Chemo #11 - wrapping up adriamycin

Late last year when we took a trip to Scottsdale, Arizona research doctors at Tgen (Translational Genomics Research Institute) took a sample of bone marrow from Garrett’s hip bone and looked at the cells for genetic markers which can indicate which chemo drugs might work best against Garrett’s cancer. Tgen has matched some genetic mutations to some chemo drugs giving cancer patients a better chance at getting the right drug the first time instead of just looking at treatment success from other people with the same type of cancer. This is especially helpful information for Garrett’s oncology team because his neuroendocrine carcinoma diagnosis is vague and no other case is exactly like Garrett’s.  In reality, all cancer patients are unique and the same type of cancer can respond to the same drugs differently in each person's body.  The ability to look at each person as an individual and customize treatment is a great step forward in cancer treatments that are shorter, easier and more effective.

Adriamycin, the chemotherapy Garrett currently gets, was one of the drugs identified by Tgen and has been helpful in decreasing cancer in his bone marrow thus escalating his body’s ability to make healthy blood cells. But it is a tough drug that is hard on the heart, so limits are set for the total amount of adria that is safe to take. After three more doses of adria (up to #14) Garrett will have had the cumulative dose our doctor feels is safe for his heart. Because Garrett still has probably some living cancer cells in his body we will need to start a new chemo drug at the conclusion of this one to keep suppressing new growth. We do not know yet what that next chemo drug will be. Our oncologist will be returning to the report made by Tgen to look at other drugs matching Garrett’s genetic markers and then recommend to us which one to try next. Having the report is also a good argument for petitioning insurance coverage for drugs not normally used for his type of cancer. As soon as we know more about the next drug up, we will share the info!

One week of hyperbaric oxygen therapy is now complete with no significant changes in the way Garrett feels or how his skin tumor is healing (we expect to see/feel changes after 2-3 weeks of treatment, with total sessions up to 4-8 weeks). Other than boring Garrett to tears for two hours, it’s not a terrible drive to Tacoma on days other than Friday. We just purchased a beautiful 15 year old conversion van in good shape with a sofa-bed, comfy captains chairs, tv and dvd player and a few other handy amenities for road trips! Our regular cars aren’t very kind to Garrett’s spine so the commute is made much less painful with this acquisition and it gives me a great spot to hang out in while he is in the treatment tube! We were very lucky to find this van in time to drive it to these every afternoon appointments and we’re looking forward to taking it on a few fun trips this summer too.

Here is my co-pilot waiting for Garrett to get out of the hyperbaric tube!

New Hope

http://seattletimes.nwsource.com/html/localnews/2011734807_provenge30m.html

FINALLY! A cure for cancer. Not exactly what I need but a huge step in the right direction.

I haven't really researched the specifics of this drug or how it exactly works but the article claims it has been used for treating advanced tumors, which is basically what my cancer is. I know this is only for those afflicted with prostate cancer but just the fact that it is used in treating tumors gives me new hope that there are other drugs out there that may be in the FDA approval process or are going to be developed in the near future.

Now I know it is never good to get your hopes up too much but to me every cancer afflicted person should be ecstatic by the FDA's approval of this first ever vaccine for cancer. I can't even describe how amazing it would be to have a vaccine that would treat my tumors. No more chemo, no more radiation, etc.

Here's to hoping that the vaccine for whatever the heck I have is close to being developed.

New hyper treatment: Hyperbaric Oxygen Therapy

Although our general course of treatment has been to kill cancer globally in Garrett’s body, the original tumor at the surface of his skin has been one of our choice targets. As I said before, destroying this tumor won’t stop other areas of growth, but it would be a symbolic victory and an improvement to our quality of daily life. The last targeted treatment, hyperthermia, had very few long term risks and offered the possibility of healing this chronic skin deterioration. Since ending that treatment we have not seen the tendency toward healing that we had hoped for, but we don’t know yet that it was a total failure. The changes that happened to this tumor during hyperthermia may still be a good sign, but our previous attempts at treating it with radiation may have gone too far and caused this persistent state of non-healing. Divers out there may be familiar with hyperbaric oxygen therapy (HBO) for decompression sickness, but it is also useful in promoting healing of chronic wounds such as bed sores, diabetic foot sores, and chronic radiation damage.

“Chronic radiation damage is called osteoradionecrosis when the bone is damaged and soft tissue radionecrosis if it is muscle, skin or internal organs which have been damaged by the radiation. Since the 1970’s, surgeons of the head and neck region have come to recognize the value of hyperbaric oxygen treatments in treating damage of the jaw bone due to radiation. Hyperbaric oxygen has had some of its most dramatic successes in treating or preventing damage to the jaw bone as a result of radiation treatments. It has now also been applied to damage of the brain, damage of muscle and other soft tissues of the face and throat, damage to the chest wall, abdomen and pelvis as a result of radiation treatment. Papers in medical journals also report success in treating damage to the bladder and intestines due to radiation. The high dose oxygen provided in the hyperbaric chamber is carried in the patient’s circulation to the site of injury to be available for repair of the damage done by the narrowing and scarring of the blood vessels. Each treatment typically takes one to two hours, and usually 30-40 daily treatments are needed for healing radiation damage.”

These 1-2 hour treatments involve breathing 100% oxygen (about 20% in normal air) in a pressurized chamber so that the oxygen levels in your blood stream reach 10-13 times normal levels. The increased oxygen level in the blood provides support to injured tissue to promote the growth of new blood vessels, purge toxins from the body and enhance the killing of bacteria. In some clinics you can watch TV while getting treatment or sleep, after our consultation at St. Joseph’s we will know better what Garrett’s experience may be like.

Interestingly, HBO is being tested in conjunction with some cancer treatments to heighten cancer cells sensitivity to radiation and chemotherapy and help prevent radionecrosis. It is also being tested out for brain repair after a stroke and body repair after sports injuries.  It seems like another good treatment option with low risks and a bright future for many ailments.

Chemo #5 up and up

At Garrett's chemo appointment this week we got several pieces of good news. One, Garrett’s blood counts were up. It hasn’t been long since his last blood transfusion, but some weeks he’s already feeling low, not this time. Two, he gained 3 lbs over the last two weeks! Adding some extra calories everyday seems to be sticking for the first time in many months. Three, our oncology team referred Garrett to the Hyperbaric Medicine department at St. Joseph’s in Tacoma to consult on the potential for a hyperbaric chamber to promote healing at the skin tumor which has not improved visibly since the end of hyperthermia treatments. We look forward to learning more about hyperbaric medicine and I’ll post more information on it after I do some research this weekend. In two weeks we will also get images of his eyes taken to better determine the source of vision troubles. New treatment options are always welcome, we hope for more good news on the horizon!

Here is Garrett hooked up in the chemo room at the end of this round of treatment.  It was a quiet day in the doctor's office and everything went smoothly.

Where it all happens

I wanted to take a photo of Garrett while he was getting chemo yesterday, but it was so busy that I didn't want others in the room to feel like I was taking their picture too. But today Garrett had to stop in for another blood boosting shot, so he got a picture of the chemo room. The recliner chairs are pretty comfortable and two large televisions are ceiling mounted (but usually have The Tyra Show on, ugggh) Garrett usually brings some music, sleeps or goes online on his phone while the infusion takes 1-2 hours.

Chemo dose #2 + iron toxicity

Second dose of Adria down. Garrett had decent blood counts this week, with little red and white cell decline since last Monday and increased platelet counts from transfusing them last week. It is a bit early to conclude, but our oncologist is hopeful that this is a sign of bone marrow recovery. It is a delicate balance, but we may bump up the chemo schedule in a few weeks since his marrow seems to be tolerating it so well. Any sign of response is a great thing to sustain our hope.

In addition to blood transfusions, we have a few other tools to combat chemo induced anemia (low red blood cells) and leukopenia/neutropenia (low white blood cells). After Garrett’s chemo infusion today he got two shots; one drug to stimulate red blood cell production called Procrit and one to prevent low white blood cells call Neupogen. These shots seem to help when Garrett’s bone marrow is already responding to chemo. At the time we tested his bone marrow and found it mostly replaced with cancer, these drugs were not strong enough to overcome the cancer. And at that point Garrett’s insurance company decided to stop paying for the (judged ineffective) shots.

With a few promising chemo treatments under our belt, our doctor was able to petition the insurance company to re-gain coverage for these drugs. Combined with an effective chemo the shots do seem to help to reduce or delay Garrett’s need for blood transfusions. This is especially important because with every red blood cell transfusion the body acquires iron. As I understand, in normal blood production the body is helped by and uses up iron, but when you are not making your own blood the extra iron just builds up after each transfusion and cannot be disposed of by the body. Overload of iron (transfusional hemosiderosis) can happen after 10 – 20 transfusions and results in fatigue and eventually organ damage. There is one expensive drug to help your body eliminate iron, but it caused Garrett to puke each time he took it! So we went back to trying to get his marrow working with chemo and delaying transfusions whenever possible. And fewer transfusions make Garrett a happy man!

Spring fever

We have lots of good news to share this week. Hyperthermia finished up this Friday. We continue with chemo on Monday and follow up in two weeks to review the success of hyperthermia (or consider additional treatments) and take a few more photos for publication. As we expected, the minimal discomfort and low risks were worth trying this treatment and we hope that it, combined with an effective chemo, will heal at least the skin tumor. It is also gratifying to share information about a lesser known treatment to other skin cancer patients who may benefit from it in the future!

Amidst every-other-day appointments the last few weeks, Garrett had some unusually good days. He has been eating well and maintaining his weight which has become one of our biggest challenges over the last 9-12 months. Symptoms from his cancer, treatments and/or medications eliminate appetite, slow digestion, produce mouth sores and heartburn that all add up to moderate steady weight loss. We added other medications including medical marijuana to counteract each of these problems, but none were alone able to curb weight loss. While we are not sure exactly how, recently he managed to find the right combo of meds and diet to at least hold his current weight and feel okay when eating a regular sized meal! This is a major accomplishment and makes daily life much more tolerable. Biggest challenge now is to keep it up and work on gaining back some weight.

One thing or another goes awry even on the best days, but they have been far closer to our ideal. It is good to see the sun again in our area, spring is on its way, and we are looking forward to having fun while Garrett is feeling this good. A few of our good friends are planning weddings this spring and no doubt fun will be had! In the course of chemo we can expect him to feel worse after each treatment cycle, but last night we had dinner out and watched a movie at home to celebrate the end of hyperthermia – so we are taking advantage of the times he feels good.

Monday, monday, it just turns out that way

Marathon Monday started with hyperthermia in the morning, blood drawn at our regular doctor’s office in the afternoon and then heading to the hospital for a platelet transfusion. Garrett was feeling so good today that we figured he might have decent blood counts – the red cells and white cells were good, but the platelet count concerning. Platelets primary function is to clot blood and with extreme low counts you risk bleeding uncontrollably or developing life threatening complications. Although it is not how Garrett wanted to spend the afternoon – when he was feeling so well – we drove down the street to the hospital’s outpatient infusion floor where all our transfusions are done. It took much less time than when red blood cells are needed, only about an hour. We plan on the next dose of chemo a week from today where we will check all his blood counts again and see if another transfusion is needed. Hope this week is another of not feeling too bad, finishing hyperthermia and eating well to put back on a few pounds before another dose of chemo.

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.