December 26, 2012

Hello, everyone! I am sorry that I haven't posted an earlier update... needless to say its been a long, stressful, extremely emotional couple of weeks. As far as Ken is concerned, he is doing well. He actually received his first dose of the study drug on Tuesday,Dec. 18th. Due to the horrific events in our town, we ended up having to bring the children with us to Boston for the first few days last week. Our dear friend Laura was kind enough to travel from Rhode Island to Boston to spend the day with our kids, so that I could be with Ken at the hospital for "day 1" of the clinical trial. He had to be closely monitored for several days, so once we knew he didn't appear to have any adverse reaction, I returned home with the kids so that they could get back to school, which was in itself an emotional experience. Later in the week, Ken's EKG's were abnormal, and indicated a possible heart attack. On Friday, they performed an echocardiogram and blood tests. The bloodwork indicated some possible damage to the heart muscle, but the echocardiogram was normal, and repeat EKG's were normal. They sent him home for the weekend, with a promise to return on Christmas Eve day. On the 24th, he recieved the study drug and again had an abnormal EKG, then they switched EKG machines and got a normal reading. All very confusing and frustrating. So tonight we are back in Boston...we met with a cardiologist today, who said that he is not concerned. While the EKG may have indicated a cardiac event, his tryponin (?) levels and echocardiogram are commpletely normal. He does have some thickening of the heart muscle, but the cardiologist claims that it is not something to worry about, and he sees no reason to take him off of the study drug. So, he is now on a daily dose...scheduled to return next week for more tests. Hoping you all had a safe and peaceful holiday, and wishing you all a happy new year.

Hello, everyone! As many of you know, it has been a crazy week so far, so I am finally sitting down to write an update. On Monday, Dr. M. called to let us know that one slot had become available for the clinical trial for GDC-0084, which is the trial that we had been hoping to get into. However, we had to scramble to get up to Dana Farber within 24 hrs to get the open spot. Tuesday, we went up to Boston, met with the P.A. from the study, Ken completed the screening tests and signed the consent, so he is now officially in the study! Dr. M. had laid all the groundwork for us by having us visit Dana Farber last July so Ken was already a patient of Dr. Wen (Who is the Physician Investigator on the study), and has been forwarding all of Ken's scan results to Dr. Wen so everyone was already up to date when we arrived. As I understand it (again, I am not very scientific, so I may not have this exactly right), the drug that they are testing is specifically made to penetrate the brain (most drugs are specifically made NOT to penetrate the brain) and to block a certain mollecular pathway, thereby prohibiting the tumor from growing. That mollecular pathway is switched on by a mutation in the P13CA gene. The incredible news that I learned on Tuesday is that they have done genetic testing on Ken's actual tumor (that was removed in March) and it DID test positive for the P13CA mutation. So the doctors at Dana Farber feel quite optimistic that this drug will have a positive effect on Ken's tumor. Their ultimate goal is that while they can't actually cure this type of brain tumor, they may be able to stop it from growing and thereby successfully manage it by taking a simple pill each day, much like they now manage diabetes or high blood pressure!! Ken will begin the Clinical Trial next week. The first four days of the study he will need to remain in Boston for close monitoring. Then he will need to go up to Dana Farber several times in the first month, then it will lessen to once a week. Eventually, he will be taking the pill from home and traveling to Boston twice a month for the duration of the study. As long as he is responsive to the medication, he will remain on it indefinately. The trial is still in Phase one, which is the dosing phase. While he's not in the first control group (on the lowest dose) it is still early in the trial so it is not the most powerful dose, either. However, there is another gentleman that is on the same dosage and his most recent MRI showed no growth so we are encouraged that this is an effective dose. I asked if the dose can be increased if they eventually find that a higher dose is more effective, and they told me that after his third month they are able to increase his dose. There is, of course, a long list of possible side effects, but so far in the study no one has reported any major issues, the chief complaint is of "tiredness". I am so hopefull that Ken will tolerate the drug well, and not have the issues that he experienced during his first clinical trial. Fingers are crossed! That is ALL that I know about everything. I am trying not to get my hopes up, but that is very difficult for me because we left Dana Farber on Tuesday feeling VERY encouraged and optimistic, and extremely grateful to have this opportunity! I will try to update everyone again once the trial has started. Thank you so much to everyone for your well wishes and support!

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! :)

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...

Decision

Ken has made the decision to participate in the clinical trial, and actually begins tomorrow (wednesday) at 7:00 am! Fingers crossed!!

Post Surgery Follow Up

Today marks the 10th day since the surgery, and Ken is doing great! He has "ditched" the walker completely, and is getting back to his normal self. The physical therapist finally came today, and she has no plans to see him again! An occupational therapist is scheduled to evaluate him on Sunday, but I anticipate pretty much the same results. We had an early morning today, Ken had an 8:00 am appointment with Dr. M in New York, followed by the removal of his stitches. Sooooo...the appointnment was much more complicated than we had expected. The pathology shows that the tumor was, in fact, a grade III. There is now a decision to be made about further medical therapy. Because the resection was so successful, and Ken is young and in good overall condition, the Dr. feels that this may be the time to pursue more innovative therapy. This would be in the form of a clinical trial. Other options include going on a daily "maintenance dose" of Temodar (the chemotherapy that he has been on previously) or another form of chemotherapy, which may carry greater side effects. However, the Temodar is readily available, and he could go on that at any time. There is also the possibility of the clinical trial that we had previously been considering, which is a combination of the drug Avastin, plus radiation; however being on the Avastin would make him ineligible for future therapies. We could also check into clinical trials at Dana Farber or NCI. Or there is a clinical trial opening this week at MSKCC that our doctor has suggested. This would involve receiving a drug via IV once a week (in NYC) as well as an oral medication to be taken daily. There are 3 spots available, and one is reserved for Ken; however, if he declines there are about 10 people in line behind Ken waiting for those spots. So we would need to decide and fill out paperwork on TUESDAY, and likely start trial on Wednesday. The trial would run indefinately...until the tumor reoccurs...so once a week for months or possibly years. Side effects include elevated cholesterol, acne-like rash, mouth ulcers, etc. Oh, and the potential for a "brain bleed", so he would need an MRI after first dose. "No Pressure" but we have to decide NOW. His doctor feels that if he is going to participate in a clinical trial at some point, this is the time to do it...often it is easier to qualify after the first or second recurrence, rather than later on. And this therapy would not close the door on future therapies. Also, it seems easier to prevent a reccurence, than to get rid of a tumor that has already surfaced. So those are our options, at least as I interpret them. We are a bit overwhelmed, so if anyone has any questions or suggestions, I would appreciate it!

Sunday Evening

Ken is home and making terrific progress!! He was released from the hospital Friday afternoon...the kids were so excited to see him! He spent most of the day yesterday resting, but this afternoon he maneuvered the stairs and spent the majority of the afternoon watching basketball from the couch, and even had a few visitors. The home nurse came today and said he is doing really well, and physical therapy and occupational therapy should start tomorrow. He even managed a shower tonight, which, believe me, is a good thing!! Someone set up a "meal train" for us, and I think we have dinner coming every night for the next two weeks, for which we are so grateful. Ken is housebound for the next few weeks, so if anyone local would like to visit, I'm sure he would welcome the company....try to call or text me first, so I can make sure it doesn't interfere with his therapy schedule.

Evening post

Surgeon and Neurologist were both just here, and it looks like Ken will be going home tomorrow! Fair warning to anyone who may wish to visit in the next day or two - he may come home with a walker, but don't be alarmed it is more precautionary than necessary. He seems to be getting better by the hour, and is currently sitting up in a chair watching the basketball tournament. He may need some occupational therapy over the next few weeks, but it's just to get him back to 100%.

Day two

Ken is feeling much better overall this morning. The occupational therapists have not yet been in to officially get him up and walking, but he's "snuck in" a few steps already. He's officially declared his boredom and his extreme dislike of the hospital bed, the food, and basically all things associated with the hospital. So he's ready to go home! Hopefully he will be released tomorrow.

Evening update

Ken is doing much better...still nauseous, but able to sit up and stand up briefly. He had an MRI this afternoon, and his doctor said it looks great. He will need some further treatment, to be determined after they receive the final pathology...most likely chemo of some sort. Looking forward to a better day tomorrow :)

The morning after...

Good morning! Everyone is asking for updates, so here is a quick one...Ken was moved to a regular room in the neuro ward this morning...he is having a bit of a rough time...not feeling well from the anesthesia & meds...occupational therapists have been trying to help him stand but he is having some issues with balance, etc. So he is not allowed out of bed at this point. The Dr.'s haven't been in yet so I have no report from them. I will try to update later. Thank you all for your support!

He's out!!

Ken is out of surgery. Surgeon said it went very well, he removed all visible signs of tumor. They did not do any pathology in the O.R., he feels that it is a grade 3 tumor...but will await the actual pathology report. Ken did great throughout the surgery, has come out of the Anesthesia, but is somewhat agitated...I asked if he's taken a swing at anyone yet, and he said no...phew! I should be able to see him within the hour. Dr. Gutin did remark "he's one big - ass guy!". LMAO!

Surgery update

They didn't actually take him back to the o.r. until about 1:45, so it will probably be a while before we hear anything! All things considered, he is in good spirits, and thanks everyone for their messages!

Pre-surgery update

Ken's surgery is scheduled for early afternoon tomorrow. He doesn't have to report in until 10:30 am, and surgery is typically scheduled approximately 2 hours later. He is in the MRI now, and we are spending the night here in the city. We greatly appreciate all of your prayers and good wishes!

New date for surgery

The new date for Ken's surgery is March 13th!

Pre-op meeting with surgeon

Today Ken had some pre-op tests, and we met with Dr. Gutin for the first time. He was very confident, and said that he will remove "all visible" tumor. He cannot "get it all",so to speak, because no one can ever guarantee getting every single cell...and all it takes is one cell for the cancer to grow. One of the main purposes of the surgery is to grade the tumor, and test it for genetic/ molecular abnormalities, to determine the course of future treatment. The tumor is small, and close to the surface, so the surgery should not be too difficult. Ken will be put completely under Anesthesia, and the procedure should take approximately 3 hours. They will do some pathology in the O.R., so he will have a good idea of the tumor grade, but will not know definately until the final pathology is done. At this time it appears that the surgery has been postponed to March 6, but we will know for sure tomorrow.

Surgery may be postponed...

The surgery may be postponed...they are still searching for Kenny's brain. Just kidding, scheduling conflict! :)

Surgery is scheduled

Ken's surgery has been scheduled for Tuesday, February 28!

February 15, 2012

Dr. M. called...after meeting with the Tumor Board, Radiation Oncologist, and the Surgeon, he feels that surgery is the best option at this time.  We were able to get the surgeon that we requested, Dr. Philip Gutin, who is the Chief of Neurosurgery at Memorial Sloan-Kettering.  I am thrilled that he has agreed to take on Ken's case.  It is my understanding that Dr.Gutin feels that he will be able to remove the entire tumor.  Opting for surgery has many advantages over the clinical trial.  If Ken were to participate in the trial, he would need to remain on the Avastin permanently, thereby making him ineligible for other therapies.   Having the surgery will not only remove the tumor itself (always the best option!) but also allow them to test for Molecular abnormalities and to grade the tumor.  Thankfully, Dr. M. feels that the tumor is a grade III, but it is still possible that it is a grade IV,and the only way to know is to take it out.  I inquired about the genetic mutation IDH1, and he responded that while there is no medication available at this time, they would test the tumor for the genetic mutation so when a targeted therapy does become available, we will know if Ken qualifies.  When the previous surgery was performed three years ago, they didn't even know to test for these things yet.  Such advances have been made in so short of a time!   So having the surgery (and not being on Avastin) could potentially open the door for future treatments for Ken.
As scary as brain surgery is, we do feel that it is the best option at this time, and, while not a cure, could "reset the clock" on Ken's cancer.  I also truly feel that with Dr. Gutin we are in the very best possible hands.

February 10, 2012

Ken had his first MRI since beginning chemotherapy.  The tumor has grown, slightly.  It was approximately 1.4 centimeters on January 13, and now is 1.9 centimeters.  Dr. M. feels that this warrants further action than the Temodar.  The fact that the tumor has grown means that it is likely a more aggressive tumor than the original one.  Worst case scenario is that the new tumor is a grade IV.  The options include surgery, but he feels that they may not be able to get the entire tumor out without affecting Ken's motor function; however, the decision lies with the surgeon himself.  The second option is to enroll in a clinical trial at Sloan-Kettering.  The trial would be a combination of a very focal radiation therapy, combined with the drug Avastin.  It is thought that the Avastin increases the oxygen flow to the area being radiated, therefore making the radiation more effective.  He says he has seen some success with this, and there is a trial opening on February 16.  The trial involves Avastin via IV Infusion once, then again in two weeks, followed by three doses of radiation.  In reading the trial materials, it seems that following radiation he would be on the Avastin indefinately (perhaps the rest of his life?).  Dr. M. needs to present the case again at Tumor Board, then meet with the Surgeon, and the radiation oncologist.  Then we will come up with a plan.

Chemotherapy

Ken completed his first course of chemotherapy from January 24 through January 28.  The dosage is by weight, so being such a big guy, I think he is on a pretty high dose.  In any event, the chemo made him pretty sick, and he spend a good deal of time in bed.  He seemed worse in the mornings, so he usually was up and about in the afternoons.  Poor guy.

January 13, 2012

Who schedules an MRI for Friday the 13th???   bad move...after 2 1/2 years of stability, there is a "new growth".  It is very small, but must be "dealt with".  It is in his right Parietal Lobe, very close to the cavity of the original tumor.  Our Attending Physician, Dr. Mellinghoff, met with the "Tumor Board", the Surgeon, etc., and the plan of action that we decided on was two courses of chemotherapy, which is a pill called Temodar, to be followed by surgery if they determine that the tumor is not responding to the Temodar.  The fact that the cancer has returned within a 3 year time frame leads us to believe that the original tumor was, in fact, a grade III (not a grade II as Yale had told us).   I am thankful that we took a proactive approach and went with Sloan-Kettering.  We have a great relationship with Ken's doctor, and we both have great confidence in him and his facility.

I am creating this blog for those of you who wish to keep informed on Ken's condition. We are so blessed to have so many friends, family, and neighbors who have so thoughtfully inquired about what's been going on, that this seems the easiest way to keep people up to date.
I have pretty much NO medical knowledge, so this is only my interpretation of what the doctors have told me, and while I try to keep it as factual as possible, I may at times misinterpret things.

History

In 2008, Ken was Diagnosed with an Anaplastic Astrocytoma.  After the initial discovery of a brain tumor at Bridgeport Hospital, he had Surgery at Yale-New Haven Hospital, during which they removed the majority of the tumor, but were forced to leave a small part in for fear that his vision would be affected.  Yale determined that the tumor was a grade II, and no further action needed to be taken, other than monitoring every  6 months with an MRI.  We sought a second opinion through Memorial Sloan-Kettering, who graded the tumor as a grade III, and sought to take action against the portion that remained.  We obtained a third opinion from Mass General, who was somewhat "in the middle", but leaning toward Sloan Kettering's diagnosis of a grade III.  So we settled on the fact that the tumor was probably a "low III or high II" and opted to continue treatment with Sloan-Kettering.  We were told that the cancer would return, and  took an aggressive stance, hoping to stave off future growth and have some quality time before its return.  Ken went through radiation therapy, followed by chemotherapy, and has been "stable" for about 2 1/2 years.  He has been monitored with MRI's every 2 months, then every three months, and then finally every four months.