Neil Bauer

First post: May 25, 2017 Latest post: May 31, 2019
April 1, 2017 - Became sick after midnight. Vomited several times. Thought it was the flu but it was the onset of the leukemia.

April 2 - 20, 2017 - Continued to feel weak with no energy.  But did not go to the doctor for evaluation. Drove to Hilton Head , SC for vacation with grandson, Brody.

April 20, 2017 - Swelling in my legs and feet required me to go to the Hilton Head ER. Extremely high white cell count of 260,000 detected.

April 21, 2017 - Medi-vac to Massachusetts General Hospital (MGH) for required for specialized treatment.  Arrived at MGH and admitted around 7:30 PM.

April 21 - 26, 2017 - Immediate medical treatment taken to reduce white cell count from 230,540 to 3,940 over the next 6 day period. I am diagnosed with Acute Myeloid Leukemia (AML).

April 27, 2017 - Chemotherapy treatment initiated on 24/7 basis for 7 days. This initial phase of chemotherapy is called "Induction Therapy". This treatment is also called "7 plus 3". It is intended to stop AML cell growth. The Induction Therapy period is expected to continue for 28 days in the hospital.

May 4, 2017 - Completed 7 days of 24/7 chemo.  Afflicted with rash and swelling on my face. Diagnosed as "Sweet's Syndrome" caused by shedding white cells being caught in body tissues.

May 5- 11, 2017 -  Received  high dose steroid to treat Sweet's Syndrome.  Received 90 ml of prednisone for three days. Then reduced to 40ml for final 4 days. Steroid seemed to offset all side effects of chemotherapy because I had no problems during the week following chemo.

May 12 -14, 2017 - Coming down off of steroids causes me to be very tired, but otherwise I am feeling very good.

May 12, 2017  - Neutrophil count brought down to zero. Neutrophils are part of the white cells which fight infection. White cell count nearly zero at 450. Objective was to bring both down to zero.

May 18, 2017 - Dr McAfee tells me that I will be able to go home on Thursday , May 20, which is a full week early versus the full 28 Induction Therapy period.

May 19, 2017 - I develop a fever which delays my early release since I must be clear of all fever for 2 days in order to be released.

May 20,2017 -  I awake from afternoon nap with very high heart rate of 160. Initial medications do not reduce the rate. Finally, medication called Amioradone, reduces my heart rate to the 90's and later 80. This incident will delay my release. The cause of the high heart rate is not identified. Possible causes theorized at "Atrial Flutter" or perhaps dehydration in my upper body.

May 21, 2017 - No fever for the last two days. So my release scheduled for Saturday May 22. This is  5 days early versus the 28 day Induction Therapy 28 day period.

May 22, 2017 - Released from MGH at 12:30 PM. Walked out of hospital. 

May 23, 2017 - I anticipate that I will home for 2-4 weeks until return to MGH for bone marrow transplant.

June 10, 2017 - I am readmitted into MGH for the start of the Transplant Phase.

June 11, 2107 - I begin chemo in preparation for transplant

June 15, 2017 - Completed four days of chemo. Undergo 20 minutes of head to toe full body radiation. ready for transplant.

June 16, 2017 - Valerie is in MGH giving last round of stem cells. She provides two bags of stems cells. it looks like a blood transfusion. It totals 5.8 million stem cells for each kilo of my weight. The transplant is in the form of a transfusion with the two bags of red blood. It is completed with no negative or allergic reactions.

June 16, 2017 - Day 0 - This is my Transplant Day. It is my new birthday.  A new beginning - Day 0. The Transplant Recovery phase of 21 days begins now.

June 19, 2017 - Day 3 - Heavy dose of chemo today 

June 20, 2017 - Day 4 - Another day of heavy chemo.

June 21, 2017 - Day 5 - Not feeling too well for the past week due to transplant reaction and chemo. I have not been out of my hospital room for over a week.

September 22, 2017 - Bone marrow specimen taken for biopsy test.

September  28, 2017 - Received bone marrow test results. Very encouraging results - 96% donor white cells and only 1% blast cells.

June 16, 2018 - Reached the year anniversary of my Sten Cell Transplant.

June 21, 2018 - Received my first round of immunization shots -four shots with each targeting multiple diseases and infections: Hib vaccine, DTaP vaccine, Meningococcal vaccine, Pneumococcal Conjugate vaccine. Booster shots will be needed at 18 and 24 months post transplant.

1. Pneumoccal Conjugate Vaccine (PCV13) - Aids in preventing pneumococcal diseases including pneumonia, blood infections and meningitis.

2. Haemophilus Influenzae type b (Hib) - Aids in preventing Hib bacterial diseases including meningitis and pneumonia. It is also given to bone marrow/stem cell transplant  

3. DTaP - Aids in preventing Diphtheria, Tetanus and Pertussis.

4. Meningococcal Vaccine - Aids in preventing serious bacterial illness such as Meningococcal disease which also causes blood infections. 
- heart

June 21, 2018 - Cellcept (transplant anti-reduction drug) dosage reduced from 2 pills to 1. Initial dosage had been 6 pills.

July 16, 2018 - Blood tests today at MGH. Everything is fine. Cellcept dosage reduced to ZERO. Down from 6 pills originally.  Tacrolimus, my other transplant anti-rejection drug, continues at 3 pils per day.

July 16,2018 - After blood test today, I had my eyes examined again by Dr. Dana of Mass Eye & Ear. Results showed no effects of leukemia. Teary eye issues continue and may continue indefinitely.

August 16, 2018 - Had blood tests today at MGH. I had some concerns due to my recent severe cold, but white cell count was OK. Also received 14 month booster shots for Hib and DTaP vaccines.

August 16, 2018 - At today's MGH visit, Dr. McAfee took me off my last Cellcept pill. I had been taking 6 Cellcept pills when I was released from MGH in July 2017. Cellcept is an immunosuppressant. I remain on the immunosuppressant, Tacrolimus. 

August 23, 2018 - Had dermatology examination  today from Dr. Chad Jessup. He said everything looked fine with no leukemia symptoms, butI need to to keep skin moisturized to help against dry skin from meds.   

September 13, 2014 - Visited MGH for monthly blood tests. tests were good. Dr McAfee and I agreed that I could drop my last 500mg pill of Mycophenolate. I originally had taken 6 pills per day to 3000mg. the goal was to shed the use of this immunosuppressant med.

September 14, 2018 - Dropped my last 500mg  pill of Mycophenolate (Cellcept). 

October 11, 2018 - Visited MGH for my monthly blood tests. Results were good, but I reported that there was some diarrhea and skin rash, both symtoms of GVHD.

October 19, 2018 - Flew to Aruba for two week vacation. On the plane the GVHD became worse.

October 23, 2018 - Once in Aruba, my GVHD continued to worsen. I had planned to bring my extra Mycophenolate and Prednisone pills with me to Aruba as a precaution even though I was no longer taking either. But I forgot them. I had to go the Aruban hospital ER to obtain a new prescription for for Mycophenolate. DR McAfee told me to take two pills per day or 1000mg.

October 31, 2018 - GVHD continued and I had additional Mycophenolate pills so Dr McAfee increased the dose to 200mg or 4 pills per day.

November 2, 2018 - Flew home. Avoided eating to prevent diarrhea. Fortunately, just made it hope with no mishaps.

November 5, 2018 - Visited MGH to check impact of GVHD. Blood tests results were good. HCT and platelets were OK but WCT dropped to 3.16.  Tacrolimus level was high at 14.7 so my dose was reduced from 3 pills to two per day. Scheduled bone density test to check impact of steroids on bone and vascular structure. Colonoscopy also to be scheduled to confirm that there is no infection in the colon.

November 8,  2018 - Returned to MGH for regular meeting with Dr McAfee. Blood tests were again done. HCT and platelets were good and similar to November 5. However, WCT increased to 4.61 within the normal range of 4.5 to 11.0. Tacrolimus level dropped to 11.9 from 14.7. Dr McAfee wants it around 10.0.

November 15, 2018 - Completed colonoscopy with Dr Verahajan. He found that my colon and large intestine were fine with no polyps. However, he also examined my small intestine and found clear indications of Graft vs Host disease (GVHD). The spots were sent our for biopsy to medically confirm the GVHD.

November 16, 2018 - Returned to MGH for weekly blood tests and discussion with Dr McAfee. Blood tests results for WBC, HCT and PLT results were  fine. Creatine (kidneys) and glucose were up slightly due to GVHD. Dr McAfee explained that the GVDH is in my small intestine and visible where the small intestine connects to the large intestine. This is also a location where the T-cells accumulate and a point where medications are absorbed into the body. So the concern that my meds are being flushed out too soon was a possibility. Dr McAfee increased my Prednisone for 20 mg to 60 mg daily.



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