Another Cycle Down and Some Good News

So first let's start with the good news. My most recent scans came back all clear! The only thing that was on it was the nodule which was radiated and that is continuing to shrink. It measures just 2 mm now. With my last two scans being clear I have a new streak now. My last streak ended in December 2016, so this is really exciting!

Right now I'm midway through cycle 5 and I plan on having one more round of Doxil. The plan will be finalized when I have an appointment with my oncologist on Thursday, but that's what I think the plan will be. Remember the original plan was 6 months of Doxil + Temsirolimus, so I think 2 months of that, then 4 months of Doxil alone should be good enough. Hopefully I can stop because I'm really burnt out and would like a break.

As for current side effects, in cycle 4, some more of the skin toxicity showed especially on my feet, and it is getting much worse this cycle. I have a few mouth sores which are as bad as they were when I was on Temsirolimus. And to top it all off I just caught a cold which is making me even more tired right now.

Not much else to report on. I've mostly been taking it easy. A few of my favorite tv shows just came back on including Mr. Robot, and The Walking Dead which have kept me busy. Also, I've been enjoying Penn State football which are off to a great 8-0 start. Thanksgiving is coming up in a few weeks which is a holiday I always look forward to.

The side effects have been rough, but at least it looks like I'm in a good place right now. I'm looking forward to the end of treatment and many more clear scans.

New Treatment Plan

Not long after my last blog post I had an appointment with my oncologist to decide what to do next and that is to go with Doxil alone. My oncologist recommended Doxil because he doesn't want me to burn through more chemos than is necessary. Trying all of these chemotherapy drugs can make the cancer more resistant and can also eliminate me from trials. Going back on Doxil isn't introducing anything new and is a treatment that can work well for me. I wish I could continue with Temsirolimus, but that is out of the question because it amplified the bad side effects from the Doxil. My oncologist said that the burns I had were the worst he has ever seen from these drugs. Going forward I will continue to receive Doxil once a month and the plan is to do a few more cycles. Also my dosage of Doxil is increased from 30 mg/m2 to 40 mg/m2 because that is the only chemo I'm receiving. So far I had two cycles of Doxil + Temsirolimus and just had my first cycle of Doxil alone. I have a CT scan the week after my 4th cycle, and if that scan is good I think I'll do one more cycle.

I'm almost through this first cycle of Doxil alone, and I'm managing much better. I had one small mouth sore that resolved in a few days, and one burn in my crotch area. To help with preventing the burns I placed ice packs on all of the areas that were previously burned during the infusion. I had the infusion on a Friday and did not leave the air conditioned apartment the entire weekend. I also took off work that Monday to keep out of the heat. Those 4 days I iced every few hours, and when I showered it was a cold one. I have also been applying Udderly Smooth Cream with Urea to the previously affected areas nightly. For mouth sores I drink Healios every morning after eating breakfast. I did a lot of these things when I had the nasty side effects before so really the big difference is that I'm not receiving the Temsirolimus, but taking these extra precautions can't hurt.

Other than that not much is new. It was a pretty uneventful summer. My treatment and its side effects really sidelined me for the most part. I feel like all I have done lately is go to work, rest, chemo, repeat. One bright spot of this summer was when my parents and my brother made an impromptu visit for the weekend before I resumed my treatment. I felt pretty good so we did a lot. We went to a nice barbecue restaurant, walked around Carytown, and visited Maymont. It was a really hot weekend, but we made the most of it, and it really lifted my spirit before resuming my treatment. The pictures below were taken at Maymont.

Next post will be in a few weeks after I get my next scan results. Take care everyone!

Treatment Paused

In my last post I let you know that I was having a tough time with the chemo. Well, it got a lot worse for me since then. The mouth sores got so bad that even with painkillers and the mouthwash it was still difficult to eat soft foods. In a little over a month I lost 10 lbs, and honestly it could have been a lot more if I didn't push myself so hard to eat. But as bad as the mouth sores were, the pain from those paled in comparison to the hand-foot syndrome.

My armpits got a lot worse as did my groin. I developed the burns on my elbows, fingers, the back of my knees, and butt. Let me take through one of the hardest two week periods of my battle with cancer...

Monday: I pushed myself to make it in to work the Monday it escalated. I was in a lot of pain. I remember taking Oxycodone twice that day of work just to get through it. Both walking and talking were so painful. I admit I was a little short with people that day. I was so frustrated with the situation.

Tuesday: On Tuesday it was worse so I took the day off. I couldn't make it in. The whole day I rested in bed. I couldn't even get clothes on because my groin and armpits were so sore, I just covered with a blanket.

Wednesday: The next morning I had an appointment at VCU, and making it there was really difficult. I was basically walking like a chicken with my elbows out and legs spread because that was the only way to not be in so much pain. At that moment I knew that I needed some help so I called up my mom to come down. On Tuesday I sent the team a picture of the burns on my armpits to prepare them, and judging by their reactions they never see it get this bad. We decided to pause treatment which I couldn't fight them on. I was prescribed Silvadene ointment, and directed to apply it to the affected areas twice a day. I also got more Oxycodone which really helped with taking the edge off the pain. Later that day my mom arrived. I felt a huge amount of relief when she got here. It was way too much for me to handle by myself, and I don't know how I managed to make it by myself for so long.

Thursday: This was really my first true day of recovery. My mom was able to help me get the ointment and bandages on. I was able to rest in bed, and not worry about moving around. She went out and bought some groceries to get us through the week which was a big help. I was almost out of groceries because I didn't want to make things worse the past weekend, and I was optimistic it would have gotten better before running low. I was obviously wrong.

Friday, Saturday, Sunday: Mostly the same, slow but progressive improvement of the burns. Also some new areas began to show. This included the top of my feet, fingers, elbows, and back of knees. I was pretty frustrated with how slow the whole process was because I wanted to make it in to work by Monday, but I still couldn't get clothes on and not be in a lot of pain. My mom brought in some tank-tops so I was able to at least get a top on, but I was still covering up with a blanket. The picture below is where the armpit was on Sunday.

Monday, Tuesday: I was moving around much better. The heat and pain on the burns was down. The mouth sores were much improved so I was eating better, and Tuesday morning I was able to get all my clothing on. I worked from home on Tuesday, and my mom left later that day.

Wednesday, Thursday, Friday: I made it into work, but when I first tried to put shoes on that morning I didn't realize how swollen my foot was from the burns on top of them so I had to wear flip flops. Mostly through these days it was treating my feet, back of legs, and elbows which weren't as bad as the armpits and groin were, but still pretty sore. The picture below was on that Wednesday.

So yeah, not a fun two weeks. This was probably the worst side effect I ever got from chemo, and right up there as the worst pain I have ever had to deal with. I was very fortunate to have my mom here with me. I couldn't have managed without her.

Now lets get to the elephant in the room, the cancer treatment. I feel great right now, but that is only because my last chemo treatment was July 19th and I've missed three consecutive treatments. I've reached out to my oncologist in Cleveland, and his opinion is that I either try Doxil alone, Pazopanib or Cabozantinib. From my last appointment with my oncologist at VCU he mentioned not doing chemo. I'm pretty stressed out about what to do next. I don't feel like any of these are great options. I really believed in the regimen I was on, and it really sucks with how bad the side effects were for me. I have an appointment tomorrow to decide what to do next. Hopefully we get it all figured out.

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.

Relapse #3

Things have not gone well since my last update. I recurred again, and have been scrambling to get treatment setup. It's been a really stressful month, but now that I have a concrete plan I feel like I'm in a much better spot to post an update.

This time it is a nodule on my left lung. A single pulmonary nodule like the last two relapses. I have already taken care of it so here is what happened.

• It was there in August. Missed by the radiologist, and was 6mm. I had surgery a month later for the spot in my right lung to get on Vigil trial. Had they found this nodule I would have likely been on the Vigil trial because I only needed one more vial of vaccine. As you'll see below it might not have been a great fit anyway as the chemo portion did not work.
• Also missed in November, and it was 8mm. Found a spot on my liver which was new, but likely to be a hemangioma (no problem there).
• Finished chemo in February, and had a CT scan. Still growing and now 1 cm. Missed again by radiologist. Hemangioma on liver still worried me, so asked for an MRI to ease my doubts.
• MRI at end of March verifies that liver spot is a hemangioma, but radiologist finally sees the lung nodule. Now 1.1 cm. Some doubt was made about this because MRIs are unreliable for lung scanning, but CT afterwards validated that this was a likely met.
• After consultation with Cleveland Clinic a decision was made for radiation. The nodule was in a difficult spot and would require a lobectomy. Recovery time would be much worse than my past two wedge resections, and radiation provides an 85-90% local control rate compared to 80-85% for surgery in this particular case.
• Decided to have radiation at Penn since they have a really great radiation department, and I could stay at home in Pennsylvania for the week to rest.
• May 14-20 I had Stereotactic radiation performed on the left lower lobe nodule. The nodule is dead.

If I had to describe this whole process in one word it would be "frustrating." How could so many very competent radiologists miss this nodule? It grew throughout the chemo. I really struggled throughout the IT regimen, and it wasn't even helping me. That is so upsetting. Had it been found earlier I could have pivoted to a different regimen, and avoided the pain and lost time.

It was a struggle after recurring to get a plan setup as well. My calls and emails to my treatment teams at both Penn and VCU weren't getting me anywhere. I waited for over a week at Penn with no response so I just setup an appointment with the radiation oncologist myself without a referral. Communication at VCU wasn't good either. I called everyday one week and never got a call back. I had to setup an appointment to be able to discuss something that could have been done over email/phone. Very inefficient.

The only hospital that I really can't be frustrated with is the Cleveland Clinic. I emailed my oncologist there, and I had a virtual visit setup within the week. That Monday my case was presented at the multidisciplinary tumor board, and the plan to go with radiation over surgery was decided. In other words, my whole treatment plan was decided in just a few days. I even texted him on another day and he personally called me later that same day to ease my doubts with the treatment plan he recommended. I wish I lived in Cleveland just so I could get my treatment there. I have more confidence with the Cleveland Clinic than the other hospitals involved in my case by far right now. 

As I've stated here in the past, at this point in my care it is extremely important to see a doctor with as much Ewing's recurrence experience as possible, and no one beats my oncologist at the Cleveland Clinic. There is no standard treatment for recurred Ewing's, so treatment will be based off of the doctor's instincts. 

I'll get another post on here about my experience with the radiation treatment. I'd rather keep it separate from this one. As for the chemo plan I will be going on Doxil + Temsirolimus. It will be for 6 months. Doxil will be once a month, and Temsirolimus will be once a week. This regimen is supposed to be more taxing on my body than IT. Doxil is a new version of the "Red Devil", but it doesn't damage the heart. Temsirolimus is a drug that has been shown to sensitize cancer stem cells to chemotherapy. It is believed by my care team that the original therapy five years ago eliminated the fast growing Ewing's cells, but what has been problematic for me is these subpopulations of chemo resistant, slow growing Ewing's cancer stem cells that survived. The approach here is for the Temsirolimus to sensitize the cells, and the Doxil to sweep them up. It sounds great on paper, hopefully it works.

How do I feel about recurring again? Horrible. Almost as bad as the first recurrence for me. I understood when I recurred the second time. I did not believe in not doing chemo with the first recurrence so it kind of proved my bias with wanting chemo at the time. I think that is why this recurrence feels worse. I did chemo and it did not work. The nodule continued to grow unfazed. I put myself out there more this time and still got beat. Also, it went to my left lung, so it is spreading further. I have not had a clear scan since December 2016. I'm both physically and mentally tired. I just want to move on and not worry about this anymore, but it just feels like I'm so far away that I'll never get there. My oncologist still feels positively about my case, but from my point of view it is hard to. Hopefully this treatment plan works.

Lookout for a post soon about the radiation treatment I had. Take care!

Cycle 8 Complete

I have completed my 8th and final cycle of chemo. It was a challenging week of treatment, but it's all finally over.

In a lot of ways my final week felt the same for me as it did when I completed chemo five years ago. I felt happy to be done with chemo and all of its side effects, but at the same time I felt anxious about losing my chemo "safety net." I was never able to figure this chemo out so I was probably more happy to be done with it this time. As much as I hate having to do chemo I know that is the only thing keeping the cancer from coming back. I just have to trust that the chemo did it's job now and that is a difficult challenge for me.

Unlike last time I rang the bell at the end of my treatment. For those of you unfamiliar with this, it is a tradition for a cancer patient to ring a bell on their final day of chemo. I didn't ring the bell last time because I felt it was foolish to celebrate too early. Since then I have endured two recurrences requiring two lung surgeries and six more months of chemotherapy. So I guess I was right, it was too early to celebrate. It was too early to think that I would never need more treatment, but that doesn't mean that I can't celebrate making it through the treatment. So this time I rang the bell knowing that this doesn't mean that the Chemo-Cozy will stay in my closet never to be worn again, but that I got through 6 months of chemo and that's reason to celebrate. I haven't really celebrated much over the past five years, and I think I need to change that going forward. I have a ton of scans to get through to making it five years cancer free and I am going to make more of an effort in recognizing each milestone along the way.

I was also given a certificate for completing chemo, and you can see it below. On the last day I brought in donuts for the nurses. The nurses at VCU have been great, and I wanted to show them how appreciative I was for their help throughout all of this.

Eight Cycles Down, and No More To Go! We made it!!!

Cycles 6 and 7 Complete

Tomorrow I start my eighth and final cycle. Here is how the last two cycles went...

Cycle six went much better than cycle five. The Zantac helped with the bloating which in turn helped with the nausea. I'm taking 150mg twice a day. I take one pill with breakfast and one before bed. I also switched to Marinol for nausea, and that worked better than Ativan which I took during cycle five. Ativan seemed to just knock me out, and not do a lot for nausea. Marinol makes me sleepy, but also reduces the nausea substantially. Another new thing I did was eat an apple everyday. They helped my bowels move which helped with the bloating. Overall, it was an event free cycle. I threw up less than cycle five, maybe twice all week. My mom was here with me for the week because cycle five didn't go that well. But, as I mentioned above, cycle six went great compared to the previous one. Everyday when we waited for the valet to bring the car to the front, we agreed that I would be able to drive myself home if I were alone. So we decided I would do cycle seven by myself.

Cycle seven started bad, but I recovered well and finished strong. On Monday after finishing chemo I picked up Subway, and woofed it down when I got home because I was starving. I took a Marinol and went to bed. Two hours later I woke up and played on my phone for a little bit. Then all of a sudden I felt really dizzy, and soon after that I threw up my whole Italian B.M.T. It was a mess. It was all over me and the bed. It was the biggest mess I ever made throwing up by far. It was so bad that I didn't even bother to wash some of the sheets. I just tossed them, it was so gross. I spent the rest of the day washing the rest of the sheets that I didn't dispose of. I finished washing them around 11pm, keeping me up far longer than what has worked for me on this chemo. The reason I got sick was because of the Marinol and the way I ate the hoagie. I have felt sick on the Marinol before so this wasn't the first time. We dropped the dose down to 5mg, and that worked much better for me. It helped with the nausea just as well, and I didn't feel the negative side effects as much. I was previously on 10mg which is the maximum dose.

One problem I had this cycle which was new for me was getting stuck with the IV. I was able to get through the previous two cycles with only two IV accesses each week. This time my blood return was so poor at the end of each treatment day that the access couldn't be used the next day. I had blown veins, and the nurses seemed to have difficulty sticking me. My arms are a mess.

All things considered I think last cycle went well. Other than Monday I didn't really throw up much other than bile a few times, but that's been normal for me on this chemo. Monday set me back with rest, but I made up for it by resting more when I was at the hospital. I was able to take care of myself all week, and never felt like I needed help.

It was different this cycle being by myself. It was my first time having chemo at the hospital without my mom there by my side. She's a huge help being there. Having someone there to help out with food and other things to keep me comfortable is great, but most importantly having someone to talk to really keeps my mind off of things. I definitely missed her last cycle. I'm very fortunate to have someone there for me like my mom.

Last thing to mention. I had a CT scan of my chest and abdomen, and everything looked good. No evidence of disease. I'll be finishing my last cycle of chemo almost five years to the day from the last time. It really puts into perspective how long I have been dealing with all of this. Since then I have finished three years of college, moved to Virginia, and worked two years. Hopefully this week of chemo will be my last, but if it isn't I'll continue to push forward like I've been.

Seven Cycles Down, One To Go!

Cycle 5 Complete

Cycle five was basically a treatment reboot. New drug administration, new environment, and new side effects. Here's how it all went...

The big difference this cycle was that I had my treatment done through IV rather than orally. This change required me to have my treatment at VCU. I expected it to be cramped at the infusion center since the waiting room is always crowded, but there was a lot of space back there. The nurses were really nice and great about getting my chemo started quickly. Things seemed to move quicker than when I was at Penn which was awesome. We arrived at 7:30 and left at around 12:30. The support services were great too. They had service dogs on two of the days, and a preacher on two days. I appreciated seeing the dogs. They really took my mind off of what was going on for a little while, and put a smile on my face.

The treatment itself was both better and worse than before. The big reason I switched was because of anticipatory nausea. I was getting so sick just taking the meds that I wasn't getting 100% of the drug down and it was getting worse every time. The IV chemo fixed that, and honestly it wouldn't matter if I threw up at the hospital because it's in my veins anyway. Other than the anticipatory nausea and anxiety being essentially eliminated, everything else seemed at least a little bit worse. Fatigue wasn't something I dealt with too much with oral chemo (I was able to work everyday with it), but with IV I became very tired as the week went on. I slept 13-15 hours on most of the days. I also dealt with nausea, and still threw up six times this cycle. It makes me feel a little better knowing that the nausea I dealt with on oral chemo was not all in my head, but also makes me sad that I have been unable to solve the nausea this long. I felt bloated and full from the steroids which caused some of the nausea. They prescribed me Zantac to help with that, and I'm also going to use Healios this cycle. I've mentioned that I was going to try the Healios in prior cycles, but never really gave it a chance because it was triggering my anticipatory nausea. This cycle I'm going to try a new flavor of Helios and stick to it no matter what.

Cycle five was definitely harder than I expected. I planned on being able to go to work in the afternoon of each day, and not really needing my mom to be down here. I never made it to work, and by the end of the week I couldn't even take care of myself. Even though the side effects as a whole were worse I would still much rather IV administration than oral because I wasn't all stressed out. My quality of life improved with IV so I'll take that as a win.

I was very fortunate to have my mom with me for cycle five. She was a real lifesaver, and I would not have been able to get through the week without her. I wish I could take care of myself, but I can't. Hopefully this cycle will be better.

Five Cycles Down, Three To Go!

Cycle 4 Complete

I start cycle five tomorrow, so here's how cycle four went...

In short, cycle four went horribly. Lots of vomiting. Lots of stress. This might have been my worst cycle of chemo ever. It was bad right from day one. When I took the medicine I used the lidocaine mouthwash first, and then took the chemo with cola. The mouthwash worked great with the pills, but didn't do much with the horrible taste of the Irinotecan. The cola did just as well of a job as the cranberry juice, which is to say not well at all. I got it all down, and then went to bed. A few hours later I woke up and immediately rushed to the bathroom to throw up. I barely made it, but at least I didn't throw up all over the back of my door like I did last cycle when I was home in Pennsylvania. I wasn't even close to making it that time. I went back to bed afterwards, and about an hour later it happened again. And again, and again, and again. I lost count, but I threw up like eight times that night. I felt like I was dying. What was most crazy about it all was that I still managed to make it to work the next day. I felt weak, but the Marinol took away most of the nausea and I was able to be productive. As a side note, I've never smoked or drank in my life so I would have no idea what it feels like to be buzzed/high, but I'm pretty sure the Marinol makes me feel high.

Day one really set the tone for the cycle. The cola and Lidocaine didn't make much of a difference. I had four more days of what has been a struggle since the start. I threw up every day before taking the meds from intense anticipitory nausea. I tried taking the Temozolomide pills, and then taking an hour break before taking the Irinotecan so if I did gag up the medicine then the pills would be already absorbed. That gave me less pressure, but I ended up throwing up before taking the Irinotecan anyway. At least I didn't lose the medicine since it's already absorbed. Luckily I didn't have any more all nighters of throwing up after day one. Just like every other cycle I felt back to normal on Day 8.

I had an appointment with my oncologist last Wednesday and we both agreed that its best to switch to IV administration. My quality of life on the oral regimen was nonexistent. I was stressed out all day on treatment days. All I thought about was the medicine when I had chemo that day. The throwing up in the night was really troubling too. Receiving the medicine in a hospital with nurses keeping a closer eye on me will be much better. My mom is also going to be with me for this cycle. She will be a lot of help driving me to the hospital and being with me while I'm there as well as taking care of me at home. We wanted to take extra care this cycle since its more travel while I'm on the drugs, and also because unforeseen things can come up with a treatment change. I'll decide if I need extra help for cycle six. I'm very grateful that my mom is able to come down to Richmond to be with me this cycle.

There are both pros and cons to switching to IV. I should not have any trouble receiving the medicine by IV. The nausea will be handled better since the nurses will be watching me for hours at the hospital. My stress level will drop by a lot if things go well. The big drawback is the time I will be there. The nurse I spoke with told me it will take 6-7 hours, but my oncologist didn't know how long it would take specifically. He thinks at least a few hours. I start at 7:30 in the morning, so I'm thinking I will be missing at least a half of a day of work. My manager and team don't expect me to be in the office this week, but I'll try to be there if it makes sense. I hate my cancer treatment forcing me out because I'm a hard worker and never miss time. Another downfall of switching to IV is bringing back bad memories of when I received chemo with my initial diagnosis. Although I think what I've gone through with this chemo has been more emotionally scarring than what I was on before, at least in terms of strictly having the drug administered.

I'm obviously very disappointed that I couldn't get through the whole treatment orally, but at least I got through half of it. Like I've mentioned before, I was not taking an oral form of the chemo, I was drinking a drug meant to be injected; two very different things. With the amount of nausea and the side effects I dealt with, it at times felt inhumane. With that said, I feel somewhat proud of myself for making it this far, and I have a lot of confidence that things will go much smoother from here on out.

I hope you all had a wonderful Christmas and New Year's. Below is a photo of me and my brothers on Christmas morning.

Four Cycles Down, Four To Go!