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! :)

Weekly update

Ken is having a really terrible time with the side effects of the clinical trial. I hate to say it, but this week was actually worse than last! Wednesday's blood test showed that his platelets had dropped from 117 to 77. He lost an additional 7 pounds this week, for a total of 19 pounds in 2 1/2 weeks. He continues to have several "wicked" mouth ulcers, plus one especially evil ulcer in his throat, which have made it very difficult for him to eat or drink. So add dehydration to the list, which also increased his pulse. The doctors are afraid that the ulcers may continue down into his GI tract. In light of all of this, they have suggested he take a break from chemo this week. They were able to administer IV fluids, and prescribed him a steroid mouth wash. Oh, and some medicine for the worsening rash on his back. He has to return on Monday to see a specialist about the mouth ulcers, then again on Tuesday to see a GI specialist. Then they called us twice on the train ride home...once to let us know his liver function had decreased...and again to tell me that if he gets worse this weekend I should take him to the ER. I almost wish they had just admitted him, rather than leaving us to fend for ourselves over the weekend! On a happier note, the doctor actually said to Ken "your wife is just SO GREAT"... I am sure I will be reminding him of this on several occasions in the near future!!! I am really hoping that taking a break from the chemo will allow him to improve significantly in the next few days!

MRI day

Today was day 10 of clinical trial....it's been quite a week, to say the least! Fevers, rash, horrendous mouth sores, 12 pounds lost (in 10 days!) and one trip (via ambulance) to ER...yet he made it through, and has decided to tough out the trial for at least another week, in hopes that at least some of the side effects subside and he can continue on. Today's MRI revealed no tumor growth, and no "brain bleed" (the fear of which had sent us to the local ER)....so all good news. The doctors said that the side effects that he is experiencing are to be expected, and that as his system adjusts to the medication they will hopefully subside. The combination of drugs that he is on are thought to target a specific protein essential for cell growth. If they can kill that protein, they can inhibit the growth of the cancer cells and hopefully prevent the tumor from returning. That's the basic theory, as I understand it. Ken is maintaining a pretty good attitude, and continues to recover from the surgery...he is walking with a cane and working with the physical therapists toward a full recovery. The poor guy has really been such a trooper this week...living on milkshakes and icees...all he really wants is a nice steak, which will be top priority as soon as he feels better!

Week 1 of clinical trial

Ken began the trial last wednesday...he had a 12 hour day where they "loaded" him with the drugs, which of course made him sick from wednesday night through Friday. He's been having a hard time with the side affects for the past few days...mouth sores, fevers, etc. The doctors say that the first few weeks are the toughest, so we're really hoping things start to improve soon...