by Pat Hensley
Ellen Jacquart, Editor
My name is Pat Hensley. I am a 63 year old male and reside on St. Croix,
Virgin Islands, where I have lived since I was 11 years old. I am married to Patty and we will celebrate our 40th Anniversary in Dec. I was diagnosed with Myelofibrosis in 2007 after my Hemoglobin dropped from 13.4 to 11.2 at my annual check-up. This story is about how I was ‘reborn’ on May 24th with a stem cell transplant.
My wife and I kept a diary of my transplant journey, which I’ve included below. For those who may be considering a transplant, some of the facts regarding preconditioning treatments as well as post transplant recovery may be of particular interest to you. For others, the main point is that by Day Plus 11, I was engrafting with my brother’s cells and experiencing the miracle of a new birth. By Day Plus 21, I was discharged from the hospital to a cottage environment close by the hospital. I find it amazing that in one month (ten days preconditioning and 21 days post-transplant) I was given a new lease on life. And while there were some ups and downs with transplant, my bone marrow biopsies to date show reduction in the myelofibrosis and I am back to living my life. As my Day Plus 100 diary entry notes, I couldn’t have done this without my wife as my primary caregiver or my brother as my stem cell donor. Life is good.
After I was diagnosed with MF in 2007, my Internist suggested a wait and watch strategy but noted that the only real cure was a stem cell transplant, and she cautioned me that I not get too old or too sick before taking that option.
She also suggested that I go to the mainland to confirm her diagnosis and learn more about my condition so I went to the Moffitt Cancer Center in Tampa, Florida where they did another BMB and confirmed the myelofibrosis. They also did HLA testing on both of my brothers and they were both 10 point matches. My doctor there referred me to a group at Mayo led by Dr. Tefferi who had become experts in myelofibrosis and had developed a rating system for the disease. I traveled there and was told after testing that I was low risk now and to just wait and monitor my progression which was good advice at the time.
My condition deteriorated over the last 5 years. My night sweats became bad each night. I had mouth sores for so long that the medications were no longer effective. I lived in air conditioning most of the time so I did not perspire and itch. It was uncomfortable to swim in the salt water. I had to limit my time to sun exposure. My quality of life was deteriorating; it was time to take the next step. We had heard that Seattle Cancer Care Alliance (SCCA) was the premier transplant center for myelofibrosis patients. We made an appointment for an interview with Dr. Nash. He advised us that I was accepted as a SCT candidate whenever I was ready.
It took a year to get our personal lives in order. We flew to Seattle on April 29th. It was a long day’s journey and, although I walked during the flights and stopovers, I developed a blood clot in my lower leg. This was monitored closely when I arrived in Seattle with scans and meds. I had 2 weeks of testing and evaluations at the Seattle Cancer Care Alliance (SCCA) and was scheduled to have a stem cell transplant on May 24th. Here’s my transplant story, taken from the journal Patty and I kept throughout the whole process.
Transplant Day -10
Pat – We met with our Lime Team (my group of doctors, nurses and coordinators) and got a clean bill of health to go ahead with a standard transplant protocol. Everything was good. Tomorrow I get a Hickman port surgically placed in my chest to allow access to go in and out. Thursday I am admitted to the hospital to start my chemo. I get one drug, Busulfan, for 4 days that’s not supposed to be too bad, and then two days of another that is worse. And so the journey begins.
Pat – I checked into the hospital at the University of Washington this am to begin my chemo. I will be here for the next 3-4 weeks as I go through the transplant process. Scott (our son) is here until Saturday and my brother Mike comes in the same day to begin the process of harvesting his stem cells. Everything is going well as the process begins.
Pat – I got my 1st chemo at 1:00pm yesterday and I knew pretty quickly that I had heavy drugs in my body. Things went well until I started to vomit during the night. We changed some anti- nausea drugs, Ativan, and got it under control about 5pm. I had some easy breakfast items this morning and have been out walking the halls; feeling ok.
Pat – Day 4 chemo’s done and I’m still feeling pretty good. My Dr. said everything continues to look good and my spleen has begun to soften as the chemo attacks the Leukemia cells. Very interesting. Keeping nausea under control with drugs so I’m still eating ok and walking a lot. My brother Mike started his process for harvesting his stem cells today and I can’t wait to get them in me on Thursday.
Patty – Pat had his 6th chemo this morning and seems to be doing quite well. He is eating slowly and still taking anti-nausea meds. We are walking the halls often and trying to rest whenever possible. He had a blood transfusion and also platelets yesterday. Today they examined his clot again and decided to stop the anti-clot meds because the chemo was attacking the platelets. He needs his levels low for the transplant on Thurs. Tomorrow is his “rest” day.
Day 0 – Transplant Day!
Pat – A New Beginning!! Today will be a little anti-climactic as I will get infused with Mike’s stem cells but nothing will happen right away. I will start the process of engraftment as his immune system becomes my new system, which is the real miracle. I have to take this opportunity to thank my brother Mike for his role in all of this. He has unselfishly given of his time, energy, and emotions to make all this happen. He has had many demands put on him and has risen to the occasion every time; love you. So the next 3 weeks we keep our fingers crossed that all goes as well as it can and deal with any problems that arise.
Day 2 and 3
Pat – Everything still is going in the right direction. I continue to get transfusions of red cells and platelets, which is normal at this stage as my counts have almost zeroed out. My counts need to get to zero in order to make way for my new system to engraft and begin producing.
Pat – My symptoms continue to gradually worsen as I sit here with no immune system, but no major problems. It all is going much better than expected and my Dr. agrees. No real improvement until engraftment of my new stem cells hopefully in a week to 10 days.
Pat – Minor development. The ring finger on my right hand started to fester 3 days ago. My Dr. immediately added an aggressive antibiotic to address this but it wouldn’t respond. Late yesterday afternoon it was decided to lance it and treat it directly at the site. This morning we opened it back up to soak and sterilize and it both feels and looks much better. The plan is to soak it 4X a day and let it heal from the inside out. No temperature and no apparent infection so it should be no big deal. I finally started to lose hair. I was playing with my mustache last night and about1/2 just pulled right out… to be expected.
Patty – Engraftment……YEAH!!!!!
Pat received news this morning that his white blood count is 1.3. That is the beginning of the process. He does get one more chemo treatment this afternoon which may knock the level down again. It will rise again, though. We are hoping for 4.0.
They are still dealing with his finger and swollen feet. They are also monitoring his clot with ultrasound scans. He is very busy with recovery!
Pat – My white blood count continues to climb and is 1.7 today. I am also registering neutrophils which is the rest of the immune system. My finger is slowly getting better aided by my new system. There’s talk of me getting out of here soon; my finger is the only issue at this point. Patty is doing great. She is the best support system anyone could hope for.
Pat – The WHITE CELLS have arrived! YEAH!!! My finger took a dramatic turn for the better and should continue to improve. I slept last night; it was a good night’s sleep without pain. They are talking about discharge early next week. Things are looking up!
Patty – We had a good day on Sunday until Pat’s shoulder started to be painful. Sometimes there is bone pain in old injuries. It was much worse yesterday so he spent most of the day on a heating pad and had some drugs for pain. His finger is much better, so he is on to the next struggle. I just spoke with him this morning. He is better and has a good attitude.
Pat – My immune system numbers doubled over the last 2 days.They are discharging me from the hospital back to the SCCA Clinic where they will take care of me on an outpatient basis for at least the next 100 days. Another milestone in the journey. Working on my shoulder with the PT Dept. We will figure it out.
Patty – We have had a busy few days. On Sunday afternoon Pat and I walked from Pete Gross House to the SCCA Clinic. He had a blood test at 4 o’clock. Pat had to walk back because they changed his medication. On Monday morning he woke up stiff and sore. He is having problems with his shoulder and now his lower back. We spent most of the day in triage. They ended up giving him a MRI of his back. Nothing abnormal was found. He is however still in a lot of Pain. They don’t really have a reason for the pain. So they have suggested Pat take more pain medication. Today is Wednesday, we went for a blood draw. This afternoon we went over to the Roosevelt Clinic. We saw the plastic surgeons that did that cutting on his finger. His finger’s doing well. We did walk about two blocks after that appointment. We ended up in an organic food restaurant where I had a latte and Pat had a scone. That was our first real outing since his discharge from the hospital. One day at a time!
Patty – Pat’s pains are much better today. The MRI showed nothing remarkable. His body is just trying to figure all this out. He did have a bone marrow aspiration on Fri that added to his discomfort. But, on Saturday morning he woke feeling good…..so we walked to the clinic for the labs. We also went to a nearby store to get compression socks for the swelling in his legs. It was quite ambitious for his first walk out. He spent the afternoon resting. The socks proved to serve him well as his feet and legs are less swollen today. We walked to the clinic and back again today.
Pat – Time continues to march on. We had our weekly Lime Team meeting and everything is going well. My WBC is normal, as are my neutrophils which are the essence of the immune system. From my Bone Marrow Biopsy last week we learned that I am no longer JAK2 positive and that the scar tissue in the marrow is healing itself so the Myelofibrosis and its effects are gone or going. Now just time to heal and hope to have no major GVHD complications.
Patty – We had our weekly meeting with our Lime Team on Friday. Pat’s blood cell counts are good: white blood cells are up, red cells are deteriorating as expected. As Pat becomes healthier his own red blood cells wear out. Pat will probably need a transfusion for his red blood cells sometime this week. All this is expected and all is normal. Pat is still hydrating daily to moderate his kidney function. Everything seems to be on track and the doctors are pleased with his progress.
Pat – Things are still going well here. I have avoided whole blood and platelet transfusions as my stem cells kicked in to produce enough. I start my exit testing next week in preparation for the end of the 100 day program (which is considered Phase One of the transplant). We will stay in the area beyond this time into Phase Two of the program since St. Croix could not respond to any health crisis that might arise. My system needs to continue to get stronger so that I don’t need support.
Pat – All the exit tests for Phase One are going well. I had a bone marrow biopsy done last Monday and there was no evidence of Myelofibrosis and the fibrosis is slowing going away. I still haven’t needed to be transfused as my system is making enough platelets and red blood. I will transfer down to the 4th floor under the care of one of my Drs. for Phase Two as this program winds down for me. I still need my immune system (white blood cells) to get more developed before we consider leaving Seattle. My WBC is 2 instead of 4 which is low normal. I just need more time but it is all happening.
Pat – As I have been tapering off my GVHD drug Tacrolimus I have developed some symptoms in my mouth of inflammation and sores. My team increased my Tacro to 6mg/day and I am rinsing my mouth with a steroidal solution. All of this is normal and expected. I will transition from my team to a personal doctor on Sept. 7 and continue to monitor the development of my new immune system.
The process of a SCT is has been long and hard but for me was the right choice and I have tolerated it well. My last BMB at day 80 showed no evidence of the disease. I don’t think that I could have done this without my wife Patty who has been my caregiver or my brother Mike who was my donor. To them I will be forever grateful.
© Pat Hensley and MPNforum.com, 2012. Unauthorized use and/or duplication of this material without express and written permission is strictly prohibited. Excerpts and links may be used, provided full and clear credit is given to Pat Hensley and MPNforum.com with appropriate and specific direction to the original content.