News Update from Roni

Roni writing, as I'm the one not currently taking pain meds. Kev's working on a new, more reflective, blog entry to be posted in a day or two, so stay tuned.

First the good news. No more panic attacks, thank G-d. We credit prayer and a change in medication schedule. Though when we last met with the pain specialist, he wasn't sure that med fluctuations had that much to do with it, so thanks for the prayers!

Many of you have already heard that because of the increased pain that Kevin had, along with some other symptoms, the docs decided to do a PET scan a month early to see what was going on. Turns out that the new site of pain was from a broken rib! We don't know how it happened, but are guessing that past treatments and/or a sedentary life have left Kevin with brittle bones? As far as what the scan showed about success of macrobeads, When Dr. Smith (doc running the trial) told us the PET scan results, he said he saw a "mixed result", as there were new nodules, but also a tumor had disappeared.

Then last week, while in for blood work, Kevin spoke with Dr. Berman, one of the other doctors working on the macrobead trial. Despite what Dr. Smith had said previously, Dr. Berman indicated that the disease was progressing, and suggested we schedule a consult with Kevin's oncologist, Dr. Alyson Ocean.

We saw Dr. Ocean today, and the bottom line is she said that while Dr. Smith may have a bias towards optimism, the test results indicate that the macrobeads are not working, and the disease is progressing with new nodules and significant growth of one of the tumors. She spoke to us about Kevin's remaining options, basically a review of what she spelled out prior to Kevin's decision to try the macrobeads. If we understood correctly, viable choices boil down to 2 levels of drug therapy or no treatment at all. Kevin has not been a candidate for more surgery since his last surgery with Dr. Loggie. None of the remaining options are curative. Basically, Kevin has a difficult choice to make between:

1. Treating with drug combo Irinotecan + erbitux. This is the most aggressive therapy that Dr. Ocean thinks Kevin is strong enough to tolerate. He has not yet had either drug, so there's no way of knowing if/how he would respond. Response rate (i.e. shrinking tumors or stopping tumor growth) is in the low-20s percentile, with an average life extension of 6 months for those who respond; on average, the drug ceases being effective after 6 months. Most usual side affects are stomach cramps and diarrhea, itchy rash and fatigue. Mouth sores and flu-like achiness have also been reported. There are other drugs that can be taken to help minimize some of the side affects. The challenge would be to find the dose that is effective in treating the tumors without the side affects being too severe.

2. Treating with erbitux only. When effective, this has the same 6-month result as the combo above, but when used alone it is effective only about 11% of the time. Side affects however are much less severe -- mainly the itchy rash and diarrhea. Kevin could opt to try this, and add irinotecan later, if erbitux is found to be affective and tolerated.

3. No treatment -- only palliative care. Rate of expected disease progression not known (especially in Kevin's atypical response to the disease), but life expectancy is months, rather than years. Symptoms (currently pain) could stay the same for some time, or worsen at any time.

Treating Pros -- if effective,
- tumors could shrink, thus reducing pain, thus reducing level of pain meds needed (which have their own side affects/quality of life issues). So net result could be improved quality of life, or at least maintaining current level
- could extend life for 6 months or more

Treating Cons
- odds are greater for not working than for working
- if drug is not effective, side affects would make quality of life worse

In the meantime, Dr. Ocean gave Kevin a prescription for an anti-depressant, he just needs to check with his pain specialist to make sure of no negative interactions with what he's already taking. He may also explore physical therapy to see if strengthening/stretching exercises could relieve some of his muscle pain and/or give him more energy. And we got the name of a licensed social worker that Kevin can talk to, plus a nutritionist that I can consult with.

And we continue to pray. I'm encouraged that Dr. Ocean said that the signet ring cells are still not acting completely like they usually do, in that growth has been less aggressive. Thank God for that, and for the fact that He has given wisdom and guidance every time there's been a decision to make. And we also remember that Kevin has had considerably better outcomes in the past than expected.

Life is still lived one day at a time, and fresh from the reflections of Yom Kippur, we are more determined than ever to make the most of each day. Today I took a vacation day for the first day of Sukkot -- a Biblical sabbath, and we had beautiful weather. After we got back from the doctor's, we enjoyed lunch out in our sukkah on the balcony, Kevin took Elke to the dog park, I got a little rest, and I helped Kevin work on edits to his next post. That's lot's to be grateful for and enjoy.

This coming Saturday evening we are helping to host a progressive Sukkot dinner for our congregation's members and some of their/our friends. First course is at our place, with 30-40 people coming to fill our home with love and laughter. Then we move onto two other Beth El member's homes in the neighborhood. We're looking forward to good food, good music and good company.

Back to the decision Kevin faces. We'd love to hear experiences from fellow PMPers who have been on either drug therapy described above. And as always, we appreciate the prayers of so many who follow our journey. Please pray for wisdom and clarity for Kevin, as he makes this difficult decision. And while you're praying, a miracle would be most welcome.

Roni

P.S. Dr. Ocean, when you read this, send me an email if I got any of the facts wrong!