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...