Hospitalized

Hi All,

It's been awhile, we held off doing a blog until after the holidays, then waited to be able to publish some good news, only to be caught off guard with a setback that we're still fighting back from.

We had a great Christmas, Andy felt well and was able to get out, around a bit. It was wonderful to spend time together as a family. Andy was last treated with chemo on 16 December, as he had a two week break until 30 December, his next scheduled scan.

On 29 December Andy had a port put in. The port is a catheter into his vein that has an access piece, under his skin, that can have needles put in to draw blood, provide contrast for scans, deliver chemo or other drugs. The procedure, while fairly regular, took a long time, and Andy's pain got the better of him. That combined with a low fever prevented him from being able to have chemo again on 30 December.

On 30 December we received mixed news. The latest chemo regimen was working against the liver, holding it stable, but had allowed some increased growth / additional metastases in his bones. The good news was that Andy was eligible for a clinical trial, called a Phase I or dose escalation trial, that would test two drugs in combination. The drugs are considered the next generation targeted therapeutics, aimed at his specific type of gene mutation (EGFR), much like the Tarceva he had been on. We scheduled a follow up appointment with DFCI the next Thursday 6 January. Over the weekend we all got together to watch the Penn State bowl game, although they lost we all had fun.

On 6 January we learned that Andy had a slot on the trial - he met the inclusion criteria. In order to start on the drugs however, he had to undergo a series of test to ascertain that he did not have something that would not allow him to go on the trial (the exclusion criteria). He would also have to undergo a two week washout period, to clear the remaining drugs in his system out, so he ceased the Tarceva on that day.

On Friday 7 January he started the qualifying process by attending three exams, to check his heart, brain and eyes. By the end of the day he was exhausted and the pain started building; he could not sleep that night and had a rough Saturday. After consultation with DFCI, Andy was admitted to Brigham & Women's hospital (connected to DFCI in Boston) to manage the pain.

Initially we expected, perhaps naively, that he would be out during the week, certainly by the weekend (to be able to watch the Pats, of course). We would wait until then, to let folks know, and hopefully learn about his next treatment. Life took us in a different direction however, and Andy is still hospitalized tonight.

He has been hospitalized for this time for several reasons. A scan on the Monday 10 January showed that a sarcoma, a tumor in his upper left buttocks, had grown and was impinging on his sciatic notch, causing pain and discomfort. The scan also showed a tumor that has developed on his lumbar 5 (L5) vertebrae. As a result, he has received 10 doses of radiation to these spots, in order to destroy the cancer cells and bring him some relief.

The other reason he has been hospitalized for so long, and continues to be, is to manage his pain. When he came in, he used Fentanyl patches for long acting, constant pain management and Oxycodone during the day, on a scheduled basis, to manage the pain.

The Brigham & Women's and DFCI Pain Management team shifted him from the oral medication that he was on to a patient controlled analgesia (PCA), a pump that delivers pain meds directly to him, via an IV in his port. The team started him on a drug that he had been on in April when he was hospitalized for the T6 tumor. After a few days it became clear, as the potency was ramped up, that his body no longer responded to the first pain medication. The team switched him to a second PCA delivered medicine, morphine, which was less potent but could be delivered in greater amounts. But by Thursday he could not take the pain, and the decision was made to make a switch in both his short term PCA meds and his long acting meds. This seemed to do the trick for a few days, but the combination of swelling from the radiation and the growth of the sarcoma overwhelmed him again this past week.

On Friday he received an epidural trial, an IV delivered to his spine, to test delivering the drugs directly to the spine, whether this would work and what level of drugs he needed. This has been effective so far, and is the best way of managing his pain, as it can deliver a more concentrated dose directly to the spinal column just above the large sarcoma. It has allowed him to get out of bed, to take short walks around his floor. It may also allow him to be considered for a clinical trial, as it will reduce the number of meds in his system.

Andy received his last dose of radiation yesterday, and today we met with an anesthesiologist and the pain team. He will have a device surgically implanted in his back on Thursday, to replace the epidural trial. This will have a reservoir that can be refilled through a similar manner that he would receive meds through his port, and can be programmed externally, so he won't need to have further surgery to adjust the meds. The tough part is that he will have to stay in the hospital for a longer period, to titrate the meds that are to be delivered. We are hoping that this will allow him to be more ambulatory and get him released sometime next week.

Andy is doing okay, good days and bad. He wants out as soon as possible, to have time at home, and to begin another treatment. He will have to wait through another washout period of a few weeks before starting either chemo or a clinical trial.

Andy has a private room, as do all of the patients on his floor / ward. He is visited daily by members of the pain team. He has had some visitors, and the family is taking turns, rotating through during the day; I typically have the AM, then Jen and sometimes Nicholas, then Dad, then Mom. He has a great medical team, the best he could ask for, and the nursing staff is great.

So - a quick change from being excited about starting in a very promising trial to a few weeks of real tough pain. Its taken a toll on everyone. We're hopeful, always hopeful. My friend Carol sent an email at the start of the year, titled New Year, New Hope - we are all hopeful that the epidural will allow him out, that he will get stronger, that the radiation will work and that he can start systemic treatment again soon.

Next steps are to get through the surgery on Thursday and recover, get out of the hospital and then go from there.

Thank you all for your good wishes, and keeping Andy in your thoughts and prayers. I'll update more, most likely over the weekend, to let you know how the procedure goes.

Tim