Yesterday, Barb and I had an adventure in Vancouver. We took an early ferry to Horseshoe Bay so we could stop off at Granville Island and visit the high-priced shops ($19 for a lunch salad) and markets that the west end has to offer. Then off to find the Vancouver General Hospital (VGH) and meet with the stem cell transplant doctor. VGH is a massive conglomeration of buildings that covers several city blocks around W12th Avenue. Surprisingly though, once inside, very easy to navigate.
We met Dr Sanford, who appears to be only a couple years older than Doogie Howser and I was hoping I was not his first patient. Fears were quickly put aside as he gave us a comprehensive overview of the stem cell transplant process and answered all of our questions. The transplant will occur after my chemo regimen, likely around December timeframe. I will be hospitalized in isolation for a few weeks and then have daily follow ups as an outpatient for 1-2 weeks. Optimistically, the entire stay should be about 6 weeks.
Below is some information on the stem cell transplant process (which you'll probably want to read at bedtime to ensure a deep sleep). You will see that the process is complex and risky, so the big question is why put yourself through it. Simply put, if successful, the transplant buys you more time (on average 7 years) between remissions. As there is currently no "cure" for mantle cell lymphoma, the best you can do is try achieve remission for as long as possible.
Stem cell transplant
A stem cell (or bone marrow) transplant replaces stem cells. It is used when stem cells or bone marrow have been damaged or destroyed by cancer, or by high doses of chemotherapy or radiation therapy used to treat cancer.
Bone marrow is the soft, spongy tissue inside your large bones. The bone marrow’s main job is to make blood cells that flow through the body. Stem cells are the most basic cells in the bone marrow, and they develop into different types of blood cells.
If the bone marrow is damaged or destroyed, it can’t make normal blood cells. In a stem cell transplant, healthy stem cells are placed in your body to help your bone marrow start to work properly. The new stem cells make healthy blood cells.
Types of stem cell transplant
The type of transplant is based on who gives the stem cells.
Autologous transplants use stem cells from your own bone marrow or blood. (this is the type I will undergo)
Allogeneic transplants use stem cells from someone else. The donor may be a relative or someone who is not related to you.
Collecting stem cells
The process of collecting or removing stem cells is called harvesting. The stem cells can come from the bone marrow, the peripheral blood or the umbilical cord (from a newborn baby).
For autologous transplants, the stem cells are usually collected when the person is in remission and has recovered from other treatments.
Blood does not normally have many stem cells. A growth factor (G-CSF) will be given for 4 days to stimulate stem cells to grow faster and move into the blood from the bone marrow.
Removing stem cells from the blood is done by IV. An IV is placed in a large vein in the donor’s arm. The IV tubing is attached to a machine that separates and collects stem cells from the blood. After the stem cells are removed, the blood is returned to the donor. The collected stem cells are filtered, stored in bags and frozen until they are needed for a transplant.
Having a stem cell transplant
There are a few steps to get a stem cell transplant. Before the transplant, you will talk with the healthcare team about each of the steps and the effects of the transplant. A transplant is both physically and emotionally hard on you.
Preparing for a stem cell transplant
About a week or two after harvesting, you will receive intensive therapy as an inpatient; used to:
make room in the bone marrow for the donor stem cells
destroy any cancer cells still in the body
suppress your immune system to lower the chance of rejecting the transplanted stem cells
Intensive therapy includes giving high doses of chemotherapy (called BEAM) through a central venous catheter (tube). The treatment will be given over 6 days.
Receiving the stem cells
The stem cells are given to you through a central venous catheter. They settle in the bone marrow and begin to multiply and mature. The day the stem cells are given is usually referred to as day 0.
The transplant is usually done 1 to 3 days after the end of intensive therapy. Medicines are given before the transplant to help lessen your risk of side effects and reaction to the preservatives that are used when freezing the stem cells. The transplant can take about 1 to 2 hours. The length of time varies with the number of stem cells being given.
When you are receiving the stem cells, the healthcare team will watch you closely for side effects. The days after the transplant are numbered as day 1, day 2 and so on. This system is used to describe the timing of events, such as when new blood cells begin to appear or when problems happen.
Engraftment
Engraftment is when transplanted stem cells enter the blood, make their way to the bone marrow and start making new blood cells. It usually takes about 2 to 6 weeks to start seeing a steady return to normal blood cell counts. You will be in the hospital for most of this time.
During this time, you may feel tired and generally unwell. You are at risk of fever, infection, bleeding, anemia, damage to the organs and dietary problems. Most of these problems are worse when the blood count is very low, usually 2 to 3 weeks after the transplant.
You will be kept in isolation because of the increased risk of infection. You will have daily blood tests and regular temperature checks. You will be watched closely for bleeding, nausea, vomiting, diarrhea and any other problems.
Until the bone marrow starts making new blood cells you may:
be given medicines including antibiotics, antifungals and antivirals to prevent and treat infections
need blood transfusions and platelet transfusions
be given colony-stimulating factors to speed up the healing and lessen the amount of time that blood cell counts are very low
You may be given nutrition and supplements through a central venous tube (catheter) (called parenteral nutrition or total parenteral nutrition, TPN) until you can eat by mouth and problems such as nausea, vomiting and mouth sores have gone away.
Discharge from the hospital
Blood tests and a bone marrow sample show when the blood cell counts begin to rise as new blood cells are made. When this happens, and if there are no problems, you may be allowed to go home or move somewhere close to the transplant centre. You must stay nearby (1-2 weeks) in case you have a problem and need to go back to the hospital.
Recovery
Some people may need to stay in the hospital longer if problems develop. Recovery depends on your physical condition before the transplant and the side effects you have.
Many people will not have any major problems after leaving the hospital, but it can still take up to a year to recover. You may feel tired and weak for months. Adjusting emotionally can be hard because of the length of time you feel ill and because you are kept away from other people during your hospital stay in case of infection.
Follow-up
You will have frequent checkups and tests after your stem cell transplant until the new bone marrow is functioning properly and there are no serious problems.
For the first 3 months after leaving the hospital, you will be checked regularly until your blood cell counts return to normal. During this time you can expect the following:
Frequent blood tests are done to check blood cell counts.
You continue to take medicines to reduce the risk of infection.
You may have blood or platelet transfusions.
You may need to go back to the hospital if you feel unwell or if you have symptoms like fever, skin rash, severe diarrhea or trouble breathing.
You need to avoid crowded places and contact with children who have recently been exposed to infectious diseases (such as chicken pox) or immunized with live viruses (such as a certain polio vaccine).
You carry or wear a medical alert card, bracelet or necklace.
After 3 months, the doctor will decide how often follow-up needs to be done. If there are no serious problems, follow-up may be done less frequently as time passes and the risk of problems becomes lower.
If there are no problems, you will have follow-up visits once a year with your family doctor or primary oncologist. You may also sometimes go for an evaluation at the transplant centre.
By the end of the first year, the immune system usually returns to normal and the bone marrow produces blood cells normally again. It may take longer for some people, especially if they are on immune-suppressing drugs.