Update 1: NYC Memorial Sloan-Kettering

January 12, 2017

Good morning New York City! Early morning yesterday, Thursday Jan 11, up at 6:30am to meet the doctors at 8:30am and we stayed until 2:30pm doing various medical things. We've been enjoying learning the subway with a couple wrong turns. Before we met with the doctors we did registration with the financial office.

The doctors told us about her clinical trial. She's one of the few and one of the top specialist for esophageal cancer. She's in phase 3 of her clinical trial. They've had great success with these immunotherapy drugs treating lung cancers and now they're testing other applications. They set us up for a MSK impact test. They're going to do another biopsy of the esophagus for genetic testing for trial.

If we go this route, it'll take them about 2 weeks before my dad can start. In the meantime, while we wait, we're looking into going to MD Anderson in Houston.

Yesterday, Thu Jan 11, my dad did another EKG and more blood work after the doctor's visit. Today, Fri Jan 12, my dad is doing another endoscopic biopsy. He is also scheduled to do a CT scan on Saturday, Jan 13, and a PET scan on Monday, Jan 14th. The goal is to squeeze in a bone scan as well as a bone density test. Hopefully they won't have to biopsy his bone.

Update 2: NYC MSK continued

January 25, 2017

The take away from yesterday's, Thursday January 25th, MSK doctor's follow up appointment was that chemotherapy is the suggested way to go for now and that the immunotherapy clinical trial is out.

They decided it looks kinda like a neuroendocrine carcinoma, but stains more like a poorly differentiated adenocarcinoma which is what they decided it to be in the end.

Immunotherapy is out because of the hospital bug bacterial infection he got from the biopsy of his last visit 2 weeks ago. Unfortunately, a recent study has shown that taking antibiotics within 6 months of immunotherapy reduces the effects by 25%, which isn't deal for the phase 3 clinical trial.

We were so excited for immunotherapy because these types of antibodies work by releasing the brakes on the immune system so it can destroy cancer cells. The immune system responds to the cancer by blocking these pathways with specific antibodies called immune checkpoint inhibitors. Once the immune system is able to find and respond to the cancer, it can stop or slow cancer growth. It seems like the way of the future and has already been approved for different types of cancers. We're pretty bummed that it's not an option she wants to us anymore. Since we're not part of the trial they're no longer planning to pay for my dad's treatment nor subsidize travel and accommodations.

She said that while we could look into immunotherapy in the future, it wouldn't be the best right now. I was going for a Hail Mary Pass and seeking alternatives, but unfortunately she also ruled out endoscopic ablation, radio-frequency ablation, Cryotherapy, hormone therapy, stem cell transplants, Targeted therapy, Photodynamic therapy, Surgery, and Radiation.

Our only option at the moment here is the standard chemotherapy treatment.

My dad is starting to have trouble swallowing solid foods that aren't super soft, so we're meeting with a dietitian tomorrow, Friday Jan 26th.

We're on our way to MD Anderson in Houston on Wednesday for an appointment with the 3rd and hopefully last oncology team. We're hoping they'll have a new/better treatment option.

3rd Update: MD Anderson

January 31, 2017

Houston, we've had a problem. Wednesday January 31st, MD Anderson doctor's appointment in Houston was a bit disappointing. Chemotherapy is the suggested way to go here for now too.

At the moment they suggest to do a modified FLOFOX chemotherapy regiment, TFOX. It's 2 of the 3 drugs that MSK uses and the 3rd one is different. It uses 2 of the 4 ones UM will use, it has 1 less and 1 different one. They also want to do a special drug treatment to stall if not cure his bone lesions.

They were not very optimistic, giving my dad about a year to live, saying maybe 3 years, and in rare cases 5 years. They didn't seem to have data beyond that. They did say that some patients have lived for many years in remission although because it's metastatic they don't use the words remission nor cure because it'll keep coming back as on going thing forever.

They talked about future possibilities for immunotherapy, radiation, etc, but that for now our best/only option at the moment here is the modified standard chemotherapy treatment. They think he's a strong candidate for this type of chemotherapy and expect to see good results. The goal is to keep the cancer from growing with hopes of reversing its effects. They think they'll be able to perhaps get rid of the main tumor site, but he wasn't sure about the rest.

We were also happy to hear that they have complementary/integrative medicine. Although, I was a bit let down by the pharmacists who spoke to us about my dad's prescribed chemotherapy treatment and said not to believe in it. I did like the social workers holistic approach and that they were all for it. It combines different aspects of the mind and body into helping you feel stronger and getting more energy while having less pain during the cancer treatment. It's non-mainstream practices used in addition to conventional medicine. They are things like herbs and supplements, acupuncture, acupressure, massages, yoga, meditation, exercise and fitness classes, martial arts, music therapy, art therapy, etc. I like that this treats the whole person and not just the disease. Studies have shown that cancer patients who receive integrative therapies while in the hospital have less pain and anxiety. Massage therapy may lead to short term improvements in pain and mood in patients with advanced cancer. Yoga may relieve the persistent fatigue. So we're excited to begin the various treatments with this approach.

We liked the doctors and staff here, everyone is so nice. However, the facilities seem old, smell horrible, and it's a pretty sad and depressing place. While they do have a lot of amenities for patients everything comes at a very high cost. We weren't thrilled with the people at MSK, but there facilities are impressive as is their reputation. UM fell somewhere in the middle, but it's close to home, so logistically it makes the most sense especially since the treatment will be full strength standard it doesn't really matter where it's administered.

My dad is starting to have trouble swallowing soft foods that aren't thinned out, so lots of purees, soups, cream of wheat, eggs, & protein shakes like Boost and Ensure. He has to start treatment next week, so he doesn't get worse and the medication can start to shrink the tumor.

We have a lot of thinking to do in very little time as my dad has to start treatment ASAP. We have some more calls to make and questions to ask. At the moment we're leaning towards doing the treatment at UM'S Sylvester Center and having the doctors at MSK and MD Anderson as consults along the way. Hopefully they'll agree to look at scans and give opinions on progress every 2 months or so. Each doctor has their own specialties and are equally great in different areas. Hopefully by their powers combined they can save my daddy!

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4th Update: University of Miami's Sylvester Cancer Center

February 13, 2018

Mixed news kind of rough day. We were up at 6am to go down to UM for dad's surgery. His port placement procedure was this morning. He was out of surgery in about an hour & everything went well or so it seemed. More on that later. Because he can't eat and he's lost nearly 40lbs, he started chemotherapy the same day, today apparently, which was a big surprise to us as we were unprepared. He's staying 30+hrs until very late tomorrow night.

We met with his oncologist after the surgery and he ordered for the next month a pretreatment PET scan, CT scan, and I finally got them to do a bone scan, which he thought was a good idea. His blood work came back mostly good and he was ready to go. He is treating him in a curative manner with a goal of remission instead of life long palliative care. The goal is to do surgery if it's only regionally around his esophagus and after a few rounds/months of chemotherapy to switch to Keytruda immunotherapy.

They said he'll be able to eat sometime in between the 1st and 3rd treatments.

He chemotherapy treatments will be once a week, for 3 weeks on and 1 week off, he'll do the doses and then he'll get scanned after 2 month cycles.

He'll normally go in early on Monday mornings and leave late Tuesday nights.

They told him to rinse his mouth with warm salt water before meals and to make sure to brush often with a soft toothbrush and use nonalcoholic mouthwash. They suggested he stays away from our pets and double flush the toilet. They said the FU5 makes hands and feet very dry, so they suggest loading up on lotion. And told him to remember the most important thing is to drink a gallon of water a day.

Now, back to the complications with his port and something isn't working properly. He seems to have such bad luck with surgeries lately. After a couple tries they had to do chemotherapy treatment through an arm vein IV now and they'll figure out what's wrong with the port tomorrow through a port study. He's in a lot of pain. We're still waiting for decisions to be made and more information to come.

Tough day full of ups and downs.

5th Update: 1st Chemotherapy Treatment

February 15, 2017

Another update on dad: So, not a great 1st experience with chemotherapy, but we hear the 1st time is the worst and it gets better after every dose.

A few hours into his last drug combination, around midnight on Tuesday February 13th, his arm started to swell and burn. They had to wait for a vampire to remove and redo his IV, around 4:30 am Wed, to restart his 5-FU. The doctor came by later Wednesday morning to check on him, but he didn't say anything about it nor seem concerned about the pain. They had to move him to inpatient because the bedside chemotherapy unit is closed on Wednesdays. They're only open Mondays, Tuesdays, and Thursdays. They also forgot to schedule his port study twice, so that got pushed back until Friday afternoon, and unfortunately we have to go back again. Poor dad.

We were supposed to pick him up Thursday morning at 5 am because of the lost time restarting, but didn't get released until noon waiting for the doctors to sign him out. It hasn't been easy, not that we were expecting it to be, but still.

My dad hasn't seen his doctor since Wednesday morning because he's not around unfortunately. Hopefully he'll be there tomorrow to see my dad sometime around when they fix his port.

My dad was feeling good until he got in the car. The bumpy ride an hour back to our house from the hospital made him nauseous and gave him a headache. Otherwise, despite the pain and slight chill, he seems to be OK.

The bright side: his esophagus has opened up a bit and he's able to eat softer things at thicker consistency back to what he was like a few weeks ago. Also, so far after sleeping it off most of the day there's been no vomiting, diarrhea, and no cold sensitivity.

6th Update: Radiation Consultation

March 5, 2018

After my dad's bone scan and PET scan last week the doctors noticed his cancer has spread further in and through his bones, so last week the doctors added a once a month bisphosphonate bone medication to his chemotherapy which tells the bone cells to create more bone to fill in the holes to harden it, so the cancer cells can't spread to fill in.

Today we had a long consultation with a very patient radiation oncologist to begin my dad's radiation treatment for his sacrum, L3, L4, and scapula, but not his 2 ribs because the main priority treatment of chemotherapy will take care of it. The radiation is only to treat pain and to prevent tumors causing issues near the spinal cord where it's compressing. The iliac and lumbar spine is where the bone marrow is created, so if radiation hits there too much it could prevent the blood cell count from coming back up and prevent or slow the main chemotherapy treatment.

The goal of radiation therapy in my dad's case is to kill his tumor load in the singled out specific sites. It will not stop the spread of cancer. 2/3rds of patients have a complete response in getting rid of the tumor. 6-8 weeks after radiation he will have new images taken to measure response and know if the radiation worked.

Next Monday my dad will be getting a high dose of radiation for 5 days in a row. He's doing it on his off week, so the radiation doesn't affect the chemotherapy symptoms. Today he did a CBCT which they will use with laser guides for his future radiation treatment placements to compare the daily images to the planning images to ensure everything gets lined up correctly, so they're hit the precise spots accurately.

Radiation might cause swelling and a bit of pain in the 1st 24hrs. Improvement from pain can come anywhere from the last day of treatment to 20 days after. Skin can get red and itchy, but lotion or aloe without alcohol or perfume will take care of it. Little cramping and more frequent bowel issues in the week to follow. And fatigue might start to become an issue on the last day. Other than staying out of the sun to not get extra solar radiation he won't have to change his eating, drinking, exercise, nor work habits. Some side effects might last up to 6 months after treatments, for example the part of the lung that's exposed might have scar tissue showing as a white patch in scans and he might have some skin tanning at those particular locations.

Apart from the new changes my dad is hanging in there. He's half way through his 1st cycle of chemotherapy. Some side effects kicked in this last week, diarrhea and not being able to handle cold things due to Oxaliplatin, plus now his jaw bone is starting to hurt. His esophagus tumor is shrinking, but we're not sure if it's working on the bones yet. Time will tell. He's able to eat solid soft foods again and is now about where he was about 6 weeks ago. I think he's progressing slowly. He naps a lot the 1st 3 days after chemo and as long as he avoids car rides, he's doing OK.

7th Update: 1st Round Halfway Point

March 27, 2018

Hi Guys, it's been 3+ weeks since my last update. My dad is uncomfortable, but okay.

~3 weeks ago was his off week & the mid-point in his 1st round of chemotherapy. He feels good, full of energy, on his off weeks. The rest between treatments allows his body to recover from any side effects.

~2 weeks ago he did a short & intense 5 days of radiation Monday-Friday to attack the cancer causing him pain in his bones, specifically in his sacrum & rib under his scapula. The doctors left 2 spots on his spine alone & did not touch his esophagus. He will be rescanned in about 6 weeks to see if the radiation worked, if not we'll try it again because the bone lesions tumors are getting dangerously close to pinching off nerves permanently.

He also started wearing a Fentanyl patch because the pain was becoming too severe. Thankfully the patches cut his pain in half & make it bearable. Thank you Rohan.

~Last week, after his 2 off weeks, he restarted his 2nd half of the chemo and it was rough. After about 19 days in between his chemotherapy treatments, his esophagus was closing up again. It seems it is growing as fast as they're getting rid of it. Zero sum game so far. Hopefully as the chemicals build up it'll be different.

He was also so low on his blood cell count that they almost didn't do that week's chemo. The bone radiation caused his white blood cell count to be low & so he got an injection to improve his production. However, one of the side effects of the shot is more pain.

We got back the reports from his MSK IMPACT test & he had a few genetic mutations that are matches for different treatment approaches. With PDL-1 present he's able to do immunotherapy. He's more than halfway through his 1st cycle, so we figure to finish this cycle & maybe another full one before insisting on doing it differently with immunotherapy assuming he's not making significant progress.

~Today he came home from the 6th treatment cycle of his 1st round & he's feeling good. He slept most of yesterday & today while in the hospital. He was having a tough time with stomach yesterday, but thankfully the nausea medication kicked in & eased it up a bit. This week is one of the every other weeks without Oxaliplatin & so he won't have to worry about the peripheral neuropathy side effect that comes along with touching cold things. He's eating a bit better, but bread is still giving him a hard time. The doctor also added Vitamin K to his treatment for bone hardening, taken from a study I read. Thank you Volker.

~Next Monday, he will have his last active week of chemotherapy of his 1st round. Then he will have another off week where he will be scanned & evaluated to see if the treatments are working. If it's working then he will continue with another 8-week cycle round of chemotherapy.

At any one time, some of the cancer cells will be resting. Chemotherapy only attacks cells that are in the process of dividing. So resting cells will not be killed. Some of the cancer cells that were resting during his first treatment will be dividing by the time his second treatment comes around. So they will be killed off. Normal cells usually repair the damage from chemotherapy more effectively than cancer cells. So damage to cancer cells should progressively build up without causing permanent damage to normal cells.

8th Update: Finished 1st Round

April 9, 2018

My dad has finished his 1st 2 months round of 6 cycles of chemotherapy this past Monday and today begins his off week. He has another identical round to go before he'll see results to be able to judge whether it is working or not. We're hopefully thinking that we are already seeing positive effects and that the chemo is keeping the aggressive esophageal cancer at bay. If not, we have a couple options...Houston for immunotherapy while waiting for those 6 months of being bacteria free to be able to possibly re-qualify for the MSK combination immunotherapy and chemotherapy drug trials. And if all that fails, Asia has promising outcomes with 66% success rate compared to the 5% here, so it might be off to Israel, South Korea, or Japan. But one thing at a time for now and we'll see what works and how well in the meantime without having to be drastic.

Radiation seemed to relieve about 90% of his bone pain and the fentanyl patches almost completely removes what's left. He has a followup scan in about a month to know how well it worked and if he'll need to do a repeat 5 sessions of radiation.

He mostly has trouble eating, but some days are good and he's almost back to normal and then others it's bad again. He hasn't had many awful side effects, thankfully his stomach is spared for the most part. He's been having difficulties concentrating, foggy brain, and he sleeps a lot in the 4 or 5 days during and after his treatments.

A big thank you to Paty, whose helpful suggestions have been wonderful over the last 6 weeks or so. We're trying to approach this from all angles. My dad is doing 3 part breathing exercises which help with his pain control, mood, and sleep. Likewise, his short daily walks outside in nature have been helping in much the same way. He's trying meditation and listening to sound therapy tunes both at 432-hertz heart center and 741-hertz detoxifying healing vibrations. He's also trying to increase his protein, iron, potassium, calcium, magnesium, and good oil intake with his new natural, organic diet. He's missing certain foods he can't eat because due to food illness concerns he pretty much has to be on a pregnant lady diet: nothing raw nor undercooked and no unpasteurized foods. Unfortunately, it is challenging regaining all the weight he lost and he's still down around 146 lbs.

Fighting with the insurance company has been no fun. They keep wanting to deny him of things the doctors order such as more scans. We received all the bills and finished calculating the price of his pre-treatments consultations with the 2 different oncologists and 1 radiologist in Miami ($345,000), the oncologist in New York ($75,000), and the one in Houston ($) plus all related exams, etc. came out somewhere around $ in medical bills alone, not counting the travel costs like food, lodging, transportation, etc expenses. We started to receive the bills for his chemotherapy treatments at UM which came out to be about $2,200 a day making it around $132,000 for just his treatment alone. That's not including a bunch of doctor and specialist visits like his GP and cardiologist and other extra things apart from the chemo, for example, radiation, other medications, exams, lab work, 2 CT scans, PET scan, MRI, bone scan, drugs, etc. So far in total medical charges that have been billed from January to mid-March, it has been around $250,000. That's not including all the other relevant cancer expenses. Judging by the average costs so far, we're looking at about another $150,000 in medical costs for his next 2 month round of chemotherapy treatments. That's nearly half a million dollars in the 1st 6 months of being diagnosed with cancer. The US medical system is in need of some serious reforms. It's unbelievable!

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*A big please and thank you so much to everyone who has donated and helped to spread the word so far. If you haven’t done so yet, please visit my links above! A giant thank you to Rohan, Sandy, Paty, Volker, my friends, my mom's coworkers, everyone that has gone above and beyond, we really appreciate it.

Wow! Thanks to all 71 of you, we’ve raised $6,260 in only 90 days. That's approximately 3% in 3 months. We are truly thankful for your generous support. We are only $193,740 from our goal, so I kindly ask that you share our campaign with your network. Each share gets us closer to our goal, so I thank you from the bottom of my heart.

**Information is always useful! If you know a lawyer who handles wills, trusts, estates, etc. we would love a recommendation. If you know any specialists, treatments, clinical trials, or have advice and can help with connections, that would also be incredible. Stories are welcome too of course. If you know anything about complementary and integrative medicines and therapies, medications, side effects, transportation, lodging, grants, etc. that is all very helpful information to us. Thank you so much in advance! It is really appreciated! Our situation is very urgent. If you can't afford to donate, despite no donation being too little, and still want to contribute there are other ways you can help. Please feel free to contact us directly. Please spread the word and share our story and link. We very much appreciate your help and kindness. Thank You!

Love,

The Vassilopoulos Family: John-Paul, Isa, and Tatianna

9th Update: 3rd Round plus Immunotherapy

June 18, 2018

I haven't updated on my dad in a while because little things keep changing all the time and there are so many ups and downs that all contradict each other, so it's hard to know what to say and when to say it before it all changes again. He just started his 3rd round of chemotherapy last Thursday making it a total of 13 treatment cycle sessions so far. It's still 3 different levels of chemicals for 3 weeks followed by a week off.

After much arguing with the insurance company, he started Keytruda immunotherapy and he's had 2 infusions, so far. He'll get an infusion every 3 weeks. It seems to be easier on him, so far, compared to the chemotherapy. It's only a couple hours in a chair versus chemotherapy which is about 28 hours overnight in the hospital bed.

Despite it now being standard care practices and the doctors prescribed treatment, our insurance company only wants to pay for either chemotherapy or immunotherapy, not both together as is the oncologist's orders. Thankfully the doctor and hospital worked out a deal with the pharmaceutical company because otherwise Keytruda costs $12,500 a dose and is given every 3 weeks would come out to around $250,000 a year just for that 1 single immunotherapy medication.

Speaking of arguing with our insurance company, we've been fighting with them about the right pain medication. We think his pain medication is too strong and that's messing with him making him not feel the best. Insurance is a pain in the butt. He started Fentanyl at the lowest dose 12.5 then a month later he upped it to the next highest dose 25. Now it's not working as much so he has to up it again, but the next highest dose the hospital pharmacy has is 50. 50 is way too strong and 25 isn't nearly strong enough. The doctor agrees that he should wear 1 25 and 1 12.5 patch to create an in-between dose. However, because it's a controlled substance insurance will only pay for 1 box of 10 patches a month. Which normally 10 patches are the perfect amount, exactly a months’ worth of pain medication. However, 10 patches at 25 is too low and 10 patches at 50 is too high. So, we need a box of 12.5 and a box of 25 to create the right dose. But that's 2x as many patches as insurance will cover. So, we're fighting with them trying to make them understand that 1 box of 50 is leaving him over medicated and that 2 boxes at the lower dose is the right amount and less medication altogether.

As much as we're annoyed by insurance we're thankful too. So far, only this year from January till May 2018 we spent with Blue Cross Blue Shield for dad $554,925.36. November and December 2017 only 2 months with UHC was $382,254.00. That's nearly a million dollars in 7 months! That's about $4,500 a day. $186 an hour.

Onto good news, he is able to eat better with much fewer choking incidents and a greater variety of food including some breads occasionally. His weight is up to 157lbs, which is the highest it's been in 6 months. His wedding band no longer falls off.

Not so good news, after finishing his 2nd round of chemotherapy he's starting to have side effects from the chemotherapy that he didn't have before.

He's more wiped out all the time and sleepier.

His tastes and sense of smell has changed.

His gums are bothering him.

His skin is drier.

His nails have a dark colored ban running across them.

He has discovered that he's nauseous half of the time. However, it doesn't present like normal nausea with an upset stomach, instead, it makes him feel dizzy, lightheaded, all around lousy. Thankfully his anti-nausea medications take care of it most of the time.

Certain weeks he still gets neuropathy anytime he's around anything cold.

This cold caused tingling has progressed into numbness in his fingers and toes most of the time, which is starting to impair some fine motor skills.

During the last couple of chemotherapy sessions, he has had tumor fevers.

The long-awaited CT/PET Scans results after 2 rounds of chemotherapy-

Good news: there is a visual metabolic improvement of his distal esophageal mass with a measurable decrease in size to 3x2.3x6.9cm from 3.7x2.3x8.1cm. The vertical extension of the tumor was shortened; the tumor shrunk from 7cm down to 3cm in length.

The SUV also went from 5 down to 4.3.

The posterior para-aortic lymph node is down to 1cm from 1.7, lateral para-aortic 1.7 vs 1.8, and the paraoesophageal is stable at 1.6cm.

Bad news is the new and worsening soft tissue lesions involving the axial skeleton: T2, right 2nd rib, left and right 5th rib affecting T5 extending into T6, T7, and T8, L2, left L5, and left sacrum which worsened with FDG having an SUV of 3.7 where all others were under 2.7.

Surgery:

Because of the location of the tumors in his bones being sandwiched between his spinal cord, aorta arch, and lung he had to meet with a spinal surgeon from interventional radiology who wants to do cryoablation next month.

1st they will use heat to do a nerve block procedure to measure how much area the tumor is affecting.

They can't radiate the parts that already have had radiation for fear of doing damage. When radiation is given it's done at full strength and can't really be repeated because of the surrounding organs and tissues.

Cryoablation is a process that uses extreme cold to destroy tissue. Cryoablation is performed using hollow needles (cryoprobes) through which cooled, thermally conductive, fluids are circulated. Cryoprobes are positioned adjacent to the target in such a way that the freezing process will destroy the diseased tissue. Once the probes are in place, the attached cryogenic freezing unit removes heat from ("cools") the tip of the probe and by extension from the surrounding tissues.

Ablation occurs in tissue that has been frozen by at least three mechanisms:

1. formation of ice crystals within cells thereby disrupting membranes, and interrupting cellular metabolism among other processes;

2. coagulation of blood thereby interrupting blood flow to the tissue, in turn, causing ischemia and cell death; and

3. induction of apoptosis, the so-called programmed cell death cascade.

Although sometimes applied in cryosurgery through laparoscopic or open surgical approaches, most often cryoablation is performed percutaneously (through the skin and into the target tissue containing the tumor) by a medical specialist, such as an interventional radiologist.

Cryoablation has been explored as an alternative to radiofrequency ablation in the treatment of moderate to severe pain in people with metastatic bone disease. The area of tissue destruction created by this technique can be monitored more effectively by CT than RFA, a potential advantage when treating tumors adjacent to critical structures.

A big continued thank you to Rohan and Sandy for all your medical help. A huge thank you to Uncle Bill and Aunt Marina for cheering up my dad. Your visits during his off weeks raise his spirits immensely. He has appreciated your fun bags of surprises! They improve his hospital stay. It's very sweet and silly of you. We love it!

Thank you to all friends and family for your love and support.

10th Update: Round 4

August 12, 2018

There hadn't been much to update lately because Dad had a month off to recover from a bronchial infection plus his oncologist was on a 2-week vacation. I've lost track and don't know if he's finishing the 2nd half of his 3rd round or the 1st half of his 4th round depending on how they treated his month off. He was feeling much better during his month-long break and thankfully he did not feel his esophagus start to close up again like before.

Dad received his 1st nerve block on July 11th after being postponed 3x. Unfortunately, dad wasn't healthy enough to do his nerve block (epidural) as scheduled because he was coughing too much. When he finally had it, it made his ribs and area under his shoulder blade about twice as painful as it was before to about an 8/10 and that lasted about 2 weeks before being pain-free for about 2 weeks, and now going back down to the original pain level. With the 50 Fentanyl Patch on it was around a 2 or 3 and now it's around a 3 or 4 on a pain scale out of 10. He also tried to stop his 50 Fentanyl Patch, but only lasted about 2 days because the withdrawal symptoms were too much: anxious, antsy, couldn't sleep, couldn't sit still, etc.

Similarly, his chemo and immunotherapies where delayed a couple weeks in a row because his platelets and white blood cells were too low. He skipped what was supposed to be the 3rd cycle (15th chemotherapy and 3rd immunotherapy treatment) of his 3rd round and the halfway point and instead took a month long break and I guess restarted at the beginning of the 4th round. They gave him a Neupogen injection (2nd one since starting chemotherapy) which is a bone marrow stimulant. It can help the body make white blood cells. There isn't much they can do for have a low blood platelet count. They rescheduled everything and sent him back home. Days like those we wish we lived closer to UM Sylvester and that it wasn't an hour plus each way before being rejected.

He's been having pretty consistent, high fevers with his overnight treatments, so we're trying to figure out the cause. We're thinking it's the Oxaliplatin that he receives every other week. He gets Tylenol before the start of his treatment and again when his fever spikes, but his 1st week back he had a fever of 108° going through the night. When the nurses catch it, they usually pause his infusion until it's under control and then restart it. During that same 1st treatment back the high fever caused a big blister on his ear which was hard and eventually popped and crusted over. It's still not fully healed. He seems to have similar black spots on his ankle, chest, and forearm, but those turned out to be a rash from anemia.

The oncologist paused his immunotherapy (Keytruda) treatment, which he was getting once every 3 weeks, for about 2 months to see if it lessens his symptoms and fevers. Plus Keytruda can cause lung issues which is where we think his bronchitis came from. So it looks like it'll be 3 months without another dose.

He's still being given the bisphosphonates once a month for his bone metastasizes which work by inhibiting osteoclast activity.

Dad postponed his cryoablation surgery that was scheduled for August 8th after being previously rescheduled at least 2x before due to health reasons. This time we postponed it because we found out that the neurosurgeon was only doing it for pain management versus tumor removal. The surgeon was going to attempt to freeze a circle around the tumor which would kill about 80% of it, but leave the rest in his body. He'd have to have a different surgeon come in on a different surgery to actually chip away at the bone to remove the rest of the tumor that is growing next to his spinal cord, aortic arch, and lung. So in light of the new clarifications, we decided it was best to give another nerve block a try before attempting the cryoablation. Sometimes it takes 2 or 3 times for the nerve blocks to actually work. However, generally, you can only have 3 per year. So we're saving his last one if he really needs it after the cryoablation surgery. The goal is to stop the tumor growth on his bones, therefore removing the source of pain, allowing him to come off his Fentanyl Patch and making him less foggy. On the 8th, instead of cryoablation he had his 2nd nerve block and so far it seems to be working really well and he doesn't have any pain. He's going to try cutting back on his patch.

Despite have a good reaction Wednesday, he was rejected from chemotherapy Thursday and had to go back home without treatment again due to low blood count and the newest thing anemia. Both his kidneys are really hurting him. He's going to Coral Spring on Tuesday (8/14) for a Zometa, iron injection, and shot for blood white cells. Zometa is his usual once a month bisphosphonates. It works by slowing the breakdown of bone and keeping bones strong. It also helps to reduce the risk of broken bones.

His side effects symptoms reduced greatly while he was on his month break. The nail discoloration started growing out and the cold didn't bother him. The doctors said he hadn't seen anyone with their nails turning purple and discoloring like my dad's.

But when he started again his mouth really started to bother him. He was having trouble eating because his lips, mouth, tongue, gums, etc were all hurting and tingling. Similarly, he's losing his mucous lining in his nose, but apart from adding a humidifier, there isn't much to be done about the dryness and bleeding. However, for his mouth, he received a pink Magic Mouthwash that is helping wonderfully. From the 1st swish, he'd had relief. It's a solution used to treat mouth sores (oral mucositis) caused by some forms of chemotherapy and radiation therapy. Oral mucositis can be extremely painful and can result in an inability to eat, speak or swallow. Magic mouthwash usually contains these basic ingredients:

-An antibiotic to kill bacteria around the sore

-An antihistamine or local anesthetic to reduce pain and discomfort

-An antifungal to reduce fungal growth

-A corticosteroid to treat inflammation

-An antacid that helps ensure the other ingredients adequately coat the inside of your mouth

It's intended to be used every four to six hours and to be held in your mouth for one to two minutes before being spat out. It's recommended that you don't eat or drink for 30 minutes after using magic mouthwash so that the medicine has time to produce an effect.

In addition to that, he also received a prescription for Gabapentin. The medication worked well the 1st few days and stopped his tingling fingers and toes, his feet didn't feel as cold anymore, and he started getting normal feeling back in his hands and feet. Sadly, it's starting the ware off and we'll have to talk to the doctor about it. For once a side effect is working in his favor. In about 5% of patients it increases appetite and thankfully that's happening with him. Unfortunately, the increased appetite hasn't increased his weight gain, not even by a single pound. He's still around 145lbs. On the topic of eating and food, we discovered that using plastic utensils makes such a huge difference. Food still doesn't taste the same, but it's a big improvement. The metal was giving off a bad taste in his mouth. Anyway back to Gabapentin, it's used to control neuropathic pain which is widely recognized as a common consequence of cancer and can result from the administration of several common oncology drugs, in his case oxaliplatin. There is currently no approved therapy for the prevention or mitigation of chemotherapy-induced neuropathy. Patients with neuropathic pain may report symptoms of paresthesia, dysesthesias, allodynia, hyperalgesia, and hyperpathia. They may describe the pain as sharp, burning, tingling, prickly, or shooting. Treatment includes the use of anticonvulsants, antidepressants, opioids, and topical agents. In his case, Gabapentin is an anticonvulsant. Gabapentin and pregabalin have been used successfully in the treatment of cancer-related pain syndromes. Both can be used alone or in combination with morphine for effective pain relief. The combination of either agent with morphine can have opioid-sparing effects and a beneficial effect on daily activity, mood, sleep, and quality of life.

Chemo brain is real and it's been frustrating, sad, scary...any advice would be appreciated as always.

Jeez, rereading this makes it sound pretty dim, but it's not all so bad. Not all side effects happen all the time nor concurrent. He really only has bad days a few times a week. He's clear a few days a week too. His tastes are constantly changing, so what was bad is good and vice a versa. On the bright side, his mood seems to be better most days, but he's still fatigued. Since it's been more than 2 months since his last scan hopefully he'll get scanned asap and we can see how things are progressing internally.

11th Update: Lung Fibrosis Hospitalization

September 28, 2018

I'm long overdue on my updates again. Dad's been having little changes daily, but long-term there haven't been any major changes to report since his birthday. He had a really fun and mood boosting visit from his sister and brother in law too.

I think in the last 7 weeks he's only had maybe 3 full chemotherapy treatments and 2 immunotherapy treatments, which is about half of what it should be. I can't really remember the last time he had an event free session. I think he was off most of July due to a bronchial infection and his doctors’ vacation, then he had 3 feverish chemotherapy infusions and 1 immunotherapy session, and he's back to being off again these last couple of weeks.

His Keytruda immunotherapy went smoothly on September 6th, in and out, no issues.

However, he wasn't so lucky for his chemotherapy on September 13th. Because he'd been getting fevers with one drug his doctor cut the dose in half and doubled the infusion time, but it didn't work. He only got about 3/4ths of the way through before he had a bad reaction to Oxaliplatin, the 1st chemotherapy drug. It caused tightness in chest which made everyone panic because he's a male over 50, so they had to admit him to a different hospital across the street from his main oncology one. It was an overly complicated situation with an ambulance even though there wasn't a need. They were worried about heart damage, but thankfully he was fine. The buildup of the toxic platinum caused something like an allergic reaction. It was scary for a little while in the ER because he was totally out of it, delirious and hallucinating, going in and out of consciousness, and speaking nonsense. There the ER doctor found what she thought was a possible infection, but as usual they had no idea if it was pneumonia or sepsis again or a kidney infection or what. All they knew was elevated white blood cells, but he had a booster shot specifically to raise them that week, so no one knew. It was a really horrible ER experience overall.

His 1st week in the hospital they gave him a couple different types of antibiotics because they thought it was a bacterial infection, but when he didn't improve they switched him to antifungal drugs thinking he had a fungus in his lungs, but again he didn't get better. So, then they suspected a viral infection, but he came back negative for everything. After about 10 days of guessing, he started to go into respiratory distress dipping into type 1 respiratory failure. They transferred him from the cardiac floor to the pulmonary floor to keep a better eye on him since he was hypoxic. The infectious disease doctors still come by and test him daily, but they haven't found any infections. They tried steroids on Tuesday and he's slowly been improving over the last 3 days. They were able to take him off the 50% high flow forced oxygen machine and now he's on the regular oxygen machine at 2L. They're back to giving him antibiotics 2x a day as a preventative measure because there might be some fluid or mucous build up in his lungs. He has a dry cough. As soon as his oxygen levels surpass 93 without the aid of the tank he'll be able to go home.

From the multiple chest x-rays the doctors are thinking that the combination of the Keytruda immunotherapy and the Oxaliplatin chemotherapy drug have caused a honeycombing of his lungs with fibrosis. It seems those drugs have aggravated the little bullous he had in his lungs from decades ago and turned them into larger cysts.

His oncologist hasn't said much about how he's going to proceed, but he said he has other options. The allergic reaction to the Oxaliplatin will only get worse, so it's being removed from the chemotherapy cocktail. Likewise, the Keytruda immunotherapy attacks lungs as a side effect, so that has to be stopped as well. The doctor doesn't think any immunotherapy will be safe for my dad. He told my dad that he's on a break from treatment until he's a few weeks out of the hospital and fully recovered. It's looking like he'll have to stay at least another week.

Uncle Bill's Boredom Bag has been coming in handy with the dominoes and cards, so thank you again for that.

His hair is still falling out and he's losing most of his eyelashes. The Gabapentin is helping with the neuropathy. His fingers and toes aren't in pain anymore, but they're still cold all the time. The plastic silverware is still doing the trick to improve the flavor of food and get rid of the metallic taste. His appetite is slowly coming back after being so long without treatments, although he still hasn't gained any extra weight above that constant 145 lbs. The awful hospital food doesn't help either. The 2nd nerve block seemed to have worked and he cut his Fentanyl Patch down from 50 to 37. He's still around a constant 2 or 3 out of 10 for pain. A new spot in his upper back started to bother him. He was supposed to go in for CT/PET Scans last Monday the 17th, but being hospitalized for 2 weeks it's been put on hold. We're anxious for the scans and results to get a better picture of how well the limited treatments have been working.

12th Update: Homecoming

October 10, 2018

Dad finally came home on Saturday after 3 weeks and 2 days in the hospital, but he has 4 different oxygen machines, tanks, nebulizer, etc to use until his lungs heal. He's been enjoying long walks with his tanks. Kind of like scuba diving on land ;-) It seems the Oxaliplaten chemotherapy drug and the Keytruda immunotherpay medications accidentally gave him a form of cystic fibrosis as a side effect :-( so doctors are giving him steroids and a preventative antibiotic medication and hoping he'll go back to normal. Since it wasn't a naturally occurring thing they're hoping it'll reverse itself.

Thankfully he's eating somewhat OK. He occasionally chokes and vomits maybe every other meal or so, but is mostly able to eat. His appetite and taste are coming back after a month of no chemo. His hair and eyelashes are also starting to come back. His fingers and hands stopped hurting, now they're just numb, but his toes and feet still hurt from the cold.

Lots of doctor appointments this week to follow up. He's off chemo until further notice.

13th Update: Hospital Part 2 and Back Home

October 25, 2018

Things were going well until Thursday (10/11). He didn't sleep nor eat much the last few days and started to vomit tons of ink black liquid around 7 am. He threw up 10-12 times and finally stopped around 2 pm. We went to the ER and when they were checking him in they asked if he was religious to bring in a priest. Everyone was terrified and worried. After a bunch of chest and stomach x-rays, MRI, CT scan, bone scan, kidney, and lower back scan, blood tests, and exams they weren't able to tell us much other than he was anemic, dehydrated, had low blood pressure, and his metabolic panel was all over the place. Every doctor has a different opinion of what happened and where it came from. They're not sure if it was his esophageal tumor bleeding, or if he has a microtear in his intestines, or if it's a tiny ulcer somewhere. They were pushing antacids and hoped he'll be discharged on Monday (15th). They were observing him and hoping they won't have to do a Hail Mary pass endoscopy because so much could go wrong there. He's in a lot of pain from the top of his back down to his lower back and continuing down his right leg. He's slowly improving, but his spirits still seem a little low. We're keeping our fingers crossed and hoping for the best of course. It's been rough last few days.

The mysterious internal bleeding had stopped by the time we arrived at the ER on Thu, but it happened again Sun (14th) night. Thankfully less dramatic and for a shorter time, but still. He also lost some range of motion in his right toes, but no one can figure out that one either.

Dad's weak, out of breath, exhausted...he says he feels like he's just struggling.

The pulmonary team compared his January CT scans to the CT scans from 10/17 and it turns out that the fibrosis has hardly changed at all so now it's the pneumonitis that is the culprit behind his breathing issues. The good news is that pneumonitis can and will be treated in order to reverse itself, so eventually, 3 months, 6 months, a year from now he can be back to where he was before the Keytruda and Oxaliplatin.

Dad had a blood transfusion that helped him feel much better and hopefully those new red blood cells will help his anemia too.

Dad's finally home again and happy to be back. We had another delirium episode on Saturday. He's loopy and hurting. He has a lot of sleep and calories to catch up on. A busy week full of appointments...

-Nutritionist: helped us with menu meal plans and gave a list of high-calorie food options to help my dad eat somewhere between 3,000-4,000 calories a day to gain back his lost weight and be strong enough to resume chemotherapy in 6ish weeks.

-Pain management specialist: I was happy to see he was all for complementary and alternative medicine approaches.

-Pulmonologist: confirmed the lung medications and said pretty much exercise is the only thing that has a chance at healing his lungs

-Oncologist: wants to see dad in a couple weeks to reassess and is thinking of cutting Oxaliplatin and Keytruda of his plan and only keep Docetaxel, Leucovorin, and 5-Fluorouracil

-Masseuse: immediate relief dropped his pain levels by 2 or 3 numbers

-Still to come next week are the radiation oncologist, acupuncturist, gastroenterologist, etc.

***An incredibly huge thank you to DJ, Stacy, Chaim, Jai Mi, Varun, Robb, and to Sandra and David and their families who matched with my dad donated blood!!! Thank you to Rohan for being so patient and encouraging with the frantic phone calls from me!!! Thank you Ashley and Sam for going above and beyond!!! Thank you to Lauren who I know if you would you could!!! Thank you for the articles and information Jaymie, Laura, Jeanne, Sarah, and Janine!!! Thank you to all the friends and family who've been there asking questions and sending loving messages: Harry, Chris, Maria, Denise, Val, Tom, Tony, Dian, Peter, Jimmy, Zoe, Aidan, Allegra, Mark, Bill, Vikki, and Stephanie!!! I'm sure in my overwhelmed and sleep deprived state I'm forgetting loved ones, so please forgive me.***

14th Update: Memorial Regional Hospital

November 6, 2018

Dear Family and Friends,

If you want to see my dad, now is the time to do it, as soon as possible. The doctors are really scaring us this time around. They’re estimating only 6 months to 2 weeks left to live.

Originally last year, the oncologists we consulted at MSK, MD Anderson, UM, and Memorial had all estimated 3-5 years. However, in the beginning of September, a lot began to go wrong and snowball. The Keytruda and Oxaliplatin harmed his lungs with scaring fibrosis. He’s had to be on oxygen since then and has had a harder time breathing. Because of the hard time breathing and the past 2 months of waiting to be healthy enough to restart chemotherapy, the esophageal tumor is growing and making it harder to eat as well. He’s gotten very weak from the combination of not enough food nor exercise.

He was readmitted Friday for shortness of breath with a slight fever. Today they upped him to high flow oxygen 6L and gave him Risperdal to counteract the restless from the other pain medications and the anxiety that came with his doctor estimating 6 months to 2 weeks depending on if he improves or declines. He said to come home he has to come off the high flow oxygen. He's not eating well because he's having a hard time breathing. They don't want to do nutrition through IV because of the high chance of fungal infection and they don't want to do a feeding tube unless it's the last resort later on. The catscan showed a new nodule in his lung, but they're not sure what it is. The fibrosis hasn't improved. The cancer is still just limited his esophagus, lymph nodes, and a new spot in his bones. It hasn't spread.

We’re preparing for the worst while hoping for the best. If he can leave the hospital, he has an appointment with his radiation oncologist on Thursday to hit a few points that are hurting him on his back and for an acupuncture treatment. Hopefully, that will take care of the pain.

While he probably won’t answer as he’s weak from lack of food, sleep, and pain, he still appreciates the calls and texts. What is better is to come in person. Don’t wait. No regrets. They were wrong about him dying several times before, as I suspect they are now, but you never know. Please come to visit in person if you are able to asap.

Thank You!

Love,

John, Isa, and Tatianna

15th Update: Passing Away

November 14, 2018

Dear Family and Friends,

I'm so sorry to let you know that my dad passed away at 5am this morning, Wednesday November 14th, a day after he celebrated his 34th wedding anniversary with my mom. He hung in there and fought hard until the very end. He was always surrounded by an immense love and his family never left his side. The esophageal cancer attacked his bones which affected his blood (for which he had a 2nd transfusion a couple nights ago) and the immunotherapy and chemotherapy did more damage than good as it turns out. In the end his lungs shut down. We did everything we could and he is now resting in peace with his parents.

16th Update: Memorials, Viewings, Wake, Funeral, Burial, and Reception

November 15, 2018

Dear Family and Friends,

The viewing Florida for my dad will take place in Coral Springs Funeral Home from 5-9 pm on Friday, November 16, 2018, at 1420 N. University Dr. Coral Springs, FL.

We'd like to see everyone come out to celebrate my dad's life: family and friends, even if we haven't seen each other or spoken in a long time.

We'd love for everyone who wants to share stories, memories, and photographs with us. You don't have to feel obligated to stay for a long time or say anything, a quick stop to say hello is fine too.

***Please help us spread the word to everyone dad may have known. ***

My dad's wake in Chicago is this Sunday, November 18, 2018, from 12-5 pm at Barr Funeral Home (6222 N Broadway, Chicago, IL 60660). Maybe we can all have an informal a dinner afterward.

We're all meeting at the funeral home on Monday, November 19, 2018, 10 am to have a procession leaving the funeral home at 11 am to go to Elmwood Cemetery and Mausoleum (2905 Thatcher Ave, River Grove, IL 60171) around noon. Followed by a reception lunch around 1 pm at The Blossom Cafe (8349 W Lawrence Ave, Norridge, IL 60706).

Love,

Tatianna and Isa