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We had wonderful visits from Rob’s mom and sister (they left on Monday) and then from his oldest friend Stephen. Unfortunately, Stephen got more than he bargained for when we had to take Rob to the ER on Tuesday night after he developed an uncontrollable cough, high fever, low oxygen level, and subsequently very low blood pressure. This happened after the three of us had a lovely afternoon outing in Sonoma, but by the time we returned home Rob was extremely tired and had started coughing more than normal. Finally at about 11:30pm, when his temp was 102.5 F and even extra codeine wouldn’t quiet the cough, we drove to the Kaiser San Francisco ER. They found that Rob was very dehydrated and his blood pressure was dangerously low. After six hours in the ER, five liters of fluids, some IV antibiotics, lots of blood tests, and a chest x-ray, Rob was admitted into the ICU for observation and more antibiotics. They kept him there until his blood pressure returned to normal, and at about 5pm yesterday he was finally moved to a private room on the sixth floor. Stephen and I took turns sleeping, eating, and quizzing the hospital staff, but came home last night for some much needed sleep.
We returned to the hospital this morning to find that Rob won’t be discharged until tomorrow at the earliest — he spiked a fever over the night, and the docs want to make sure that he’s fever-free before he’s released. Of course Rob is threatening to escape from the asylum! It’s hard to get any rest when they wake him up every four hours to take his blood pressure and temperature, not to mention the 5am blood draws.
Surprisingly, there was some good news — we learned that all but one of Rob’s liver function tests are back in the normal range! Does this mean the criz is working? We’ll know for certain after the next CT scan which is scheduled for November 3rd.
Stephen flew back home to Massachusetts today, and we thank him profusely for everything he did for us during his visit. What an amazing friend!
Rob’s recent blog entry inadvertently triggered an avalanche of wonderful emails, and we thank everyone who wrote. More than once, I’ve caught him with tears in his eyes as he contemplates the wonderful words and sentiments expressed. It’s an emotional time, but I’m happy to report that we are still on the roller coaster, with lots of highs and lows, happiness and sorrow, fear and optimism.
Yesterday was a good example. We spent most of the afternoon at Kaiser, meeting with Dr. Liu, then a social worker named Carol, getting a flu shot, and picking up more drugs. The news was mixed.
Getting the bad news out of the way first, the brain MRI found a few small spots of cancer in Rob’s brain, though we have caught them at what appears to be an early stage. This is not uncommon in lung cancer, and the drugs, including criz do not readily cross the blood/brain barrier, so some type of radiation treatment is the norm. We’re now waiting to see if it is feasible to ‘Cyberknife’ (an advanced non-invasive robotic radiosurgery process) these spots, or if ‘whole brain’ radiation is necessary. The latter is a longer and harsher treatment that involves hair and memory loss, and is an option that frankly may not be worth it. Rob has no symptoms from the brain metastases (mets) yet (headaches, blurred vision, slurred speech), and we are hoping the Cyberknife option works out.
For the good news — Rob is showing more signs that the criz is having a positive impact. He seems to have a little more energy every day, and he’s also more mentally alert. His blood counts are completely normal and the liver function tests are better although still well above normal — but the trend is in the right direction. Rob’s blood oxygen level has improved enough that Dr. Liu recommends spending less time hooked to the ‘iron lung’, and his cough is almost completely gone except at the end of the day or when he is especially tired. On the whole, Dr. Liu thinks Rob is doing better than he was two weeks ago before he started criz.
That’s all for now. Marge and Marnie will be here later today — time to be a good daughter/sister-in-law and clean up the house!
“So we beat on, boats against the current, borne back ceaselessly into the past.” – F. Scott Fitzgerald (1896 – 1940)
Rob here. The good news is that I’m still around, grateful for every day.
The bad news – and there’s no way to sugarcoat this – is that I am firmly in the cancer’s crosshairs now, and I am going downhill. The criz may be doing a little something (my most recent blood test shows some improvement and my cough is better on the whole), but it could be a case of wishful thinking. Despite it all, we continue to fight. Last week, we met with a radiation oncologist about possible radiation therapy to open the airways where the tumor is growing, and tabled that option since the likely side effect is a cough. I already have one of those and don’t need to have it worsen! I had a brain MRI on Saturday, which will tell us if the disease has spread there, as it often does. We’ll discuss that and everything else tomorrow with Dr. Liu.
I’m not in any pain, though occasionally the emotional aspect of this little drama overwhelms me. I am very gaunt now, 158 pounds this morning, and can’t eat or drink enough to gain weight. (The cancer is eating everything I put in there – it’s a pig, as Dr. Jahan once said.) I don’t have any energy (a result of the significant amount of disease in my liver), and spend half the day dozing and daydreaming. I am tethered to an oxygen machine, which makes breathing easier, and my orbit is now limited mainly to the top floor of the house. I’m also slower mentally, and even something as easy as an email or a blog entry is becoming an effort. Hard to believe several months ago I was rambling around on Mt. Tam and out sailing on the Bay – when cancer pounces, it can be a quick downhill spiral.
But life – or whatever you call this suspended state – is not all bad. In the last weeks, we’ve enjoyed seeing my sister Marnie, and many old friends – Rob and Meg Campbell from Connecticut, the McNamara sisters (Moira and Kathy) from the East Coast, Dee Smith and wife Joc from Annapolis, and my Latitude brother in arms John Riise and his wife Katy from Lake Isabella. My mother and sister are coming back on Wednesday for another visit, and a few other out-of-town friends are coming after that. However, other then the inner, inner circle, I’m not really up for seeing friends – hope everyone understands.
We continue to find something good in each day, and take pleasure in simple things. We received a really special treat a few days ago from Dan and Susie Woolery, owners of Soozal. Dan sent over his personal masseuse, who gave Leslie and me each a 1.5-hour massage! It was my first professional massage, and I enjoyed it immensely! Leslie continues to pamper me with good food and drink, and has been a pillar of strength and wisdom throughout this ordeal.
The adventure continues…
It’s 10:30pm and we just returned from a two-day trip LA . It’s normally only a 6 to 6.5 hour drive, unless there’s a construction delay or accident – but today it took more than 8 hours to get home thanks to a big rig crash on the ‘grapevine’. We were already a bit numb from the results of Rob’s CT scan, so as much as we wanted to be home, we just crept along, wondering what lay ahead. Yes, as we expected, but still weren’t prepared for, the CT scan showed progression in both the lung and liver. But in addition, there is now fluid in Rob’s lungs and abdomen (known as a pleural effusion), caused by the disease progression to the lining of the lung. So what does all this mean? We’re not really sure yet, but it’s not good. Clearly the AUY922 trial was not a success for Rob, hopefully the scientists saw more benefit.
We see Dr. Liu on Friday to discuss next options which include the possibility of more chemo, going back to Xalkori (crizotinib which is now FDA approved), or another clinical trial. Timing is everything since it’s been two weeks since Rob’s last infusion and there’s reason to believe that the cancer is growing more rapidly than before. We have more questions than answers right now, but we’ll keep you informed as we have new information.
I wish we could say we are optimistic about Rob’s response to AUY922, but from our perspective it’s not looking good. This past week has been especially difficult — Rob’s cough continued to worsen, he’s been extremely fatigued, and the initial visual disturbances have become more severe (his vision has dimmed so he feels like he’s wearing dark sunglasses all the time, making night vision nearly impossible). This is the worst he has felt since starting his lung cancer treatments. The only positive note is that his weight has been stable despite his lack of appetite. Yesterday, after traveling to UCLA, the decision was made to have him skip this week’s treatment, giving his body a chance to recover from the side effects. We are hopeful that he will start to feel better (and see better) over the next few days.
Next week is a big one. On Wednesday Rob will have his 6-week CT scan, which will let us know whether or not the drug is working. In the meantime I’ve been working on the ‘what’s next’ scenarios. Should the scan show progression (which is what we expect given the cough), we are hopeful that Rob can join the Novartis LDK378 trial at Mass General in October. Like crizotinib, LDK378 targets the EML4/ALK translocation, but in the lab it looks like it may be an even better ALK inhibitor than crizotinib. There are two main hurdles for getting into the trial: 1) an open slot in the trial (they are very limited); and 2) getting Kaiser to refer Rob into a Phase I trial. In the past Rob’s Kaiser doc said that they would not refer anyone into a Phase I trial since few people have a good therapeutic response in Phase I studies. However, with new targeted therapies, even Phase I trials can provide significant therapeutic effect, so we are hopeful that they will come through for us on this one.
Wednesday was a long day — up at 4 a.m. to make a 7 a.m. flight from SFO to LAX — home at 10 p.m. This was Rob’s fourth week on AUY922, and he had a full day of blood work, ECGs, an appointment with Dr. Garon, and a PET scan. We left for LA feeling somewhat discouraged — Rob’s cough has been more persistent than ever, he’s been very fatigued and keeping weight on has been a problem partly due to a lack of appetite. However, we left feeling more optimistic thanks to Dr. G.’s explanations. First, he told us that the cough isn’t necessarily a barometer for cancer progression — weight loss and pain are better indicators. Good news, since Rob has no pain, and his weight seems to have stabilized despite his lack of appetite. He now has a prescription for Marinol (synthetic THC) to boost his appetite as well as a prescription for medical marijuana that he’s been reluctant to use. As for the fatigue, it’s hard to determine where it’s coming from — it could be the AUY922, the codeine he takes for the cough, or the cancer.
However, Rob was encouraged to continue to stay active, and continue to hike, bike and sail, even if less vigorously. He went for a short walk yesterday, and is going out with Hank momentarily on the trawler to watch the Big Boat Series. Just holding on out there when it is blowing 20+ against an ebb is a form of exercise! However, it’s bittersweet for him to just watch, as he loves the regatta after sailing in it about 20 times. Rob was able to join Hank and the rest of the Yucca crew for the Jazz Cup last weekend. He was exhausted when I picked him up in Benicia, but it was great for him to be out on the water with great friends.
The downwind Jazz Cup is the perfect race for Yucca.
I sat at the end of the Pinole Pier with my long lens and watched them go by well ahead of their competition.They handily won their division and were 14th overall in a fleet of 101 boats.
We won’t have any empirical evidence as to whether or not AUY922 is working until Rob’s next CT scan in two weeks. The PET scan was required by the trial protocol for research purposes and is unlikely to provide definitive information about progression. So once again we’re playing the waiting game, which is always stressful. My job these days is to keep Rob interested in eating, and I’ve been developing all sorts of new high calorie, high protein smoothies and other healthy food. We even had steak and potatoes last night!! Of course I seem to be gaining the weight Rob has lost…
Sorry about the long delay between postings. The last two weeks have been a blur, but things are almost back to the ‘new normal’ now.
Our trip to New England was, as always, too quick – but it is starting to look like we’ll be spending a lot of time there later this summer. The primary reason for our trip was to consult with Dr. Lecia Sequist at MGH about ‘Plan E’, i.e., drug options when my current chemo, Gemzar, is deemed ineffective. Leslie explained the results of that meeting in the previous blog post, and nothing much has changed since then. Unfortunately, I’m still coughing a lot — which may mean we’ll be back in New England sooner rather than later.
We almost always always fly on Southwest Airlines into Providence’s Green Airport, which gets my vote for the coolest airport in the country. It’s small, the lines are short, there are two Dunkin’ Donuts (yuck!), and — best of all — there is a cool Mount Gay 30 sailboat, rigged and going upwind on port tack, permanently on display in the lobby. It’s a fitting welcome to the ‘Ocean State.’ Marnie and Scott live about ten minutes away in Cranston, RI, so we started and ended our trip there, also as usual. We enjoyed seeing both my niece Katherine, who just graduated from Brown that weekend, and nephew Philip, also a recent Brown alum. Philip has been working in NYC for the last two years, but will be moving to Washington, DC, this fall to attend Georgetown Law School. Katherine, a Literary Arts major (writing, journalism…), is looking for a job, and we don’t envy her that task in this economy. They’re both terrific young adults, and we are all very proud of them!
Rob and the Young family - Marnie, Katherine, Scott, and Philip - all redheads and Brown grads!
We also stayed at three other excellent B&B’s during the week — my Mom’s house in Mystic, CT; the Barn in Fayston, VT (my sister’s ski cabin); and Stephen’s ‘farm’ in Leverett, MA. New England is green and lush at this time of year, as well as humid and buggy. Leslie is still covered with black-fly bites, while I went unmolested — apparently they don’t like people on chemo? One other place we visited — Northampton, MA, where Stephen’s girlfriend Betsy lives — is worth mentioning. We ate several meals on the main drag there and decided that Northampton, home of Smith College, has got to be one of the people-watching centers of the universe. We felt old and almost out of place there, as none of us sports tattoos, dreadlocks, piercings, combat boots, purple hair, etc.
Marnie, Rob, and Scott at the now overgrown beaver pond - Fayston, VT.
The New England Peace Pagoda - Leverett, MA.
We’ve been home for almost a week now, and in that time I have had seven needles jabbed in me for various reasons, including a gigantic one for my liver biospy. That tissue is back at MGH by now, undergoing genetic sequencing to find out how the cancer has mutated in the last 19 months (funny to think that part of me got on a plane and went back East without the rest of me!). I’ve also had another round of chemo, without the fever this time, and been back to Stanford for my one-month post-criz follow-up visit with Dr. Wakelee. I’ll miss going to Stanford, which was more of a resort than a hospital — but it’s on to Harvard now!
We’ve also seen a lot of friends lately, including the ‘PV People’ for lunch at our house on Sunday. Mike and Lowe, Pam and Mark, and Lou and Laura all have deep connections to Puerto Vallarta and all know each other from down there. Mike, one of the original Yucca crew, and Lowe are full-time residents, while Pam and Mark, who Leslie met on a dive trip in the Solomon Islands years ago, split their time between the Bay Area and their house in PV. Both couples have been incredibly generous over the years in letting us crash with them down there! Lou and Laura, who sold me their orange Santana 20 Urban Guerilla back in 1980, have been cruising and racing their Beneteau 42 Cirque in Mexico each winter for the last three years, using PV as their base. It was a great afternoon with old friends, filled with laughter and stories.
Mark, Rob, Leslie, Mike, Lowe, Laura, and Lou (Pam is behind the camera).
We had a good visit to Stanford last Thursday, although it always takes way longer than we expect. There’s not really much news — after three weeks on the criz, Rob is doing well, although he was instructed to take it easy on his re-twisted ankle (no hikes for a week or so). However, there has been some news over the past month about crizotinib. Specifically, Pfizer received Fast Track status from the FDA for its New Drug Application (NDA). The Cancer Grace blog provides a good summary of the latest criz biz – including the closure of the Phase III trial that Rob was initially enrolled in. Now, everyone with an ALK rearrangement will be put into the Phase II trial and receive the drug. This is really an indication of how fast things are moving — only about 10 weeks ago Rob was randomly assigned to the control arm of the Phase III trial, and received docetaxel along with all its side effects.
Of course, none of this changes anything for Rob — he will continue to get the criz as long as it proves effective. He appears to be coughing less and less, so we are hopeful that the tumor is once again shrinking. Time will tell.
Not much new from the cancer-fighting trenches. Rob’s cough is persisting, which is worrisome, and he has been taking daily naps, but otherwise he is holding up well. The Neulasta shot – which was shockingly expensive (nearly $6,000 for one shot — thankfully insurance covered it!) – caused Rob’s bones and joints to ache for a few days, but that seems to be over. We are mostly working on getting the condo ready to rent (paint, carpet, etc.), reading books and watching Netflix movies, and staying warm and dry. We’re also avoiding crowds and germs as Rob approaches the nadir of his 21-day chemo cycle – he didn’t enjoy his recent hospital stay enough to repeat it anytime soon.
It’s great to be home for awhile, but our thoughts keep drifting back to Lopez. We were on the island six times this year, once a month starting back in May. Rob spent a total of 82 days there, and I was there slightly less – it was a wonderful summer.
Looking south at the Olympic Mountains.
The last trip — which now seems like light years ago — was a quick one in the first week of November, mostly to close up the yurt for the season. It was damp most days, and mushrooms were blooming everywhere! It was also somewhat chilly at night, and the days were short, but Lawrence Elk proved up to the task of heating the yurt to a comfortable 70+ degrees in all weather. A nice highlight was a visit from our friend Jason, formerly of the Bitter End YC, the Aleenta Resort in Thailand and now working in Vancouver, BC. Jason brought along Tabitha, his well-traveled Thai beach dog, but his fiancée Katie couldn’t make it – she was delivering a Swan 100 from Maine to the Virgin Islands. Nice!
Jason, Rob, and Tabitha at the end of Spencer Spit.
In between rain showers, there were some gorgeous days for kayaking and hiking. We enjoyed the slower pace of the island, which seemed empty compared to the summer months. It was a pleasure to walk to the end of Spencer Spit, a popular state park that is closed for the winter, and not see anyone! The three of us also were the only clients in the Love Dog Café, our current favorite Lopez restaurant, on a Friday night during what should have been ‘rush hour’– the island is a ghost town now.
Rob got in as much kayaking as possible during this trip.
Rob and Jason (I was in the front of Steve's double).
A beautiful little cove where we stopped for lunch and hot tea.
Hiking with Kathryn, Steve and Rob.
Mushrooms were everywhere! Shaggy ones...
Tiny ones...
Strange ones...
Lopez is a wonderful, calm, healing place, but for now the days are too short and cold to enjoy living in the yurt. Sure, we could make fires, drink tea, read books, and go for short walks – but those are all things we can do just as easily in Mill Valley. We’ll get back up there again starting in March or April, but in the meantime, if we go anywhere, it will be someplace warm and sunny!
No electricity, no water, but it's warm and cozy!
We enjoyed a nice Thanksgiving last Thursday, spending the day hiking and picnicking at Abbott’s Lagoon in Point Reyes with John and Jo Ann. We found many snowy plovers, an endangered species, among 80-some other birds that John, our resident expert, logged. We retired to our house at dark for a fire and a wonderful stuffed portobello mushroom vegetarian dinner (this recipe is highly recommended) with all the trimmings. This weekend, Leslie cooked a small turkey and stuffing, so we had Thanksgiving twice!
Thanksgiving Day at Abbott's Lagoon.
Rob and Leslie
The endangered Snowy Plover
Snowy Plover.
Sandpipers trying to keep their feet dry.
Jo Ann, John, and Rob
After a pleasant weekend, we spent a full day at Stanford yesterday, where Rob had another round of blood tests (normal), an appointment with Dr. Wakelee (routine), and his second round of chemo (so far, so good). After the neutropenia incident, the trial protocol mandated a reduction in the dosage of docetaxel, so hopefully the side effects will be reduced and he will avoid more visits to the ER. Additionally, to bolster his white count / immune system function, he will be getting a shot of the white blood cell booster Neulasta, tomorrow.
Rob’s cough has been returning, which we hope isn’t associated with the tumor being on the move again. In three weeks, he will have another CT scan, which will tell us whether he has had a response from the docetaxel. He is also shedding his hair rapidly now, and we’re on the verge of shaving it all off. To prepare for hair-loss, Rob received a cool Brown University knit beanie from Marnie and Scott, with a note that stated, “While you are getting your PhD in Grim Reality from Stanford, I hope you will always remember where you got your BA in Happiness.” The hat is starting to come in handy!
Enough medical news for now — things are under control, and Rob is getting the best care possible. We are thankful that we live in a sophisticated area with great medical resources — otherwise we would be traveling constantly to faraway hospitals. We are also very, very thankful for our families and friends who have supported us in so many ways over the past year!
