes one week after the fourth infusion, beginning the every-other-week schedule; after that, treatments continue every other week. In practical terms, the first five infusions are each one week apart before the spacing changes to every other week. Treatment may continue for up to six months unless testing shows that I reach remission sooner.
One unanswered question is how the unusual subcutaneous nodules will respond to MOGA. The doctors do not yet know whether they will respond the same way as the disease in my blood and skin. If the nodules remain after MOGA has done what it can elsewhere, the current plan would be to consider traditional chemotherapy directed at that remaining disease. Radiation is not considered practical because I have too many of these nodules to treat individually.
At the same time, an allogeneic stem-cell transplant remains under evaluation as a possible curative approach if the disease can first be brought into an adequate remission.
The stem-cell transplant team is already working closely in tandem with my dermatology and lymphoma oncology teams. They are actively pursuing insurance approval and have begun the required transplant evaluation, including an echocardiogram, pulmonary testing, a meeting with a transplant social worker, and dental clearance.
Insurance is a critical part of whether transplant is possible for me. My transplant team has told me that Medicare would not cover an allogeneic stem-cell transplant for my type of lymphoma, so keeping private insurance is essential. During my financial consultation at MD Anderson, I was given an estimated cost of approximately $456,000 to $1 million for an unrelated-donor allogeneic transplant. That makes insurance approval much more than an administrative detail—it can determine whether this potentially curative treatment is realistically available to me.
For me, the transplant discussion ultimately comes down to cure versus control. My doctors have explained that an allogeneic stem-cell transplant is the only treatment being considered that offers a realistic possibility of curing Sézary syndrome. The other treatments, including MOGA and chemotherapy, can control the disease and sometimes produce remission, but they are not considered curative.
The potential benefit comes with substantial risk. My transplant team has described the outcomes approximately this way: about 50% of patients may achieve a long-term cure, about 30% may eventually have the disease return, and about 20% may die from transplant-related complications within roughly two years.
They have also told me that approximately 60% of patients develop some degree of graft-versus-host disease (GVHD), in which the donor immune system attacks the recipient’s tissues. GVHD can range from mild to serious and is one of the major risks of an allogeneic transplant.
At the same time, the transplant team is beginning the search for a suitable donor through the international donor registry. So while MOGA is being used to bring the disease under control, the work required for a possible allogeneic stem-cell transplant is already moving forward in parallel.
August 18 — First MOGA infusion
After blood work and a dermatology visit, I received Tylenol and Benadryl as premedication and then began my first mogamulizumab infusion.
About a third of the way through the infusion, I became flushed and felt dizzy and almost drunk. The infusion was stopped, the symptoms settled, and the treatment was restarted at a slower rate. I was able to finish the full dose and complete the observation period afterward.
The next morning, August 19, I felt fine.
August 19 — Fever and an unexpected return
The morning after my first MOGA infusion, I initially felt fine. Later in the day I became lightheaded, developed chills and a fever above 102°F, and was sent to MD Anderson’s Acute Cancer Care Center for evaluation.
The workup included blood tests and cultures, urine and respiratory testing, a chest X-ray and an EKG. I received IV fluids, but because the fever persisted and infection had to be taken seriously after cancer treatment, I was moved to the observation unit.
August 20 — Continued fever and monitoring
The fever continued overnight and again reached about 102°F. While blood cultures were pending, I received IV antibiotics and steroids. My heart rate also dropped into the upper 40s at times, so I remained on continuous monitoring and had another EKG. The conduction finding on the tracing was not new.
August 21 — Going home after a two-night stay
By August 21 I had made it through the night without another fever and was feeling considerably better. The blood cultures continued to show no growth as they approached the 48-hour mark, and I was discharged after a two-night stay.
Before I left, the team also wanted follow-up on the episodes of slow heart rate. Just as important to me, the plan was still to continue MOGA rather than abandon treatment after the difficult first dose.
August 22 — Recovering at home
After returning home I slept for roughly twelve hours and still felt wiped out. My weight had risen from about 185 pounds before treatment to about 196 after several days of IV fluids. My MD Anderson doctors felt the sudden increase could be explained by the fluids and were not overly concerned based on how I was doing.
I also sent an EKG tracing to my cardiologist because of the slow heart rates. His office said it did not show a new problem and noted that my heart rate on a previous office EKG had been 51, which was reassuring.
One other change was encouraging: my rash appeared noticeably reduced. My wife saw the improvement too. It was far too early to know whether that reflected MOGA, the steroids I received in the hospital, or a temporary change, but it was significant enough to record.
August 25 — Second MOGA infusion completed without incident
Before treatment, the transplant evaluation brought reassuring news: my pulmonary-function testing was normal, and my echocardiogram showed good heart function with no concerning findings. My blood counts had also recovered well from the hospitalization, so my team was comfortable proceeding with the second dose of MOGA.
The second infusion was completed without the flushing, dizziness, fever or other reaction that complicated the first dose. I remained for the required one-hour observation period, which was also uneventful, and then went home without difficulty.
Because the more serious reaction after the first infusion had not appeared until the following day, I remained cautious overnight. This time, however, the delayed fever and illness never developed. The second treatment passed without a repeat hospitalization or other significant problem.
September 1 — MOGA Treatment #3
The third MOGA infusion was completed without problems and felt easier than the second infusion. During the doctor’s examination that day, she also noted an area on the left side of my neck that raised the possibility of a mass pushing outward from behind the muscle. No new growth was confirmed. I was asked to monitor the area and contact the team if I begin to feel a lump developing.
September 8 — MOGA Treatment #4 and Strong Early Response
The fourth MOGA infusion proceeded as planned. Recent flow cytometry showed a dramatic reduction in the malignant Sézary-cell population in the blood after only two infusions. My skin was also markedly improved, and the previously firm area in my neck felt softer on examination.
Laboratory results were acceptable for treatment, including a normal neutrophil count of 2.23. I continue to have mild diarrhea two to three times daily, which the team is monitoring because MOGA can cause immune-related inflammation of the colon. A new red bump on my back appeared most consistent with an insect bite and will be biopsied if it does not resolve.
September 15 — MOGA Treatment #5 and End of Weekly Dosing
The fifth MOGA infusion was completed, marking the end of the initial weekly-treatment phase. The schedule now changes to every other week, with the next treatment planned in two weeks.
The clinical response remains encouraging. The red bump on my back from the previous week had disappeared, the other bumps were flatter or gone, and my skin continued to look markedly better. My doctor described the physical response as “A plus” and told me, “You look amazing.” The diarrhea being monitored during treatment was also about 50 percent improved.
My platelet count had fallen to 132,000/µL and will continue to be monitored. My doctor’s working explanation was that the change may reflect an immunologic response associated with cancer-cell lysis and the gradual loss of the effects of the large steroid dose given during my hospitalization. She also noted that my LDH was now “stone cold normal.”
The repeat PET scan is now expected around the three-month treatment mark, likely in November, to assess the lymph nodes and deeper disease. Although the transplant evaluation continues so that the option remains available, my doctor emphasized that I do not need to make the transplant decision yet; the three-month response assessment should provide important additional information.
September 29 — MOGA Treatment #6 and Continued Improvement
The sixth MOGA infusion was completed, about seven weeks into treatment. My oncologist was very encouraged by the change in my skin, describing the improvement on my back as “night and day.” She emphasized that I am not in remission yet, but said I am “marching firmly in that direction.”
My blood counts and metabolic testing remained acceptable for treatment, and I reported improved energy and a general sense of feeling more like myself. Because uncovered areas of my skin seem to be improving more than covered areas, the team recommended about 15 to 20 minutes of sun exposure to my chest, back and legs twice a week.
The transplant process also became more concrete. The transplant team identified a potential 9-out-of-10 donor match after a previously identified 10-out-of-10 donor was no longer available. I am scheduled to meet with the transplant physician on October 14 to discuss timing, donor selection, risks, radiation before transplant and the requirements for proceeding.
The immediate plan remains to continue MOGA and repeat imaging in roughly another month to assess the lymph nodes and other deeper areas of disease that were present before treatment began.
October 1 — Donor Search Progress and Transplant Insurance Approval
The unrelated-donor search is continuing through a worldwide donor registry. A likely 9-out-of-10 match has been identified. A previously identified 10-out-of-10 match decided not to proceed after being contacted, so the team is continuing to look for other 10-out-of-10 matches and backup donors.
Cigna has now formally approved MD Anderson’s request for an unrelated-donor allogeneic stem cell transplant. The authorization is an important practical milestone because the transplant and surrounding care can potentially represent a $1 million-or-more benefit decision.
The transplant is not imminent. I still need to reach an adequate remission and complete the remaining preparation. On the current schedule, the earliest I would expect transplant would be late spring or early summer 2027.
My understanding is that if I were relying solely on Medicare, coverage for this particular transplant in Texas could be a problem and I might need to travel to another state where different Medicare coverage rules apply. That makes keeping my private insurance coverage especially important.
Read the October 1 Journal entry: “Another Hurdle Cleared.” For more background, see the Transplant page.
What comes next
The timeline now moves from diagnosis into response: repeated MOGA treatments, blood testing, changes in the skin and symptoms, future imaging, and the continuing decision about whether and when to proceed toward transplant.
I will keep this page updated as major milestones occur. The detailed appointments, conversations, photographs and day-to-day experiences will remain in the Journal.
