IHOP Ouchie

Oh IHOP. You sound good at the time, but we pay for your sugary french toast and greasy bacon later! It was worth going out for breakfast since Garrett felt well enough this morning. We just have to be smarter about WHERE to go... next time it'll be Martin Way Diner, they don't skimp on the butter, but its home-style fare is well worth the belly ache!!!

Another day + chemo schedule

Garrett had a queasy evening yesterday. He felt good most of the day, even when I got home from work, but then it snuck up on him. Chemo drugs typically affect the good digestive bacteria so eating can be unpleasant (nausea, indigestion, heartburn, constipation, etc.) so much that sometimes just the smell of food makes him feel nauseous. But today was not too bad and he said he is looking forward to some IHOP tomorrow if he feels good after hyperthermia treatment!

We plan to rest at home this weekend and check his blood counts on Monday. It will be getting near to the nadir period where blood counts can drop very low. Since Garrett’s bone marrow is already depressed, we can plan on with some certainty a blood transfusion next week or shortly after. Our chemo schedule going forward is to get one dose of Adria every other week, our doctor would like to give it once a week, but we have to get Garrett’s bone marrow making healthy blood cells for that interval to be tolerable. So we will probably alternate chemo and blood transfusions for a few months. When we can see the cancer responding, we might adjust the chemo schedule. As always, we play it by ear and adjust the schedule whenever Garrett is feeling too bad or wanting some time off. We’ve delayed treatments before to take vacations or have an extra weekend at home, so we still live as best we can!

One chemo down

Yesterday Garrett was feeling better than usual, of course he pointed out the irony of feeling good on a chemo day – but I say – we’ll take it! After hyperthermia we picked up gyros and had lunch at home before heading to our oncologist's office. At the office Garrett had his blood drawn and counts checked. We met with Dr. Ye (our regular doctor since diagnosis) who gave us news of Garrett’s relatively good blood counts that were high enough to proceed with chemo. Garrett then picked out a recliner chair in the chemo room. The infusion of Adria takes about 1 hour, but he was also due for a monthly bone strengthening drug called Zometa that added another 45 minutes to the treatment.

Zometa (zoledronic acid) is a useful drug for Garrett’s condition because it can strengthen bones that are weakened by cancer. There are some claims that Zometa itself slows or prevents tumor growth on bones, but it is not advertized as a sole treatment for cancer at this time – it is used only to strengthen bones during or after other treatments like chemotherapy. Some of the problems cancer patients have when their cancer involves solid tumors on bone:

Bone fractures—As cancer weakens the bones, the risk of fractures increases. The long bones of the arms and legs, as well as the spine, are common sites of fractures.

Spinal cord compression—Cancer on your spine can put pressure on the spinal cord and cause intense back pain. Damage to the nerves in the spinal cord can eventually cause paralysis and changes in bladder function. (All of which happened to Garrett in 2006)

Hypercalcemia is when bones release calcium into the bloodstream in amounts that are dangerous. This condition may occur with bone metastases due to excessive bone loss. Symptoms of hypercalcemia include nausea, vomiting, heart palpitations, loss of appetite, and fatigue.

Zometa has some of its own side effects, but they are the same or less bothersome than symptoms Garrett already has and he doesn’t notice any decline after getting the drug infused. Even after getting Adria and Zometa infused yesterday, Garrett felt well again today! The Husky basketball team is winning tonight, so I am sure that is making him happy and the movie Sister Act II just started on the Lifetime channel so I am also a happy camper! Time to get back in the habit, goodnight!

Getting hyperthermia

I described hyperthermia treatment in previous posts, but... a photo is worth a thousand words... here Garrett is getting treated this morning, only 5 more to go!

Treatment ahead

Another hyperthermia treatment was completed successfully this morning. I sat in the treatment room while Garrett lay on the table, propped with lots of pillows and had the microwave machine pointed at his skin tumor. Luckily, Garrett said that me gabbing his ear off made the hour fly by! Usually he listens to his iPod and somewhat sleeps. We have about 8 more hyperthermia treatments to do, but they will be scheduled where possible around the other treatment scheduled to start on Monday – Adriamycin chemotherapy.

You can find detailed Adriamycin information at http://www.chemocare.com/bio/adriamycin.asp

Garrett had one dose of Adria a few weeks back, but within a week of that treatment we had to check into the hospital for a couple nights to get rescue blood transfusions and testing for other complications. Luckily, no major issues surfaced and the blood transfusion got him back on his feet. We held off on Adria and started hyperthermia to his skin tumor and radiation to a small left skull tumor (not in the brain, but near enough to be a future concern) and now we are preparing to resume chemo.

Monday will be a long day for Garrett, but he will get along with Adria some strong medications to counteract any immediate discomfort. They should help him to rest comfortably for a few days. Then we will check back in with our doctor to see how his blood counts are doing and go to the hospital for another transfusion if the counts are dropping. Every chemo drug is a little different, but Adria usually drops your blood counts lowest 10-14 days after you get it (a time called “nadir”) so we can expect Garrett to feel the worst one to two weeks after each treatment. We have high hopes for this drug and know that it will be a very rough road, but hopefully an effective one!

Getting published for hyperthermia!

Garrett had a tough time sticking it out through the hour long hyperthermia treatment today, but we got some good news from the radiation oncologist who is directing his treatment. The skin tumor appears to be responding well; although it feels sore to Garrett right now, this may be a sign that there are more healthy cells in the area and less cancer cells.

Since beginning this treatment our doctor has been photographing the tumor and he plans to include the photos in a publication about hyperthermia! The success of this treatment when used for merkel cell carcinoma patients has been written about in Europe, but very little has come out in the US, so we are excited to be a part of spreading news about helpful treatments to others who are looking for more options.

Garrett said he was excited to tell people that he was once a model!

Transfusion day

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!

Hyperthermia - A fever kills cancer

Hyperthermia as a form of cancer treatment is pretty simple and has very few risks. At high temperatures up to 113 degrees most cancer cells are damaged where most healthy cells can survive. A heating element (think microwave) raises tissue temperature above what cancer cells can stand for up to an hour, several times a week, for several weeks in a row. The heat also increases blood circulation which aids in healthy healing. Because some healthy cells will get damaged, there can be skin irritation, but there are hardly any other risks or side effects. Interestingly, whole body hyperthermia is possible to treat metastatic (spreading) cancer, but heat blankets or water has to raise your entire body to at least 111 degrees… an uncomfortably hot jacuzzi for an hour would make anyone feel nauseous or pass out.

This treatment has been around for a long time, but until recently they couldn’t control the temperatures well enough to keep patients from feeling great pain and burning. Clinical trials are still being done, but most recent research shows it works best when done at the same time as chemo or radiation.

Garrett is now partially through his 3 times a week hyperthermia treatments and has some skin irritation similar to a sunburn. Like radiation, we are using hyperthermia to control just one tumor, not cure his entire disease. But the tumor we are treating is a very important one – it is the skin tumor which we suspect was the origin of his cancer. Eradicating this tumor won’t stop other sites in his body from growing, but it would be a moral victory and improve comfort and flexibility for his neck where the skin tumor resides.

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.

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.

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.

Hello blog

Garrett asked me yesterday to set up a blog for us to keep sharing his story and new treatments with everyone. I will do my best to summarize what has happened so far and keep up with future posts and Garrett will post when he is feeling up to it.

Hope this helps keep everyone in the loop, visit often and please ask questions if you want to know more details or find anything unclear. Don't know why we didn't start one sooner!