Today Garrett received a blood and platelet transfusion as an outpatient at our local hospital. Transfusions have been part of our life since beginning chemo because the chemo damages fast dividing bone marrow cells which normally produce healthy blood cells. Also radiation treatments that are done near or on bones can damage bone marrow. We have so far radiated his low spine, neck, left shoulder, right skull and just this month the left skull and repairs to bone happen very slowly, over even years, so these areas now contribute very little to his blood counts. So transfusions during cancer treatment are pretty normal for other people, as I understand. Usually for Garrett a few bags of blood take 4-6 hours to infuse, but today it was a 9 hour marathon due to the inefficiencies of hospital operations and one less than competent nurse.
Usually when a chemo series is complete (4-6 months for us) the bone marrow recovers and begins to produce new healthy blood cells again. Last year, a few months post-chemo, Garrett’s blood counts were not showing signs of recovery. In August (2009) our oncologist took a bone marrow biopsy from Garrett’s hip and had it sent for testing. The results were not what we were hoping; they showed cancer cells had majorly invaded his bone marrow. So his trouble producing blood is not only a side effect of treatment, but also a symptom of his disease.
Our focus must be on what we can do about it, but the questions about this new cancer for us can’t be denied. How? When? And why? We can’t answer any of these for sure, but there are a few possibilities. One is that his original skin cancer, which has spread to tumors only on bone tissue so far, spread further into bone marrow cells. Another is that the radiation and chemo we have previously done caused cell damage that predisposed him to a secondary cancer. Yet another possibility is that the bone marrow was compromised from the time of diagnosis, since we had not previously tested the marrow. It may have been controlled with previous treatments, but developed resistance and returned. No matter the way, we began to treat it with a new chemo then took an interesting trip in October to TGen, a research institute in Scottsdale, Arizona, to have a second bone marrow biopsy done.
The results of that biopsy were genetically profiled and resulted in a recommendation for several chemo drugs that might be more effective given Garrett’s cells specific gene mutations. This research and its implications are an interesting topic all to themselves and deserve their own post on another day! So we are just at the start of treatment with the chemo drug they recommended and until we have been on it a while and given the marrow a chance to recover, we have to plan on needing blood transfusion every 2-4 weeks. Hopefully we will see more of the nurses we like along with sensible hospital operations in the future!
Showing posts with label background. Show all posts
Showing posts with label background. Show all posts
Monday, January 18, 2010
Sunday, January 17, 2010
Titanium hardware
This is a look at the work done on Garrett's spine during emergency surgery December 2006. Titanium rods support Garrett's spine where tumors have weakened the vertebrae. They will stay in there forever and don't specifically cause him any pain. They will also not set off metal detectors at the airport, but if TSA starts using body scan images some security screener will get an eye full.
Chemo & radiation general info
Since December of 2006 we have done multiple rounds of several types of treatments, here is a little bit about how they work to fight cancer:
Chemotherapy
Chemotherapy drugs target and destroy fast dividing cells. Since cancer cells are fast dividing and growing uncontrolled they are susceptible to this poison. Two things are greatly unfortunate about this treatment option. One; other types of healthy cells our bodies have are also fast dividing – mouth, intestines, skin, hair, bone marrow (the spongy material that fills your bones and produces new blood cells) are affected by chemotherapy and cause Garrett to feel pretty crummy. Two; if even just a few cancer cells are not destroyed during the treatment they can become chemo resistant by mutating one of several ways which renders the drug ineffective.
To get the treatment Garrett has an IV hooked up to his arm which drips the bags of liquid chemo and other medications to control immediate unpleasant side effects. Some chemo drugs are available in a pill form. The chemo drugs we have tried so far have helped to slow and control the growth of Garrett’s cancer, but they have not been able to get every single cell which means eventually his cancer starts to grow again and we must begin again with a different chemo drug.
Drugs we have tried so far:
Carboplatin + Etoposide in 2007
Cisplatin + Irinotecan in 2008
Taxol in 2009
Methotrexate + Cyclophosphamide (in 2009 taken as pills)
Adriamycin 2010 ongoing
(External Beam) Radiation
Radiation beams are carefully aimed at the location of a tumor. Radiation is able to kill cancer cells, but also damages healthy cells in the area of the tumor and in the path that is passed to get to the tumor. Again, cancer can be resistant to radiation and risks exist when your body is exposed to radiation, like causing future cancers. When you have just one tumor radiation is a helpful tool in achieving a clean sweep of cancer cells when used with or without chemotherapy, but because Garrett has so many tumors radiation is only useful for controlling tumors that threaten sensitive organs or cause him great pain.
Chemotherapy
Chemotherapy drugs target and destroy fast dividing cells. Since cancer cells are fast dividing and growing uncontrolled they are susceptible to this poison. Two things are greatly unfortunate about this treatment option. One; other types of healthy cells our bodies have are also fast dividing – mouth, intestines, skin, hair, bone marrow (the spongy material that fills your bones and produces new blood cells) are affected by chemotherapy and cause Garrett to feel pretty crummy. Two; if even just a few cancer cells are not destroyed during the treatment they can become chemo resistant by mutating one of several ways which renders the drug ineffective.
To get the treatment Garrett has an IV hooked up to his arm which drips the bags of liquid chemo and other medications to control immediate unpleasant side effects. Some chemo drugs are available in a pill form. The chemo drugs we have tried so far have helped to slow and control the growth of Garrett’s cancer, but they have not been able to get every single cell which means eventually his cancer starts to grow again and we must begin again with a different chemo drug.
Drugs we have tried so far:
Carboplatin + Etoposide in 2007
Cisplatin + Irinotecan in 2008
Taxol in 2009
Methotrexate + Cyclophosphamide (in 2009 taken as pills)
Adriamycin 2010 ongoing
(External Beam) Radiation
Radiation beams are carefully aimed at the location of a tumor. Radiation is able to kill cancer cells, but also damages healthy cells in the area of the tumor and in the path that is passed to get to the tumor. Again, cancer can be resistant to radiation and risks exist when your body is exposed to radiation, like causing future cancers. When you have just one tumor radiation is a helpful tool in achieving a clean sweep of cancer cells when used with or without chemotherapy, but because Garrett has so many tumors radiation is only useful for controlling tumors that threaten sensitive organs or cause him great pain.
Saturday, January 16, 2010
From the start
Okay, I am back for a third post on this first day of blogging. We have a lot to say about the past 3 years, but most of our friends and family might know the story so I will try to summarize and readers feel free to skip this one if you remember it. Some medical details are included, a warning for the squeamish.
Also, I have to admit that I am not a doctor. My medical ideas and explanations are oversimplified to what I can wrap my brain around. If you know more or want to read from other sources, please share it with us, every bit helps us to make good choices in current and future situations.
When I met Garrett in 2004 he was almost 23 and he thought he had a bad back and some annoying old sports injuries which caused him occasional aches and pains, but his body was probably already dealing with skin cancer that had spread to his bones. Years before we met he noticed an unusual spot on his skin worthy of medical review, but a strong medical phobia and considerable denial kept him from seeking attention.
In 2006 his back pain majorly increased in intensity and frequency and his unusual skin condition deteriorated. By early December he was in almost constant pain and his feet began to lose feeling and cause him trouble walking. An initial trip to our local ER was a miss when they guessed he had a pinched nerve in his spine and a skin infection. They sent him home with pain medication. 3 days of rest later I came home to take him to a follow up appointment and he was unable to stand and could hardly feel his body from the waist down. Back at our local ER a scan of his spine showed dozens of tumors with one major tumor compressing his spinal cord in his lower back. They urgently put him in an ambulance to transport him to Harborview in Seattle.
After a long night in the Harborview ER and imaging department, the doctors gave us recommendations for immediate surgery to the spine. Not long after that consultation he was in surgery to remove the largest tumor, relieving pressure on his spinal cord, placing two 14 inch titanium rods along each side of the spine, screwing the rods into healthy vertebrae and taking biopsies of his skin tumor and of the spinal tumor removed. Almost the whole day our families waited together, but got positive updates from the surgeons every few hours. He came out of surgery with the nerves in his legs turned back on but no leg strength, a 16” incision down his back like a giant zipper, a long road of recovery ahead and no clear diagnosis except that “this is very likely cancer”.
A few weeks in a crazy urban hospital like Harborview had us all totally exhausted and still no diagnosis, so we transferred to the hospital near our home and began a physical rehabilitation in-patient program. While Garrett worked incredibly hard to stand, take a few steps, begin building back his leg strength and heal around his new spine hardware we got the pathology results that confirmed it was cancer and that they could not conclusively diagnose its origin, but they found it most similar to a rare type of skin cancer.
With basic physical therapy instruction, we headed home to continue with daily visiting therapists. Garrett’s mom was able to move in with us to help Garrett when he was least mobile while I returned to work. Garrett began chemotherapy a week or so later. There are dozens of stories of the great strength Garrett had during this time, of our caring friends, family and community, but I can sum it up with this; we were wonderfully blessed with support and we managed to survive what was surely hell on earth. Six or so months later Garrett was up walking on his own and growing his hair back from a rough, but rather helpful series of chemotherapy.
Also, I have to admit that I am not a doctor. My medical ideas and explanations are oversimplified to what I can wrap my brain around. If you know more or want to read from other sources, please share it with us, every bit helps us to make good choices in current and future situations.
When I met Garrett in 2004 he was almost 23 and he thought he had a bad back and some annoying old sports injuries which caused him occasional aches and pains, but his body was probably already dealing with skin cancer that had spread to his bones. Years before we met he noticed an unusual spot on his skin worthy of medical review, but a strong medical phobia and considerable denial kept him from seeking attention.
In 2006 his back pain majorly increased in intensity and frequency and his unusual skin condition deteriorated. By early December he was in almost constant pain and his feet began to lose feeling and cause him trouble walking. An initial trip to our local ER was a miss when they guessed he had a pinched nerve in his spine and a skin infection. They sent him home with pain medication. 3 days of rest later I came home to take him to a follow up appointment and he was unable to stand and could hardly feel his body from the waist down. Back at our local ER a scan of his spine showed dozens of tumors with one major tumor compressing his spinal cord in his lower back. They urgently put him in an ambulance to transport him to Harborview in Seattle.
After a long night in the Harborview ER and imaging department, the doctors gave us recommendations for immediate surgery to the spine. Not long after that consultation he was in surgery to remove the largest tumor, relieving pressure on his spinal cord, placing two 14 inch titanium rods along each side of the spine, screwing the rods into healthy vertebrae and taking biopsies of his skin tumor and of the spinal tumor removed. Almost the whole day our families waited together, but got positive updates from the surgeons every few hours. He came out of surgery with the nerves in his legs turned back on but no leg strength, a 16” incision down his back like a giant zipper, a long road of recovery ahead and no clear diagnosis except that “this is very likely cancer”.
A few weeks in a crazy urban hospital like Harborview had us all totally exhausted and still no diagnosis, so we transferred to the hospital near our home and began a physical rehabilitation in-patient program. While Garrett worked incredibly hard to stand, take a few steps, begin building back his leg strength and heal around his new spine hardware we got the pathology results that confirmed it was cancer and that they could not conclusively diagnose its origin, but they found it most similar to a rare type of skin cancer.
With basic physical therapy instruction, we headed home to continue with daily visiting therapists. Garrett’s mom was able to move in with us to help Garrett when he was least mobile while I returned to work. Garrett began chemotherapy a week or so later. There are dozens of stories of the great strength Garrett had during this time, of our caring friends, family and community, but I can sum it up with this; we were wonderfully blessed with support and we managed to survive what was surely hell on earth. Six or so months later Garrett was up walking on his own and growing his hair back from a rough, but rather helpful series of chemotherapy.
General info about cancer
Here is some basic background information on cancer and how/why it happens:
Cancer is a term used for diseases in which abnormal cells divide without control and are able to invade other tissues. Cancer cells can spread to other parts of the body through the blood and lymph systems. Most cancers are named for the organ or type of cell in which they start - for example, cancer that begins in the colon is called colon cancer; cancer that begins in basal cells of the skin is called basal cell carcinoma.
The body is made up of many types of cells. These cells grow and divide in a controlled way to produce more cells as they are needed to keep the body healthy. When cells become old or damaged, they die and are replaced by new cells.
However, sometimes this orderly process goes wrong. The genetic material (DNA) of a cell can become damaged or changed, producing mutations that affect normal cell growth and division. When this happens, cells do not die when they should and new cells form when the body does not need them. The extra cells may form a mass of tissue called a tumor.
Although biopsies of Garrett's tumors were taken during surgery in 2006, UW and Dana Farber (Boston) pathologists could not conclusively diagnose the origin of his cancer. It has traits of basal cell carcinoma (a very common skin cancer), but is acting more like a rare aggressive skin cancer called merkel cell carcinoma. The general category we can put it in with some certainty is neuroendocrine carcinoma – healthy neuroendocrine cells are ones that release hormones in response to the nervous system, carcinoma means these were cells in his skin. No matter the specific source of his cancer, our initial treatment options were the same.
Cancer is a term used for diseases in which abnormal cells divide without control and are able to invade other tissues. Cancer cells can spread to other parts of the body through the blood and lymph systems. Most cancers are named for the organ or type of cell in which they start - for example, cancer that begins in the colon is called colon cancer; cancer that begins in basal cells of the skin is called basal cell carcinoma.
The body is made up of many types of cells. These cells grow and divide in a controlled way to produce more cells as they are needed to keep the body healthy. When cells become old or damaged, they die and are replaced by new cells.
However, sometimes this orderly process goes wrong. The genetic material (DNA) of a cell can become damaged or changed, producing mutations that affect normal cell growth and division. When this happens, cells do not die when they should and new cells form when the body does not need them. The extra cells may form a mass of tissue called a tumor.
Although biopsies of Garrett's tumors were taken during surgery in 2006, UW and Dana Farber (Boston) pathologists could not conclusively diagnose the origin of his cancer. It has traits of basal cell carcinoma (a very common skin cancer), but is acting more like a rare aggressive skin cancer called merkel cell carcinoma. The general category we can put it in with some certainty is neuroendocrine carcinoma – healthy neuroendocrine cells are ones that release hormones in response to the nervous system, carcinoma means these were cells in his skin. No matter the specific source of his cancer, our initial treatment options were the same.
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