Giving Thanks…

Posted on November 23, 2017 by MaryO

From the Giving Thanks series at http://www.maryo.co/tag/giving-thanks/

Today I am hugely thankful that the last major issue we had here was in 2013 when Tom had his heart attack. That event caused me to start this new blog to post about our experiences.

January 27, 2013 was our 40th anniversary. DH called me and said he was leaving a conference in Washington, DC and we’d go out to brunch when he got home.

The next thing I had heard was that he was in the ER with a suspected heart attack. I rushed to the ER and found him in his cubicle. He’d had 3 nitroglycerine pills by then and figured he could go home.

Wrong! They had him stay overnight at the hospital. January 28th, they decided to send him by ambulance to Fairfax Hospital for a cardiac catheterization and possible stent.

At the end of that, the surgeon came into my waiting room and said that he needed triple bypass NOW. Three of the arteries were 100% blocked. They got me calmed down to see him in the OR.

He was trying to get odds of not doing this surgery and just leaving then. Finally, I said that he would do this surgery, we weren’t going to fool with this.

I really lost it when they asked me if we had any children and I said 1 son in NYC. They called him at work in New York and had him get there as soon as possible. I’m sure he could hear the fear in my voice.

They wheeled DH off for surgery and I waited again. Luckily, 2 church friends came and sat with me and our pastor arrived about 8:00PM. Our son arrived about 8:30PM after taking the Acela and a taxi directly to the hospital.

The surgery was over about 9:00PM but when we saw Tom, he was still under anesthesia. They kept him that way until the next morning since he was too confused when they woke him up.

Long story short (too late!) – he got out of the hospital on the 31st and I played nurse 24/7. He couldn’t drive/go anywhere for 6 weeks, and then there were 12 weeks of cardiac rehab.

One of the things that came out or cardiac rehab was becoming friendly with 2 other couples (although one of them has since split up). We go out to dinner every couple months…and none of the surgeons would be happy about our choices.

A slightly different take on the events, written 3 weeks later on the same blog.

Icy Days and Mondays…*

* With apologies to Karen Carpenter!

I know I’m not supposed to “relive” events. I have done that too often with my Cushing’s and cancer adventures and I’m told that reliving causes nearly as much stress as the original event.

So, I plan to write down my memories here and try to let them go…

It all started on Sunday, January 27, 2013 – our 40th wedding anniversary. I picked up my mom and went to church so I could sing in the choir. DH went to a meeting of some sort on Benghazi.

After church, I stopped off in the church office for a goodie bag that the Staff Parish Committee had left.

Dropped my mom off at her house and went home. I put the goodie bag on the dining room table and logged onto the computer to do some work.

I got a couple text messages from DH:

I figured I’d take a nap until DH came home for that late brunch.

The next thing I hear was my phone ringing, a call from DH. He was in the ER at Fair Oaks with a heart attack. OMG!

I immediately leaped up and rushed out the door. I called one of my pastors and got to the ER in record time. When I arrived, he was in a bed, all hooked up to monitors, fluids and such. He was awake and feeling pretty well thanks to the nitroglycerine they had given him immediately after arrival.

When we had a chance to talk, it turned out that he had been in his conference and realized his chest was getting tight. He found the hotel’s store and bought aspirin – 3 for $11.00 which he thought was extravagant. He bought them and took them anyway – and probably saved his life.

On the way home, he was feeling pretty good so he stopped at the mall to buy an anniversary gift. The salesgirl in Zales didn’t know that ruby was the stone for the 40th anniversary and was kind of ribbing DH for waiting until the last minute to buy a gift. He walked out of there, felt more tightness and headed to the ER…where he called me.

DH was feeling pretty well thanks to the nitroglycerin and aspirin plus whatever else they had in the IV and wanted to go home. The staff said no way – he had to stay overnight so he could be monitored.

The “automatic clock” on the wall said it was Monday. Other rooms said Sunday. Hmmm

A trainee EMT came in to ask some questions as part of his learning process. Every time DH mentioned the word “Benghazi”, his blood pressure spiked about 40 points or so. That term became verboten ever after.

My pastor stopped by and we had some nice chats and prayers.

Time passed, tests were done, doctors and nurses stopped by. Finally, DH was moved to his room upstairs.

About 9 or so I went home and found our dog huddled by the front door – I had left so quickly I hadn’t left her any lights on. I imagine she was quite worried.

I can’t even remember what I had to eat for dinner but I really wanted something chocolate. On a whim, I looked in that goodie bag and there was a double-sized brownie. I think I ate that in record time and it really hit the spot.

Monday morning (for real!), I checked the weather and found that school was starting late because of icy conditions. I put on boots and took the dog out. It seemed to be raining – if it’s raining, it must be warm, right? So I didn’t really pay attention (and I had other things on my mind!) and completely missed seeing the black ice.

Next thing I knew, I had fallen on one knee, my cell phone in my pocket bruised my other thigh and my left arm hurt where I’d reached out to catch myself. Luckily, I hadn’t let go of the dog’s leash.

I ended up sitting in a puddle of icy water for a long time, figuring out how to get up. I finally sort of crawled up the trash can that was sitting in the driveway.

The dog had an abbreviated walk, I changed my wet, cold clothes and headed to the hospital. I was showing DH my knee and one of the staff bandaged it up for me. I told him I hadn’t fallen at the hospital and wouldn’t sue but I guess he wanted to be sure.

(Today, Monday February 18, my knee still has a huge lump under the skin and hurts when I touch it, although I’m no longer limping, The bruise/pain from cell phone finally went away)

The hospital staff decided DH should go to another hospital which is world renowned for its work with heart cases to have a heart catheterization and possible stent. DH was ready to walk out to my car to drive him to Fairfax Hospital. He wasn’t thrilled when he was strapped to a gurney and out to an ambulance instead.

I headed over in my car. They’d changed the entrances to the hospital since the last time I was there and I couldn’t find the “Grey Entrance”. Finally, after wandering around for a long time, I found it.

I saw DH in the prep room where they got him ready for the heart catheterization – then they rolled him away after explaining all the things that could go wrong.

I went out to the waiting room, got some coffee and a sandwich and hunkered down with my iPad.

Eventually, my beeper went off and I was called back to the room where DH had been prepped. The surgeon was there this time. She said that 3 arteries were nearly 100% blocked and they needed to do emergency triple bypass. They also needed me to convince DH of this since he was figuring he could tough it out.

I started crying but she said I had to get myself together and convince him NOW. I had to put on scrubs and off I went to the OR. I got there, DH was on the table trying to figure out the odds if he didn’t do this surgery. All the medical staff said that he had a very low chance of survival without the operation. He still wasn’t sure. He wasn’t afraid to die. Tough Guy, Yadda Yadda.

One of the nurses asked me if we had any kids. I said only one, in NYC. She said I should call him and get him here ASAP. She even dialed the number. I talked to DS at work and he agreed to come right away. He was pretty scared, too. He later revealed that he had been crying on the train ride.

I went back to the OR, told DH that DS was coming and that he was going to do the surgery like it or not. I signed the paperwork and sent him to a very scary surgery.

It was about 4:30 by then and I needed to take the dog out again. They said I could go home – surgery wouldn’t be over until about 8:00PM or so. Got home, took the dog, made sure that there were lights on, and headed back to the hospital. Another pastor from my church called. He said he’d be by the waiting room later.

Two friends from the church office texted me to say they were coming over to sit with me in the waiting room. They got there about 6:30 and we decided food might be a good thing. We headed out, following a variety of directions and signs and walked for a l-o-n-g time.

My knee was killing me. We got to the cafeteria and found out that it was closed. the 24-hour one was elsewhere. We finally found that, got some food and my cellphone rang. The surgeon would be coming out soon to talk to me.

We hustled back to the waiting room and the surgeon came out about 8:00 with good news. Successful surgery! DH wasn’t awake yet but we could see him about 9:00PM.

The pastor arrived about 8:30, then DS got there about 8:45. Finally, they said we could see DH although he still was asleep. My friends left, pastor and DS went in to see him in ICU, sleeping so peacefully with so many lines attached. The pastor prayed, then left. DS and I decided to stay to see DH awake.

About an hour later, the ICU tech said they were going to keep him asleep overnight so we went home.

Tuesday, January 29 – DS called the hospital fairly early and found that DH was still a bit agitated so they were keeping him under a bit. I took the dog out and we got ready to head back.

I got a call that he was waking up but agitated. He kept fighting with the nurses on the day of the week. He kept saying it was Monday, even though it was Tuesday. Surprise, surprise. The calendar on the wall hadn’t been changed. It still read Monday. No wonder that’s what he thought!

We stayed all day, though nurses, techs, doctor visits and such. He was in ICU so was monitored very well. DH was quite confused and repeated himself a lot. He wasn’t quite sure what had happened.

Wednesday, January 30. DH had been moved from ICU into a regular room and we had to follow visiting hours, even though we were family. We could visit at 11 and had to leave at 1, then back for 6-8. Actually, this worked out well since I was able to take my first nap since this whole ordeal began.

DH had called DS early in the morning and said he “needed” his cell phone to make some work calls. Luckily, DS talked him out of that, saying that he could say some wrong things, given his temporary memory issues. Thank goodness! I didn’t want him spending his days talking on the phone.

We got there about 10:45am and they still wouldn’t let us in due to “flu season”. I’m not sure how we could give him the flu in those 15 minutes before official visiting hours.

I glanced at the whiteboard on the wall where the nurses’ names, doctor’s name and such were written. Unfortunately, no one had changed this whiteboard since Monday, so that’s what it still said. <sigh>

We visited – DH got to eat a bit and had started having lines removed. He thought he might put his shorts on so went into the bathroom to do that. Unfortunately, he managed to pull the IV out of his hand and bled quite a bit. The nurse sent him back to bed and said no more of that!

A representative from the group Mended Hearts stopped by with information and a heart-shaped pillow. They have meetings the first Saturday of the month, so we might go to some of those.

The first pastor dropped by again and we made plans for Friday to pick up DH’s car which was still at the ER. No one else I know could get it – it’s a standard shift car.

Not much else – visiting, napping, improvements every day.

Finally, it’s not Monday! Nowhere, nohow. Just Thursday, January 31 after 4 days of Monday. Hooray!

DS had a headache so I went to the hospital alone. He was going to come for the nighttime visiting hours. As it happened, DH came home this day after lots of testing, last minute X-Ray, discharge notes, complaints about the night nurse…

We got home about 5:00PM. Yea!

Now the real work began – visiting nurses, medications, doctor visits, rehab.

Since it’s no longer Monday, this post is over 🙂

Whew! There was a lot more after the surgery – visiting nurses, cardiac rehab, so on and on.

I am hugely thankful for my pastors, friends, family, people who brought us dinners, all the doctors, nurses, surgeons, visiting nurses, rehab personal, Mended Hearts, ambulance folks, aspirin, nitroglycerin, insurance, Fair Oaks Hospital, Fairfax Hospital, everyone involved in any way with this escapade.

Giving Thanks, Day 15: November 1, 2017

Posted on November 1, 2017 by MaryO

From http://www.maryo.co/giving-thanks-day-15-november-1-2017/

I hope I’m not jinxing myself but today I am thankful that I haven’t had any migraines for a while.

It’s not “just” not having migraines, but the fact that, should I get one, there’s nothing I can do about them anymore.

I used to get migraines quite often, a hormone thing probably. I spent lots of hours in a completely dark room, blocking out sound, trying to keep my head from pounding.

There was a long period of time that I had a migraine 6 days out of the week for several weeks. By accident, a friend asked me on a Monday if I had one that day and that started me thinking – why do I have them every day except Mondays? I figured out that it wasn’t a migraine at all but an allergy headache – I was allergic to the bath oil I was using Monday-Saturday. I gave that to my Mom and those headaches went away.

I still often get allergy headaches. Since my Cushing’s transsphenoidal pituitary surgery, I can’t smell things very well and I often don’t know if there’s a scent that is going to trigger an allergic reaction. In church and elsewhere, my Mom will be my “Royal Sniffer” and if someone is wearing perfume or something scented, she’ll let me know and we’ll move to a new location.

There’s a double whammy here – since my kidney cancer surgery, my doctor won’t let me take NSAIDs, aspirin, Tylenol, any of the meds that might help a headache go away. If I absolutely MUST take something, it has to be a small amount of Tylenol only. My only hope would be that coffee from Day Thirteen. And that’s definitely not usually enough to get rid of one of these monsters.

So, I am very thankful that, for the moment, I am headache/migraine free!

Perioperative Systemic Therapy for Kidney Cancer: Current Data and Ongoing Trials

Posted on June 9, 2017 by MaryO

Chicago, IL (UroToday.com) Dr. Uzzo gave the third and final talk in this excellent session highlighting systemic therapy in the management of kidney cancer. Focusing specifically on the role of perioperative systemic therapy (neoadjuvant [NAC] and adjuvant [AC]), he adeptly covered the prior literature and the future directions of this important intersection between surgery and systemic therapy. While his talk was extensive, below we will review the major highlights and key points.

Ultimately, in Dr. Uzzo’s eyes, we are all managers of health care risk. We seek to “understand, predict and prevent future health care events.” As such, from the time of diagnosis, the key steps in managing a patient are: identify risk (screening, etc), utilize risk tools to risk stratify, communicate this risk to the patient, and finally, mitigate risk with intervention.

Looking at biomarkers in the kidney cancer space, he highlights the key point that biomarkers have been few and far between for RCC. At the end of the day, commonly used biomarkers such as stage, grade, and histology still remain the standards for risk stratification. While numerous biomarkers (genetic, epigenetic, etc) have been evaluated, none have been demonstrated to be superior to stage, grade and histology. As biomarkers have failed to improve upon these factors, we also looked to different models to help stratify patients. In the localized RCC disease space, these include the UISS, MSKCC, SSIGN, and Mayo clinical models (among others) to predict recurrence, but the C-index for these tests ranged between 0.76-0.89. However, all the models shared common features that are easily identified clinically – stage, grade, tumor size, performance status, presentation, age, gender, and coagulative necrosis. Models for metastatic RCC are even less capable of predicting cancer-specific mortality (C-indices ~0.6). At this point, biomarkers and models give way to common patient and pathologic characterizations for risk stratification.

Neoadjuvant Therapy (NAT)
Dr. Uzzo provided a very nice comparison of the “Halstedian” model and “Fisheresque” model of cancer progression. Dr. Halsted, a legend in oncologic surgery, believed in stepwise progression of disease from stage 1 -> stage 2 -> stage 3 -> stage 4, which supported utilization of adjuvant therapy rather than NAT. However, Dr. Fisher was a strong proponent of the idea that a subset of patients were likely metastatic at inception, which better supported the need for NAC.

When looking at NAT, there are some key questions:

1) Does it work? (does it shrink the tumor? Can it work as a “litmus test” prior to cytoreduction? Can it control distant disease?)
2) Is it safe?
3) Are there translational signals?

In terms of tumor shrinkage, based on retrospective series and phase II trials, it results in approximately 25% tumor volume reduction, with an objective response rate (ORR) in 30-40% of patients. So, if patients are referred for that indication, that is what a medical oncologist can cite to a surgeon. However, the implications of this are heavily surgeon dependent, and as Dr. Uzzo states, it is a “function of judgment and experience” – if they feel that this will allow for partial resection vs. radical nephrectomy, or make a non-operative patient operative, then it may be worthwhile to proceed. This is difficult to quantify in clinical studies, and selection bias is an unavoidable issue. In his review of NAT to facilitate partial nephrectomy (PNx), there were <200 cases amongst 7 series.1 Similarly, there have primarily only been case reports/series demonstrating tumor thrombus reduction (25-40%), but rarely does it change the level of thrombus without a concomitant risk of toxicity.

In terms of efficacy, he reviewed a few clinical trials of neoadjuvant targeted therapies, including pazopanib.2 While many of these had some tumor size reduction, they often had high rates of patients not making it to surgery due to adverse events. Importantly though, a significant portion did not make it to surgery due to progression of extrarenal disease. As such, he emphasizes that NAT may be utilized as a litmus test for patient response. Patients progressing on NAT likely wouldn’t have benefited from surgery anyway.

No biomarkers have correlated with ORR in NAT trials.

In summary, NAT is not in the guidelines, high quality guidelines are limited, and there is no long-term data. While newer therapies (cabozantinib, immune checkpoint blockage) may change management, clinical trials are the recommendation for now.

Three clinical trials in NAT space:
CARMENA – activated in 2009, still accruing but having difficulty. Testing the importance of surgery – comparing surgery + adjuvant sunitinib vs. sunitinib alone.
SURTIME – testing sequencing (sunitinib -> surgery vs. surgery -> sunitinib). While initially expecting 440 patients, they have modified study to accrue 98 patients (study closed). In data analysis phase now.
ADAPT – SUO CTC joint effort, they have accrued 713/1133 patients in 3 years. Tests sequencing, including the use of autologous dendritic cell immunotherapy and sunitinib.

Adjuvant Therapy (AT)
Recent publications on adjuvant trials have increased interest in this treatment option. However, there are still no approved ATs for RCC. Dr. Uzzo breaks down the history of AT in RCC into three time periods: the “dark ages”, the “middle ages” and “the future.”

In the “dark ages” of AT, numerous trials were done but it combined “ineffective surgery with completely ineffective systemic therapy.” None of them showed significant benefit, though many had significant flaws.3

More recently, we have come into the “middle ages”, where we utilize “ineffective surgery with more effective systemic therapy.” As is well known, S-TRAC4 and ASSURE5, presented conflicting results regarding disease-free survival outcomes in the adjuvant setting. Dr. Uzzo did highlight the key differences in the studies (only cT3-4 disease in S-TRAC, primarily clear-cell histology in S-TRAC) that may have contributed to the discrepancy. However, even when the clear-cell subset of the ASSURE cohort was analyzed, there was no DFS benefit. Two ongoing trials for whom results are pending are PROTECT (pazopanib) and SORCE (sorafenib). The PROTECT trial investigators should be presenting their results later in the meeting.

He very nicely looked at the role of adjuvant therapy in other malignancies (breast cancer, colorectal cancer, melanoma and GIST) and found DFS benefit to be 4-11% (modest), often times with significant monthly cost. As such, he makes a good point, that adjuvant therapy touted as standard of care in other malignancies doesn’t have as much of a benefit as we often put faith in.

Adjuvant therapy is only marginally effect because of
1) Poor timing and patient selection
2) Bad biology
3) Ineffective therapies

In RCC, based on prior literature regarding growth kinetics, tumor doubling time, and presentation of metastatic disease, micrometastases typically present as visible disease between 6-11 years later. Perhaps we are not giving systemic therapy at the right time?

So, while it has not been shown to be highly effective in RCC yet, he recommends:
1) Improving timing (using CTCs and biomarkers)
2) Attacking tumor stem cells (yet to be identified)
3) Attack less promiscuous upstream targets (balance toxicity for specificity)

The future is promising. The “New” Age hopes to combine “incompletely effective surgery with potentially more effective systemic therapy.” He cites two trials, the ECOG PROSPER trial (nivolumab) and the SUO-CTC INmotion trial (atezolizumab), as upcoming studies with novel therapies that may provide new standards.

Overall, in terms of perioperative systemic therapy for RCC, there are no approved options. However, clinical trials with more effective therapies and better patient selection represent the future.

Presented By: Robert G. Uzzo, MD, FACS, Fox Chase Cancer Center, Philadelphia, PA

Written By: Thenappan Chandrasekar, MD, Clinical Fellow, University of Toronto, Princess Margaret Cancer Centre
Twitter: @tchandra_uromd

at the 2017 ASCO Annual Meeting – June 2 – 6, 2017 – Chicago, Illinois, USA

From https://www.urotoday.com/conference-highlights/asco-2017/asco-2017-renal-cancer/96168-asco-2017-perioperative-systemic-therapy-for-kidney-cancer-current-data-and-ongoing-trials.html?utm_source=newsletter_4518&utm_medium=email&utm_campaign=asco-2017-day-2-highlights

Giving Thanks, Day 3

Posted on January 27, 2017 by MaryO

Adapted from http://www.maryo.co/giving-thanks-day-3/

Today I am hugely thankful that the last major issue we had here was in 2013 when Tom had his heart attack. That event caused me to start a whole new blog to post about our experiences.

Adapted from https://maryomedical.com/2013/02/08/the-beginning/