November 28, 2012

To quickly update those of you who haven't yet heard...Ken's last MRI was a little off schedule. Due to hurricane Sandy, we were unable to get into the city for his 4-week MRI. We had to reschedule, then actually ended up having the MRI done locally, and sending it in to be read at Sloan-Kettering, which was a lengthier process. The day before Thanksgiving we did get a call from one of the Doctors (Ken's usual doctor was out of town) saying that the spot they had been watching had, in fact, grown. Today, we did go into New York and met with Dr. Mellinghoff and were able to go over the scans. In brief, the cancer has returned. Currently, it is very small...about the size of a pea. The change from last month is not dramatic, but there is growth. So, as we had all previously discussed, we are likely going to try another clinical trial. Dr. Mellinghoff is going to forward the latest scan to Dr. Wen at Dana Farber, as we are very interested in a clinical trial there involving GDC-0084. Trials open and close at different institutions all the time, so he is also consulting with colleagues at Columbia, NYU, and Yale to see what else is available that may be fitting for Ken's situation. Beyond that, there is the option of Avastin + radiation, and also at some point he will seek the involvement of Dr. Gutin to discuss surgical intervention. The good news is that because it is still so small we do have some time to explore options. We should know more about the available trials next week. While we knew that the cancer would return, we had really hoped that it wouldn't be this soon. We are, of course, so saddened and upset...but we are also so grateful for the support of our friends and family. Despite this setback we really look forward to enjoying the holiday season with each other, our children and those who mean most to us. I will post more next week when we have further details.

October 5th, 2012

Ken was originally scheduled for his MRI next Tuesday; however, MSKCC called last night and was able to squeeze him in today before the long weekend...so it was a big scramble to arrange child care and get into the city today, but well worth the effort! The new spot on his brain has NOT changed in the last month! This is good news in that there is still a chance that the spot may, in fact, be scar tissue and not new growth. They are going to repeat the MRI in one month to again monitor any growth. In the meantime, Dr. M. is going to send the scan to Dr. Wen at Dana Farber, and consult with him on Ken's eligibility for the clinical trials that he is working on. Even though the spot remains small, and we are unsure of its nature, Dr. M. prefers to be proactive and "nip it in the bud" if it is something. It looks like another month of waiting for answers, but overall a much better day than I had been preparing myself for!

September 7, 2012

Today Ken went in for his two month follow up MRI. The news was not bad; but not good, either. There seems to be a small spot, in the same vicinity as the previous tumors. The spot is so small (only a few millimeters) that it is unclear if it is in fact a new growth, or just a "shadow" on the scan (or even, possibly, the result of some scar tissue). The Doctor wants to watch this very closely, and do another MRI in four weeks. So now we wait...

July 2012/Dana Farber

This past Friday, July 6, Ken had an MRI and Neuro Exam with Dr. Mellinghoff at Sloan Kettering. We are happy to report that the MRI again was clear; no changes since surgery. So, the issue at hand (and the thing that Dr. M. says is "keeping him up at night") is what to do next. The standard (and what Ken did with his original tumor) is to "consolidate" treatments, and follow surgery with Chemo and Radiation. For this reccurrence, Ken has had the surgery, then took part in a clinical trial...but now what? we could try more chemo & radiation, or another trial, or simply do nothing until the tumor rears its ugly head again. Basically, Ken & Dr. M had chosen the latter approach, but upon further consideration, Dr. M. suggested we go see his colleague at Dana Farber in Boston. The purpose is to check out the clinical trials available at Dana Farber at this time, as well as get another opinion on our current course of action. Also, Dr. M. felt that our visit would "put us on the books" there, so if in the future Dana Farber can offer us a treatment that Sloan Kettering can't, Ken will already be established there as a patient. So yesterday we went off to Boston, to visit with Dr. Patrick Wen. I will attempt to make a brief synopsis of our visit...again, I am not a doctor so I am only relaying things to the best of my understanding...in a "nutshell": There are currently 3 clinical trials underway at Dana Farber that are open, and pertain to Grade 3 Astrocytomas. Unfortunately (or, actually, fortunately) Ken does not qualify for any of them at this time, due to the fact that he has no active tumor present at this time. While there are always cancer cells in his brain which will eventually re-form into another tumor, there is currently no visible tumor to work with. So Ken is in the very good position of not needing to really do anything until there is a change in his MRI. Dr. Wen seems to concur with Dr. M. that right now it is more beneficial to let Ken heal, and get stronger and that it may actually be detrimental to start him on chemo (such as Temodar) again because a) his tumor did not respond to treatment in February and b) it may render him ineligible for certain future treatments. Of the three trials that are currently open, the first two are Phase II trials. The first is a mollecular drug + Avastin, which may block angiogenesis (they are thought to cut off the tumor's blood supply) and may affect tumor stem cells. The Avastin blocks the blood vessels, but the tumor eventually builds up a resistance...so the second trial involves a drug that is used instead of Avastin, and is thought to block that resistance. The third trial is a drug that is thought to actually block the mollecular pathway (P13 Kinase inhibitor)? This shows promise, but is still in phase I,, which is the dosing phase. So they are still working on reaching an effective yet tolerable dose, which means that if Ken were to actually start now, he may be getting a lower dose of the drug that may not be as effective as later in the trial when they reach higher doses. However, this drug is made specifically for brain tumors so it is made to actually penetrate the brain, which most other drugs are specifically made not to do. There is also a timing issue, because they are operating the trial along with other institutions, and are only allowed 3 patients at a time when it is their "turn" to add people. So they would have to have an opening available at the exact time that Ken qualifies for it. There is SO MUCH more to it that was discussed, but this was the gist of it. Dr. Wen also concurred with Dr. M. that Ken should not be driving at this time, which is of course, a major blow for Ken. He is so sick of tagging along with me everywhere (he clearly does not find Target as exciting as I do) and is eager for some freedom. Also, Dr. Wen does feel that in his experience these tumors do get a little stronger each time, and another recurrence, while it could take years, is more likely to happen in months, not years. We are all hopeful, though, that the clinical trial that Ken participated in may have done something to prevent that from happening. Only time will tell...

June 8, 2012

I know that it has been quite a while since my last post...seems like forever! To quickly bring everyone up to date...Ken tried continuing the trial on a reduced dosage, but the side effects remained just too much to handle...he had lost 26 pounds in 6 weeks...he had two different rashes, mouth ulcers, and several GI issues...We had been to multiple specialists and two trips to the ER...so in the beginning of May, he officially dropped out of the trial. The past month has been spent recovering...Ken has been getting steadily better as the drugs have left his system...and he is pretty much back to his old self...walking steadily and feeling pretty healthy. Today he had an MRI, which showed no change over his last one a month ago...so no growth. At this point there are no other clinical trials that he is eligible for, and his Dr. feels that further treatment is not warrented until the next reccurrence. So they will monitor him carefully with an MRI in one month, and if there continues to be no change, bimonthly from there forward. Next MRI is scheduled for July 6. I will probably update again after his next MRI...until then I hope everyone has a great month and is enjoying the start of summer!

Friday, April 20, 2012

Ken has recovered remarkably during his "break" from the trial. The ulcers in his mouth are almost entirely healed, and the one bad one in his throat, although still there, has improved quite a bit. His liver function has almost returned to normal. The rash has improved, although he does have a new, slightly different rash as well. He has been able to eat and drink this week, and has gained back a couple of pounds. They did perform an ultrasound on his liver today, just to be cautious, but I haven't heard the results yet. Today's discussion centered on whether or not to continue on with the clinical trial, or pursue other options ( which are somewhat limited at this point). Ken's Doctor feels that there is still a benefit to continuing on the trial. There is always the possibility of going back on the Temodar; however, the tumor did not respond favorably to the cycle of Temodar that Ken did in February. There is also still the option of Avastin plus radiation. The doctors suggested decreasing the dosage of the trial drug, in an effort to assuage the side effects. The dose Ken had been on previously was the highest dose yet in the trial, and clearly was not well tolerated. Dr. M. suggested trying the reduced dose for a week, while maintaining the drug regimen that he has been using to heal the mouth ulcers, in hopes of preventing new sores from coming back. If after a week the side effects are again too great, and he cannot maintain an acceptable quality of life, then he knows he " gave it his best shot " and can move on. So Ken has agreed to one more week. Hopefully things will go more smoothly this time. Also, good news in that Ken is now walking without a cane, and maneuvered through the city quite well today, walking the 10 blocks or so from Grand Central to the Dr.'s office completely unassisted! :)

Quick update

Ken did SO MUCH BETTER today! He had a lot more energy today, and was up and about all day...even managed to eat! A big difference from yesterday! :)