Pre-Transplant Staging Appointment: overview and nurse's visit Part 1

We drove up to Cleveland for two days of meetings and testing for Todd's staging pre-transplant.  The testing itself wasn't bad.  We breezed through most of  his appointments ahead of schedule.  While we don't have any of the official test results back yet, the heart tests looked good according to the technician.  He said there was a little leaking around one of the heart valves, but that most people have this issue.  The equipment used is just so sophisticated, that it sees every little detail these days.

They did take 19 vials of blood to run all the necessary blood tests, which seemed like a lot, but the phlebotomist's assured us that it is only equal to about a cup of blood.
Test results back on the lungs, bone marrow biopsy, and extensive blood work will be back in about a week.

I can't speak for Todd, whether he would agree, but I think the meetings with the bone marrow transplant nurse, social worker, and the insurance specialist was more overwhelming than the physical tests.

First, we met with the bone marrow transplant nurse.  We went over many of the items included in the 3-ring binder of information they mailed us months earlier.  As she walked us through the bone marrow transplant time frame and process, we began to realize what a difficult road lies ahead of us.  The most daunting information was learning about the toxicity and application of the chemotherapy medications and other drugs and their side affects.  He will be taking two intensive chemotherapy drugs to kill off his own bone marrow.  The first one will be Busulfan which will be given for give days, four (4x) a day, with each treatment lasting 2  hours.  The main side effects will be decreased blood counts, nausea, Mucositis, and Esophagitis, hair loss, discoloration of the skin and nails, possible seizures, and scarring of the lung tissue.  To combat the threat of seizures, they will give him an anti-seizure medication called Dilantin once a day while he is receiving the Busulfan.  We quickly caught on too that about every medication he will receive can cause diarrhea and/or upset stomach, so I won't repeat that side affect from here on out: it is a given!

Why all of those pre-transplant tests?  Not only were they taken to make sure Todd had no major health problems, but also to give his doctors a "baseline" to use for comparison in the future to detect damage to the lungs, liver, etc.  Since Busulfan can rarely cause the scarring of the lung tissue or Pulmonary Fibrosis, they will repeat a pulmonary function test one month after he is discharged from the hospital to monitor any damage or problems.

Mucositis and Esophagitis is when the lining of the mouth, gums, and the esophagus become inflamed and sore during treatment.  As a result, he might develop mouth sores, dry  mouth, sticky saliva, difficulty chewing or swallowing, or a burning sensation in his mouth or throat.  (Center for Consumer Health Information, 2013).

After the five days of Busulfan, Todd will receive two days of Cyclophoshamide also know as Cytoxan.  It too will be given through his cental venous catheter once a day for four hours.  Some "pre-medications" will be administered to help decrease the side effects.  The same type of side-effects will be possible with this drug too: decreased blood counts, Mucositi, Eophagitis, hair loss, discoloration of skin and nails plus additional side effects like: nausea, vomiting, loss of appetite, burning and/or painful urination, changes in tastes, dizziness, jaw pain, nasal stuffiness, and blood in the urine (hemorrhagic cytitis) and possible heart damage (cardiotoxicity).  (Center for Consumer Health Information, 2013).  To combat the possibility of blood in the urine, he will be given a medicine called Mesna/Menex intravenously along with additional IV fluids.  To prevent the cardiotoxicity from developing, he will have an EKG to monitor his heart before each dose of Cytoxan.

On day -1, the day before Transplant, he will receive no chemotherapy, but instead will be given a day for his body to recover somewhat.  The transplant will occur, likely in the  morning, on September 16, 2014.

If all of this isn't even to overload your mind, the nurse then went on to discuss all the other kinds of drugs he will be given to aid in the grafting of the new bone marrow, to fight viruses, bacterias and diseases, and to counter-act the chemotherapy side effects.

The next class of drugs are the immunosuppression drugs such as Tacrolimus, Mycophenolate Mofetil, and Cyclosporine.  With such an new and immature immune system, Todd will be susceptible to contracting infections, viruses, bacterial infections, and the most common disease after transplant: Graft versus Host Disease (GvHD).

Todd and I agreed to participate in a random clinical trial to determine whether he will receive the typical standard treatment of Methotrexate, a chemo drug used to prevent GvHD and Tacrolimus or a variation treatment that contains mini-doses of Methotrexate, along with Tacrolimus, and Mycophenoate. (I won't go into all the side-effects from these drugs now, or you too will feel the same scary feeling of overload that we did.) The trial is only used or continued if Todd is NOT showing symptoms of GvHD.  If he shows any symptoms at all, they terminate the study and continue with the standard treatment or whatever medication regime is dictated.  As a late note here: we just found out that Todd will be in Group B which will receive the mini-doses of the Methotrexate. We are happy to try this. Less toxicity exposure would be good!

Besides immunosuppressants, he will receive steroids with them to help prevent and/or treat GvHD and a host of others complications listed here:
Anti-viral drugs: Acyclovir, Valganciclovir (Valcyte), Ganciclovir (Cytovene)  Anti-viral drugs are given to keep him from subcoming to viruses, especially cytomegalovirus (CMV)
Anti-biotics: Amoxicillin and Ciprofloxacin
Anti-fungals like Fluconazole (Diflucan), Itraconazole (Sporanox) Posaconazole (Noxafil), andVoriconazole (Vfend).  Has to abstain from raking leaves, mowing grass, beer, woodworking, etc.  Anything that would expose him to spores for some time after the transplant.  
Immune Globulins (IVIG): under a variety of brand names, to help fight infections
(Again, too many drugs to discuss all the side effects).

While most of these drugs will be given intravenously while he is hospitalized, some are in pill form, and most will be prescribed in pill form after his initial discharge from the hospital.  Basically, we were told to go buy the largest pill container we can find! I have a medication chart that I can make copies of to help me keep track of the times he takes them all.

In addition to keeping up with his medications, I also have a chart to use to help me when I need to take his blood pressure and temperature multiple times per day once he is released.  Anytime he develops a fever of 101.4 or greater, I have to run to him to the Cleveland Clinic Emergency room since this is usually indicates the beginning of an infection.  

The nurse reviewed all the ways GvHD can manifest itself after transplant but I will save that for the next blog.  To be continued to Part 2.