My son is thru-hiking the AT in honor of his fallen perfect friend

My son is thru-hiking the AT in honor of his fallen perfect friend

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Earlier this week our hometown newspaper published an article about my son Spencer who is thru-trekking the 2200 mile Appalachian Trail. Earlier this week I met him on the trail between Roanoke and Lexington Virginia. It was the first time I'd seen him since March 11, when I dropped him off at the southern terminus of the AT in Georgia. He's hiked about 900 miles to this point, and plans to finish by mid-August. I am in awe of my son's energy, enthusiasm, dedication, and ongoing efforts to help fight drug addiction.
Following is the text of the article; clink on the link to see the photos.

Great Falls Resident Hiking Appalachian Trail
Spencer Brothers is trekking the thousands of miles of historic trail in honor of his fallen ally.

By Ashley Simpson

The Appalachian Mountain Scenic Trail (AT), the longest path in the world exclusively for hikers, stretches 2,190 miles across 14 states in the eastern part of the United States from Georgia as much as Maine. Great Falls resident Spencer Brothers is currently trekking the thousands of miles of this historic trail in honor of his fallen ally, who lost a lengthy, deadly battle with drugs four years ago. As a recovering addict himself, Brothers is in the midst of a challenge that years ago, he never would have imagined himself taking on.

I started trekking the trail on March 11, so, Im about a month and a half into it, Brothers said. Its been going great to this point. I knew before I started that it would be hard, but its even more physically tricky than I ever thought it would be. Nonetheless, Im really enjoying it.

It may want to take Brothers about five and a half months to hike the entire trail. His first time trekking the AT, he planned his maiden voyage in memory of his overdue friend, Chris Atwood, who died in 2013. As Brothers ploughs ahead, hes also raising money for The Chris Atwood Foundation, a local organization situated by the Atwood family to deliver resources for substance disorders and to combat the stigma surrounding such dependency.

The biggest source of inspiration for me to take this on is to honor my friend Chris Atwood who died of a heroin overdose four years ago, in February 2014, Brothers said. Ive done some marathons and other races to honor him and to raise money for the charity that his family situated. This is bigger than that. It took a load more instruction, and a load more time obviously, being that Ill be trekking for more than five months. Its to honor Chris and to raise $21,000 or more for this awesome, important foundation that his family created. I set the goal of $21,000 because Chris lived until the age of 21, so Im hoping to raise a thousand dollars for every year he was alive.

Ginny Atwood Lovitt, Executive Director of The Chris Atwood Foundation, said that folks like Brothers are the backbone of this organization that her family started.

Spencers bravery and compassion for this trigger are unbelievable, Lovitt said. Most of the time it just leaves me speechless. The Chris Atwood Foundation is entirely funded by private donors so it's only through the efforts of folks like Spencer and our compassionate donors that we are able to do this work. What he is doing is not just serving to folks that otherwise might die, but it's in a means keeping my brother's memory alive and honoring the lives of all those we have lost to overdose.

The dollars that Brothers accumulates for The Chris Atwood Foundation are nowhere near the most important outcome of the mission, either.

Spencer is not just raising much needed funds to help folks with addiction, he's showing them just how incredible life may also be after addiction, Atwood said. He's showing them that day by day and little by little recovery permit you to achieve things you never thought you were capable of. It's our hope that Spencer's journey will defeat some of the stigma that folks have about addiction and recovery. We want his journey to bring this issue out into the open and show folks in our network and beyond that folks may also be really proud and open about their recovery if they want to and that they can use that to accomplish great things.

Despite Brothers taking the first step of his Appalachian Trail hike less than 10 days before the official start of spring, he has encountered snowstorms and several instances of hypothermia-inducing temperatures. Through both the expected and unforeseen hardships, Brothers said that he is confident that his resolve to conquer the trail will continue to overpower any notions of quitting as lengthy as he keeps his consciousness on the bigger picture.

Early on, I was just carrying too much for the sheer number of miles that I was doing day in and day journey, Brothers said. The pack that I carry everywhere started out really heavy. I was wondering if I was cut out for this, if I could actually do this. I was seriously brooding about giving up, but, I had been planning this for too lengthy and I was doing this for The Chris Atwood Foundation and for folk other than myself. In the starting, leaving the comforts of home was hard to adjust to but then it became the brand new normal. Theres just no means that Im going to give up unless I become physically unable to and that would take something completely out of my control.

IN ORDER TO STOP BROTHERS, the world would have got to present him with something truly catastrophic. Hes already found a means to put one foot in front of the other through physical conditions that many would believe insufferable, including early stages of hypothermia and an injury that has been known to prevent even professional athletes from accomplishing their goals.

I started out doing some pretty decent mileage, he said. Then, within a couple of weeks, I injured myself trying to do more than I was ready for. I strained my IT band, but I took a day of rest and I referred to as my sister who is a doctor to get her advice, and I ordered a support wrap. I decreased my mileage for a while to let the band heal. Since Ive gotten the wrap and Ive given my leg some time to heal, I now average about 20 miles a day consistently. The longest mile Ive done is 26 miles, which was just a few days ago.

Since Brothers struggled with drug dependency early on in his life, he is no stranger to overcoming challenges. In this sense, perhaps this part of his background gives him an edge on the AT.

While many folks may find it tricky to be alone, with just the sounds of nature and their recommendations to remind them that they are indeed still alive on Earth, Brothers said he appreciates this component of his extended solo trekking experience.

I get a whole lot of time for thinking, he said. But, thinking in a wilderness setting allows things to bubble to the surface that I wouldnt ordinarily place confidence in. There is something really healing about being out in the woods for a lengthy period of time. Im really growing from this.

While he spends the majority of his time on the trail alone, he said he does regularly encounter other folks.

I havent gone a single day without seeing folks yet, he said. During the day, since Im trekking at my own pace, Ill be alone, but, at an identical time, I run into and meet tons of folks in spurts, at different points on the trail.

In reality, throughout Brothers first weekend on the AT, fellow hikers literally helped lighten his load.

I stayed at a hostel my first weekend on the trail and found folks who helped me parent out which gear I could get rid of to lighten my back a little bit, he said. My pack started out at 47 pounds, and now it weighs around 35 pounds or less.

Although this is Brothers first extended trekking endeavor, it is nowhere near his first exposure to survival in the comprehensive outdoors. His first steps towards recovery years ago were actually at a program that he went to as a young consumer that first exposed him to trekking through the wilderness.

He said his background with addiction, treatment programs and thus, the woods is likely the reason the idea of the AT was so intriguing to him.

I struggled with drug addiction myself as a young consumer, along a myriad of other worries like low self-esteem and anger, Brothers said. My family sent me to two different treatment programs that did outdoor experience therapy. While my challenges didnt end with these wilderness programs, the programs help put me on the road to recovery. My experience with them exposure to the woods, and trekking and camping for lengthy periods of time planted the seeds for the inspiration to do a really significant hike like the Appalachian Trail.

Still, Brothers said the trekking he did through wilderness programs really cannot even compare to what hes doing now.

With the wilderness programs I did, we hiked and camped each day, but we averaged more like 6 or 7 miles a day, he said. Now, overall, Im averaging 15 to 20 miles each day. Its really tricky to stay motivated to keep up with that progress day in and day journey, especially with the physical damage that comes with it.

Now that hes accustomed to the rigor, Brothers said the majority of his each day really is trekking. Other than willing himself to push onward through varying elevations and, oftentimes fickle weather, he spends the the rest of each and each day getting ready basic meals, and then sleeping as much as possible to recharge for the following day. There are designated campsites, hostels and other shelters along the means specifically intended for AT hikers.

He added that he typically resupplies at grocery stores in towns surrounding the AT. Hell either get to the towns by getting off the trail and walking another mile or two, taking a shuttle, or he will hitchhike. Recently, he actually accepted a ride into a Southern Virginia town from a woman who happened to be a fellow Great Falls native.

LATER THIS MONTH, Brothers will reach a point close enough to home in order that his parents can pick him up and usher him back to their house in order that he can enjoy the comforts of home for a few days. Really, though, Brothers has planned this respite from the trail is in order that he can submit graduate school applications. And, when he gets back on the trail, his girlfriend will join him for the the rest of the hike, which will make his hike even more meaningful, and even symbolic.

Im so excited to have her on this journey with me, he said. Its actually been her dream to hike the AT since before I met her, so its wonderfully serendipitous that our journeys and dreams literally walk alongside each and every other.

In the meantime, Brothers said hes learning a lot about himself, and about life, as he treks onward on his own.

I definitely am learning patience on the trail, he said. Im also learning to trust myself. I see so many different hikers approaching the trail and pacing themselves in different ways. You have got to learn to be confident in following through with a plan that is best for you. Also, if I didnt know it before, I certainly know now that nothing worth doing is easy. Looking back on this experience, when its all done, Im going to be glad that it was hard. Itll make future struggles seem more surmountable.

As of now, Brothers has raised about a 3rd of his $21,000 goal for The Chris Atwood Foundation. A few folks have pledged a dollar for every mile he completes, including Chris Atwoods father.

Brothers is hoping for more donations both big and small as he puts himself nearer to his finish line at Maines Mount Katahdin. Even though he has limited entry to the World Wide Web and all of its convenient means for the mass communication of files on his mission, hes still spreading the phrase.

At every shelter, there is a log book for AT hikers to sign and to look at the words of hikers that reached that point before them. Ive been writing the fundraising files in there. Hopefully it will resonate with folks, and they will pass it on.

To read updates to his journey, visit his blog at https://spencersatblog.wordpress.com.

My mets are again

My mets are again

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This morning, Johns Hopkins MyChart published the interpretation by their radiologists of my CT scans at Kaiser of March 19. In my neck, the radiologists said that a "left supraclavicular lymph node demonstrates loss of sensible reniform shape, and is suspicious for metastasis." In my chest, "increased length of the enlarged left top paratracheal lymph node, which too can represent metastatic disease. Given the location between just various vessels, this would be difficult for percutaneous biopsy." It looks like my remission is over, and my mets are again.

I tend to be proactive and would decide on not to wait for my doctors, so I sent the following questions to my doctors at Hopkins, Kaiser, and NIH:

1. What would you set forward my next steps to be?
2. Does it make sense to do a biopsy of the left supraclavicular lymph node? If so, should that be a JHUH, Kaiser, or NIH?
three. What is the most productive type of genetic testing that will be done on the tissue to inform a higher therapy?
four. Should I go again on nivolumab immediately (either through the clincial trial or, since or not it's been approved, outside of the trial protocol), or await testing, or settle for as true with a novel therapy such as Dr. Apolo's cabo/nivo/ipi trial?
It looks like I'll have a period of uncertainty ahead.

MetsDay 498 – experiment consequences next week

MetsDay 498 - experiment consequences next week

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This morning (Friday Aug. 23) I received an email from Dr. Apolo's analysis nurse advising me that Dr. Apolo was on vacation this week. NIH policy is that solely a fitness care provider can focus on scan resultseasily, so I should expect a phone call or appointment next week. Jennifer and I have received many slightly tons of inquiries from family and pals relating the resultseasily — I intend to post the resultseasily an actual day I get them.
We're going to the lake this weekend for a low-key celebration of my 51st birthday. I wonder if I'll see #fifty two.

[Monday, Aug. 26: I basically realized I failed to push "post" earlier than leaving for the lake. Oops!]

Mets examined via PET; NIH discuss over with

Mets examined via PET; NIH discuss over with

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Last Tuesday, Dr. Hahn imperative that I get a PET scan to are making an effort to affirm if my enlarged nodes tremendously had been metastatic cancer, and if it turned into, to peer if I may get it biopsied. My Kaiser doctor agreed, put internal the order, and it turned into with out increase up scheduled for Thursday at Kaiser's Capitol Hill sector. As I drove into the city, I turned into reminded at how little I omit the utilization of in DC. I had an IV positioned and offered an injection of fluorodeoxyglucose, or FDG, this may be a radioactive tracer that cancer cells love. After the injection, the tech said I imperative to wait an hour for the FDG to drawn to any cancer cells, so he threat-free me with a hot blanket, reclined my chair, and turned off the dwindled. I with out increase up fell asleep. Eventually the tech woke me up, took me to the next room, laid me on the table and rolled me into the scanner. I would have fallen asleep again excluding I had to increase my fingers over my head. I may experience the magnets pulsing the cells of the two part of my body, and marveled in our technologies.The subsequent day I picked up a duplicate of my scan on CD, and saw that my tumor turned into FDG avid, confirming that that will likely be metastatic cancer.
On Friday, Kaiser's interventional radiology department is named and said that an IR had reviewed my CT and PET scans, and failed to copy on that my tumor may also maximum attainable be biopsied with a over the correct-fine quality needle aspiration (FNA) with out risking hurt to the either the surrounding nerve bundles, or the shut by making use of cluster of veins and arteries. IR alternatively referred me to at least one in every of Kaiser's typical surgeons to effort a biopsy the historic now not odd method — slicing me open and taking a look to slice out a paintings of the tumor. How very 1950's, I concept. Maybe I'll see if the IR's at NIH or Hopkins are as much as the quandary. (NIH did a FNA biopsy in a approximately sector to go back back in September 2014.)

Today I met with Dr. Andrea Apolo and her crew at the National Cancer Institute at NIH's Bethesda campus. (dwelling internal the DC sector does have its advantages.) I am fortunate that I met Dr. Apolo at a BCAN social gathering in April 2012, simply weeks after my cancer first went metastatic. She has been a competent supply of wisdom, 2nd evaluations, and consolation ever since. She has urged me into two medical trials at the equal time as maximum of the time in search of my maximum reliable pursuits. She is an example of the utmost reliable category of public servant.

Here is the list of questions and notes that I geared up for our meeting:

Data re recurrence of mBC after immuntherapy-triggered reaction?
How without doubt is it that this mBC is an bodily mutation as  than?
Will sequencing tumor tissue for neoantigens assist in cure preference? (PD ligand, CTLA-4 expression, HER2, infected TME, TSC1/2, the unique immune cytolytic gene signatures)
Kaiser IR is frightened of FNA. Can NIH do some other FNA? Or Betsy Plimack at Fox Chase https://clinicaltrials.gov/ct2/observe/NCT03291028
Does NIHs research of my historic pattern (9/5/14) updated any perception? (over the correct mutation burden, HER2+, PDL expression)
What are my maximum reliable cure selections?
Resume Nivolumab
Cabo/nivo/ipi https://clinicaltrials.gov/ct2/observe/NCT02496208
Enfortumab Vedotin (Nectin-4 expression; Trial EV-201) https://clinicaltrials.gov/ct2/observe/NCT03219333
PCV+Atezolizumab https://clinicaltrials.gov/ct2/observe/NCT03289962
Recommendations?
Timing

Dr. Apolo said that getting a tissue pattern by making use of approach of biopsy, then getting it sequenced, turned into the utmost reliable method to have in thoughts what turned into happening. They may compare it to my prematurely biopsy and take a look at whether it turned into an bodily mutation or in any respect new. She'll have the NIH IR's visible appeal at my scans and notice internal the pattern that they're prepared to are making an effort to do the biopsy. (She seemed horrified that Kaiser sought after to are making an effort to get to the tumor by making use of slicing me open.) She adopted that the mets grew at the equal time as I turned into off cure — I have now not had any nivolumab for about 18 months — and that there has been a probability that I would again reply to nivolumab. She moreover said that her cabo/nivo/ipi trial turned into designed for patients who had advanced at the equal time as on immunotherapy, so I failed to qualify for that trial. (Plus, the possibilities of issue outcome had been more beneficial than just nivolumab alone.) She typical how a bunch of patients who had lengthy prior off immunotherapy, then had a relapse, had again answered after they went to go back back on cure (even with the verifiable fact that the wisdom are still constrained.) Her suggestion turned into that, till the biopsy confirmed in any respect unpredicted, I ought to still resume nivolumab. She moreover said that it turned into now not urgent that I do so mechanically, as my mets gave the impression to be becoming specifically slowly.We parted along with her promising to get to go back back to me in a week or so. It turned into a over the correct-fine quality talk with.

I've had a bunch of time to copy on the news of the return of my cancer. I'm moderately surprised on how nonplussed I am. I've envisioned this shoe to drop for a bunch of time and now that it has, I've desperate that nothing has replaced. I had now not replaced my assumptions on how lengthy I would reside: I ought to still now not ought to still handle altered expectations, in view that method back I realized to enable go of any expectations. I maintain to reside one day at a time, giving by making use of motive why of God the two morning, and gratitude the two night time.

Mets Days 1015 Which MPDL320a trial

Mets Days 1015

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In my discussions this week with Dr. Apolo and Dr. Aragon-Ching, the MPDL3280a study that we were pondering was a Phase II single-arm trial (ClinicalTrials.gov Identifier NCT02108652), where all patients would receive the MPDL3280a immunotherapy drug. Both Drs. Apolo and Aragon-Ching understood that Georgetown's Lombardi Cancer Center was offering that trial; the two of them contacted Dr. Nancy Dawson on my behalf; and yesterday I was scheduled for an appointment with Dr. Dawson for next Tuesday.
I requested Dr. Dawson's research nurse to email correspondence me the clinical trial consent paperwork so I could review them and compile a listing of questions. This morning I begun reading at some stage in the 40 pages of facts, disclosures, warnings, and disclaimers, and was surprised to be told that the clinical trial that Geogetown was running was in fact a Phase III double-armed study comparing patients who received MPDL3280a to patients receiving a taxene-principally principally based chemotherapy (ClinicalTrials.gov Identifier NCT02302807). Half the patients in that trial will be randomized into the chemotherapy arm, and some other half in the MPDL3280a arm.

I have no interest in getting chemotherapy at present. Been there, done that, got the neuropathy to expose it. Maybe at some later portion, I'll get a platinum and taxene-principally principally based chemo, but only when my tumors are universal. The Phase III trial chemotherapy arm is only a single-drug regimen, even if some will be given vinflunine, and others would get either paclitaxel, or docetaxel. Strangely adequate, Georgetown's record of clinical trials for bladder cancer identifies the Phase II trial that I'm interested in, but does not incorporate the Phase III trial. I've sent an email correspondence to Dr. Dawson's research nurse attempting clarification, in view that I are not looking for to go down the path for randomization into the Phase III chemo arm. Of direction, if I randomized into the MPDL3280a arm, that will be simply advantageous. But if Georgetown also is doing the Phase II study, then I'd prefer enrolling in that instead of rolling the cube on randomization.

I did some more digging and saw that, anyway Georgetown, some other local medical center that is partaking in the Phase II MPDL3280a trial (where everyone gets the drug) is Fairfax Inova. The Phase II trial appears on their record of clinical trials. I recognised as Dr. Alexander Spira, who is heading that study, and spoke with his research nurse, who scheduled me for an appointment next Friday at 2 pm. So it looks like I'll be able between MPDL3280a trials.

Mets Days 768 – Little expansion on a remedy

Mets Days 768 - Little expansion on a remedy

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Today I met with my GW oncologist, Dr. Jeanny Aragon-Ching. I go in every couple of months for lab work, have my port flushed, and see what's new in the worldwide of metastatic bladder cancer. I asked her if there was any recent news or developments, and in particular whether there were any clinical trials that will be applicable to me. I additionally asked about a contemporary MD Anderson study (news article here) that reported that several bladder cancer mutations resembled breast cancer mutations.
Dr. Aragon-Ching was aware of the MD Anderson paper, and said that even more recent papers had dampened any short-term hope that metastatic bladder cancer might be as amenable to treatment as several breast cancers have been. She said that the ability to identify the sub-classification of bladder cancer was still preliminary, and there were no sufficiently powered studies as of yet showing that particular sub-types of bladder cancer responded better or worse than other sub-types. She added that there was still so a whole lot research to do, and not sufficient funding to do it.

We additionally spoke about clinical trials. She said that the most promising research was in regards to immunotherapy and inhibitors called PD-1 and PD-L1. The newest clinical trials require the patients to have measurable metastases larger than 1.5 cm in size — some thing I don't have. She said that she hoped that I would not get to the point of being eligible for such a trial, because such a metastasis would mean that my cancer is growing and spreading. I agreed that it was far better for my mets to be stable and not spread from my lymphatic system into my organs.

We additionally talked about my slow walk back to pre-ddMVAC chemo baseline. She advised that I slowly ramp up several classification of an exercise regimen to get back several of the stamina that was lost during last fall's chemo and recovery. I hope to do more racquet sports such as tennis or racquetball with my youngsters.

For now, I remain on the watchful waiting cycle. My next scan is in mid-July at NIH. Until then, the message remains to be glad about each day, sharing love and laughter with family and pals.

Mets Day 1168 Tenth Opdivo infusion & comprehensive response

Mets Day 1168

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Today I met with Dr. Hahn prior to getting my 10th infusion of nivolumab. We reviewed the CT scans, and he pulled up the images and confirmed me the nodes in my neck that 3 months in the past had been more than 3 times larger. Dr. Hahn said that the target nodes were now about the same size as regular nodes. The only reason they were paying any realization to them is because the doctors knew that they used to be the site of metastatic tumors. If a radiologist unfamiliar with my history and without access to my prior scans looked at my scans of last week, the radiologist most probably would no longer conclude that there was evidence of metastatic disease. Dr. Hahn added that there was no evidence of carcinoma anywhere else in my frame. In his view, I have had a whole response as a end result of my nivolumab treatments. Woo hoo!
Because we know that the nodes were the site of tumor cells, regardless of the reality, Dr. Hahn isn't willing to say that there is "no evidence of disease", or NED. He doesn't know whether there is any active cancer left in those nodes. He said it was possible that the tumors are thoroughly long past, or that any residue is inert. But it is additionally possible that the cancer is still present, but just no longer growing at the moment. And of path my cancer is systemic, and no longer confined to those lymph nodes that were actively growing. The hope is that the nivolumab has acted upon the cancer whereby ever it is, but it be too soon to say that it is eradicated. Only time will tell whether it inevitably is long past, or whether it is still lurking and are searching for a strategy to birth growing lower back.

At the Spring 2015 meeting of the American Association for Cancer Research (AACR), some papers were offered that noted that many cancers contained multiple mutations, yet most tumors were a end result of the active growth of a single mutation. The researchers theorized that cancer might be viewed as a line of mutations, with the dominant mutation growing fastest, and the other mutations biding their time. If a therapy just like chemo or immunotherapy kills the dominant mutation, a less dominant mutation might kick in and begin growing. In my case, it may be that my two option types of platinum-based chemo could have suppressed the mutation that led to my original tumors in my bladder. The PD-L1 mutation may then have kicked in, growing in my lymph nodes in my neck. The nivolumab seems to be to have acted on those tumors, prompting present day good news of a whole response. The questions now are (1) whether the effect of the nivolumab on the PD-L1 mutated tumors is permanent, or transient, and (2) whether every other one of my mutations will kick in and begin growing. Like I said, only time will tell.

For now, I'm going to bask in the sun of the pronouncement a whole response. I'm so grateful for this news. I believe it is an answer to the prayers of so many. Most prayers are answered in the kind of the movements of other americans, and I'm thankful for the movements of the doctors and other health care professionals who have made possible my access to this newly constructed drug. I'll continue with the nivolumab infusions, as data from the metastatic melanoma scientific trials suggests that continuing with the drug increases the odds that the tumors will no longer reappear.

After Dr. Hahn and I finished celebrating his pronouncement of a whole response (which took a couple of zero.5 2d), I asked him about the radiologist's observation that my thyroid cyst gave the impression to be slowly increasing in size. I told him how that cyst had been noted on my scans for moderately a while, and that everyone had ignored it. He said that it was highly unlikely to be cancerous, and even less most probably that it was related to my metastatic bladder cancer. But he said that I should have an ultrasound and biopsy done to ensure. He'll put in the orders and I'll schedule that up in a wiser month or two.

I additionally asked him about the small pulmonary cysts noted in the chest scan, and whether they were related to my pulmonary embolisms of last fall. He said that they were no longer, but were as an alternative residual scar tissue from old viral infections. The radiologist felt obligated to comment on them, but they were nothing to worry about. My 10th infusion of nivolmab was unmarkable – my port is working just satisfactory, and every little thing went like clockwork (albeit a slow clock).

I've decided that I'm going to drop the "Mets Day xxxx" count from the title of my blog posts. I know that I've still got mets BC, but I'm hoping that I can now focus on getting to five years with no evidence of disease. If and when I hit that mark in the summer of 2020, then perhaps I can consider myself to be cured. That's a long shot, but it be nice to think about. Maybe I'll replace the mets day count with "CR", or possibly I'll just drop the entire counting thing.

I'm mulling on what I should do to have fun my CR. Maybe I'll buy every other Harley. I sold my hog last spring after understanding that I'd ridden it less than 100 miles in 2 years, and thinking that I'd most probably given up riding for good. Hope rides a Harley. Humm, I like that.

Mets Day 1163 Today’s CT test holding steady

Mets Day 1163 Today's CT test holding steady

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This morning I drove up to Baltimore for one other CT scan. My clinical trial protocol requires a CT every six weeks. Today's scan was the fastest yet: I was in and out in not up to 45 minutes. This evening JHUH posted the results for my neck. The radiologist wrote:

There is a left stage 5 A lymph node measuring 1.three by 0.6 cm, unchanged compared to prior exam. Additional right stage 5 lymph node is identified on series 2 slice 58 measuring 0.7 by 0.6 cm , also unchanged compared to prior exam. Previously seen target left stage 5 (slice 79, series 2) and stage four (slice 90, series 2) nodes and additional small scattered nodes are not significantly modified. No additional enlarged neck lymphadenopathy is identified by dimension criteria.
It's good news that my tumors have not increased in dimension. But the fact that they did not further curb makes my wonder if the nivolumab has had the most effect. I guess I'm spoiled after my last two scans showed a 50% reduction, then a 25% reduction, respectively. My next infusion is in every week; I'll ask Dr. Hahn for his ideas then.
The results for my torso and abdominal CT scans have not been posted. I assume they'll prove up in the next day or so. I'm not expecting anything significant there, for the reason that prior scans have seen nothing remarkable.

Unrelated to my melanoma is the fact that I have a thyroid nodule that is slowly starting to be in dimension. It's been noted in my CT scans since 2011. Today's scan measured it at 1.9 cm. If it were to grow most more, it's going to have an effect on my ability to breathe or swallow. But so far it has been so low on the list of matters to fear about that I've ignored it. I intend to proceed doing so.

Mets Day 1156 Ninth Opdivo infusion

Mets Day 1156

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I reluctantly flew back home on Tuesday night, leaving a crying Rose who did not want "Bampa" to go. I'd so enjoyed the time that I'd been in a position to spend with her, with the exception of with Lily, and Chelsea and Josh. But my next infusion was scheduled for Thursday, and in some ways my life depended upon my getting home.
While I was in Utah, we learned that our lake house had sustained severe damage in consequence of water damage and subsequent mold. For reasons no one can explain, the water filter in the fridge developed a crack, letting water cascade through the fridge and out the lowest, where it spread across the first ground with the exception of seeping across the basement. The carpets across the house were soaked, with the exception of the upholstered furniture, and every surface was coated with mold. The house interior will ought to be gutted down to the studs, dried, and treated until it is certified to be mold-free, then rebuilt. All the furnishings will be trashed. Fortunately, the entire payments will be covered by our homeowner's insurance; State Farm already has agreed to develop coverage, and remediation is underway. I'm driving down there tomorrow to meet with the claim adjuster and assignment supervisor. I guess this means that we won't be in a position to use our house this summer, nonetheless after it's done, we'll possibly put it on the market as essentially be getting a brand new house. It's too bad we didn't get round to selling it before this occurred, nonetheless we'll maintain it.

If that wasn't enough, while I was in Utah another water leak started in our Great Falls house. The toilet supply line valve in one of the upstairs bathrooms started leaking, staining the kitchen ceiling. My homes are like my neobladder, I've determined. I should count on unexpected leaks. Jennifer close off the toilet water line and further it to my honey-do list. It's good to have a purpose in life.

After I landed at 1 am yesterday morning, I got about a hours of sleep, then went to the downtown DC Labcorp for my blood paintings. (I went downtown because I needed to make my monthly visual appeal at my law firm, and assumed that the Labcorp was staffed by competent people.) I came upon the lab receptionist to be deeply engrossed in a conversation with another employee – something about how all men were jerks – and kept me waiting for about 15 minutes before acknowledging my existence. She demanded for my doctor's orders and huffed when I said that they were already in their components. She wearily dragged her arms six inches to the keyboard and glared on the monitor, occasionally stabbing on the mouse. When she located my orders, I asked her to confirm that the lab would be in a position to do the blood paintings that day, as the orders were marked "stat". She stared at me as if I had a enormous zit on the end of my nose, then without looking on the monitor said that my orders were not marked stat. I explained that I knew that they were, as they were standing orders, and I had gone to other Labcorp places on the same orders with no issues. She stared at me again, then summoned her fellow employee to look on the screen. No, said man-hater number two (somewhat glancing on the screen), she could not see "stat" in the orders. They could draw my blood, they said, nonetheless it would not be analyzed for many of days. Realizing that there was nothing I could do persuade these good people in otherwise, and not eager to topic my veins to vicarious revenge on behalf of women everywhere, I determined at I would just seem to be early to Hopkins to have my blood drawn by people with a semblance of professionality. Moral: never again go to the Labcorp location at 1145 nineteenth Street NW.

The downside was that I needed to fight my manner through rush hour traffic this morning, with it taking two hours as a substitute of the usually hour to get to Hopkins. The horror! Fortunately, my port directly gave a return, and the blood draws were transient. Unfortunately, the Hopkins lab was backed up, and so I needed to wait an extra two and a half hours for my nivolumab dose to be compounded on the pharmacy.

Meanwhile, I met with Dr. Hahn. He announced me to another doctor who was visiting JHUH, and called me the "poster child" for the nivolumab clinical trial. I thought of the "Save The Children" posters and thought his description was spot-on. I asked what new things he learned at ASCO about the durability of nivolumab on metastatic urothelial carcinoma. He said that no new data had been published specifically on that point. There was newer data on nivolumab on metastatic melanoma, which showed that the survival curves that had been published last November were essentially unchanged. Dr. Hahn said that he expected that the survival curves to be similar for patients with metastatic bladder cancer, i.e., of the 60% or so of patients that had an overall response, about half might be expected to have a durable response lasting for several years. But accruing that data will take some time, especially since nivolumab was first administered to mets BC patients less than twelve months in the past. But the recent sea change in how doctors are now classifying cancers (by genetic type as a substitute of location) means that the data from metastatic melanoma patients and non small cell lung cancer patients can be more readily utilized to urothelial cancer patients like myself.

Dr. Hahn further that, with regard to durability, data would accrue as patients getting nivolumab stopped getting doses, then restarted when their cancer started growing again. He said that the trial sponsor had been granting permission to some patients to "go on holiday" from therapy, with the certainty that they would go back on if their cancer came back. Now that the drug has been accredited by the FDA for melanoma and NSCLC, more patients would be getting shorter doses of the drug (possibly as a result of cost worries), and that data would ship insight as to both how long I want to get having a bet this drug, and how long the influence will last. Good news, I guess, nonetheless I have little interest in discontinuing the trial prematurely. The plan is that I will continue to get my infusions every other week for quite some time – maybe into 2017.

Dr. Hahn also talked about how the next exciting region of research was using combination therapy, such as GemCis chemo and immunotherapy, on the same time. He also mentioned how there were so many genetic mutations that we did not yet know how to treat, and expected that more immunotherapy drugs would be developed to target the damage done by those mutations. I could sense his enthusiasm and excitement at those future developments.

At 3 pm, the pharmacy finally sent up my nivolumab, and the stuff was pumped into my physique. By 4:15 I was out the door, just in time to sit in rush hour traffic out of Baltimore and on the beltway on the manner home. I am richly blessed.

Mets Day 1151 My spouse’s church speak on service and caregiving

Mets Day 1151

Image source: http://cdn.sportsmemorabilia.com/sports-product-image/david-wright-mets-allstar-psadna-signed-11×14-photo1151-t902917-1600.jpg

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