More No News…   March 28th, 2012

From Linda

I offered to write the blog entry as Jake is feeling quite fatigued from his ipi infusion yesterday. We both thought getting a quick note out now would relieve any anxiety out there and take the stress off Jake to get out another blog entry.

On Monday, Jake had a follow-up appointment with Dr. Kim at Mass. Eye and Ear to take another look at the spot on the retina of his right eye. We are happy to report that absolutely no changes per the doctor and therefore she confirms her previous suspicion that it is just a nevi and not related in any way to the melanoma. Yeah! Next appointment in six months.

On Tuesday, we had a very early appointment, 8:30am, with Dr. Sullivan as the  usual prelude to the ipi infusion. We had a bit of difficulty getting Jake’s IV put in at the same time as his bloodwork was drawn but it all worked out in the end after a few extra trips in the elevator to get the right person to do it. Dr. Sullivan thought Jake’s palpable tumor seemed a bit spongy which might or might not be a good sign. We can only wait and see how that goes.

Dr. Sullivan also reviewed the results of the brain MRI from last week. He indicated that the inflammation was reduced since the last scan (just prior to his hospital stay) with most mets appearing to be unchanged (we were not expecting any changes). He was going to check with Jake’s other doctors but at this point, he thinks the Steriod should continue at its current level. Jake appears to be making progress with his eating and recovery which he felt was a positive.

Jake is now scheduled for a neck to knee PET/CT scan on April 18th, followed by a meeting with Dr. Flaherty on April 23rd. This scan is the typical follow up for the 4 dose ipi treatment. Dr. Sullivan indicated that we may see no changes on the scans (or even a bit worse) compared to before treatment as it may be too early for results. If this is the case, we will need to wait another 6 weeks (with no more infusions or specific treatments) for another follow-up scan which puts us into the beginning of June.

As I mentioned at the start, Jake is feeling quite tired but suffering no major side effects from the ipi so we are glad about that. We are giving him lots of time to rest as well as trying to keep his food intake up. Of course, it doesn’t help that we are having typical March weather in Boston this week, so I drove Jake to his appointments rather than walking in the cold, windy air.

So once again, no news is good news. Plans continue for our move to Chester, NH in mid-April.

 

Today marks the one-year anniversary of the diagnosis of my malignant melanoma cancer. I was standing in the kitchen of my mother-law’s house in NH, answering the telephone, surprised the call was actually for me. It was the dermatologist’s office advising me that my mole’s biopsy results were not very good, and that I had a deadly form of cancer. That news in turn led to the contents of this blog, and my current health issues. Stubbornness on my part also contributed, as did unexpectedly difficult to cure aggressive brain mets.

I have been doing quite a bit of Physical Therapy to help rebuild my strength and weight (I am down to 170 pounds – 55 pounds below normal).

Tomorrow I have a brain MRI scheduled at MGH Chelsea, to see if I can cut back on my steroid intake. I then head over with Krystyana to the Boston Museum of Science to test out my new Lytro light-field camera at the live gecko exhibit.

My MRI results will be reviewed with me on Tuesday, after which I spend the morning getting my last of four ipilimumbab infusions – so far, no negative or positive results from the ipi (a.k.a. Yervoy) treatments.

We are still working on move coordination for the weekend of April 13th and hope to contact our growing list of volunteers this weekend
with more details.

We also learned today that my melanoma buddy Bill H. just had his melanona upgraded from Stage IIIA to a Stage IIIC/IV today meaning it had metastasized. Our love and support to you and Jodi, Bill. Melanoma is a real bitch.

 

Still Moving…   March 9th, 2012

It was a beautiful day in Boston yesterday, not only because of the summer temperatures, but also because I was emancipated for the day. I got to spend the day getting Spa treatments to help heal my bruised and battered body. The reflexology I had was divine and I’m looking forward to when I can schedule myself for another similar treatment. Sadly, the air temperatures are now dropping again to wintertime norms, but are due to pick up and get warmer next week.

Our moving plans are still on – namely to finish packing the apartment on Friday, April 13, and then use a large U-Haul freight truck rented by Linda’s cousin Jeff in New Hampshire to cart all of our boxes, possessions and furniture up to Chester, New Hampshire. We have the freight elevator in our apartment building reserved from 1 PM to 5 PM on the 14th. Moving stuff around down in the garage where the freight elevator touches down is not the simplest of things, so we would expect to actually start physically moving things around by about noon time. We don’t believe we need to any extra vehicles to help us transport anything as the large U-Haul truck should be sufficient for all of our goods here in Boston, but we will more than likely need help loading the truck in Boston and unloading in Chester New Hampshire. We will also have a friend visiting from Holland joining us who will not have a vehicle of his own. And it’s likely that I will personally be next to useless in the move because my ability to lift things is severely restricted at this time. If you think you might be able to help us with the packing (dismantling Ikea Swedish torture ware) on Friday night and the actual move on Saturday, please send us an e-mail with your contact information. We will know how many people we have signed up on Saturday for the donut run.

On the personal health front, I had my third infusion of ipi two days ago and based on how slowly ipi works, there is no way to tell if the drug is having an impact in my system yet. This is why I have cautioned all friends and family to be aware that no news is good news. Which is also why, this is the first post in the last several weeks that I’ve made. Furthermore I don’t have the ability to be easily type without lots of spelling mistakes so I use dictation software to assist me with the process which makes responding to people’s e-mail very, very challenging and tedious. For example, it took me nearly 4 weeks to clear out my backlog of five weeks of e-mail, and I hesitate to jinx myself by saying that I am now caught up, after my hospital stay four weeks ago. If there were bad news of any sort then Linda could be counted upon to make a posting on the blog and if I was well enough I would do it myself, And failing that Krystyana could make the post it as well.

At the ipi appointment, Dr. Flaherty indicated that he would be like to have another brain MRI done to see if the swelling has gone down enough to reduce the steroid dosage. The MRI should take place in the next week or two but we don’t have a schedule yet. The doctor also noted my newly white eyebrows. He said that was a good sign that the ipi was working because it is affecting pigmentation which is also melanocytes.

I have been getting physical therapy from a visiting nurse several times per week to help strengthen my muscles which are in sore need of it. That has involved graduating from a walker to a cane within the apartment. Linda and Krystyana take turns leading me through my exercises a couple times per day.

Jake at dinner on Friday, March 9, 2012

Jake at dinner on Friday, March 9, 2012

 

Back in The Saddle Again (sort of)   February 17th, 2012

So, after entering the hospital via the emergency room on Tuesday, February 7th, via the emergency room to wait for an in patient bed, I had been out of hospital since Valentine’s Day. Interestingly my hospital stay diagnosis listed my condition as “failure to thrive” (which is a condition typically associated with infants and small children). In my case, the problem was that despite the best efforts of my wife I was unable to get myself to consume food, and thus not getting enough nutrition. How ironic that a foodie like me (http://www.foodiemoment.com) could almost die of starvation? And part of the reason for that was the swelling of the brain tumors that formed after my brain radiation in December. It’s definitely good to be back in my own space after being in the hospital, the private room I had was very nice, but not very restful. I am now under the daily visitation of a nurse from the hospital to make sure that my various statistics and vitals stay within range. One of the things that has gotten me back on board again was the consumption of a broad spectrum steroid to reduce the swelling in the brain, and one of the side effects is an increased appetite.

One of the things that I learned while I was in the hospital, was that a personal hero of mine Mike duGruy, had died in a tragic helicopter crash. Mike and I and Linda had spent hours at past conferences, discussing his exploits, like his being in the middle of a swarm of killer whales beaching themselves to capture seals, when he realized he was also wearing black neoprene, looking like a big seal himself, and Mike’s incredible cephalopod video footage, has been an inspiration. It was an honor to have known him – more about Mike can be found here: http://www.independent.com/news/2012/feb/15/mike-degruy-1951-2012/ and http://mikedegruy.com/

 

A Little Better Each Day   February 10th, 2012

From Linda…
Still in the hospital and doing better, Jake’s energy level has improved. He ate some food at each meal and even requested something for me to bring to him for breakfast tomorrow morning. He has also asked for us to make a Dim Sum take-out run to Chinatown; positive interest in food is a good sign. His strength is improving as well. He was tested by the PT folks on his level of coordination combined with strength. At this point in his recovery, they determined that he requires 24 hour supervision and the huge differences in our sizes – 1 foot in height and 70 pounds in weight – makes this too difficult for me to handle alone which again is another reason for remaining in the hospital for now. The PT folks at MGH will continue to work with Jake in the hospital getting him more mobile and confident as his energy and strength return.

We also spoke to Dr. Flaherty and we are still a go on Jake’s second dose of Ipi scheduled for next week.

 

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Quick Update   February 8th, 2012

From Linda…

We have met with Dr Flaherty as well as Dr Curry today (and it felt like a half dozen other drs). Currently, brain surgery is off the table.

Jake is doing better and has regained some strength. He did eat some today which is much better than the last several days. They are still trying to figure out the reason for the low blood levels. A scan of his abdomen showed no problems there.

The kids came over to visit for an hour or two and both remarked how much better he looked and how more responsive he was than just yesterday. Of course, it probably helped Jake to get their hugs as well :-)

I read your posts and emails to Jake today as well. Thanks for the encouragement and support.

 

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Jake in the hospital   February 7th, 2012

From Linda…

Jake had been feeling dizzy, weak, and fatigued last week. Over the weekend, it became a big problem and we began a fast and furious email conversation with all his doctors at MGH. They decided to push his brain MRI to Monday morning to see if anything there was causing problems. This morning we had an in-person consult with the radiation oncologist, Dr. Oh. He saw some minimal changes on the scans but wasn’t expecting the ipi to have done much at just 1.5 weeks in any case. He did take notice of Jake’s weakened condition and decided to admit him to the hospital to get him started on various medications to help with his energy level, his non-existent appetite (my major frustration and concern), and get further consults from the brain surgeon that we had met with in January.

So Jake and I spent much of the day waiting in the ER until finally getting admitted to the hospital about 5pm today. Jake was in the ER so they could start the hydrating IVs and medications as well as doing lots of tests rather than waiting for a room.

Jake is in the good hands of the Lunder 9 staff at MGH. So far we know he was dehydrated and had low red blood levels enough to get some whole blood units which he is getting right now. Tomorrow, we should be meeting with the doctor about possible brain surgery.

Jake also wanted to let everyone know that he decided to withdrawal from his classes since he felt unable to concentrate well and was having problems typing.

 

 

 

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We are now proud owners of a new vehicle a 2008 Jeep Liberty – a model of Jeep Cherokee – which we purchased last Friday thanks to the help of our friend Denise Kacavas help companies cut of us and her brother-in-law Jim who runs a dealership – Allen Mello Dodge Jeep – in Nashua, New Hampshire Jim sent a driver down to pick us up in Boston and Marvin – a sales guy at the dealership helped us figure out what vehicle we wanted as we wanted to also get get four-wheel drive and lots of legroom in the back seats for our tall teens.

After we found the vehicle we wanted Jim even bought us lunch. Thank you Denise, Jim and Marvin and everyone else who offered help and advice with our car purchase.

A number of you had offered to help us move from Boston to Chester once we knew the appropriate dates, well, we now have those dates our plan is to now disassemble all of our IKEA furniture on Friday, April 13th, and move all of our stuff out between 1 and 5 PM on Saturday, April 14th we already have the freight elevator in our apartment building reserved for the move-out and are hoping to convince Linda’s father to drive a U-Haul truck to and from Chester (we plan on having a convoy up to Chester (with boxes in all the extra vehicles and furniture parts in the U-Haul truck) For those of you who have already volunteered to assist us please drop us a note if you can join us on either of these dates. Thanks!

Doug & Erin – We will glad accept those empty boxes you offered us yesterday.

In other updates – I am not experiencing any treatment side effects from the ipilimumab (and if they appear it won’t be for another 10 days, but I am still feeling extreme fatigue, a poor appetite and itchy skin from my radiation treatments and very itchy skin from the same. One other life change I am pursuing is the resumption of my course work for my MFA in Photography with the Academy of Art University in San Francisco – I have committed to taking two courses this semester – classes started today.

 

After a brief meeting with my oncologist this afternoon to go over what to look out for with respect to the side effects of ipilimumab – skin rashes and gastric issues – so we could let the hospital know that it’s happening.

The doctor said that the soonest I might experience the rash (the most likely side-effect) would be about two weeks from now.

My newly found cousin Carolynne who is also on ipi as part of a clinical trial says that after her initial four doses she had no side effects. I got to see her today because she had an appointment with my oncologist directly following my appointment, and she and her husband Mark came to visit us in the waiting room of the infusion center

The infusion of the ipi took place in Mass General’s Yawkey Outpatient Center on the 8th floor (one floor below where my oncologist holds his consultations. The infusion center is also where chemotherapy patients get their chemo treatments – each infusion area includes a TV and several chairs for guests, as well a chair designed much like a La-Z-Boy but not nearly as comfortable (for the patient).

This combination can create raucous neighbors as we discovered today. The guy visiting the patient in the infusion area to my right spoke loudly about everything, and seemed to be a know-it-all about every subject. Noise canceling headphones along with a music source are coming with us for the next infusion in three weeks to help drown out adjacent conversations and televisions.

We learned that the ipi infusion process takes over two hours as the nurses first have the hospital pharmacy prepare the ipilimumab infusion (267 ml for me based on height 6’2″ and weight (195 pounds clothed) – which takes about 45 minutes. The infusion is administered via IV (intravenously) over a 90 minute period along with time spent in the waiting room we spent about two and a half hours waiting to complete the first infusion of ipi.

The next excitement comes about on Friday afternoon when we go shopping for a used vehicle to use while we are living in the house in Chester. If anyone has good suggestions on how to not get ripped off by used car salesmen, let us know.

The next medical treatment takes place in the form of a Brain MRI on February 9th – a week before the second infusion of ipi and I may have another set of body scans a few weeks later (between the second and third ipi infusions) which may impact a booked trip home to Bonaire in the middle of March – the results of the scans would be more important than going back to Bonaire for a couple of weeks, I figure.

 

Treatment Start in Sight   January 22nd, 2012

I got word last Wednesday morning from my most excellent oncology nurse Ellen that all hurdles with my insurance company had been surmounted. And after going to the hospital to get blood drawn for reference values, I learned that I would be meeting with my oncologist next Wednesday for a final consult to precede my first injection of ipilimumab, also set for next Wednesday afternoon.

One thing I failed to mention in last week’s downer of a blog post was that one purpose of ipi is to set the brakes free on one’s white blood cells to allow them to better fight infection. Considering many of my existing white blood cells are TIL cells design to target my tumors, the ipilimumab should have a positive impact on slowing the growth of my melanoma. Not looking forward to the itchy skin side effect as I already have very itchy skin from both the radiation treatments I have gone through. My next ipi injection will be three weeks from Wednesday, and I have a Brain MRI scheduled on February 9th to see if my brain tumors are shrinking from the ipi. If shrinkage occurs, I will get to avoid brain surgery to remove a tumor in my right temple (which has been leading to small seizures on the left side of my body) and another tumor located on my cerebellum back of the head at the top of the spinal column. If there is tumor shrinkage due to the ipi – it should manifest itself after the first or second injection I won’t know until after my consult on Wednesday how often I will need to get CT or PET scans. My newly found distant cousin Carolynne has suggested that since we share similar genetics that ipi should work well for me, because it has done so for her. And since it boosts the effectiveness of TIL cells, that’s another variable in the tumor-fighting equation.

One practical impact this latest development has on future plans is that the 12 weeks of treatment will prevent us from moving back to Bonaire in April as we had hoped we coud do as of a few weeks ago. Instead, to conserve resources we will be moving into a house owned by Linda’s family in Chester, NH, not far from where we used to live in Derry, NH before moving to Bonaire in 1997.