Post # 45 Things are going well !!!!!

Day 2 through 4 went well for Bill. He continues to eat well and get his exercise. Day 4 was the first time Bill experienced a brief bout of nausea post transplant. Considering the high dose chemo he received, Bill is doing very well. Today is day 5 and I noticed an increase in fatigue.

Below is a table of his blood counts since T minus 3 days though this morning:

11/6 11/7 11/8 11/9 11/10 11/11 11/12 11/13 11/14
T-3 T-2 T-1 Day 0 Day 1 Day 2 Day 3 Day 4 Day 5

WBC 5.05, 4.54, 4.21, 3.80, 2.26, 1.04, 0.45, 0.20, 0.09
Hemoglobin 11.40, 11.30, 11.30, 10.90, 9.60, 9.80, 9.70, 9.60, 9.50
Platelet 97, 88, 102, 102, 102, 78, 73, 53, 39

An interesting note: A day after chemo ended we noticed an increase in all of Bill's levels which was opposite to what we had expected. According to the doctors this is expected since what is in the bone marrow is pushed out by the chemo and shows up in the blood stream, causing the levels to increase temporarily.

We are now entering the period of time when Bill is most at risk for infections. The only defense mechanism that he has is the drugs that he is receiving every day (see post #42 - 11/7/10).

WBC's fight off infections. As I mentioned, the drugs are acting as the WBC's since Bill has hit zero.
Hemoglobin (Hgb) in the blood transports Oxygen from the lungs to the rest of the body. When Bill's Hbg is less than 8 he will need a transfusion of 2 units of packed red blood cells (PRBC). Today his count is 9.50. Red blood cells have a life expectancy of approx. 3 months.
Platelets (Plt)- When platelets are too low, excessive bleeding can occur. When Bill's Plt's are less than 10 he will need a transfusion of 4 units of platelets. Platelets have a life expectancy of approx. 5 days.

During rounds today the doctor said Bill is in the best condition they could expect on day 5.

I was helping Bill get dressed yesterday and after he put on his shorts, I handed him a shirt and he gave it back to me. I asked what was wrong with the shirt and Bill replied it does not match the shorts. Even with the fatigue and weakness Bill insists his clothes must match.

Visitor corner: The following friends and family were in to visit with Bill this week:
Friends: Jadzia and Eddie, Jeff
Family: Margy, Lue and Kelli

Now on to technical information
New Drugs that I have not previously mentioned:

On Day Zero - November 9th, 2010 Bill started on Mycophenolate Mofetil (Cellcept) 1000mg IV every 12 hours. This drug is given twice a day for two hours to prevent Graft Versus Host Disease (GVHD).
From Wikipedia "Graft-versus-host disease (GVHD) is a common complication of allogeneic bone marrow transplantation in which functional immune cells in the transplanted marrow recognize the recipient as "foreign" and mount an immunologic attack".
After bone marrow transplantation, T cells present in the graft, either as contaminants or intentionally introduced into the host, attack the tissues of the transplant recipient after perceiving host tissues as antigenically foreign. The T cells produce an excess of cytokines, including TNF-α and interferon-gamma (IFNγ). A wide range of host antigens can initiate graft-versus-host-disease, among them the human leukocyte antigens (HLAs). However, graft-versus-host disease can occur even when HLA-identical siblings are the donors. HLA-identical siblings or HLA-identical unrelated donors often have genetically different proteins (called minor histocompatibility antigens) that can be presented by MHC molecules to the donor's T-cells, which see these antigens as foreign and so mount an immune response.
While donor T-cells are undesirable as effector cells of graft-versus-host-disease, they are valuable for engraftment by preventing the recipient's residual immune system from rejecting the bone marrow graft (host-versus-graft). Additionally, as bone marrow transplantation is frequently used to treat cancer, mainly leukemias, donor T-cells have proven to have a valuable graft-versus-tumor effect. A great deal of current research on allogeneic bone marrow transplantation involves attempts to separate the undesirable graft-vs-host-disease aspects of T-cell physiology from the desirable graft-versus-tumor effect.

Types
Clinically, graft-versus-host-disease is divided into acute and chronic forms.

The acute or fulminant form of the disease (aGVHD) is normally observed within the first 100 days post-transplant,[2] and is a major challenge to transplants owing to associated morbidity and mortality.[3]
The chronic form of graft-versus-host-disease (cGVHD) normally occurs after 100 days. The appearance of moderate to severe cases of (cGVHD) adversely influences long-term survival
Classically, acute graft-versus-host-disease is characterized by selective damage to the liver, skin and mucosa, and the gastrointestinal tract.

Twice since starting Tacrolimus Bill has required Magnesium sulfate in Fluid 50ml 2 gm IV. Tacrolimus is used as an anti rejection drug. Tacrolimus is known to waste magnesium in the body. The treatment of Magnesium Sulfate is to maintain the bodies levels and replenish what Tacrolimus has wasted.

Post #44 - Happy New Birthday - Bill is one day old

Day zero - November 9th, 2010 at 11:42am Bill began to receive his new stem cells. The process was non-invasive and only took about an hour. The nurse set up the room, brought in the bag of Ed's stem cells, which looked like tomato soup, and hooked it up to to Bill. The process can be compared to getting a blood transfusion.

Ed, Margy and I did not let the non event of the process stop us from having a party. We had banners, cards, gifts to unwrap and pie. The pie was topped with a zero candle (we did not light it). Thank you to everyone for your calls, prayers and well wishes.

Even Stem Celly joined in for the celebration.

Margy and Ed left yesterday to go home to their respective families.

Day 1 - Today was a good day for Bill. Eating well and getting his exercise. Each day since chemo ended Bill's levels have gone down. Day 5 - 6 is when it is expected that his levels will be at their lowest.

Post #43 Tomorrow is transplant day!!!!

Today was harvest day for Ed; At approximately 9:45am the process began. Ed was hooked up to an apheresis machine where his blood was removed from one arm, ran through the machine to separate out the stem cells and then the other components of the blood were returned through the other arm. A normal collection of stem cells can take in excess of 4 to 6 hours on the first day and in some cases require more time on a second day. Ed's stem cells harvested in 3 hours and 12 minutes. The staff were very impressed with the speed at which his process ran. A special thanks to Margy for being Ed's caregiver during the harvest.

Words cannot express the gratefulness we feel for the gift of life Ed is providing. Thank you Ed.

As for Bill, today was a better day than yesterday. His body is still adjusting to the effects of the chemo and he still has fatigue. We are excited about tomorrow, day zero. This is Bill's new birth date and new beginning.

Post #42 - Tomorrow is T minus 1 day

Today Bill started to feel the effects of the chemo. He was very fatigued and had a diminished appetite. In addition to having effects from the chemo he is also taking many pills that cause drowsiness.

On Wednesday, November 3rd Bill started on Dexamethasone (Decadron) 8mg by mouth every twelve hours. This drug is a steroid and is given as an anti inflamatory and helps zofran work better. Bill will be on this drug until day T minus 1, which is tomorrow.

On Wednesday, November 3rd Bill started on Doxycycline Hyclate (Doryx) 100mg by mouth twice a day. This drug in an antibiotic that is given to prevent a line infection from the triple lumen catheter. Bill will be on this drug for about a month.

Yesterday Bill started on Tacrolimus (Prograf) 2.1 mg IV every 24 hours. This drug is given to prevent rejection of the transplanted stem cells. Bill will be on this drug 24 hours a day, via a caddy that he carries with him. At the time of discharge the drug will be changed from IV to pill form. Bill will be on Tacrolimus for about six months. From Wikipedia "Tacrolimus (also FK-506 or Fujimycin) is an immunosuppressive drug that is mainly used after allogeneic organ transplant to reduce the activity of the patient's immune system and so lower the risk of organ rejection. It reduces interleukin-2 (IL-2) production by T-cells".

Yesterday Bill started Ciprofloxacin (Cipro) 500mg by mouth. This drug is given to prevent bacterial infections. Bill will be taking this drug twice a day at least until discharge and maybe longer.
From Wikipedia "Ciprofloxacin (INN) is a synthetic chemotherapeutic antibiotic of the fluoroquinolone drug class.[2][3] It is a second-generation fluoroquinolone antibacterial. It kills bacteria by interfering with the enzymes that cause DNA to rewind after being copied, which stops DNA and protein synthesis".

Today Bill started Cefdinir (Omnicef) 300mg by mouth twice a day. This drug is given to prevent bacterial infections. As of right now, Bill is scheduled to take this drug for about a month.

Today Bill started Acyclovir (Zovirax) 800mg by mouth twice a day. This drug is given to prevent viral infections. As of right now, Bill is scheduled to take this drug for about a month.

Today Bill started Micafungin (Mycamine) 50 mg IV once a day. This drug is given to prevent fungal infections. As of right now, Bill is scheduled to take this drug for about a month.
From Wikipedia "Micafungin has been approved for the prophylaxis of candida infections in patients undergoing hematopoietic stem cell transplantation".

Bill had visitors today. His sister Margy and her husband Gary and our friend Mary Ann. Ed's daughter Cristina also came by.

Today Ed received his last injection of Neupogen. Tomorrow morning at 8:00am Moffitt will start to harvest Ed's stem cells. The process is scheduled to take about 4 - 5 hours.

Post #41 - T minues 2 Days - An emotional milestone!!!

About 25 minutes ago, Bill started his last round of chemo. The nurse came in and said this is the last bag of chemo I hope you will ever need. We both stopped in our tracks because it hit a good nerve.

Post #40 T minus 4 days to transplant

On Tuesday, November 3rd, Bill and I moved into the Bone Marrow Transplant unit at Moffitt Cancer center. Below is a picture of moving day. Unfortunately no one was there to help Bill move in, it is a good thing they had an extra wheel chair. (only kidding)

It did not take long for Bill to make the room feel just a little bit like home. Have Betty Boop, will travel thanks to Julia.

For those of you that are interested in seeing what the triple lumen catheter looks like when implanted, see below. Viewer discretion is advised.

Ed was quick to make sure Bill had a mascot for the room. Please meet Stem Celly.

Ed started his Neupogen injections yesterday. Today he received his second injection and has two more to go. Below is a picture of Ed before his second injection.

For me it is business as usual, come take a peek at my office

Tonight Bill started his third round of chemo. The Busulfan dose was adjusted tonight based upon the blood sent out to PA. So far the treatments have been going well. The staff have been great and very accommodating.

The room we are in is very spacious. I have an alcove with a desk that I use for work. I have a love seat couch that opens into a bed and am very comfortable.

This evening Ed and I went to dinner with his daughter Cristina and her boy friend Sean. We found a great Thai restaurant in St. Petersburg Beach.

October 30th, we visited with Bill's son and family. The grand kids were dressed for Halloween as Luigi and Mario.

Post # 39 - T minus 6 days and counting......

Monday evening we arrived in Tampa for the next leg of Bill’s journey. Tuesday morning at 8:15 Bill had a surgical procedure to implant a triple lumen catheter. Tuesday evening Ed arrived from NY and is ready to donate his stem cells.

Picture of implanted triple lumen catheter

Today - Wednesday, November 3, 2010 Bill will be admitted to the hospital for his bone marrow transplant. Bill’s schedule for the next week is as follows:

T minus 6 days (11/3/10):
Admission around 2:00pm
Start high dose chemo at 7:00pm
-Pre-meds: Ativan, Zofran and Decadron
-Chemo - Fludarabine IV over 1 hour
-Chemo - Busulfan IV over 3 hours
Blood will be sent to a lab in PA to test busulfan levels to get dosing correct

T minus 5 days (11/4/10):
Day two of high dose chemo – same as Day one
Ed gets first injection of Neupogen
Final launch of space shuttle Discovery (postponed until end of November)

T minus 4 days (11/5/10):
Day three of high dose chemo – same as Day one
Ed gets second injection of Neupogen

T minus 3 days (11/6/10):
Day four of high dose chemo – same as Day one
Start IV Tacrolimus (Prograft) – Immunosuppression
The Tacrolimus suppresses T-cells and causes magnesium wasting
Ed gets third injection of Neupogen

T minus 2 days (11/7/10):
Rest – no chemo
Start the following preventative drugs:
-Acyclovir – Prevents viral infections
-Omnicef – Prevents bacterial infections
-Micafungin – Prevents Fungal infections
Ed gets fourth and last injection of Neupogen

T minus 1 days (11/8/10):
Rest – no chemo
Harvest Ed’s Stem cells

T minus 0 days (11/9/10):
Stem cell infusion (bone marrow transplant)

As we move forward, my updates and posts will be more frequent.

post # 38 - T minus 19 days to Transplant

Last week Bill had his appointment with the transplant doctor to review his entire vital organ testing results. His PFT results were above the predictive value, The PET/CT was negative, the MUGA Scan was perfect, the Chest X-ray was normal, the CT of the sinus was normal, the spleen had a minimal enlargement, The bone marrow biopsy was normal - no variance of T-cell prolymphocytic Leukemia, no T-cell receptor gene rearrangement., Kidney is normal. In short the doctor finished the appointment by saying “Bill is physically, mentally and disease wise in the best shape he could be in for a bone marrow transplant”. That was the best news we could ever hope for.

We have one more trip to make before the transplant. On October 28th, Ed will be at Moffitt getting his testing completed and meeting with the transplant doctor. During the same time Bill, Margy and I will be attending the transplant caregivers class which is two to four hours in length. Bill will also have his final examination with the PA
.
As we get closer to the transplant date my updates will be more frequent. Thank you for following the blog up to this point. Please continue to follow as we embark and the next phase of the journey.

Post # 37 - We have a transplant date!!!

First I would like to start off by thanking everyone for their condolences and prayers the last two weeks. My father, Martin Sitowitz, passed away on Monday September 13th, 2010 unexpectedly, at the age of 75. As Bill always says “Life as we know it can change in a moment”. My father, Martin, touched a lot of lives and will be missed.

Now I need to bring you up to date on what has happened in Bill’s journey for the last four weeks. Bill’s WBC count for the past four weeks has been hovering between 1.0 and 1.4; therefore he never did get his next round of Cladribine and will not receive anymore. In total Bill did three rounds of Cladribine or 15 treatments. After missing one week of Campath, the doctor started Bill back up on Monday September 6th. As of today Bill has two more treatments and then he will be done with Campath. In total, as of this Friday, Bill will have received 47 injections of Campath.

Treatment is ending because we have a date for Bill’s bone morrow transplant, November 9th, 2010. His treatment is ending because the doctors want to give Bill’s system a rest so he can build up his counts prior to the transplant.

Yesterday and today Bill had his vital organ testing. It was an action packed scheduled and everything went as planned.

Monday Bill had the following tests and appointments:
*Pulmonary Function Testing – 1 vial of blood
*Meeting with the social worker
*EKG
*Chest X-ray
*Blood work – 19 vials of blood
*Tour of off site apartments
*Campath injection
*MUGA Scan for heart function – 1 vial of blood – A nuclear medicine test to evaluate the function of the heart ventricles.
*Tour of inpatient unit and patient rooms
*CAT scan of chest and sinus

Today, Tuesday Bill had the following appointments:
*Meeting with the primary nurse
*Bone Marrow Biopsy (4th)
*Appointment and examination with the PA

During the appointment with the PA we learned that all the tests performed on Monday showed good results, which means physically Bill is fit for the transplant. On October 13th Bill has the following appointment:
*Meeting with Psychologist
*Outpatient Pharmacy to discuss post transplant medications
*Meeting with Dr. Ayala, transplant physician

During the meeting with doctor Ayala, he will review all the results from the tests performed the last two days, the biopsy results and then both Bill and the doctor will sign a contract, Consent for high dose Busulfan and Fludarabine and Allogenic Hematopoietic Cell Transplant.

After October 13th we have the following schedule:
*Thursday, October 28th Bills brother Ed will come to Tampa to have his testing before Moffitt harvests his stem cells.
*Tuesday, November 2nd Bill will get a triple lumen catheter surgically implanted.
*Tuesday, November 2nd, Bill, Margy and I will attend caregiver orientation.
*Wednesday, November 3rd Ed starts four days of Neupogen shots to stimulate stem cell growth and to move them from the bone to the blood.
*Wednesday, November 3rd Bill is admitted to the hospital and starts four days of high dose Busulfan and Fludarabine.
*Monday, November 8th Moffitt will harvest Ed’s stem cells. If they don’t get enough on the 8th they will harvest the remainder on the 9th.
*Tuesday, November 9th is Bill’s transplant date.

Following the transplant the uphill climb begins. Today we learned that the side effects from the high dose chemo will be felt the following week and then the journey to engraftment begins. Bill will be in the hospital for 4 to 6 weeks. Once he is discharged we will move into the hospital owned apartment in the Lodge at Lakecrest, which we toured yesterday. The apartments are beautiful and have everything we will need for the remainder of our stay in Tampa.

Below is a picture of Bill with a few members of the infusion center team in Titusville


Until next time.....

Post # 36 - Mike's father           

Due to Mike's father passing away,( Marty will missed ) we are not up to date with the blog. I can't quite write the way Mikes does, so I will make it brief. I finally have a date to be admitted to the hospital for the transplant ( November 3rd. ) Mike will give all the details over the weekend. I appreciate everyone continuing to read my blog. Stay tuned!
Bill