Back in early August 2017, I had my two chest catheters removed during one of my many hospital visits during the summer. While insertion of both devices was done under twilight anesthesia, the medical professionals who arrived at my room explained that lidocaine injections would hurt more than the actual extraction – so no local anesthesia would be used.
I had two different catheters in my body. The first one was an Aspira® catheter, which was in my body approximately four months. The second was a PleurX® catheter that was used for a much shorter period.
Since the removal of both catheters, I’ve had issues with the area between where the Aspira catheter was inserted and the exit site (see Figure 1). The area was often sore and red, which got gradually worse during the past two months. This week, the exit site became raised and fluid started oozing from the previously healed exit incision.
To help keep the catheter tube in place, a retention cuff is used to facilitate tissue in-growth (see Figure 2). Accordingly, the catheter must be surgically removed by first freeing the cuff from the tissue, then by pulling the catheter out gently and smoothly.
Yesterday, an ultrasound imaging procedure revealed that the Aspira cuff was left behind and was the source of my discomfort. There was no surgical procedure used in the removal of my Aspira catheter back in August and therefore the cuff, which became quite attached to my body, didn’t want to leave.
Fortunately, I was able to see a surgical team late yesterday as well. After assessing the situation, they were able squeeze me in for a procedure. First, they numbed the area with lidocaine injections and then retrieved the rogue Aspira cuff. It was a quick procedure.
I’ll have plenty of time to rest, as my blood counts were once again too low for chemotherapy this week. Next week is my normal week off from chemo as well, so my next round of therapy should be on November 7th.
Life has been hectic since this past Sunday when Lorie and I drove to New York City for another visit to Memorial Sloan-Kettering Cancer Center’s (MSKCCs) urgent care facility. Drainage from my chest tube once again changed from amber fluid to the color of a fine Cabernet wine, which signaled that bleeding resumed. More alarming was the accompanying shortness of breath and increased coughing. I was out of breath even from walking a short distance to go to the bathroom.
We arrived at MSKCC around 10am and, following a brief review of recent events, had a chest x-ray taken to get a quick read on the situation. The resulting images showed a complete “white-out” in the left lung, which indicated that fluid had essentially filled the entire space. Normally, the lungs look transparent or black on an x-ray due to air in the lungs.
The fact that I had only one viable lung explained the shortness of breath and coughing. What the x-ray couldn’t reveal was the composition of the fluid (serous fluid, blood, tumor) or its source. For more information, a CT scan was required and scheduled. Unfortunately, weekends at any hospital can be hectic and my CT scan didn’t take place until close to midnight and I was admitted.
Monday morning, we had the pleasure of meeting again with surgeon Dr. Bernard Park, deputy chief of clinical affairs, thoracic service at MSKCC. In December 2016, Dr. Park had successfully performed a bronchoscopy procedure to biopsy a suspicious lymph node near my airway. We knew that we were in good hands.
Dr. Park explained the situation and the requisite next-steps were abundantly clear. For whatever reason, the Aspira Pleural Drainage Catheter in my left lung wasn’t fully draining the fluid – especially towards the top section of my lung. That fluid needed to be drained in order to alleviate shortness of breath and coughing. How to best accomplish this was a source of significant discussion.
One short-term solution was to temporarily insert a plastic tube straight through the front of my chest into the top section of the lung to manually extract the fluid. This would require a brief stay in the hospital while the tube was present and it would be removed prior to going home. A longer-term solution was to place a second PleurX catheter that could be accessed whenever needed at home to extract fluid from the top section of the lung.
In either case, a potential pitfall was that the fluid in the upper section of the lung may actually be fibrotic scar tissue (called loculation) or tumor, preventing effective drainage. Dr. George Getrajdman, an interventional radiologist at MSKCC, proposed a step-wise procedure. First, he would try to extract the fluid near the top of the left lung using a syringe to see “if” anything could be extracted. If so, he could confidently proceed with placement of a second catheter (Option A) or the fluid could simply be drained with the syringe to see if that provided symptomatic relief before proceeding with more permanent catheter placement (Option B). Placing a temporary plastic tube was also a consideration (Option C), with the downside being that fluid accumulates again in the future – requiring another procedure. If no fluid could be extracted with a syringe, then the space was being occupied by something more solid (fibrotic scar tissue and/or tumor mass) and a catheter would be pointless. Ultimately, I decided to proceed with Option A.
Requiring more urgent resolution, however, was the recently discovered blood clot in my iliac vein near the pelvis and its potential to detach and cause a pulmonary embolism (PE) – a condition in which one or more arteries in the lungs become blocked by a blood clot, which could stop blood flow to the lung. With essentially only one lung functioning, a PE in my remaining viable lung would likely be fatal. Hence the sense of urgency.
Due to the recurrence of blood in the drainage from my original chest tube, we reached the point where taking anticoagulant medication (Lovenox®/ enoxaparin sodium) to treat and prevent deep vein thrombosis (DVT) was no longer viable and was discontinued. The only alternative was placement of an inferior vena cava (IVC) filter device designed to trap/prevent my blot clot from traveling from the largest vein in the body, the inferior vena cava, to the lungs or heart.
To insert an IVC filter, I was given medication to help relax and a local anesthetic to numb the area of insertion. Implanting the IVC filter was Dr. Getrajdman, who inserted a catheter through a small incision in my neck. Using X-rays images to guide the procedure, he advanced the IVC filter through the catheter and into the inferior vena cava. Once the IVC filter was in place, he removed the catheter and put a small bandage on the insertion site.
Fortunately, Dr. Getrajdman was also able to deal with the left lung issue during the same procedure. Approximately 1.5 liters of fluid were successfully acquired from the top portion of the lung, so he proceeded with placement of a second catheter as planned/hoped. Both procedures took about 1.5 hours in total to complete. Afterwards, an x-ray confirmed that the top portion of the lung was free of fluid as shown in the accompanying image.
My breathing improved immediately following the procedure and I felt fine with all of the pain medication. However, waking up the next day (Tuesday) I felt like I’d been hit by a truck. There was a fair amount of pain at both the incision on my neck from the IVC filter insertion and the newly placed catheter site. As the day progressed, the pain diminished and I started feeling much better.
By late afternoon, tissue plasminogen activator (TPA) was injected through my original Aspira chest tube to help clear the line by breaking down blood clots. Afterwards, we were trained on using the “new” PleurX catheter and then proceeded with draining fluid from both the top and bottom catheters. The top PleurX catheter rapidly drained 500cc of fluid, which looked far less bloody than what had previously been extracted from the bottom. We were only able to drain 200cc of fluid from the bottom Aspira catheter, which was still bloody and thicker. It’s speculated that the fluid from the bottom was left over from before and there was no active bleeding, which will be confirmed by monitoring hemoglobin levels.
With the IVC filter in place and the ability to drain both top/bottom fluid from my left lung, I was able to proceed with my second dose of chemotherapy while in the hospital. This consisted solely of paclitaxel and then next week should be my initial loading dose with cetuximab.
We’re planning to try draining both chest tube sites today (Wednesday) and looking for further improvement in subsequent chest x-rays. Assuming all goes well, I should be released from the hospital but need to stay in NYC overnight and see my oncologist tomorrow. I’m feeling much better now, but the coming days should be when the effects of my first week of chemotherapy (paclitaxel/carboplatin) start materializing. In any event, I’ll be happy to get home hopefully tomorrow and see how big our new puppy Humphrey has grown in the short time we’ve been away.
As discussed in my prior blog post, the recent CT scan at the National Institutes of Health (NIH) didn’t turn out as we had hoped. Not only did the cancer show signs of progressing, but a blot clot was also found in my left iliac artery near my pelvis.
I had been on Lovenox (enoxaparin) for just under one week, when I noticed that the daily drainage from my chest tube looked much more like blood than the usual straw color. Equally disconcerting, the volume of drainage was greater than usual.
At the suggestion of my treating physicians, we stopped at the emergency room at a local hospital in Bucks County (which will remain nameless) on Sunday morning around 10am simply to have a complete set of blood work done. The concern being that the loss of so much blood via the chest tube could necessitate a transfusion.
Fortunately, my hemoglobin levels were okay (low hemoglobin count may indicate you have anemia) and a transfusion wasn’t needed. However, a big problem remained – finding the cause of bleeding coming from my pleural effusion and how to stop it.
One thing was almost certain – the anticoagulant Lovenox likely played a role. Discontinuing Lovenox could help reverse the bleeding, but I would be left with an untreated blood clot that could cause major problems if it moved from its current location. Damned if i do, damned if i don’t.
Quite the conundrum and not one to take lightly. As such, after waiting around the local hospital until early evening with no solutions, nurses, or physicians in sight, Lorie took control and requested that I be immediately discharged. Shortly thereafter she drove us to New York City to visit Memorial Sloan-Kettering Cancer Center (MSKCC). I already had an appointment scheduled with my medical oncologist (Dr. David Pfister) for Tuesday to discuss possible next-steps for treatment, such as chemotherapy, and the drive to NYC is shorter than going to the NIH in Bethesda, MD.
We arrived after midnight, but the urgent care team at MSKCC promptly assessed my condition. More blood work was drawn along with a chest x-ray and CT scan. Simply looking at the chest x-ray, I could tell that the pleural effusion was quite large. This shouldn’t be the case, as I drain it daily.
For now, stopping the internal bleeding is more important than addressing the blood clot – although both issues require immediate attention. I’ve already discontinued the Lovenox and the MSKCC team will assess various options to access and drain the large amount of fluid still trapped in my left lung. The impact of the fluid is not insignificant, as I am short of breath walking short distances or up/down stairs. Coughing also has gotten worse and leads to feeling light-headed or dizzy.
Assuming the pleural effusion can be controlled, the next step would be to deal with the blood clot. One solution is to place a filtering device in the Inferior Vena Cava (IVC, a large vein in the abdomen that returns blood from the lower body to the heart) that could help prevent a pulmonary embolism, which is fatal in one-third of patients who suffer from it. The filter essentially traps blood clots and prevents them from reaching the lungs or heart.
Of course, aside from the aforementioned, I am interested in exploring potential new treatment options and look forward to upcoming physician appointments. Until then, I’ve been admitted to MSKCC for at least a day or two and will provide any meaningful updates via Twitter, etc.
It’s been a couple of weeks since my last clinical post, so I wanted to provide an update following this week’s NIH appointments.
First, surgical insertion of my Aspira® drainage system has dramatically improved the pleural effusion in my left lung. It’s essentially a chest tube/catheter that allows me to drain the fluid buildup on an as-needed basis into drainage bags at home. The image to the right shows before and after chest x-ray images that demonstrate just how blocked my left lung was before being drained (nearly 2/3 blocked). It also shows how my left lung is now “close” to normal following drainage.
Second, I’ve been on prednisone (steroid) to help “sculpt” the inflammatory response, which is also helping keep the fluid from building up so quickly in my left lung. Whereas I was emptying 100 mL or more on a daily basis previously, I am now only draining 15-20 mL every other day or so.
Now that the pleural effusion can be managed, attention returned to whether or not to resume treatment with M7824, a completely novel, first-in-class, bispecific fusion protein (see prior posts for more details). My last infusion of M7824 was several weeks ago.
Following another CT scan and constructive discussion with the NIH team, we came to the conclusion that there is essentially a tug-of-war occurring between the cancer in my lungs and my body’s immune system, the latter of which appears to be benefiting from M7824. The hope is that eventually M7824 will tip the scale in favor of my body’s immune system and control the cancer.
Accordingly, the decision was made to keep moving forward with M7824 and I received an infusion on Tuesday, May 16, 2017. As with past administrations, there were no issues and I returned home to Pennsylvania with Lorie later that evening.
The pleural effusion will be monitored closely and managed via the catheter and steroids. As long as there are no major issues in terms of fluid in my lung, I will continue to receive an infusion of M7824 every other week. A repeat CT scan will be done in a month or so to reassess the situation.
This past Wednesday, I had a thoracentesis procedure in which a needle was inserted into the pleural space between my lungs and chest wall. This procedure was done to remove excess fluid, known as a pleural effusion, from the pleural space to help me breathe easier.
During the procedure, Dr. Elliot Levy, an interventional radiologists at NIH trained in radiology and minimally invasive procedures, drained 1.5 liters from the pleural space. Almost immediately, I felt better and even while I was being wheeled back to my recovery room, I asked my wife Lorie to grab me a turkey sandwich from the cafeteria as I was quite hungry. It’s possible the large amount of fluid on my left side was putting some pressure on my stomach, which could help explain why I haven’t had much of an appetite lately.
By Thursday, however, the fluid was returning, prompting yet another thoracentesis procedure on Friday to remove 1.5 liters of fluid. The rapid nature of the fluid buildup means that I will most likely have an Aspira® drainage system surgically installed to conveniently let me drain the fluid buildup at home via a small catheter and drainage bags. That procedure is planned for Monday, so I have been staying at NIH since Wednesday and will be here over the weekend.
More importantly, however, a CT scan was also done on Friday morning with disappointing results. The cancer nodules grew since the last CT scan on March 7, 2017. This reflects true disease progression as opposed to “pseudo-progression” as discussed in a prior post. I have been taken off the clinical study with M7824.
My individual results do not reflect poorly on the future of M7824, but rather underscore that we still have a lot to learn about immunotherapy and cancer. While I may not have benefited from the drug, the resulting knowledge and clinical data may help guide future development and I am proud to play a part in that process.
At this point, if I received no further treatment and went on hospice, my likely survival would be about two months – although every patient is different. I have scheduled an appointment with my oncologist at MSKCC to discuss the pros and cons of chemotherapy at this stage, but the balance between quality of life and quantity of life is not trivial and I haven’t made a firm decision to go in this direction. Chemotherapy may only add a month or two of survival with a negative impact on my quality of life.
While I have been very open about my disease since originally being diagnosed in December 2015 and enjoy blogging, I will now be focusing much more time with my wife and daughters and finishing up my memoir, which I hope to have published. This will unfortunately mean less time for updating this blog and responding to emails.
Thank you to everyone who has offered their best wishes, thoughts, and prayers during my cancer journey. Having such an amazing support network of family, friends, and social media contacts has been a great source of strength and inspiration. Special thanks to my wife, Lorie, who has been by my side the entire time.
If you’ll indulge me, I would like to end this post with three requests:
If you have a son or daughter, please talk to your doctor about the HPV vaccine, which protects against cancer of the cervix, vagina, and vulva in women; penis in men; and cancers of the anus and head/neck (including the base of the tongue and tonsils) in both men and women. HPV is a very common virus; nearly 80 million people are currently infected in the United States. About 14 million people, including teens, become infected with HPV each year, resulting in 30,700 cancers in men and women. HPV vaccination can prevent most of the cancers (about 28,000) from occurring.
Help preserve federal funding levels by communicating with lawmakers about the critical importance of investing in medical research. There are far too many people suffering from cancer and this is not the time to cut the budget for the National Institutes of Health (NIH) by 18.3 percent, about $5.8 billion, as has been proposed. In an Op Ed by Harold Varmus appearing in the New York Times on March 22, 2017, he states that only about 10 percent of the NIH’s budget supports the work of government scientists and that “over 80 percent of its resources are devoted to competitively reviewed biomedical research projects, training programs and science centers, affecting nearly every district in the country.” Harold Varmus, a professor at Weill Cornell Medicine and a co-recipient of the 1989 Nobel Prize in Physiology or Medicine, was the director of the National Institutes of Health from 1993 to 1999 and of the National Cancer Institute from 2010 to 2015.
If you or someone you know is battling cancer or another disease, please talk to a physician about available clinical trial options. Clinical trials are a key research tool for advancing medical knowledge and patient care. Such trials are important to learn whether or not a new approach works well in people and is safe and which treatments or strategies work best for certain illnesses or groups of people.
Draining the swamp is a metaphor used by American politicians, referencing actions to clean up government corruption. In my case, however, I’m referring to a treatment that involves draining the fluid from my chest cavity, either with a needle or a small tube inserted into the chest. This will treat my pleural effusion, also called “water on the lung,” which is an excessive buildup of fluid in the space between my lungs and chest cavity (see diagram).
The pleural effusion is likely the source of my coughing, shortness of breath, and other recent symptoms. I haven’t been feeling well at all lately, but once it is drained – I should feel much better.
Thin membranes, called pleura, cover the outside of the lungs and the inside of the chest cavity. There’s always a small amount of liquid within this lining to help lubricate the lungs as they expand within the chest during breathing. Certain medical conditions, such as malignancy, can cause a pleural effusion, which is likely my situation. The excess fluid prevents the lung from expanding normally.
Sometime this morning I will have the procedure and hope to provide updates when I am awake later on.
I may need this treatment more than once if fluid re-collects, but we’ll cross that bridge another time.