Tag Archives: Carboplatin

No More Needles to the Chest; Last Infusion!

22 Aug

Last time I updated all my amazing readers on the progress of my journey, I was in the home stretch. I was away with my grandmother enjoyed some R&R before heading back to DC to finish up the school year along with my last eight rounds of chemotherapy. Upon my return to DC, I had my next MRI which revealed no increased growth or any change. This meant that my family and I were cleared to finish up my treatment of Vancristine and Carboplatin and be done for the foreseeable future.

Well, I have some very good news. On June 12th at about 5:30pm, I finished my last chemotherapy infusion at Children’s National Medical Center in DC!

The last roughly three months of treatment did, however, come with a few hiccups. As I proceeded through my last infusions, my reaction to the chemo became increasingly worse each week. My ability to bounce back from each infusion was nothing compared to what it was when I first started. Although this was somewhat expected, it was still quite unpleasant. Around the time of my last post, I would do an infusion on Thursday afternoon and if I took my normal prescriptions, I would be well enough to force myself through an abbreviated school day on Friday and then I would be fine by Sunday afternoon. This slowly changed and by then time I reached my forth-to-last infusion my normal cocktail of drugs for coping with the side-effects just wasn’t cutting it. During that forth-to-last infusion I was extremely sick, didn’t make it to school that Friday or Monday, and just couldn’t eat anything.

It was at this point my doctors added a drug called Emend to my regiment.The effect of the drug, as it was described to my parents and I, is that it helps the other drugs that counter the effects of the chemo have an increased impact. At first I only took Emend while I was in the hospital as one of my pre-meds before doing an infusion. However, once the side effects started to become increasingly worse (forth-to-last infusion sort of worse) my doctors wrote out a prescription to take the drug at home. It’s always taken in pill form, even when in the hospital. The prescription did come with a slight warning, which was that many types of insurance don’t cover the drug and it can be frightfully expensive if you have to pay for it out-of-pocket. Luckily, I have one of the types of insurance that does cover it. This is one of the things I’m extremely thankful for: amazing health care as well as being in a situation where my family can afford fantastic health coverage.

It was also around the time of when we added the Emend that my family and I had a serious talk with my oncologist, Dr. R, about finishing treatment. What he told us was that we would see what my reaction was like once the Emend was added, but that if the drug didn’t work we would just stop treatment two of three infusions short of the total plan. Apparently with all the drugs I was taking at the time, Emend was basically the last thing they could add to help deal with the side-effects. At that point, with only a few infusions to go, there would be no point in finishing out the last few if they were still making me so sick. As he described it, there’s no way of knowing exactly how many infusions it takes to kill this sort of tumor. They think it’s somewhere around forty-two, but it could be less or more and that’s why there’s no crucial reason to do exactly forty-one.

Luckily the Emend had a big impact, and on June 12th I arrived at the hospital with my entire family, including my grandmother visiting from overseas, for my last infusion! I was very happy to make it to my last infusion; of course I didn’t want to be sick, but I also wanted to finish what I had set out to complete. My family and I brought in a big cake to thank my entire team at the hospital, everyone from doctors to nurses and everyone else were all so amazing. We were able to take a photo of the cake (only one piece short of the completed thing).

It was a fantastic feeling finishing treatment. It was also, however, sad saying goodbye (even if only temporarily) to such an amazing team of people. It was at that time that my entire family and I looked back on being diagnosed sixteen months beforehand, being admitted to the ICU and having neurosurgery and then completing forty-one rounds of chemo between two different cities, hospitals, and teams.

This was the cake we brought in to thank the entire team at CNMC. Everyone got a slice!

This was the cake we brought in to thank the entire team at CNMC. Everyone got a slice! Amazingly, Dr. Mason, who was the first person I had contact with at CNMC, was doing his residency in neuro-oncology. His last day of residency was also the day of my last infusion!

Dr. Mason and I. His last day of residency, my last infusion.

Dr. Mason and I. His last day of residency, my last infusion.

A photo with my oncologist and my nurse practitioner. Couldn't have done it without these amazing professionals!

A photo with my oncologist and my nurse practitioner. Couldn’t have done it without these amazing professional, people!

Exactly a week after my last infusion I decided to count up all of the hospital bands which I had saved from my journey. To do the math: 1 brain tumor = 16 months of treatment = 6 MRIs (at the time) = 41 rounds of chemo = 51 hospital bands.

Hospital bands galore!

51 bands from both Philly and DC. Everything from MRIs to surgeries to chemotherapy infusions!

All that was left to be done was have my port removed and a few days later we received the call that on the 27th of June I would be going in for day surgery to have my port removed. Interestingly, most people don’t have their ports removed until they get two clean scans back. However, Dr. R told us that if the tumor, Eugene, was to begin growing again I would most likely start taking an oral drug instead of doing infusions so we decided to take it out.

Therefore, early on the morning of the 27th, we made the trip out to the hospital where I was admitted and had the port taken out. One of my big requests was that I could take a photo with the surgeons before going under and that they would take a photo of the port for me once it was taken out of my chest, which they did!

I took a selfie with the surgeons right before going under. Don't worry, they were super cool with it.

I took a selfie with the surgeons right before going under. Don’t worry, they were super cool with it.

On of the nurses took this photo as they were putting me to sleep. Thumbs up!

On of the nurses took this photo as they were putting me to sleep. Thumbs up!

Photo taken by the nurse during surgery.

Photo taken by the nurse during surgery.

This is a photo of the port that was in my chest for 11 months!

This is a photo of the port that was in my chest for 11 months! This was taken in the OR right after they took it out. If you zoom in you can see the little needle holes from when they accessed the port before doing an infusion.

A week after surgery I met with Dr. A, the neuro-ophthalmologist. I did a visual-field test in addition to having some photos of the back of my eyes taken. What Dr. A then told us is that when people have the type of cranial swelling and double vision like I experienced when first diagnosed they expect to see some sort of retinal-nerve damage and vision loss. Amazingly, he himself seemed almost shocked when telling me this, I have no retinal-nerve damage or vision loss.

Finally in mid-July I had an MRI and a follow up with my neurologist Dr. P. The MRI showed no change whatsoever meaning I was given the final clearing to come off treatment! Apparently, Vancristine and Carboplatin can have a really nasty effect on teenagers causing nerve damage and he himself seemed really surprised that I was able to finish all sixteen months of treatment.

I decided to wait until now to update you all on my journey because not only have I been extremely busy with a chemo-free couple of weeks, but I also wanted to make sure everything was looked good before writing this post. Ultimately, I am truly blessed. I had some of the most amazing care, doctors, nurses, and support team, both in and out of the hospital, that I ever could have asked for and I can’t thank them enough. Is it unfortunate that I have a brain tumor? Of course. But I also take pride in knowing that I was able to overcome many obstacles to get to where I am today, and I couldn’t have done it without so many amazing and talented people. I have to especially thank my teams at CHOP and CNMC, my school, my family, my brother and my parents for everything they did to help me get through a challenging year of growth.

Many people have asked me: is this the end of Josh’s Journey? Of course not. Eugene the brain tumor will always be there, and it’s always something I am going to have to monitor and be careful of. Over the next two years I will be having MRIs every three-months in addition to meeting with the neuro-ophthalmologist and the neuro-oncology team. I’ll make sure to update you all on my journey after each MRI to let you know how everything is going.

I can’t thank everyone who has followed my journey enough. Your support has meant the world to me and helped me get through a testing time. I’m hoping to soon be launching a campaign to help bring snacks and food to kids who are doing chemotherapy infusions so please continue checking in for news on that. Below I’ve included a little timeline of photos from my journey.

Straight out of neurosurgery back at CHOP. This was when things all started.

Straight out of neurosurgery back at CHOP. This was when things all started.

This was taken the day of my first infusion at CHOP.

My first infusion at CHOP.

Me with Dr. B, my oncologist at CHOP. At this point I had finished 14 rounds of chemo and was transferring to CNMC in DC.

Me with Dr. B, my oncologist at CHOP. At this point I had finished 14 rounds of chemo and was transferring to CNMC in DC.

This is an eye exam; taking a photo of my retinal nerve.

This is an eye exam; taking a photo of my retinal nerve.

Photo comparing Eugene from one MRI to the next.

Photo comparing Eugene from one MRI to the next.

One of the nurses putting an IV in my arm before having an MRI!

One of the nurses putting an IV in my arm before having an MRI! Gotta stay positive!

Getting cozy for my last infusion (June 12th, 2014)!

Getting cozy for my last infusion (June 12th, 2014)!

Selfie with Dad right before going in for surgery to have the port taken out.

Selfie with Dad right before going in for surgery to have the port taken out.

Finally, one last photo of Eugene the brain-tumor!

Finally, one last photo of Eugene the brain-tumor!

Again, thank you.

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Chemotherapy Rounds 14 through 18….. The joys of school and chemo!

13 Oct

When I told people I was expecting my new school to be very busy and chaotic… I was never expecting it to be like this! I apologize for not posting for a few weeks. I’ve been looking for the opportunity to update everyone on my journey for a while now and it wasn’t until this long weekend that I found that opportunity.

I began school on September 3rd, and began chemo again on the 12th. The really good news is that my chemotherapy has been very uneventful! As I said in my last post, the biggest differences between chemo in DC and Philadelphia is that in DC I see three doctors each time I go in for an infusion and that my Vancristine is done through a push instead of a drip. Otherwise the process is almost exactly the same.

I love my new doctors and nurses in DC. They’re very friendly and obviously really know what they’re doing. One thing that I noticed that’s a little different between DC and Philly is that things are a little cleaner in Philly. Also, things like pantries and activities for kids who are doing infusions are much less well stocked in DC. Frankly, often the pantries and activities for kids in DC are just empty, which I find somewhat sad because I have a laptop but little kids often have much less to do. I’m thinking about starting a drive at my new school to collect snacks and activities for young kids.

The biggest difference in my recents treatments has been doing chemo while going to school. School and chemo together have actually been very manageable. My school was amazing and set up my schedule so that my Thursdays have a very light work load and I don’t miss any classes for treatment. Friday mornings are also light meaning I can sleep in rest before going into school for the afternoon. My new school never sleeps, which at times can be exciting and at other times its really exhausting. On Tuesdays I don’t get home until 8pm because of debate. I’m really loving debate as an activity (I’ve never done it before). On Wednesdays I don’t get home until around 9:15pm because of choir. As I said the school never sleeps; I’m sure there are kids who are at school that late every night of the week.

My next MRI is on the 20th and then I’ll start treatment again on the 26th. On the 26th my parents and I will be meeting with the infamous Dr. P again so review my MRI… so that’ll be interesting.

I hope I get the opportunity to update the blog more regularly than I have over the past six weeks, however I can’t make any promises. As always if you have any questions or things in particular you’d like to to talk about, please just let me know . Thanks again for following my journey. I really appreciate the amazing outpouring of support and sympathy.

-Josh

Maintenance Round 1 Complete; Sad Day

23 Aug

Well today was my last round of chemo in my first maintenance cycle. In a lot of ways this week way just like last week. However, there were some key differences. When the nurse was accessing my port it was so much less painful than it been any other week. Every week it becomes easier and less painful to access which is really helping to make the process easy and smooth. Another difference between last week’s treatment and today’s treatment is that instead of receiving Vancristine and Carboplatin (the usual cocktail), I only received Carboplatin. Apparently during the maintenance cycles the first three weeks are Vancristine and Carboplatin and then the final week is just Carboplatin. This made the the entire transfusion about a half hour shorter. Also, we went over my opthalmology results and just like the doctors from the suite, my oncologist was shocked with the results. Besides for these three differences, this week and last week was almost exactly the same!

Except……. for the fact that this was my last transfusion at CHOP. Some of you know and others don’t that I am moving to Washington DC in a few days. It was sad saying goodbye to all the amazing people at CHOP, especially my oncologist Dr. B. Over the next few days I’ll be moving down and then meeting with my new doctors at National Children’s Hospital in DC. I have a meet and greet with Dr. P who’s the head neuro-oncologist down at National Children’s and then with members of the oncology team on Tuesday. After that I’ll be able to enjoy the rest of my two weeks off before beginning my second maintenance cycle down in DC.

From what I’ve heard, the process is much different down in DC. Apparently I only meet with the head neuro-oncologist once a cycle (six weeks). Otherwise my exam is done by the nurse-practitioner. I’m not exactly positive regarding how some of the other aspects of my treatment will be different. I know that instead of doing the Vancristine in a 10-15 minute drip like they do at CHOP, National Children’s administers the Vancristine in a 5 minute push. I’ll let you know about some more of the differences on Tuesday.

As for today when I met with my current, incredible oncologist, Dr. B, we talked about the transition and keeping in touch. My dad and I brought he a gift as a thank you. It’s amazing how one person and her team can make something like going through chemotherapy feel so comfortable and easy. Not only was the process easy but over time I learned how to laugh about my situation and just make the best of it. We probably laughed more than you should in an oncology suite. Oh well.  I am going to miss the CHOP oncology team and their kindness, understanding, humor and all around passion for what they do every day.

Dr. B and I during out last exam.

Dr. B and I during out last exam.

Hopefully, the oncology team down in DC is as welcoming, friendly, and humorous. I will definitely miss CHOP and it’s caring people.

Thanks for following my journey. Let me know if you have any questions or anything you’d like to hear about.

-Josh

Chemotherapy Week 10; Grand Finale

5 Jul

Well I’ve made it! The ten week intensive period is over! However, it finished with a bang. It was a week filled with many little issues. One thing that you should know before I get into the details of the treatment was that my family was planning on going down to DC for the holiday. My dad booked a 2:10 PM train out of 30th Street Station. This meant that if we were going to make our train, I’d have to be finished my treatment by 1:30 PM.

When I arrived we checked in like normal. We decided to arrive early hoping that it would help speed up the day. This week, because my treatment was a day earlier due to fourth of July, triage was located on the other side of the day hospital. I was surprised how much larger of a triage area there was on the opposite side of the oncology floor. The nurses took my vitals and then my first big issue of the day arrived. Getting an IV was a disaster. Three different nurses were working together to find a possible vein for my IV. They used various hot packs and tourniquets hoping my veins would pop out. However, they didn’t. They inserted two different failed IVs, each in opposite hands, before they successfully found a vein. I received a total of three IVs, however, only the last one worked. You know what they say: third times the charm.

Finding a useable vein ate up quite a lot of time and we missed the first appointment of the day with my oncologist. Luckily we didn’t have to wait long before we were called back for my consultation. The meeting was quick. My blood counts looked great and there weren’t any big concerns. We took a few minutes to talk about the next upcoming steps in my treatment like the next MRI and receiving a port. However, all in all the meeting was quick and easy.

By the time we went back to the day hospital and I started my chemo it was around 11:00 AM. Everything was looking as though it was going to run smoothly and that we’d make our train easily. I ate lunch and then feel asleep like normal. When I woke up the nurse was preparing to flush my IV and finish everything up. That’s when I noticed something on my wrist. Next to my joint there was a giant hive that had suddenly shown up. When I first found it I called over the nurse and she confirmed our notion that this was something unusual. She immediately called over other nurses and even an oncologist to check it out. It was pulsating, however, it didn’t hurt and it seemed to be the only one. As the team of doctors and nurses began deciding what to do more hives began popping up on my hand. The doctors and nurses decided to give me a dose of Benadyrl hoping it would calm down the reaction. Catching our train was now looking unlikely. One nurse even told us that we’d need to reschedule our train.

About ten minutes after I was given the Benadryl the hives seemed to have calmed down and it looked like we might just make our train after all. The nurse decided that I was okay to leave the hospital. I would have to continue to take Benadryl for the next 24 hours.

We ran to our car and began rushing to the train station. I feel asleep on the car ride to the station as a result of the Benadryl. We arrived at the train station and began running for our train. I was half asleep making everything a little more difficult. The train was waiting for us and we made it onboard with just a minute or two to spare. As soon as we got on the train I fell asleep. I was exhausted.

Over the next few hours following my final treatment the hives totally disappeared. We had a great fourth of July down in DC and it was even more enjoyable knowing that I’d have a month or so now to get ready for the maintenance treatments. I am very glad to be finished the 10 week intensive. I kept all of the hospital bands from my treatment just as a reminder.

The 10 wristbands from my 10 intensive treatments

The 10 wristbands from my 10 intensive treatments

I hope you all had a great forth of July. If you have any questions, just let me know.

-Josh

Chemotherapy Week 9; Family Outing

28 Jun

Chemo started later this week. Normally my checkin is scheduled for around 9:00 AM. This week I didn’t need to arrive until 10:30 AM because my oncologist was doing rounds down in the main hospital. However, once we did arrive I checked in like normal and proceeded to have my vitals taken. When the nurse went to put in my IV she searched my hands for a possible vein. In the end she decided to leave my hands alone and actually insert the IV right above my elbow. I found this very surprising considering that I knew the nurses weren’t allowed to insert at the elbow with a chemo as toxic as Vancristine. I guess right above the elbow is okay! I did, however, find having the IV right above my elbow much more uncomfortable.

Here you can see the nurse putting the IV in right about my elbow instead of in my hand.

Here you can see the nurse putting the IV in right about my elbow instead of in my hand.

As I was leaving the room where the nurse inserted the IV I asked how long it would be before I saw my oncologist. They told me that there was only one person in front of me. However, she wasn’t even back from the main hospital yet. I sat down and the waiting game began. Eventually the nurse practitioner in training came over to let me know that my oncologist was running quite late. However, she said that she’d be able to do my examination if I’d like as to speed up the process. I hopped on this offer knowing she is a very thorough nurse and that I’d be willing to do anything to get things rolling.

When we went back to the examination room she asked if I’d be willing to allow her supervisor to sit in on the exam. Still being in training she had to have her supervisor look in on an exam. I was totally fine with this; I knew she’d be great. The exam began like normal and about halfway through my normal oncologist arrived. It was an oncology party! There must have been about five people in the little exam room. One of the things that was different about this week was that some of my counts had dropped more than I’d previously seen from the week beforehand. We talked about them and made sure there wasn’t anything to worry about. The nurse let me know that even know my counts had dropped, they were still extremely high and there was nothing to worry about.

That’s when I went back to the day hospital to begin my treatment. This week I was also given an anti-nausea patch along with the Zofran and the Ativan. Another difference in this week’s treatment was that my mom and brother accompanied me during treatment instead of my father. It was really great for them to be there with me and to see what the whole process is like. It became really obvious that I had really mastered the whole process. Being with family members who hadn’t been through the process meant that I really took the lead. I knew this process well! I have it down! The number of people I knew at the hospital also really stuck out. I knew tons of people around the hospital who were greeting me and checking it. At that moment one thing became apparent; I was no longer a beginner to this whole process. I’m a regular now. During the chemo one of the social workers came to talk to my family and I to discuss any possible changes that I’d like to see in the future. They wanted some feed back and I really thought it was awesome that they’re always looking to improve.

As always, if you have any questions let me know. Thanks for reading.

-Josh

Chemotherapy Week 7; Back to the Carboplatin

15 Jun

Well unfortunately after having two very manageable doses of chemo, I had to go back to the full regiment this week. Just like every other week we arrived at the hospital where we checked in and then the nurses proceeded to take my vitals and give me my IV. However, the most “painful” part of the day was waiting to meet with my oncologist. My dad and I had to wait for just over two hours to see my oncologist! We never mind waiting, because it just means that she is being very thorough, however it just makes the day even longer and more tedious.

Finally when I met with my oncologist she let me know that my blood counts were looking amazing. The only thing that was different about my normal examination was that my reflexes were totally gone! The previous week it because obvious that my reflexes were declining, however, this week they were totally defunct! The oncologist said that with most people they come back, however, even if they didn’t as long as I had full control over my feet then I would be fine.

The biggest thing that was different about this week’s treatment, was that my oncologist added Adivan to my regiment. Adivan is a drug normally used as anxiety medicine. However, in my situation it’s used to prevent nausea. The logic behind using Adivan is that the nausea I feel each week isn’t actually coming from my stomach, it’s coming from signals in my brain. Therefore, if I can use a drug like Adivan to calm my brain down I’m less likely to experience nausea.

Once I finally went back to the day hospital I received the Zofran first and the nurses warned me to eat my lunch before the Adivan was in my system. I ate my lunch as I was told. Next thing you knew, I was out! The Adivan put me straight to sleep! When I next woke up, the chemo was done for the day!

It was an average day, we arrived at the hospital at about 9:20 AM and left at 3:00 PM. I am very happy knowing I only have three weeks left in the intensive.

Today, the day after I had the chemo, I woke up in the morning feeling rotten. As a result, hoping to deal with the nausea, I took a Zofran and a Adivan. The Adivan caused me to fall asleep around 8:30AM and I didn’t wake up again until 2:20 PM! That medicine works wonders! I also woke up feeling much better than I was feeling when I feel asleep. Sleep is magical.

As always if you have any questions, please feel free to ask! I really appreciate all your support!

-Josh

Chemotherapy Week 5

31 May

Today was my fifth week of chemotherapy, and surprisingly it was very different from other weeks. When I woke up this morning and went downstairs for breakfast my dad looked at the schedule I was given on the day of my first treatment, and it reviled that today I was only taking the Vancristine. This made me very happy because it meant that instead of being in the hospital for three hours, it was possible that I would only have a half hour of treatment!

When I arrived they took my vitals and put in the IV like normal, however, afterwards I had to wait over an hour and a half to meet with my oncologist! My appointment was meant to be at 9:30, and instead we went in at 10:45! She’s obviously had many patients this morning, therefore there were no hard feelings. However, the wait was killing me!

Having gotten adjusted to the process of going through the chemo each week, my meeting with my oncologist was very brief. When meeting with her, she told me that because I wasn’t getting the Carboplatin this week I wouldn’t need the Zofran either. Apparently all of the nausea is caused by the Carbo, therefore since I wasn’t getting it, I wouldn’t need the Zofran. This sped up the process even more!

Afterwards, they didn’t even take me to the hospital! Instead they just put my dad and I into one of the small rooms where the nurses put in the IVs. Due to the fact that my treatment only lasted 15 minutes, they didn’t see any need! Afterwards I was free to go! I was out of the hospital by noon! Even with the extra waiting for the doctor, it was one of the fastest days I’ve had. I was very happy!