Post #46 First roller coaster ride post transplant......

Today is day 13, however I must go back to day 6 to bring everyone up to speed.

Day 6 - Monday November 15th, 2010
The day started out the same as the first 5 days did. Some time during the day we noticed Bill's urine was getting darker due to blood. Even though his platelets were 33 the doctor ordered 4 units of platelets due to the bleeding as their protocol becomes 50. (the normal protocol is 4 units of platelets when the patient is below 30). Vital signs are taken just prior to the transfusion then again 15 minutes in. Hives and fever are common side effects from receiving platelets. Bill did not get a fever but he did get a few hives. One was on his hand and the other was on his back. The hive on his back looked like a mega sized mosquito bite. Within 30 minutes the hives were gone. If the hives were severe Bill would have been premedicated with Benedryl before future transfusions. Blood work is taken after the transfusion to confirm levels, Bill's level only went up to 38 therefore he received another 4 units of platelets. This time he had no reaction and his platelets came up to 52.

Day 7 - Tuesday November 16th, 2010
Bill's sutures from the implanted triple lumen catheter were removed and the tegaderm dressing was changed. Tegaderm is not just a dressing; it is a multi-functional, sterile, waterproof yet breathable barrier that prevents germs and bacteria from getting to the site and helps in the healing process.

Shortly after a bowel movement Bill started to experience severe pain in his lower back. Even with increased pain medicine the pain would not subside. An x-ray of the abdomen, a blood test, urine test, bladder scan and ultra sound were performed and all came back negative. Bill's urine was getting darker and darker, he was starting to get bladder spasms and his appetite diminished. Very little sleep was achieved.

Day 8 - Wednesday, November 17th, 2010
Bill started to experience some confusion, the abdominal pain continued. Platelets and Hemoglobin levels were low so Bill received 8 units of Platelets and 2 units of blood. Late morning Bill started to pass clots in his urine. By late afternoon he was not able to pass urine and required a catheter to irrigate the bladder. A CT with contrast of the kidneys was performed. Prior to the CT, Bill was given a large amount of fluids to hydrate for processing the contrast through his kidneys. Just prior to the CT Bill began to labor when breathing and had a gurgle.

Practically no sleep was achieved this night.

Day 9 - Thursday, November 18th, 2010

At 5:00am Bill spiked a fever of 101.3 so the staff initiated fever protocol. Blood is taken for many different types of cultures and Maxipime (cefepime) 2,000mg - antibiotic - was started. Due to two sleepless nights I asked Margy to come to Tampa to help out so I could get some rest. Bill's blood counts were low again so he received 2 units of blood and 2 units of platelets. Blood and clots continued to drain through the catheter so the doctors started CBI - continuous bladder irrigation. We had a consult with a urologist and nephrologist. The CT shows inflammation in the tubes between the kidneys and the bladder. Bill's breathing was weak, his O2 saturation was as low as 71 so Bill was put on oxygen. The doctor informed us that Bill tested positive for the BK virus and had an infection in his bladder.
From Wikipedia - The BK virus rarely causes disease since many people who are infected with this virus are asymptomatic. If symptoms do appear, they tend to be mild: respiratory infection or fever. These are known as primary BK infections.
The virus then disseminates to the kidneys and urinary tract where it persists for the life of the individual. It is thought that up to 80% of the population contains a latent form of this virus, which remains latent until the body undergoes some form of immunosuppression.
Presentation in these immunocompromized individuals is much more severe. Clinical manifestations include renal dysfunction (seen by a progressive rise in serum creatinine), and an abnormal urinalysis revealing renal tubular cells and inflammatory cells.
In bone marrow transplant recipients it is notable as a cause for hemorrhagic cystitis.

Due to all the sudden developments, The staff moved Bill from the 4th floor to the 3rd floor where they had more staffing and resources to handle higher acuity patients. The 4th floor has a patient to nurse ratio of 3 to 1. On the 3rd floor they have the ability to provide a ratio of 2 to 1. I was so happy to have Margy here to help. Margy stayed the night to help out so I could sleep.

Day 10 - Friday, November 19th, 2010

Normally I don't have anything to report prior to 5:00am, however this day started shortly after midnight. Bill had become very agitated and delirious, his breathing was maintaining with the use of oxygen from two different sources. A nasal cannula and a face mask. From midnight to 2:15am I sat by the bedside holding Bill's hand and watching him. Margy tried to get some rest during this time. I went to bed around 2:30am and was awoken to help Margy at 3:15am. Bill had gotten up and needed to get to the bathroom but was tangled with his various lines and equipment. As I tried to untangle him, he became combative, harmful and delirious. Between the medicine and the kidney function not working properly he was not himself. We did not get any sleep for the rest of the evening. The doctors could not sedate Bill due to the kidney function getting worse. During the morning rounds Dr. Mishra informed us that Bill's condition was not good and that he had acute kidney insufficiency. Normal creatinine level is 1.0 for someone Bill's size, he was up to 3.7.

From Wikipedia - Creatinine is filtered out of the blood by the kidneys. If the filtering of the kidney is deficient, creatinine blood levels rise.

His BUN level was 54, normal is between 7 and 20.

From Wikipedia - The BUN ( Blood Urea Nitrogen) test is a measure of the amount of nitrogen in the blood in the form of urea, and a measurement of renal function. Urea is a substance secreted by the live, and removed from the blood by the kidneys.

Basically he was starting renal failure. Bill was running a fever, had fluid overload on the lungs, X ray showed opacity which could indicate an infection or Pneumonia, mental status changes and the BK virus earlier than they would expect which could indicate that other virus' may present. If his breathing worsened we might have some decisions to make regarding intubation. Most of his medications were changed to reduce the fluid intake to allow his lungs to remove the fluid. Some of the changes were made to reduce the impact on the kidneys. The doctor suggested we get some family members to come and be around Bill to help him over this speed bump. We made some calls and his family was here by 8:00pm the same Day.

His father (Sam), brother (Ed), Sisters (Lue, Marietta), Daughter (Marie) came in from New York/New Jersey. Margy was already here, his son Billy who lives in Deltona, Florida was here by 1:00pm. The following day his niece (Mollie) and daughter-in-law (Johanna) also came. Bill was in and out and did not really know they were there.

Day 11 - Saturday, November 20th, 2010 - (Happy Birthday to Mike's sister Barbara and niece Sarah)

Saturday for Bill and I started around 2:00am. It was a great beginning!!! He got up and went to the bathroom and when he came out he was back to himself. The delirium had passed, he was still dealing with the other problems from the day before. We did get a few hours sleep before his family returned to be with him. He did not really remember seeing them the day before, but he was very happy to see them, especially his father who does not like to fly. We had a really nice day with his family.

The creatinine level came down to 1.9 and the BUN came down to 41. Both indicating that the kidney is starting to work again and do its job.

Bill with his dad

Bill with his son Billy and his daughter Marie

Day 12 - Sunday, November 21, 2010

The family were on their way back to their respective homes by 8:00am with the exception of Marie who was staying until Monday. The creatinine and BUN levels were maintaining. The BK virus causes bleeding in the bladder and spasms, so the continuous bladder irrigation has not been stopped as the doctors want to prevent clots. Due to the kidney problems they were not able to start treating the BK virus.

Bill started with really bad mucocitis. He is not able to swallow liquids or solids without pain. I have never seen anything like this in someone mouth. sores and cuts everywhere. Bill's tongue is swollen and he is having difficulty speaking.

From Wikipedia -Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer. Mucositis can occur anywhere along the gastrointestinal (GI) tract, but oral mucositis refers to the particular inflammation and ulceration that occurs in the mouth. Oral mucositis is a common and often debilitating complication of cancer treatment.
Oral and gastrointestinal (GI) mucositis can affect up to 100% of patients undergoing high-dose chemotherapy and hematopoietic stem cell transplantation. As a result of cell death in reaction to chemo- or radio-therapy, the mucosal lining of the mouth becomes thin, may slough off and then become red, inflamed and ulcerated. The ulcers may become covered by a yellowish white fibrin clot called a pseudomembrane. Peripheral erythema is usually present. Ulcers may range from 0.5 cm to greater than 4 cm. Oral mucositis can be severely painful. The degree of pain is usually related to the extent of the tissue damage. Pain is often described as a burning sensation accompanied by reddening. Due to pain, the patient may experience trouble speaking, eating, or even opening the mouth.

Day 13 - Monday, November 22, 2010

WBC - 1,870 / Neutrophil count 440

Today is the first day that the blood work is showing signs that the stem cells are grafting!! Successful grafting is when the neutrophil count is greater than 1,000 for two consecutive days.

The mucositis is at its worst. Bill has not eaten any food for almost 5 days, this started with the kidney failure. The doctors have decided to start Bill on TPN to get him some nutrition.

From Wikipedia - Parenteral nutrition (PN) is feeding a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulas that contain nutrients such as salts, glucose, amino acids, lipids and added vitamins. It is called total parenteral nutrition (TPN) when no food is given by other routes.

Bill is still having trouble from the BK virus. He is still on the CBI, blood in the urine and pain from the bladder. Every morning Bill runs a fever around 101. So far, other than the BK virus and the bladder infection, Bill has not tested positive in any of the many cultures that have been performed.

the next post will cover day 14 through 16.

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.