Cycle 3 Complete

I forgot to post this a few days ago. Right now I'm in cycle four and an update on that will be soon.

Since my last update I have finished my third cycle of treatment, and also had a CT scan. The results of the CT scan were good. There was no evidence of disease. I was nervous with this one especially since my last nodule showed up on the scan following my last surgery. The odds of that happening were probably much less than last year because I'm actively fighting it with treatment.

As for the chemo I'm still struggling with taking it. I threw up more times this cycle than the last, but luckily still didn't throw up the chemo. I did much better with the nausea throughout the day, but the nausea at treatment time was just as bad if not worse than cycle two. For nausea I would definitely recommend taking Marinol because it worked much better for me than Zofran/Compazine. The only negative is that it made me tired. It will be a challenge taking it while I work, but I'd rather feel tired than nauseous. I felt minimal nausea throughout the day on days one through three, but on days four and five I had some nausea which I think was caused by heartburn. The chemo can cause that. I felt back to normal on day eight just like the last two cycles.

I had an oncology appointment last week, and we discussed strategies to deal with the nausea. For the heartburn, I could try Zantac, but I'm going to try the Healios again. The Healios will hopefully get to the root of the problem by allowing my digestive tract to heal more effectively rather than just treat the symptoms with Zantac. For the anticipatory nausea I'm going to continue taking the Ativan an hour before the chemo. I'm also going to try a Lidocaine mouthwash to numb my taste buds. I've been mixing the chemo with cranberry juice, but this cycle I'm mixing it with different drinks. People on Facebook have had success with mixing with cola. There was some disagreement on there about whether you can mix it with anything other than cranberry juice, and I thought the same, but my oncologist in Richmond and my care team in Cleveland both agreed its ok to take it with cola. I went out and purchased a few different sodas to try with it this cycle. Hopefully, I'll find one that works. I planned on switching to IV, but my oncologist convinced me to try it one more time.

I completed this cycle in Pennsylvania because I was visiting family for Thanksgiving. I really would have liked to feel better, and also do better with taking the medicine when I was home. It was most unfortunate to wake up to myself throwing up on the first night of the cycle. It was the biggest mess I have ever made vomiting. It was all over the back of my door since that is as far as I made it. That pretty much set the tone for the cycle. I didn't want to make my family worry about me taking the meds, but I think I made them worry more. Other than the treatment, it was a great time seeing everyone for Thanksgiving. I'm looking forward to being back in a few weeks for Christmas.

Cycle Four starts this Wednesday.
Three Cycles Down, Five To Go!

Cycle 2 Complete

I'll be starting cycle three this Wednesday, so here's an update on how cycle two went.

This last cycle was definitely worse than the first, and the big difference was the level of nausea I experienced. I had a really tough time with it. I threw up three times this cycle. I'm mostly struggling with anticipatory nausea, but the nausea I experienced throughout the day was a bit worse than last time too. For those of you unaware what anticipatory nausea is, it is basically what you would think it would be. It's nausea caused by psychological conditioning. For example, back when I took chemo five years ago I hated taking the drug, Mesna (which is a drug prescribed to guard against bladder damage from chemotherapy). It would give me a horrible taste and smell sensation. After taking it a few times I eventually became nauseous just thinking about taking it, and it would get even worse as I was about to take it. I have struggled with this way more with my current regimen. The Irinotecan tastes so bad, even mixed with cranberry juice, and the Temozolomide pills make me gag even if it sits on my tongue for a split second. I'm having a tough time writing this post right now. I almost had to pull over my car one day when I was talking to my mom on the phone about taking the chemo the night before. There are so many triggers for the nausea this time. Like the purple gloves I put on to dispense the drugs, the cranberry juice, the time of day, the plastic cups, and of course the smell and taste of the drugs themselves. On the first day I'm able to get through it without much trouble, but on days 2-5, when I'm already nauseous from the day before, it is a real struggle. Adding to my already bad anxiety is the immense fear of throwing up my meds after taking them. Two out of the five days this cycle I threw up prior to taking my chemo. The anxiety and nausea was just too much. I do have to say that those days ended up being the easiest to take the chemo, but throwing up before I take my chemo every-time is not a good strategy at all.

This is obviously a huge problem considering I'm doing all oral chemo. There are two things I could try to help.

One is to switch the drugs handling my side effects. This cycle I'm switching up my anti-nausea drugs because no matter how I tried taking them it didn't seem to do anything at all. Like on day five I didn't take any anti-nausea meds and it seemed only a little bit worse than with them. For the anticipatory nausea I'll be taking Ativan about an hour before taking the chemo. That'll help with anxiety as well as nausea. I'll also be taking Marinol for the nausea throughout the day. Marinol is stronger than Zofran and Compazine so this should be better.

A more drastic solution is to switch to IV chemo. I have seen many other people have to do this because of the issues I'm facing now, but hopefully that won't be me. That will take up a lot of my time. I think I will feel like a huge weight is lifted off of my shoulders if I do end up switching to IV though.

A few positives are that I didn't have any problem with diarrhea, and my blood counts were stable from the last cycle. I only took the Healios supplement once this time because it was triggering my nausea, but I guess I didn't need it anyway. 

This Thursday is Thanksgiving and I start chemo on Wednesday night. I'm leaving for Pennsylvania tomorrow, so I'll be able to rest on Wednesday prior to taking the drugs. This cycle I was worn out before it started due to adjusting back to work. I think I'll have more of a fighting chance this cycle if I'm better rested.

I had a CT scan last Monday, but I haven't received any results yet. I'll give you an update on that in my next post.

I hope you all have a great Thanksgiving.

2 Cycles Down, 6 To Go!

Cycle 1 Complete

Since my last post I have completed my first cycle of chemotherapy. Getting started was a hassle as there were delays with insurance and the pharmacy at VCU. Irinotecan is typically an IV drug, and VCU has never offered an oral solution. To my knowledge the Cleveland Clinic has been one of the only hospitals to offer an oral solution, and that's to help out patients traveling from all over for the Vigil trial. There were multiple calls made from VCU to the Cleveland Clinic, and eventually everyone was on the same page. Luckily it all worked out and I got started on October 10th which was only two days later than I wanted. I pick up my Irinotecan at VCU, and I pick up the Temozolomide at CVS through their specialty pharmacy.

Being on the oral chemo will be much less disruptive than if I were to go through IV. Every cycle I will have bloodwork to make sure I can start chemo. The Temozolomide is simple to pickup since the CVS is within a mile of my house. I pick up the Irinotecan at VCU which is a drive downtown. I let the pharmacist at VCU know that I'll be there to pick it up on Wednesday right when they open, so in theory it should be mixed and ready for me to grab and go. I don't need to see the oncologist every cycle. I'll see him after scans every three months and also if I have trouble with tolerating treatment. My next scan is mid November.

As for the side effects from the chemo, it wasn't too bad this cycle. I had some fatigue on the last two days of chemo and a few days after. My blood counts were down from three weeks ago, but were all in the healthy range. I had some diarrhea for a few days after the chemo. The most noticeable side effect was the nausea which I had throughout the chemo and a day or two after. To reduce the nausea I took the chemo on an empty stomach, and before bed. I also took Zofran twice a day. One time prior to the chemo and the other after lunch. Next cycle I plan on taking either Zofran three times, or weaving a Compazine in there. I didn't take anything for the diarrhea, but I will take the Loperamide when it starts next time. I'm continuing with the high protein, and high probiotic diet. I eat a greek yogurt every morning for breakfast, and I'm eating a lot of protein for dinner. I'm also taking a supplement called Healios which was recommended by my oncologist in Cleveland. He actually created it. Helios helps the digestive tract recover from chemo. I'm supposed to take it twice a day for 10 days. I took it once a day for the first 7 or 8 days. I didn't take it as much because I wanted to see if I would really need it. I'll try taking it more next cycle. Maybe once a day for the 10 days this time. My oncologist said that the nausea and diarrhea should be about the same every cycle. The blood counts could get worse every cycle.

The main difference this next cycle will be that I will be working this time. Being able to rest while taking the first cycle definitely helped. I just went back to work this week so I'm getting back in the swing of things now. Hopefully the side effects are the same this cycle because I could work with that for sure. One big advantage to starting my cycles on Wednesday is that my last two days are on the weekend. I should be alright.

When I take the meds I need to wear rubber gloves to protect myself when handling them. I dispense the syringe of Irinotecan into half of a cup of cranberry juice. The taste is bad, but not as bad as I expected. My strategy is to alternate between a gulp of the cran-chemo and a gulp of cranberry juice. That's worked well. Surprisingly, I had a difficult time with the  Temozolomide pills. The pill has that chemo taste, and I have had a tough time every night taking them. The first time I put that in my mouth I had a rush of emotions dating back to when I had chemo before. The taste and smell is so distinct, and if you have had chemo you know exactly what I mean. I haven't really tasted the pills since then because I swallow it so fast. I'm still sometimes gagging when I'm taking them because I'm thinking about that horrible taste. I hope that I'll be better with the next cycle.

I have been wearing my Chemo Cozy when I take the chemo. I obviously don't need to wear it, but it helps remind me that I've been through chemo before and I'll get through it again. It's been tough these past few weeks with surgery behind me, and it's gotten worse having to start chemo again. This is my second recurrence, but with only having surgery last year it feels much different now. When I took the first dose of chemo it really hit me hard. At that moment it made me realize that I'm really doing this again.

Day 1 of cycle 2 is this Wednesday.
1 Cycle Down, 7 To Go!

Surgery

Two weeks ago I traveled to Cleveland for my lung surgery. The surgery went well as expected. I was the first surgery of the day. My mom and I arrived at the hospital at 6 a.m, and I was knocked out by 7 a.m. The surgery took about an hour. The surgeon removed a wedge measuring 6.2x2.2x1.1 cm which was smaller than last year, but the nodule itself was larger measuring 0.9x0.5x0.3 cm. The surgeon was surprised by the minimal amount of scar tissue from last year's surgery. The margins were clean as well. Unsurprisingly, the nodule was Ewing's. This is officially my second recurrence.

I had some nausea coming out of the surgery, and I did throw up once, but other than that I did pretty well in the hospital afterwards. I was discharged the following day. The six hour drive home from the hospital wasn't fun, but we got home after a few breaks.

As for the trial, I did not make enough vaccine to get to the random selection phase, so I'm out. I made 3 vials, so the nodule was alive, but there just weren't enough cells there. I'm obviously very disappointed about this. I spent a lot of time researching, traveling, visiting, and most of all waiting for the trial to start. I could have had the surgery months ago and been halfway through my chemo by now, but I think it has all been worth it. I have another great oncologist working my case, and I won't have regrets about not trying to get on the trial. At least I won't have to worry about flights and hotels for the next 9 months. Also, it was a good thing that the nodule didn't really grow that much over the past year. An important thing to keep in mind is that there was no guarantee that the immunotherapy trial would have cured me anyway. There is no guarantee it will cure more patients than the treatment I will be receiving now. I will be following the study, and I hope it has great results. Maybe it will be FDA approved someday.

Recovery has been similar to last year. It was pretty painful to breath, cough, sneeze, etc for about a week after surgery, but the painkillers helped manage it. Currently, I have pain at the incision sites, and my lung is still swollen. If I breathe in deeply, my right lung feels tight. I've been pushing myself to keep moving, whether it is with short walks or activity around the house.

Today, I had an appointment with a new oncologist that I was set up with at Virginia Commonwealth University. The appointment went well. I really like him. VCU is only 20 minutes away from me and is a very well rated hospital. The plan is to do 6 months of the IT chemotherapy regimen. It will be 5 days every 3 weeks, and it will all be done orally. I'm hoping to begin chemo on Monday, but it may be pushed back another week due to insurance authorizations and having the drug available for me.

I'm both nervous and anxious about my upcoming treatment. I'm looking forward to beginning my chemotherapy, and being one step closer to getting better. With that said, the further I have gotten out from being on chemo, the more I have grown to dread going back on it again. I'm worried about the side effects of the treatment, and being able to adjust to combat them. From what I've seen some people have no problems on this regimen and some people have to go off of it because they can't tolerate it. I did well on the first chemo regimen, but that doesn't mean I'll do well with this one. Well, like everything in this journey, I just have to pray and hope for the best. I'll keep you all updated.

Surgery Delayed

Last week I was at the Cleveland Clinic.  All of the testing went well. My pulmonary function tests were all normal. On the PET scan no spots showed up (the lung nodule didn't light up because it's too small for a PET scan to pick up). Also, on the CT scan my lung nodule didn't grow. This pattern of growth is not typical for Ewing's. My oncologist told me that my case has been brought up at some of the sarcoma conferences he's attended. He thinks my immune system has been keeping my disease in check, and that this immunotherapy trial could make it even better. At this time, he believes my prognosis is favorable.

I got some more clarity on the trial. Here's the flow of events that could happen. First, I will have the nodule removed from my lung. Then, Gradalis (the drug company responsible for Vigil) will try to make up to 12 vaccine vials for me with those cells. If there are less than 4 vials made, then I'm already out of the trial. This could happen if there are not having enough cancer cells or the cells are not of great quality. After the vials are made they randomly select 50% of the remaining patients to receive the immunotherapy. In all cases I will receive the two chemotherapy drugs Irinotecan and Temozolomide for 9 months.

If I don't make the 4 vials necessary to be in the trial, then I won't need to travel to Cleveland, and I will go back to being treated at Penn full time. If I do make the vials, then I will be treated at the Cleveland Clinic whether I receive the immunotherapy or not since I would be registered in the trial. As far as frequency and number of appointments go, my impression last week was that it will be more of a time commitment than I expected. I still need more clarity on that.

My oncologist estimates 4-8 vials will be made, but anywhere from 0-12 wouldn't surprise him. He had a patient similar to me that couldn't get into the phase 2 trial last summer because the nodule they removed was completely scarred over from his immune system.

The only bad news I got last week was that my surgery had to be postponed to 9/18. This was my oncologist's fault for making a promise he couldn't possibly keep. You just can't schedule a surgery with the best thoracic surgeon at the hospital at the last minute. (Remember that they couldn't schedule it until after the scans were done just in case my disease ended up being spread more.) He was completely booked this week, and couldn't fit me in next week either. My oncologist is on vacation the week after that, so it's now scheduled for 9/18. My oncologist thought I could go with another surgeon, but the thoracic surgeon did not recommend it. The nodule is in a hard to reach spot. The surgery needs to be done differently because of the scar tissue from last year, and also because of the trial. There is a higher risk for complications this time. One last thing to note about my upcoming surgery is that they don't use an epidural at the Cleveland clinic because it causes more harm than good, and it keeps the patients in the hospital too long. I will be at the hospital for 1-2 nights, probably 1.

I'm very impressed with the Cleveland Clinic. The hospital is huge. They have over 40,000 employees, their own fire department, police force, and zip code. It was pretty overwhelming when we got there, but everyone was very helpful in helping us navigate the facilities. My oncologist even took time out to walk me to my next appointment. Going that extra mile really makes a difference. The social worker has also been excellent. She is setting me up to get a lot of my flights completely covered. I feel very comfortable with the doctors taking on my case.

A nice consolation for not having surgery was being home to help move my younger brother Joey into college. He is attending Marywood University and will be studying to become a Physical Therapist. He also will be playing basketball for the school. I'm very proud of him.

Trial Update

The whole situation with this trial has been really frustrating. It was originally supposed to begin at the start of July, but got pushed back a month. Now the trial has been delayed a few more weeks. Currently, I am scheduled to have my scans and pre-testing the week of 8/20. Then, I'll have surgery the following week. The trial keeps getting delayed because the facility used to make the vaccine needs to be updated to meet FDA code. It is a lengthy process to become Phase III ready.

I'm so stressed out right now because there is so much uncertainty, and so many ways things can go in the next few months. We are certain that this nodule is a Ewing's recurrence, but we are letting it continue to grow/spread unchecked for months. I am worried about the upcoming PET scan. I was very skeptical when I didn't have a PET scan last summer. I'm relieved to get the rest of my body checked out, but I'm afraid of finding other spots. I'm worried that I will be placed into the control group for the trial. I have a 50% chance of that happening. I'm also nervous about how I will do with the chemo. I've seen a lot of people not do well with the side effects, and I hope that I fare well.

I have already switched over to the diet I will be adhering to when I'm on chemo. For the probiotics I'm eating either a greek yogurt or a cup of kefir with a glass of milk everyday. According to my doctor that is all I'll need to get the probiotics. As for the protein, I've increased my consumption by 25%.

The other thing I'm just starting to work on is getting in better physical shape. Last year I lifted weights all summer with my dad until I had surgery, and I believe that being in good shape helped me recover so fast. I have about a month until surgery if it doesn't get delayed again, so I'm going to start exercising now. Today, I went to the park and shot around for a little under an hour at a moderate pace. My goal is to exercise for 3-4 hours a week from now until surgery time.

It's almost been a year since I moved to Richmond. Even though this year has opened up a lot of old wounds, I still look back at this past year very positively. I learned great values and discipline from my family, so I was really able to hit the ground running when I moved out on my own. Also, I really grew in my role at work. My team has been really impressed with what I have brought to the table.

I think in some ways this time will be much more difficult than my last time doing chemotherapy. One reason is that I have a lot more on my plate. I have more responsibilities than I had last time like working, paying bills, buying groceries, etc. I also won't have the same support I did last time. I live by myself down here in RVA. My family will make some trips down here when they can, but I don't expect them to that often.

Well that is all for now. I will let you know if anything changes with my treatment plan.

It's Back Again

Since my last post I have had two sets of scans. 

I had my first scan in March, and with that came uncertainty. It appeared to have grown on the scan, but my primary oncologist, and surgeon from last summer remained skeptical of this being a recurrence. My oncologist in Cleveland believed it to be a recurrence. His opinion was that it would need to be taken care of sometime this summer.

My most recent scan has now put both of my oncologists in agreement. It's now 99.9% likely to be another recurrence. It is now measured at 9x8 mm, up from 6.8x6 mm in December. Luckily it is growing slow for Ewing's, and at least nothing else has come up on the scans yet, but it is still terrible news. This will need to be taken of, and will be soon.

The best option for me after consultation with both of my oncologists is to enroll in the Vigil trial (https://clinicaltrials.gov/ct2/show/NCT03495921).  It was originally slated to start taking patients at the end of June, but has been pushed to the end of July. I had a virtual visit with my oncologist in Cleveland this past week, and right now the plan is for me to go to Cleveland on July 31st. I will have a bunch of tests/scans/appointments the following day, and I will have surgery August 2nd if I can be fit in. If not, I will have to wait for surgery on August 6th. I plan to be in Cleveland from the 31st through August 11th. After that I'll be back in Pennsylvania for a week to recover, and then I hope to go back home to Virginia.

The trial will be comparing two different treatment groups. Group 1 will receive the Vigil vaccine along with Irinotecan and Temozolomide chemotherapy. Group 2 will only receive IT (Irinotecan and Temozolomide), but if a patient progresses or recurs they will be moved over to group 1. There will be an equal number of patients in each group, so hopefully I'll be lucky and get the Vigil vaccine. IT would have been the treatment prescribed to me by Penn anyway. The chemo will be 5 days every 21 days. The Vigil vaccine will be 1 day every 21 days. The chemo will go for 9 months, and the vaccine will be from 4-12 cycles. The number of cycles I receive of the vaccine depends on how many vials are able to be produced. They are thinking anywhere from 6-12 vials will be made in my case. The chemo is all oral, so I will not need to miss any time from work for infusions. The side effects aren't as severe as last time, but the big ones are nausea, and diarrhea. I've been told that I will need to have a high protein diet, with lots of probiotics, and should start that now to condition my gut. Greek yogurt and kefir were both suggested to me.

In a sad kind of way I'm kind of relieved. I no longer have to worry whether I recurred again or not. I will be receiving systemic therapy which I wanted last summer. It felt wrong not doing chemotherapy last year. Since it came back it looks like my gut feeling was correct. When the spot showed up in October I never really bought that this wasn't another recurrence. Maybe I should be pushing for my doctors to be more aggressive with my treatment. We could have avoided waiting these past few months, and avoided the risk of it spreading more. What I will be doing now is what I felt I should have done last summer.

It's really frustrating that I just can't be done with this already. Its been five years since I had my first appointment to check out the pain in my arm. It's crazy to think that I've been in the cancer game for 20% of my life. Moving away to college was great for me. It was time for me to redefine myself, and not be reminded of what I went through so often. I hoped that last summer would have been my last time dealing with this. I hoped Virginia would be my new cancer-free zone like Penn State was. Now that its back, I will be suffocated by months of chemotherapy, and will be fully in cancer world again.

Second Opinion and Six Month Scans

About two weeks ago I had a chest CT and a second opinion. The appointment was an online video chat, and went well. I had a ton of questions to ask, and we went through them all. My mom also joined in on the call. So onto the details...

He was very happy to provide me with good news. The nodule seems to have shrunk, or at least didn't grow rapidly. He was very surprised. After receiving my last scan in December he thought this was a recurrence. In fact, he said later in the appointment that he expected this to have grown with possibly more spots show up. To him the results were somewhat of a miracle. He asked me who's all praying for me twice during the appointment.

There is one caveat to this though. The scan wasn't at the same detail that I usually have. At Penn I have 1mm cuts, and this most recent one was done at 5mm. This is an issue because it's possible that the scan is underestimating the nodule's size. This was one of the first things that my oncologist mentioned to me when going over the results. My oncologist will contact the hospital down here in Virginia to make sure I get better images next time. 

Mostly everything he agreed with when it came to the care I received at Penn. I would have been treated the same. He also wouldn't have given me chemo after recurring. Chemo would have stayed the same after the low necrosis rate following surgery. He did point out that there was a new study done in 2016 that raises the importance of the necrosis rate following surgery. Based on that study I had a poor response to chemo. In the study, patients who had a 0-50% necrosis rate had a five years survival rate of 49%. Mine was somewhere in the range of 20-40%. I'm almost at five years since diagnosis so I have beaten the odds so far. It levels off around 13 years where survival is around 37%. Below is a graph from the study. Some hospitals have started treating patients with a poor response to chemo differently. I might have had a few more months of chemo if I was treated today. Those extra months would have been with different drugs than what I received. And that leads to my next point.

The drugs that they are giving to patients with a poor response to chemo are Irinotecan and Temozolomide. They are a popular cocktail as a first line treatment in recurrences. If I have to go back on chemo he suggests I go on a trial utilizing these two drugs with an experimental drug named Vigil. It's an immunotherapy treatment. He suggests this because he believes my immune system is very strong, and is probably one of the reasons I recurred so late. He even suggested that my immune system could be keeping this nodule at bay given that it is Ewing's. The only bad part about this trial is that the closest hospitals that offer it is the Cleveland Clinic which is where he is located, and Memorial Sloan Kettering in New York. I would need to travel there every three weeks to get an injection of the trial drug. My oncologist didn't have much to say about the trial. He doesn't want to get too far ahead of ourselves yet. We'll have a meaningful discussion if we have to. He did say he would likely put me on IT also. I was told that the side effects aren't even close to as bad as what I had before. They are both oral chemotherapy drugs, so no sitting in a chair for a five hour drip. I would be able to continue to work and do all of the normal things I do. I was happy to hear this because when I think about going back on chemo I think about what I went through and that was really terrible.

I asked about getting more imaging studies done like PET or bone scans, and he doesn't think they are necessary. Ewing's usually goes to the lungs when it comes back, and with only having one small, slow growing spot come up so late, it's probably no where else. I would have symptoms if it spread to bone. If the nodule grows, he suggests getting more imaging tests done. He has no reason to believe that I have a local recurrence considering how well the arm surgery went, but said there is a very small chance, though unlikely, that a local recurrence to my arm could be the source of these lung nodules. I really hope not.

The appointment helped relieve a lot of the doubts I had with my care. The recurrence brought all of my doubts about my care to the forefront along with many new ones. My case is more complicated than ever now, and I didn't want to have any regrets about not seeking help elsewhere.

So what is this nodule? No one knows yet. My oncologist is still not worried about it. The second opinion doctor is a little more on the cautious side, but still positive. My best bet for now is getting another scan in mid March, and taking it from there. It'll be more detailed this time, so a more definitive answer will be able to be made. I will forward the scans to Cleveland as I will be keeping him in the loop with my care. If the scan is good I will move back to 3 month scans.

Some other things to mention. I finally got my car back from repairs. Everything, including the rental car was covered by her insurance, so everything worked out well. I finally went and got a Virginia driver's license, and all of the car title and registration stuff done. I was living in between scans like I have the last couple of years. I didn't want to waste my time with getting that done only to have to do it all over again in PA. Like back in college, I would wait to take my college loan out for the semester until after the scan in the break. So that's exciting. I'll get my Virginia license and license plates in the mail soon. I'll be a true Virginia resident y'all.

Next update will be late March. Take care. Please keep me and all of the other sarcoma warriors in your prayers.