by Jena | Feb 18, 2016 | Advance Care Planning, Stem Cell Transplant |
This morning Dad had his third bone marrow biopsy and received two bags of platelets in anticipation of the procedure to place his central line catheter tomorrow, Friday, February 19th.
At 1:00 p.m., we met with two different nurses, not Denise, and Dr. Ayala. First, we learned that the 19 year old donor passed the physical examination. Excellent.
Next, Dr. Ayala examined Dad and confirmed that Dad is ready for the transplant and that his disease
is minimized as much as possible. Dr. Ayala reminded us that every transplant is different and that there will be bumps along the way. He stressed the importance for Dad to stay very active physically and mentally. Dad bragged to the doctor that he was in the gym earlier in the week for 45 minutes with 20 minutes on the stationary bike.
Dr. Ayala reviewed the risks of the transplant again. CTCL patients are at a high risk of skin infection since CTCL is a skin related cancer. He also discussed graft versus host (GvH), and he reminded us that Dad’s chance of death is 25-30%, which is higher than the traditional CTCL patient due to Dad’s age. At 75.9 years old, Dad will be the oldest patient to ever receive a stem cell transplant at the Moffitt Cancer Center. Wow! Doctors seem to believe that Dad’s body is closer to that of a healthy 55 year old. The medical staff continue to be amazed with Dad’s positive demeanor and “can do” attitude. They also recognize the outstanding support Mom provides non-stop daily. I know that these are key drivers in Dad being a candidate for a stem cell transplant. Dad is raising the “age” bar.
As we discussed the risk of death, Dr. Ayala said he would be honest and forthright about Dad’s condition. Dr. Ayala shared his view about not using life support. Dad reviewed his advance directive, now using Five Wishes, with Dr. Ayala. Dad made it clear as to when he would want to be resuscitated and when he would not. I inquired about ensuring that Dr. Ayala would indicate the best time to transition to hospice.
Days are named and tracked based upon the actual day Dad is to be infused with the donor’s stem cells. The days leading up to that day are noted as “negative” while the days after are noted as “positive.”
The plan for Sunday, February 21 (aka DAY -5), is for Dad to call at 10:00 a.m. to see if a bed is available. If so, we go to Moffitt and check Dad in as an inpatient. If no bed is available yet, Dad will go to the Blood and Marrow Transplant clinic, also at the Moffitt Cancer Center, for blood work and prep for his first of four days of chemotherapy, fludarabine, to begin Sunday evening. The assumption is that a bed will eventually be available that same day.
Last, we spent a fair amount of time with two pharmacists, Bryan, a pharmacist resident, and Amy. All of Dad’s current and future medications were reviewed in great detail. We discussed the two chemotherapy drugs, fludarabine and melphalan, to be given during the first four days of Dad being an inpatient. Melphalan is a drug, which may cause Dad mucositis. Last year, Dad experienced severe mucositis of the mouth as a terribly painful side effect of FOLOTYN, another chemotherapy drug. He was living on milkshakes and Boost for one to two weeks.
The pharmacists said that Dad will be infused with the donor’s stem cells as soon as they arrive…even in the middle of the night, which is the famous DAY 0.
We also discussed what will be done to prevent GvH. The donor’s cells could attack Dad’s skin, GI tract and liver. The first method of prevention is through intravenous cyclophosphamide on DAY +4 & DAY +5. This drug can delay the time for the cells to engraft. Cyclophosphamide does not harm the donor’s stem cells. It spares the good T-cells (regulatory T-cells) and knocks out the harmful T-cells. The second method of GvH prevention is sirolimus, starting on DAY +5.
Also starting on DAY +5 is a daily neupogen shot to accelerate the recovery of the new stem cells. The daily shots of neupogen will be given until Dad achieves a neutrophil count of 1,500/mm3 of blood.
by Jena | Jan 7, 2016 | Advance Care Planning, Brentuximab Vedotin, Radiation Therapy, Stem Cell Transplant |
Feeling a bit nauseated first thing this morning, Dad started his day at 8:00am at the Moffit Cancer Center’s main campus with a psychological evaluation by Dr. Booth-Jones. Dad claims he “passed.” Dad described several of the activities he had to perform as a part of the evaluation…drawing shapes, selecting alternating colored circles, reading a list of words, repeating sentences read by the psychologist, etc. I actually think Dad found the testing to be interesting and amusing at the same time. I guess we can take heart that Dad is not that loony after all.
All joking aside, I have read that the patient’s mental state before, during and after can impact the outcome of the stem cell transplant. Anxiety and depression have considerable consequences in the months and even years following the transplant. It is best to recognize distress and depression early on through a screening evaluation so that proper psychosocial therapy and pharmacologic medication may be used to help the patient deal with stress before, during and after transplantation. I am appreciative of Dad’s evaluation because Mom and I do not believe Dad would ever admit to being sad or depressed. Dad is constantly trying to remain mentally strong so that Mom won’t worry.
A warm & friendly living will.
At 10:00am, Mom, Dad and I met with Penny, social worker assigned to Dad. We had not met Penny at last week’s meeting with a social worker because Penny was out of the office for the holidays. Penny provided Dad copies of his advance directives (living will and health care surrogate/agent) that he has on file with Moffitt today. I inquired about Five Wishes. I view Five Wishes as a “warm and friendly” living will. Five Wishes also includes the health care agent. Penny said that Dad may use Five Wishes to replace his current one. She also provided another alternative from Project Grace. Penny told us that we could obtain copies of Five Wishes at the Social Worker office rather than order them online from the Five Wishes website. After taking the time to review both, I am recommending that Dad use Five Wishes. I even told Husband that we should update our own advance directives with Five Wishes. I was made aware of Five Wishes through a hospice discussion on the CTCL listserv. (If you haven’t already subscribed to the CTCL listserv and are dealing with CTCL, I highly encourage you to join. It is an online discussion forum with over 1,300 members.)
While riding in the car leaving Moffitt, Dad said we should do some funeral planning. Our family has never been one to avoid or even shy away from end-of-life topics. It probably has a bit to do with personalities. Mom, Dad and I are all type A and appreciate a solid plan…whether is it going on vacation or how one wants to be buried. We LOVE a plan. We keep our conversations about end-of-life light hearted. I got a good giggle when Dad asked me “what do you want at my funeral?” I laughed and reminded him that it is his funeral and that it should be exactly as he wants. Dad then told me that it didn’t matter to him since he “wouldn’t be there” anyway, and it should be what Mom and I want. Classic Dad…ever so selfless.
At 3:30pm, we were at MIP (Moffit Cancer Center at International Plaza). Dad had another dose of radiation to treat the same spots. At 4:30pm, we met with Dr. Montejo, radiation oncology. Dr. Montejo asked how Dad was feeling, and Dad told him about today’s nausea. Dr. Montejo indicated that it could be from the radiation Dad is receiving on his lower spine. That spot is being radiated differently and is “shooting” at Dad from the back and the front. Radiating the lower spine can impact your colon, which may cause nausea. Dr. Montejo had a good look at Dad’s very large tumor on the left/front side of his head..nearly the size of an egg. Dr. Montejo was amazed at how that tumor wasn’t visible when Dad did the radiation simulation two weeks ago. That tumor is open and showing signs of necrosis (visibly black). The good news is that Dr. Montejo indicated that is not infected. Mom was very relieved. Mom takes it personally to be the perfect caregiver by cleaning the open, weeping tumors every evening after Dad showers. She then applies bandages to cover the opens areas. She pads the most sensitive ones hoping the padding will allow Dad to sleep better when he rests his head on his pillow.
Dad doesn’t like to take medication. His whole life, prior to cancer, he would tough it out. He must have thought medication is for wimps. I find I have to tell his doctors that he needs to be encouraged to take pain medication when in pain. Why suffer so much? I had that conversation today with Dr. Montejo. The egg sized tumor is painful. Dr. Montejo convinced Dad to keep a small bottle of OxyContin in his “back pocket” and to take it, if needed. Dr. Montejo feared that Dad might find himself without the ability to get prescription pain medication over the weekend.
Tomorrow is Dad’s last day to do the spot radiation. On Monday, Dad starts eight days of total skin electron therapy (TSET). Dad is not showing any signs of disease on his hands nor feet. This is exciting in that Dad will get to have his hands and feet shielded during the TSET. When Dad did TSET this past summer, I recall Dad having the largest blisters I had ever seen on the tops of his feet. Dad does have a few spots close to his eyes and will have to wear internal eye shields to protect his eyes while radiating around his eyes. If the “egg” and other numerous tumors on his head have not been reduced after those 8 treatments, Dad may receive scalp radiation afterwards.
Tomorrow, Dad will be seen by Dr. Ayala, transplant. Dr. Montejo warned Dad that Dr. Ayala would not like the egg-sized tumor. Dr. Ayala wants Dad to be practically tumor free with no Sézary in his blood before he receives the transplant. I joked with Dad and said that Mom and I could try to cover up the egg with a little concealer makeup…perhaps Dr. Ayala won’t notice.
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