A bit of a hard day

Monday was a bit of a difficult day. Keith was very tired and needed some pain meds to help with the headache. He is also having a hard time finding his appetite - the steroids seem to make all things taste very bitter.

Still and all, there was good forward progress. In the morning, our surgeon's assistant stopped by and removed the pressure dressing which had been in place since the surgery. The wound is healing nicely - there is a 5 inch line of staples extending from his hairline diagonally across his scalp to the area just behind his ear. For now, no wrap is needed - just a sock cap to keep any dirt from floating in. Although the swelling is gradually going down, Keith still sports a black eye and a mumps-like jawline. Since he is now able to walk to the bathroom, he caught his first glimpse of himself post-surgery and let out a bit of a yelp. I hated to tell him that the swelling has actually subsided a bit!

Finally, in the best news of the day, Dr. Pikul came by last night and reported that he was very pleased with Sunday's MRI. He said that much of the internal swelling has come down and that the midline which had been greatly distorted by the tumor is much improved. He is reducing Keith's steroid level, beginning today. Weaning from the steroids is a long gradual process; we did it once before and it is great to get the process started and even better to know that we are ready for that next step.

Sunday is quiet

Another quiet day...Keith was feeling less well, more tired today...probably all to be expected. He was able to sleep most of last night with the continued assistance of pain meds. Early this morning his blood work indicated that his platelets had dipped to 75,000 (we've been there before!) and he received a small transfusion. He has been stable today. We are not quite sure why the platelets dipped so low - most likely this was a result of the week of chemo followed by the surgery.

Keith was also given an MRI today - we will get the read out tomorrow. This MRI will be both a glimpse into how he is doing post surgery as well as our baseline for the next chunk of work we will be doing to reduce the remaining tumor.

Notwithstanding the platelet issue, from a "post surgery" perspective we passed a number of milestones today: the vancomycin cycle was completed last night, the oxygen tube was removed this morning, several of the IV "lines" put in place during the surgery were removed, and the foley catheter was also removed. Also for the first time since surgery, Keith sat up in a chair and walked a few steps - that is a big accomplishment.

Finally, ta..da...we moved out of ICU this evening and onto the 6th floor of the hospital for further recuperation. This means that the team is comfortable that he is mending well and no longer needs the close care offered in the ICU. We are now in room 638; you can ring the nurse's station at 323 783-8151 to see how he is doing. Again there is a land line in the room, but it remains a mystery how/when it works!

Doing well

Saturday Keith had a very quiet and uneventful day in the ICU. He was quite alert in the morning and was visited by his surgeon as well as the host of the regular ICU doctors who make rounds. He was beginning to feel some pain - headache/pressure - and was given pain meds in the afternoon. He promptly went to sleep for the balance of the day! Just before dozing off, he got his first few bites of food since Thursday night- jello and canned peaches.


Keith is still on oxygen and we are continuing to monitor his neurological status - all looks good so far. He will likely stay in the ICU for a few more days. Risks include the usual surgical complications - blood clots or infection- so we want to make sure he stays well.


He is at the Kaiser Sunset Hospital, Room 469 and is able to have visitors (2 at a time) 9:30 am to 7:30 pm. Our cell phones don't work very well in the room, but he has a land line. Feel free to call him at 323 783-6651.

Surgery went well

Dr. Pikul just came down and gave us a briefing on the surgery. He felt that in general it went very well - he was able to remove a large part of the tumor and there were no complications during the procedure. He was unable to get everything - there was a part of the tumor which we believed was sitting on the motor strip - that indeed was the case - so that stayed behind.

All of the "study" samples (blood and tissue) were successfully gathered, packed on dry ice and transferred to a waiting courier for transport to UCLA. The team also performed a "quick" biopsy in the operating theater and confirmed (as expected) that this is the same sort of tumor that emerged two years ago.

Keith woke up after surgery and was able to say his name and wiggle all the important bits. They will be transporting him to the ICU over the next hour - we are hoping to get up to see him shortly.

And we are off!

We have had a very busy few days but the long awaited day of surgery has finally arrived.

To review the past week: Keith was formally accepted into the UCLA trial last Friday and began taking the first study drug (Tarceva) Saturday morning. He has had no adverse side effects to date - great news. We were advised to expect a mild rash around the 5th day - and right on schedule Keith developed a mild version of teenage acne. Yesterday afternoon we spent several hours at UCLA's new hospital where Keith was given the second study drug (Temsirolimus) by IV. He took one more dose of Tarceva this morning right before he was escorted up to pre-op. A few weeks after surgery he will resume the chemo protocol - 7 days of Tarceva and 1 day per week of the Temsirolimus drip.

We also had a nice surprise yesterday. The UCLA study coordinator let us know that in the one week since we entered the trial, it seems that Temsirolimus has been given FDA approval - it is now "official". Keith felt greatly encouraged by this news - it filled him with hope as the approval means that there has been enough success with the drug to allow it onto the market.

All in all, the week passed faster than we expected. We were kept quite busy in and out of Kaiser with tests and prep work for the surgery. As expected, Keith was very, very tired - partly a result of the high doses of anti-seizure drugs - and partly a result of the tumor. The steroids have made him ravenous - we spent much of the time catering to many odd food cravings. Thankfully, the time passed and we had no adverse events.

Now for today: This morning we got up at 4:45 am; Keith showered and shampooed his hair for the last time for a few weeks. (Yikes, acne AND dirty hair!) We arrived at Kaiser Sunset Hospital around 5:30 and he was taken up to pre-op around 6:30. Tzara, Sam and I settled into the waiting room where we will stay posted for the long day.

Our dear friend Mimi McCracken popped in around 7:00 and managed to sneak us into the pre-op area (thank you Mimi!). Keith was alert and looked great - tubes coming out from all sides. Dr. Pikul had already been in to talk with him and all of the study vials for the various samples to be collected during surgery were at the ready. We also got to meet Keith's anesthetist and his nurse - it's nice to put a face to the team. Even better, we were able to administer one more round of hugs and kisses.

Surgery got rolling around 8:30. (There was an emergency surgery in our operating theater overnight so our start was slightly delayed.) We anticipate that the procedure will take 6 hours or so - I will post updates as we have them.

Waiting for logistics to be settled...

After a quiet weekend in the hospital, Keith and I met with the UCLA team on Monday of this week. They reviewed our MRI's and briefed us on the phase 2 trial which was recommended to us.

The trial really consists of 2 parts. Part 1 focuses on the penetration of the chemo agents into the tumor. During the first 5 days prior to surgery Keith will take the orally administered agent Tarceva. On the 5th day he will add Temsirolimus which must be administered at UCLA by drip. The protocol requires that surgery then take place within 3-24 hours of the drip. The research team will recover part of Keith's resected tumor with the objective of assessing how much of the chemo agents have penetrated the tumor in the five days and what genetic or other effects can be documented. Two weeks after the surgery, Keith will restart use the chemo agents - exactly as in the first week - and will continue as long as they are effective. The examination of the tumor material will take place well after the surgery, so as the team explained to us, whatever is learned there will not specifically benefit us in our current situation. The immediate benefit to us is access to the chemotherapy which would otherwise be unavailable. (For more on the trial, link to the profile at http://clinicaltrials.gov/ct2/show?term=tarceva+and+Temsirolimus&rank=2)

We had hoped to begin the therapy as early as last Tuesday, but we learned that there is a requirement within the trial that we be 28 days away from our last Temodar treatment. That places our earliest start date at this Friday and the soonest we could then do surgery would be Wednesday or Thursday next week. We were clearly disappointed at any delay as there is clear risk in waiting for the surgery. We spent Monday night and Tuesday agonizing our decision - or rather reagonizing it. We were already feeling stressed by the length of time to surgery - now a few more days will be needed.

The best alternative to the trial is to do the surgery ASAP and begin treatment with Avastin (3-4 weeks post surgery). Avastin is a monoclonal antibody which chokes off the blood supply which supports the tumor. (Tumors send out signals to create new blood vessels - without a blood supply the tumor cannot grow or thrive.) Avastin both alone and in combination with chemo agents has been effective for many GBM patients - but it too eventually "runs its course". Additionally, we are just learning that it may change the structure of the vascular system which has some long term downsides - mainly that it may be harder to get chemo into a subsequent tumor.

In the end, we decided to stay put and to go for the trial. Our reasoning is that this tumor is operable - whether or not the experimental chemo works, that buys us a bit of time. If Keith were to get another tumor, and it were inoperable, the best tool we would have is Avastin. From a strategic point of view, I want to save the Avastin tool in case we find ourselves in a situation where it is our only tool.

We are now in the process of getting approved/accepted for the trial. This is not just a formality - they study team needs to confirm that Keith does not have unique circumstances which would distort the results. The logistics are also complicated. As of this morning nothing is settled, but the tentative schedule looks like he will be able to start chemo on Saturday with surgery the following Thursday.

Keith is now home and resting in his own bed. He has had many visitors which is greatly comforting. He is sleeping a great deal (antiseizure meds are back in the picture) but he does not have headache or nausea which means the steroids are doing the trick for now. Any whiff of an issue and we will be back in the hospital...

Keith Update

Keith is back in the hospital. He has a new tumor in the right frontal area of his brain - the previous tumor was on the left side. The new mass was not there 7 weeks ago when we did our last MRI, so it has grown quite rapidly.

We landed in the ER Wednesday after Keith struggled for several days with a splitting headache, nausea and fever. We had hoped he just had a bad bug - by the time we got to the hospital, it was fairly clear that his symptoms suggested a recurrence.

This new tumor is mostly operable (unlike the last). Our surgeon thinks we can get a majority, although not quite all of the new mass - there is a bit which is on the motor strip - on the right side rather than the left - he would lose function on the left side if we touched that area.

There is a large area of swelling and edema surrounding the tumor. The size of the tumor along with the swelling result in intense pressure on the rest of the brain and in turn the pain and the vomiting. We started steroids immediately and Keith is feeling much better today and yesterday. He is on pain meds as needed.

We spent yesterday working through our next steps. Surgery is a must - to relieve the pressure on the brain - but surgery is not "curative" with this disease. Radiation at present is not an option - normally that is something that can only be done once - but we consulted the radiologist "just in case". Temodar, which has served us so well to date, has clearly run its course - so we are in need of a new chemo agent or agents.

Our oncologist is recommending a Phase 2 trial consisting of a combination of two drugs - Erlotinib (Tarceva) and Temsirolimus. Both of these have been used for other cancers, but not in combo as far as I can see. One is in pill form and is taken daily and one is a drip administered weekly. The trial is at UCLA.

Our only hesitation is that this particular trial requires that we do 5 days of the chemo BEFORE surgery. (Note: Our surgeon is ready to go "now".) Notwithstanding we have opted to go for the trial. We will meet with the UCLA team Monday and expect to begin therapy on Tuesday - with the earliest surgery the following Monday.

There is some risk in waiting to do the surgery - but the belief is that steroids and the initial blast of chemo can keep the tumor in check for the initial week. If we did surgery right away, we would need to wait 2-3 weeks before beginning chemo - and we would need to find a different trial. In the long run, it is the chemotherapy agents which will give us the most benefit - and we hated delaying the start of that attack. If we run into problems during this next week, we can do the surgery sooner - albeit on an emergency basis.

Keith is in good fighting spirits - and we will take each day one at a time - and make the best choices we can make in each moment.