Treatment Update

I have finished cycle one of my current treatment. This regimen consists of two drugs, Doxil and Temsirolimus. Doxil is an enhanced version of Doxorubicin which I was on with my first line therapy. That was the "Red Devil" drug. Temsirolimus is a new drug for me and has been shown to sensitize treatment resistant cancer cells to chemotherapy. This drug combo was recommended by my oncologist at the Cleveland Clinic, and has demonstrated success in a phase II clinical trial for sarcomas. His belief is that the cancer that has been recurring for me have been cancer stem cells which have chemotherapy resistant properties. Infusions are every Friday with Temsirolimus administered weekly, and Doxil given monthly.

For this treatment I did not have a choice but to get a port because these drugs would cause much more damage to my body if I blew a vein in my arm than the last therapy. Yes, it really sucked having to go and get a port again. I got that thing removed less than a month after finishing chemo the first time around. Having to get a port reminded me once again that I am right back where I started.

This treatment has been really difficult so far. It seems like every chemo I get put on I end up with different side effects than the last which makes it a challenge to adapt. When I think of my first line treatment I remember the main thing I had to deal with was fatigue. My second line therapy was the nausea and vomiting. This treatment has been skin irritation.

Going into this treatment I knew that the two side effects to watch out for are mouth sores and hand-foot syndrome. Despite all of the measures I have taken to prevent these from occurring I have failed to do so. For the first week and a half of the treatment the only side effect I had was fatigue. Then I started developing sores in my mouth. I had three big ones about the size of a large pea, two right in front of my canines on the bottom, and one on the back roof of my mouth. Also the gums on the bottom of my mouth are inflamed and just really painful, painful just to touch. Brushing my teeth is so painful that I guess you could call what I'm doing now is tooth touching, just barely brushing. I have a picture, but I don't think it does it justice, and no one wants to see the inside of my mouth.

Next up is the hand-foot syndrome. Hand-Foot syndrome is a painful skin reaction that usually occurs on the feet and hands, but can occur anywhere as a result of chemotherapy. For me it has been my armpits, groin, and just recently my elbows. I started getting this at the end of week 2. My skin in those areas is chafed, red, blistered, and really sore. See the picture beside this. For the guys out there imagine that being in your groin area. I can't walk normally with it, as the pain is so bad. I also developed really bad acne on my face, worse than any breakout I have ever had.

I was prescribed Clindamycin for the acne, and within a week I was much more presentable which was great. I still have the mouth sores, and the rashes. The mouth sores improved towards the end of the first cycle, and for about a week into cycle two. Then they just blew up again, and are now worse than the first cycle. The rashes were basically healed, but then came back a few days after the mouth sores worsened. The side effects seem to be cyclical so far with weeks one, and four being healing weeks, and weeks two are three being the worst of the cycle. Unfortunately two weeks will never be enough time to heal these side effects for me.

So what have I been doing to deal with the side effects? A lot, too much to go into detail. I will list them below with short notes for each. In future posts I'll talk more about them as I figure out what works.

Mouth Sores

•   Prevention
• Chewing on Ice during chemo infusion - not sure if it has helped, but will continue
• Healios - not preventing, but I believe limiting the severity.
• Treatment
• Salt water, and baking soda with water - keeps mouth clean
• Biotene - I use this first thing in the morning because gums are tight
• Magic Mouthwash - lifesaver, I use this four times a day. Numbs mouth and reduces swelling.
• Aloe Vera juice - just started using, I believe it's helping. Using 2-4 times a day
• Oxycodone - takes the edge off, but makes me sleepy. Mostly use at home, but have used at work when I absolutely need it. Use 2-3 times a day.
• Adjustments
• Baby toothbrush - a little bit softer than a soft adult toothbrush, and smaller so I have more control, and can avoid accidentally brushing a sore area.
• Diet
• Carnation High protein shakes every morning with yogurt. Let yogurt rest in mouth over sores before swallowing.
• Soft foods, Examples: Meatloaf with mac and cheese, spinach, egg, and cheese casserole. Lots and lots of eggs, and milk. Ice cream. Watermelon.

Hand-Foot Syndrome

• Prevention
• Icing the "hot spots" during infusion and 48 hours afterwards, every 3-4 hours while awake will ice groin, armpits, hands, and feet with all of the icepacks I bought - maybe its working, since I haven't had it on my hands and feet so far, but has not prevented other areas.
• Treatment
• Bag Balm - I put this on the afflicted areas to protect against chafing. Still some pain, but reduces it.
• Vaseline - similar to Bag Balm, but not as good.
• Aveeno body wash - did not like it, did not help with moisturizing skin at all, reverted back to suave mens body wash
• Baby powder - helped with chafing, but dried skin out making it worse.
• Urea ointment - use this at night to help clear up the dead skin. I got 40%, but I just purchased Udderly Smooth cream since I think 40% was too much. edit -- do not use on open lesions.

Well that was a lot of details. Hopefully the list above helps you out if you are on these drugs. Also, if you have any suggestions for how to handle these side effects let me know in the comments. I still have more to discuss, but I'll leave it at that.

So to sum up this post, this chemo has sucked so far. Here's to hoping things get better, and as always please keep me and all others battling life threatening illnesses in your prayers. 

Radiation

A little over a month ago I had stereotactic body radiation therapy (SBRT) to a nodule on my left lung. Here is how that process went.

In late April I had an appointment for a radiation consult at Penn. I met the radiation oncologist, learned about the procedure and signed the necessary paperwork to go forward with the radiation therapy. The doctor explained to me that I was an ideal candidate for SBRT because they could minimize the radiation to vital organs. Deciding to go with radiation over surgery was a no brainer this time. The nodule was in a bad spot and would require losing a lobe of my lung rather than wedges like the last two surgeries.

After getting the necessary insurance authorizations which took a week, I had a simulation appointment. For this test, I had a CT scan of my chest for 45 minutes, and was instructed to breath regularly. This test is needed to measure how much the nodule moves when I breath so the physicists and radiation oncologists can better prepare the treatment plan.

A week after that I came in on a Tuesday for my four scheduled treatments. There was a problem right off the bat because the schedule was changed to five days. Tuesday, Thursday, Monday, Wednesday, Friday, which I had not planned for. Luckily they fixed it, and were able to fit me in Tuesday-Friday, and I finished up on Monday. Still frustrating considering they could have scheduled me on the day prior, and I could have had all my treatment in one week.

The treatment itself was pretty simple. Lay on the table, breath like normal, and don't move. Each day the treatment lasts about an hour. The machine isn't that loud which allows music to be played to make the time go faster. The machine takes an x-ray every 30 seconds, and the arm will adjust its position based on the image to best target the cancer. Over the treatment period, the radiation beam will go through the nodule in every direction, maximizing the radiation dose to the tumor while minimizing the dose to surrounding healthy tissue. This targeted radiation therapy allowed me to safely receive five weeks worth of radiation in just five days. This worked great for me with my work schedule.

Other than the scheduling mistake, the only difficult thing I dealt with was fatigue. I think that could have been mitigated by staying in a hotel for the week. The treatment plus six hours of driving a day really took its toll on me as I slept for 13-14 hours each night. Luckily I didn't have to do the driving as I stayed home with my family in Pennsylvania and my mom drove me to the treatment each day.

SBRT Machine

Overall it was pretty easy. Much easier than the lung surgeries I have had before. I had some minor fatigue for a week or two after completing the radiation, but I was able to return to work and normal activities immediately. My lung surgeries took around two months to heal from.

Sorry that this took so long to get out. I've been having a really rough time with the chemo so far, and haven't been up to doing anything lately. Next post will provide more details on that.