[dancarr]

From diagnosis to a stem cell transplant in 5 months

by dancarr on Wed Aug 24, 2016 11:36 am

A multiple myeloma diagnosis changes your life.

On March 15th, 2016, my wife scheduled a semi-annual cholesterol screening and complete blood test. Along with the blood test, we were checking on chronic pain that we both were suffering in our right legs. The doctor suggested that we were both suffering from piriformis muscle spasms. As it turns out, my wife was indeed suffering from a piriformis muscle problem, but mine turned out to be a little more involved.

We left the doctor’s office with a prescription for a muscle relaxant, which we filled and went home expecting to improve.

When the lab results were received the next day at the doctor’s office, the nurse called and said that my blood numbers were not normal and the lab had possibly made a mistake. They asked me to come back in to be retested. A week later, I returned for a second blood test. The next day the doctor asked me to come in to the office to discuss the results.

As it turns out, the doctor does not ask you to return to the office for a casual visit. The lab results were returned on Thursday and the doctor wanted to talk to me on Friday. Most doctors do not have that kind of open appointments readily available. On Friday we arrived at the appointed hour and the doctor came in with a solemn face and demeanor. This is not a good sign. After the second lab results in a week showed the same results, the doctor gave us the straight diagnosis of multiple myeloma. He suggested that I immediately schedule an appointment with an oncologist specializing in multiple myeloma.

My primary doctor recommended an oncology doctor that we were unfamiliar with. My wife has been diagnosed with polycythemia vera for the last 22 years, so we had a long time relationship with an oncology doctor that we knew too well. Her doctor was not taking new patients but since we had such a long relationship with him, he agreed to take me on as a new patient.

We started with blood tests that confirmed the diagnosis of multiple myeloma. He scheduled a complete skeletal x-ray screening along with a PET/CT scan. After the confirmation of multiple myeloma with the PET/CT scan, we started the standard treatment regimen of Revlimid, Velcade, and dexamethasone. We started the first of what turned out to be 4 cycles of 3 weeks each of treatment.

The x-ray showed little involvement. However, the PET/CT scan showed that my femur in my right leg had a bone lesion which was probably causing the pain that seemed like a pulled muscle. The PET scan also found a fracture in my pelvis that was contributing to the pain in my leg. My doctor immediately scheduled 10 radiation treatments in both my leg and my pelvis. After about 5 or 6 treatments, the pain started to get better. After 10 treatments, the pain had resolved to at least 90 percent. A few weeks later, the leg pain was gone.

During my second cycle of treatment, my oncology doctor scheduled me to meet with a myeloma specialist at UT Southwestern cancer center in downtown Dallas. My visit with the specialist put me on a fast track for a stem cell transplant. He looked at the calendar and told me when we could schedule each appointment for follow up and preparation for entering the hospital for a stem cell transplant.

My wife and I both felt a little overwhelmed with the aggressive schedule. We always want to know all the answers to all the questions prior to making such an important decision. Fortunately we had time to think about it and research alternatives. During our research we were able to meet and speak with several other multiple myeloma patients who had had been through the stem cell transplant procedure. Some said that they would never do it again, and others said that they did it to try to prolong this thing called life. It was a little disconcerting to hear both sides of the stem cell transplant experiences. After researching the process and visiting with others and my oncology doctor about their stem cell transplant experience, I decided to go ahead with the schedule as suggested by the myeloma specialist.

Prior to my scheduled stem cell procedure I was scheduled to insert a tri-fusion catheter. This was done at the UT Southwestern Clement University hospital as an outpatient. This went as planned without any ill effects. The only downside with this was the care you had to take to make sure it did not get wet when taking showers. At the nurse's suggestion, we bought some press-and-seal Saran wrap to cover the catheter for showers. My wife did an excellent job covering me with this material prior to each shower. It certainly helps to have an excellent caregiver. Thank you Nancy for your patience and caring love.

The next procedure for the stem cell transplant was collection of my stem cells to be used later in the stem cell transplant process. The collection process was scheduled for early July. Prior to the collection, I received several injections of Neupogen to boost my blood to produce additional stem cells. Prior to collection day I received one injection of another booster to jump start the process.

The next morning I was to arrive at 7:30 to begin the all-day collection process. I was connected to a special computer controlled machine to process my blood. The machine pumps 21 units of your own blood to separate the stem cells from your blood and then return your blood to your body. The tri-fusion catheter was used for this process. The clinic reserved 4 days for the collection process if needed. Some patient’s stem cells are collected in one day, and some take several days. The goal is to collect at least 10 million stem cells so that 2 transplants would be possible using at least 5 million in each transplant. Fortunately for me, they were able to collect 17.2 million stem cells the first day, so the next 3 collection days were not necessary.

After the collection process, we were scheduled and checked into the UT Southwestern William Clements University hospital. The first day in the hospital we received the dreaded melphalan chemo treatment. During the chemo treatment, which took about 30 minutes to administer, they gave me 3 cups of ice, one to chew 30 minutes prior to the chemo infusion, one cup during the chemo infusion, and 30 minutes after the infusion. We were told that this would help to prevent mouth and throat sores from the chemo.

I don’t know if I would have mouth sores without the ice, but I never developed any mouth sores after using the ice protocol. As part of the aftercare from the chemo, I also used a soda / salt water mouth wash several times a day. All in all, I escaped without mouth and throat sores.

The chemo treatment is designated as Day -2. Forty eight hours later, we received half of the stem cells (8.6 million) they harvested a couple of weeks earlier. This is designated as Day 0. Earlier in the day of the stem cell transplant, we were asked if we would like to have a chaplain bless the stem cells. We readily agreed, and the chaplain visited our room to meet us and make preparations for the blessing. The blessing consisted of a short presentation where the chaplain read a statement and we responded.

Blessing of the gift of cells
Danny Carr July 28, 2016

Chaplain - We come today to celebrate a new beginning. Any new beginning stirs up many feelings within us

All - We feel afraid and anxious about the unknown, yet we feel excited and hopeful as we look forward to new possibilities.

Chaplain - The cells we bless today offer new possibilities for your healing. These cells are an amazing gift from the God, the Creator of all life.

All - Thank you, God, for this gift of life and for this transplant as a means for healing.

Chaplain - Loving God, because you care for us, we bring all our fears and hopes to you as we bless these cells for healing.

Patient - Today, I receive these cells with profound gratitude and hope.

Caregivers - May you feel our hope and love supporting you, bringing you renewed energy and hope.

Chaplain - May Divine Love and Wisdom “be healing for your flesh and marrow to your bones” (Proverbs 3:8). God of all love, grace, and healing, bless these cells to heal according to his deepest needs of the body mind and spirit. May you feel your power flowing through every cell, bringing a new day of health, joy, and creative energy. Amen.

I was blessed to have my son and wife as caregivers to share this stem cell transplant with me. I am sorry that, because of her schedule, my daughter was not able to be there during the stem cell transplant, but she was able to visit later that weekend to spend several days with us.

The stem cell transplant process was quite interesting. At the appointed time the nurse came in to my hospital room to begin the preparation process. Then a technician from the Carter Blood Center arrived with my blood inside a large stainless steel thermos. It looked to be about a 10 gallon thermos. This thermos contained half of my stem cells – 8.6 million cells collected a couple of weeks prior. My stem cells were stored in the thermos filled with liquid nitrogen.

When the nurse was ready for the first of 3 bags of stem cells, the technician used special gloves to retrieve one bag of my stem cells. These bags were thawed in a special warm water bath until they were the correct temperature. The remaining bags were kept in the liquid nitrogen until just before they were needed. When the first bag of stem cells was drained and infused into my body, the second bag was thawed and prepared for infusion.

This process was repeated with the second and third bag of stem cells. I have half of my stem cells (8.6 million cells) saved and stored by the blood center, if I ever need a second stem cell transplant or a booster in the future.

There are several milestone days that are tracked based on these days. Different things are expected on certain days post stem cell transplant (Day 0). I believe I was very fortunate to come through the process fairly easy. I had the dreaded diarrhea on about Day +10, which was expected. During this happy time I collected some liquid to be tested for the dreaded Clostridium difficile (C. diff). During the time from collection to the all-clear, the nurses visited my room in hazmat gear. I felt really special. They also put a sign on my door warning everyone who enters my room must be properly protected from C. diff, which can be a deadly form of diarrhea. C. diff is especially prevalent in hospitals and can be highly contagious. A couple of hours later, the nurses burst through my door not wearing the hazmat suits and declaring that the C. diff tests were negative.

During my hospital stay I was awakened between 3 a.m. and 4 a.m. to draw blood for lab testing. They needed to do it this early so when the doctors made their rounds in the morning they would have the results from all of the patients on our floor.

The doctor visit was amazing. The first day, the head doctor of UT Southwestern cancer treatment entered my room about 10 a.m. to discuss my case and my lab results. The team that came with him was quite amusing to me. Along with the head doctor were about 8 people on the team, including nurse prac­titioners and physician assistants and others too numerous to identify. They moved in one group similar to a “cloud”. The head doctor reviewed my results with me while the others took notes or just stood there. When the review was finished, the “cloud” moved on to the next patient.

This occurred every morning. The second day a different doctor was in charge and the “cloud” was smaller. The next week, the head doctor was back on duty, and the “cloud” was larger. It is good to be in charge.

On August 9, Day +12, the head doctor reviewed my results and told me to enjoy my last breakfast in the hospital because I was free to go. I immediately called my angel (wife) and gave her the good news. This was the first time this strong man became emotional. I could barely tell her that I was being dismissed, she got the message anyway. She had to pack up the hotel room and check out while I packed up my hospital room to escape the hospital. We received the news about 10 a.m. and we were in the car headed for home at 11:55 am. Not that we were in hurry or anything. The hospital was wonderful to me and was a beautiful place but when you are released, it feels like a heavy load is removed from your shoulders.

The UT Southwestern Williams Clements University hospital built a special 32 unit stem cell transplant center on the 11th floor of the hospital. During my time in this special unit, most of the rooms were occupied. To gain entrance to this special unit, every visitor had to have their temperature taken and a special computer-printed sticker that the visitor must wear for the duration of the visit. Children under the age of 13 are not admitted. Patients are not allowed to leave this unit during the entire time of their hospitalization. There were plenty of hallways within the unit for walks, but no outside walks of any kind. We were encouraged to walk several times each day. I tried to walk every day except on day 10 when I was encouraged by my body to stay close to the restroom.

I thought I was doing quite well after going home from the hospital. I was eating most of the things I ate before starting this process. I did stay away from fresh fruits and vegetables if not cleaned and prepared at home using the special cleaning process suggested by the cancer clinic.

I thought I was home free with no nausea and no diarrhea since leaving the hospital. On Day +25 my body revolted and reminded me that it was still healing. I woke up and prepared my coffee as usual and noticed a slight nausea. Well, that slight nausea got noticeably less slight throughout the day. The nausea was bad enough to call the doctor to get a prescription for nausea medicine. The nausea stayed with me most of the day and only improved after several rounds of medicine. By evening I was feeling better and the nausea was not bothersome.

[chadsnow]

Re: From diagnosis to a stem cell transplant in 5 months

by chadsnow on Thu Aug 25, 2016 7:16 am

Dan,

I was diagnosed shortly after you. I had the same pain that I thought was muscle pain in my hip that eventually resulted in a fractured femur! You were lucky you found out without having to go through that.

I appreciate you posting your experience with the stem cell transplant. I'm having the same second thoughts about going through it as you did after talking to some people who say they wouldn't do it again.

What convinced you to go through with it? Overall what is your recommendation? What was the worst part? I live close to the Mayo Clinic so will be able to do most of it outpatient.

Wishing you continued recovery and appreciate any input you have.

[dancarr]

Re: From diagnosis to a stem cell transplant in 5 months

by dancarr on Thu Aug 25, 2016 3:48 pm

Chad,

I had a fractured pelvis along with a lesion in my femur of the right leg. I thought I had a muscle pull for 3 months before we went to the doctor for our semi-annual blood test. The doctor originally thought there was a muscle pull, as did we.

As far as a recommendation for a stem cell transplant, I hesitate to do that. I chose this route for myself after careful consideration and due to my age. I was 72 when diagnosed and was told that the window for me was closing as they do not generally do stem cell transplants after age 75. I could have harvested my stem cells and waited for a while, but could not wait more than a couple of years before my age would preclude me from having a stem cell transplant. Tom Brokaw, NBC News, chose to harvest his stem cells and to not do the stem cell transplant, according to his book “A Lucky Life Interrupted”. I chose to go on with the full stem cell transplant process.

My experience with the stem cell transplant was relatively uneventful. I understand that is not the case for everyone. If everyone could go through the process as easily as I did, I would not hesitate to recommend it. My main problem was nausea throughout my hospitalization. The hospital gave me a couple of medications that mitigated this, but they did not eliminate it. I was able to eat a normal diet and only had mild nausea during the time I was in the hospital. After I left the hospital after 15 days, the nausea was not a problem, except for day 25 after stem cell transplant. I took some nausea medication and this lasted only one day.

I hope this helps. Good luck with your decision.

Dan