Jane’s Myelofibrosis Journey: Post Essential Thrombocythemia Myelofibrosis to Primary Myelofibrosis to Remission (I knock wood and cross my fingers when I type that last word!)
It was with hope, some doubt and a sense of adventure that I had my first acupuncture appointment. Dr. Yingzhe Li asked me many questions about why I was there; as usual I had to explain a little about myelofibrosis. Then she looked at my tongue, felt my pulse and went to work sticking about 30 tiny needles from the tip of my head to the base of my toes, and both hands. Two needles near both hips had electrical stimulation pulses giving me tiny jolts. Nothing was painful. The room was darkened, soft music was playing and I lay there for about 40 minutes, not moving. What a treat to be forced to be quiet and still! Next came about 20 minutes of vigorous Chinese therapeutic massage, even more of a treat! Little did I know that this was the beginning of my road to remission.
At age 50, in 2001 I had been referred to a hematologist because platelets were at 546,000. I was asked to go back in 6 months, but after my next physical the platelets had dropped to within normal range so I never went back.
Twelve years later, my primary care physician suggested that I see a hematologist because my hemoglobin had been low for several years and taking an iron supplement wasn’t helping. My platelets were at 132,000 and HGB 8.01.
I first met with a local hematologist/oncologist in January 2013. She noted that my HGB was 6.9 and wondered if I felt I needed a transfusion…..I had no idea what that felt like so I said, “No.” I had been thinking the fatigue and occasional pounding in my head was due to age. She suspected myelofibrosis and performed my first bone marrow biopsy in February. It was a dry tap, so another was scheduled at a hospital for March. The results of that indicated no JAK2 V617F mutation, moderate fibrosis, no blasts. Ultrasound revealed slightly enlarged spleen and liver. I was referred to an MPN specialist at PennMedicine’s Abramson Cancer Center.
In April 2013 during my first visit to Penn the doctor suspected “primary myelofibrosis in the fibrotic phase after previous proliferative phase in the early 2000s.” He suggested starting growth factors (Procrit or Aranesp injections when HGB was less than 10.0.) I started Procrit 40,000 every other week. By November, I was getting weekly bloodwork and injections of Procrit 80,000, and not seeing much improvement in bloodwork or symptoms of fatigue or shortness of breath. It was so difficult to describe the symptoms: brain fog, brain noise, fatigue and more fatigue.
This regimen went on through 2014. I saw a report of research being done at Penn on the use of acupuncture on chemotherapy patients for the relief of pain and fatigue: http://www.pottsmerc.com/health/20141008/breast-cancer-patients-find-that-acupuncture-has-shocking-health-benefits I discussed this with my Penn specialist in August who basically agreed I should give it a try.
In September of 2014 I started weekly visits to a Licensed Acupuncturist, approved by my insurance and recommended by friends. My weekly visit to the acupuncturist included lots of needles, some electrical stimulation and vigorous massage.
My platelet counts started improving slowly as did my HGB’s moving up to a 9.0 in November and a 10.0 in December. There was a major celebration for no injection that week. During 2015, I kept up with the weekly acupuncture and bloodwork. My platelets continued to improve to normal levels. My hemoglobin kept in the 9.0 to occasional 10.0+ throughout the year. In December, I had three straight weeks of no injections!!
I had a third bone marrow biopsy in February 2016 at Penn, great samples but still fibrous. No mutations were found. This was the easiest of all BMB’s – done in 15 minutes, drove home, no pain. It helps to have the real experts doing the BMB!
In 2016, I continued weekly bloodwork at my local hematologist and most weeks needed no injection. During the fall of 2016, I started bloodwork only every two weeks for a while and then only monthly. I haven’t had an HGB count under 10.0 (or one of those painful injections) since July 2016.
In my February 2017 visit to PennMed my HGB was 12.9 — highest in history! That’s when my doctor uttered the word “remission.”
During all this time, I have kept up with weekly acupuncture/massage, except for the times my acupuncturist visits her family in China. Acupuncture is known to have an effect on inflammation. My high lactate dehydrogenase (LDH) numbers have come down, but are still high (346). My specialist at Penn speculates acupuncture may have some effect on cytokines and inflammation. I hope that more research will be done on the relationship between acupuncture and relief of fatigue and pain associated with cancers. I know it has helped me. So many questions remain: Does acupuncture have effect on hemoglobin, platelets, and inflammation?
Time and research will tell.