Day 11 of Chemo

We have now finished the 11th day of the UCLA trial. There have been a few relatively modest side effects so far - Keith developed the expected rash about 7 days in and yesterday suffered his first bout of diarrhea. We had been advised to anticipate both so neither was much of a surprise. His blood work seems to be holding steady - and we will go for our 3rd round of Temsirolimus next Monday.


Physical therapy paid us a visit last Saturday and gave Keith a number of exercises which can be done either sitting on the edge of the bed or with support in a standing position. We were also able to find a nice used walker at our local thrift store. He is not able to walk on his own at present and we rely on a wheelchair for our outings. The walker is useful for doing "laps" around the bedroom as well a providing a stable platform for exercises.

Keith continues to feel very weak -- he still naps on and off most of each day and is not up to much prolonged conversation. For now, he simply has very little energy. The Monday outing to UCLA exhausts him - but he is steadfast in his resolve to do small bits of exercise throughout each day as he can.

Ellen, the amazing acupuncturist who has worked with us over the last 2 years, was kind enough to visit us at home on Wednesday afternoon and did some very helpful work with Keith. She had wonderful advice on ways to help Keith's brain reconnect with his left arm and leg - the key is to keep using what he has so that his brain begins to rewire and remember its signals even as it is recovering from the trauma of surgery and fighting the new tumor.


Keith had been a bit reticent to be "needled" - he has played the pin cushion role for a steady stream of white coats over the last month. He succumbed to Ellen's gentle persuasion and her touch was magic. Wednesday evening he got a needed burst of energy and was able to venture out to catch Samantha's set at Tangier.


We continue to have a steady stream of visitors - all wonderful and all much appreciated. There are times when Keith is hardly able to speak - sometimes he is barely able to wake up - but he whispers to me often how touched he feels and that he has amazing friends - and he
does!

Day 3 of Chemo

Monday we spent most of the day at UCLA and Keith has been officially restarted on the trial (http://clinicaltrials.gov/ct2/show?term=tarceva+and+Temsirolimus&rank=2). For those of you who are technically inclined, there is a theoretical discussion of the action and synergy between the 2 study agents at this link: http://www.nature.com/bjc/journal/v96/n6/full/6603656a.html.

The logistics are fairly simple. Keith receives an infusion once a week - in our case it will be Monday's. We go to the research center at UCLA where Keith is examined by a member of the neuro oncology team and the study drugs are called up from the pharmacy. (The drugs arrive in a brown paper packet - in cases where there is a blind trial the brown paper bag is meant to make the study agent "unidentifiable" - ours isn't a blind study so it just seems funny.) Keith is situated in a hospital room/bed and first receives an IV dose of benadryl (antihistamine in case of any allergy) - then we have a 30 minute wait - and then a 15 minute infusion of the Temsirolimus. The process could take as little as an hour - but our experience is that start to finish it is more than 2 hours. Everyone is very very nice and very professional - it is clearly a research environment and they are grateful for our participation. The second drug is a pill - he takes that each morning. They gave us a 28 day supply (in a brown paper packet) and I have a diary to fill in - time of day of administration, any side effects, etc. (No side effects so far.)

We do not have much in the way of published results of the study. Kaiser told us they have several patients who have done quite well. When pressed, "quite well" meant one went six months without a recurrence and one went nine months. In the context of brain cancer six and nine months is considered "quite well". I did hear that some preliminary numbers may be released next month. Generally these studies are abandoned if they find that no part of the population is helped - because the study is ongoing, the indication is that at least some of the population is having some success.

There is no specified timeframe to the study. Essentially you continue with the trial until you have a recurrence (a new tumor) or you "progress" (expansion of existing tumor) and you choose to drop out and pursue other options. There were other studies offered that I briefly looked at - but at the moment there is not too much out there. Many of the current studies involve avastin or avastin-like agents. Because the latest information suggests that avastin has the potential to create other insurmountable problems in the long run, the experts are a bit stumped - and there are not so many options for experimental treatment.

Because we are in the study, we are not able to do radiation. In the ideal, we might want to do both - but that is simply the drawback of being part of a research protocol. Since the radiation is only able to target a very specific area (the visible tumor) and we know that this cancer typically hides unseen elsewhere in the brain - targeted radiation is a limited solution. We have opted for the chemo approach because it is systemic and will attack both the visible and invisible cancer cells. Not an easy decision - and frankly timing was part of mix. Radiation would not be ready for us until next Wednesday - the chemo was ready last Monday. Speed to treatment was a real consideration in our situation so by some measure of default, the study won out.

I can't express how relieved we are to be on the attack. Cancer teaches us that we cannot control everything - but that humbling lesson doesn't mean that we shouldn't/can't muster all that we can to try to beat this thing into submission!

UCLA Today

Today we will meet with the UCLA study team. We got word late last week that they have recommended that Keith resume the study as soon as possible. If all goes well, he will receive the IV drip this morning (temsirolimus) and once again start with the daily tarceva. Doing the study will mean that we will forgo the radiation option. This was not an easy decision - however the radiation we can do is limited to specific areas so it can only target tumors which have appeared. The chemotherapy is "systemic" and could potentially act against the cancer cells throughout the brain - not just those that have coalesced into visible tumors.

The last few days have been challenging but we have been cheered by many lovely visits and calls from friends and relatives. We are managing to adjust to getting around the house although Keith has begun to lose strength and motor function in his left arm and leg. He is not able to walk without assistance and he does not have much energy. Among the biggest challenges is getting him up and down the (outside) stairs to get to the car. (Living in the hills is not ideal!) We have a visiting nurse who is arranging for a bedside commode and a walker - these should make some of the maneuvering easier. Our dear friend Susanna has also arranged for us to borrow a wheelchair - this will also make it easier for Keith to get in an out of doctor's appointments.

A physical therapist will be in to work with him this week and to make recommendations for making the house easier and safer for us to negotiate. Our friend Mimi stopped by yesterday and inspired him to toss a ball back and forth and do some arm and leg exercises.

Many of you have asked how we (the girls and I) are doing. We are taking this one day at a time and just putting one foot in front of the other and doing what needs to be done. We have had many wonderful moments and many sad moments with him over the last few weeks. I am very grateful that the cancer has not affected his sense of humor or his ability to communicate. These are hard days, but we are managing.

Staples are out

Today we visited our surgeon's office and the staples were removed. The incision is healing nicely - and even better - Keith can now wash his hair.

Our planning meeting with the radiation team went well. The treatment we are being offered is IMRT (Intensity modulated radiation therapy) - a relatively new technique which allows radiation to be focused and shaped around a specific tumor. The advantage is that this process spares incidental parts of the brain while allowing a good dose of radiation to be delivered to the target. Given that we had the maximum dose of radiation two years ago, this presents a unique opportunity to do more radiation without violating the "10 year rule". We are scheduled to begin next Wednesday.

Tomorrow (Thursday) we have a meeting with the oncology team to discuss our chemotherapy options. We will start the day with blood work - to get a feel for how well Keith's platelets are recovering. We understand that the UCLA team has reviewed Keith's latest MRI and has consulted with the Kaiser team to assess the best approach. I will post when we have their recommendation.

Keith continues to be quite weak although he has managed (with help) to get up and down our stairs for outings to Kaiser on each of the last two days. Otherwise, he is nestled comfortably in his bed and dozes on and off throughout the day. There has been a steady stream of visitors which cheers him greatly.

Calls and visits welcomed

Keith is resting at home in his own bed. Although he is quite weak, he is happy to have calls or visits.

I had been holding off posting to the blog until we had our plan of attack in place. Unfortunately, the oncology group at Kaiser is still awaiting a consult with UCLA - we do not yet have their recommendation (and yes, my patience is running thin!) I continue to believe that we will be guided to avastin - but there may be options I am not aware of.

On a more positive note, this morning we will meet with the radiology team. Today they will do some pre-planning cat scans and explain the options they have to offer. Our very trusted surgeon has made the point that the first tumor was responsive to radiation and has urged us to push in that direction. Generally patients cannot do radiation more than once - it requires tricky maneuvering to ensure that the same "incidental" parts of the brain are not exposed in successive treatments. Assuming we have options with radiology, we believe we can start as early as next Monday.

Time remains of the essence. Given how quickly this tumor grew in the two weeks following surgery, I am anxious that we begin treatment as soon as practical.

Some Difficult News

Thursday we began to notice that Keith was not able to use the muscles on the left side of his face -his smile had become very crooked. We did a CAT scan in the afternoon,followed by an MRI very early Friday morning. The MRI showed that the tumor which was left behind has grown quite a bit in the 2 weeks since surgery. This was the tumor area surrounding the motor strip on the right side (which controls the left side of the body). The loss of function in the facial muscles is a result of this tumor growth.


We are evaluating our course. Radiology is going to take another look at our films - we had a brief consult late Friday and there is a possibility that we may be able to do some limited therapy. UCLA is also looking at the new tumor growth. We believe that they will recommend that we try avastin rather than continue with the study drugs (which had a short course, but apparently no impact.) His platelets are still hovering at 70,000 - that is not enough to restart the chemo - or start any other chemo - but we could potentially start avastin this week. Time is of the essence given the rapid growth - so we are interested in whatever steps we have available that we could begin almost immediately.

Keith wanted very much to be out of the hospital and we brought him home last night. He continues to be quite weak and his speech is a bit slurred as he has lost some of the muscles which help with sounds. He has also had a few focal motor seizures affecting the left face/teeth/neck/shoulders. We will try to adjust his medications to prevent these - but the tumor position on the motor strip makes this difficult.

As requested, he had steak and eggs for dinner and we managed a bath this morning.

Platelets are level....

....and that is good news. The hematology specialist visited this morning to announce our victory. She would like to watch his levels tomorrow just to make sure - but the trend is good and everyone feels that he is now producing enough on his own to rebuild the inventory. The white blood cells have continued their upward trend.

In another piece of good news, we heard that UCLA took a look at the WBC/platelet issues Keith has had and reached the same conclusion that the Kaiser specialists reached. There is universal agreement that the problem came from the introduction of Keppra and not the chemotherapy agents Keith took the week before surgery. This means that there appears to be no barrier to our continuation with the experimental protocol. We expect to be able to resume about 4 weeks after surgery. Keith will need to be completely free of the pneumonia.

In spite of the positive "statistical" trends, Keith is still feeling really sick and really weak. His color is much better - but aside from that there are no visible signs yet that he is on the mend. He does not have the energy to sit up on his own and the little bit of exercise he gets with OT and PT wears him out for hours. He is now eating quite well, however, so I am hoping that a combination of better nutrition, gradual increase in activity and the imminent restoration of normal platelet levels (he's at 67,000 and normal is 130,000-400,000) will begin to give him a boost. For now he is unfortunately quite despondent and keeps articulating his fear that he will never get out of the hospital. We are reassuring him as often as possible that he is getting better and that he is heading home in just a matter of days. Nonetheless he is very distressed - and the sooner he has evidence that he is improving (by feeling it) the better he will be.

Small but meaningful improvements

Each day seems to get a little bit better - but the improvements come in inches not feet. Today's blood counts are above our minimum thresholds. The WBC count is climbing and the platelets are at 67,000. Note that we expected the platelets to be OK because Keith had a transfusion late yesterday. The real test will come tomorrow when we will be able to see if his system takes over and keeps the platelet count up without intervention.

The pneumonia is also slowly getting better although Keith is still on oxygen and remains very weak. This will simply take a bit of time to heal. He has been on a mixture of antibiotics - the plan was a 10 day course - and we are closing in on that time frame.

PT and OT come by every day and do a little work with him. He is getting out of bed to use the toilet. It doesn't sound like much, but just sitting up in bed is a huge effort right now. He is doing just a bit more each day - and that is exactly what he needs to do to recover his strength. Most of the time he sleeps; he is still not up to phone calls (sorry).

So here's the game plan: The doctors are looking for 2 things in order to release Keith from the hospital. First, we all agree that it would be best to complete the 10 day course of antibiotics before he goes home. That would mean Friday or Saturday. Second, the platelets need to stabilize on their own. We could see evidence of that tomorrow - if not, we will transfuse again tomorrow and need to wait until at least Saturday for confirmation that he is stabilizing on his own.

Finally, all the doctors have asked Keith what he wants to do first when he gets home. A very quick answer: have a real shower and then eat steak and eggs!

Those darn platelets...

We are still struggling to keep the platelets up - today's number was 47,000 - well below the 60,000 target. Once again we will rely on a transfusion to get up to the level which our surgeon feels is "safe".

While the platelet news was a bit depressing, Keith had much more encouraging news on the WBC front. He is now above 5 - which means he is well into the normal range. This is important for so many reasons. Not only is his body now able to join the fight to eradicate the pneumonia, but it is also no longer vulnerable to every freewheeling germ floating about.

Keith is still very weak and he continues to need oxygen. Today's agenda is to eat more (breakfast was a great start), drink more and move more. PT is coming in this morning to get him walking a bit. We are also trying to experiment with more sitting up - even if it is in bed. His lungs need a bit of a workout to help them to heal from the pneumonia. That means taking deep breaths and changing positions so that all parts of the lungs get a "workout".

He continues to be on a cocktail of IV antibiotics. If we get his platelets stable, we think we may be able to go home toward the end of the week. That may mean that he will get a pic line and continue with IV treatment at home - or once a day at the hospital. Either way, the good news is that we are beginning to talk about heading home!

Numbers are getting better

Today's numbers continue to show that Keith is improving. His WBC count is now at 3.6 - nearly the 4.0 minimum which is considered the bottom of the normal range. His platelet count was also higher today - 67,000 - so we are over the surgeon's threshold of 60,000. We will need to wait a day or so to confirm that the platelets are rebuilding on their own. Since he did receive a transfusion yesterday, it is not clear that the higher count is a result of the boost we gave him or a result of his bone marrow kicking in and manufacturing on its own - or both.

We had a short discussion with the hematology specialist this morning and she feels that the culprit in the low WBC counts was the Keppra Keith received during the surgery. If this conclusion holds, this would be good news. If the source of the problem is the Temsirolimus (one of the study drugs) we might not be able to continue with the UCLA study. UCLA will need to make its own determination, but hopefully they will agree and Keith will be able to tolerate the study regime . By the way, Keppra is an anti seizure drug - we have used it in the past without problems. It is preferred for use during surgery because it can be administered by IV.

In spite of the good news on the blood front, Keith is feeling even weaker today than yesterday. The pneumonia is really taking a toll and he is now on 3 liters of oxygen. Although we had him up to take 2 short turns around the hallway, he was too weak to stand up to brush his teeth a hour or so later. Eating is still a problem, but he is managing a tiny bit more each day. We continue to reduce the steroids each day with a plan to have him off within 10 days.

He is still not able to receive visitors and is not up to phone calls yet. However, we are hopeful that if the blood trends continue and the pneumonia starts to improve he may be able to go home toward the end of the week.

Numbers are in

The WBC count is now up to 2.1 - not yet normal, but showing great improvement. This means that Keith's body now has some tools to fight the pneumonia on its own. Hopefully we will continue in this direction.

Unfortunately, the platelets are down again (51,000) so we will need to transfuse 1 more unit this afternoon.

Still waiting for today's numbers

It's Sunday and that makes it a bit of a slow day at the hospital. We have not yet had any doctors in, so we still don't know what this morning's blood results are.

Keith is very very weak and frankly just feels awful. He is back on oxygen and continues to have an awful taste in his mouth that really nothing we have tried has managed to alleviate. Under protest, he did eat some oatmeal for breakfast. We also changed his bed linen which necessitated that he sit up in a chair for about 15 minutes. That completely wore him out and he is now back in his newly clean bed.

Thank goodness there is football and baseball to help pass the time. He is still not up for phone calls - not enough strength - and we remain in an isolation room, s0 no visitors for now.

I will post later today when we have the blood results.

Stats are improving!

The trends are finally beginning to move in our favor. There have been no high fevers in the last 24 hours and Keith's white blood cell count is beginning to move up. It was .9 thou/ml yesterday and this morning he was up to 1.2. The normal range is 4.0 to 11.0 so we still have a way to go - but the Neupogen seems to be kicking in and we are heading in the right direction.

There is still a little concern about his platelet count - but that too improved a bit this morning. It had dropped yet again during the day yesterday and once again he received a unit of platelets late in the afternoon. This morning he is up to 60,000 from yesterday's 51,000 - still low but finally trending up. Platelets take longer to rebuild than white blood cells so this may be a bit slower in recovering. Nonetheless this is the first day we have registered any increase - in spite of all of the transfusions - so we are greatly encouraged.

The pneumonia seems no worse and Keith is only on oxygen from time to time. He is able to sleep fairly well but does have a bad cough. I would also add that he absolutely looks "better" today - his color is better and much of the swelling from the surgery is now gone. Food is still not very palatable, but he did manage to eat a bowl of oatmeal this morning.

Today's goal is to get up and do a short walk - he is very weak and we want him to build some strength. We are also going to take another step down on the steroids today - that may help with the eating.

We will likely continue to remain in isolation for a few more days - until the docs are comfortable with his white blood cell counts. He is still not quite up for calls - maybe tomorrow.

Hanging in...but not nice

Keith is hanging in there although there is little improvement to report at present. Yesterday (Thursday) we confirmed that he does have pneumonia but at present it is confined to one lung. If there is any good news, it is that there were no other lung problems turned up on the cat scan - he is vulnerable to other lung diseases and thankfully we aren't seeing any of these.

The blood work continues to show downward trends. Late yesterday afternoon he received another transfusion of platelets. He also received his second day of procrit - this is the drug which will help him to rebuild his neutrophils - the white blood cells which have dipped so low.

We are being well looked after and have a cast of specialists attending to us. Yesterday Keith was moved to an even more isolated isolation room. We are now at the end of a long hallway - it is quiet and there are few other patients around. Everyone who enters the room wears a disposable gown and mask to protect Keith from any harmful "bugs" we might be carrying around or breathing out. (No visitors for now except family.) Outside fruits/vegetables are off limits - these may also harbor unfriendly agents.

Our surgeon and his team stop by several times each day and are coordinating his overall care. At present, the surgical site is healing well and there is no sign of infection - this is great news. Our neuro-oncologist is also checking in regularly and has coordinated communication between UCLA and Kaiser to ensure that the two teams are up to speed.

The pulmonary specialty team is looking after Kieth's treatment for pneumonia. In turn, they have consulted with the infectious disease team because we believe Keith is allergic to penicillin which would be the preferred medication. The infectious disease team is working through an alternative for him.

Keith is also being followed with the hematology team. These specialists are monitoring his blood work and formulating our plan for getting him back up to par.

Keith is very weak (to be expected) but is still able to get up to go to the bathroom. He sleeps on and off and gets pain meds as needed. He is still having difficulty eating. The high doses of steroids have given literally everything a bitter taste. We have tried many approaches - and have found nothing which is palatable. We are hoping that this will begin to improve soon as the steroids are reduced.

I haven't had much chance to thank you, our dear friends, and words just can't cover it. Thank you. We feel so much love around us and that love nurtures our strength and gives us hope. Thank you.

Low white blood cell count...high fever...

Keith did not have a very good day yesterday. His fever is back up and his white blood cell count has taken a deep dive. Since white blood cells help fight infection, he is now very vulnerable to opportunistic infections so he has been moved to a isolation room.

We don't know where or what the infection is - but the fever tells us there is an infection. This morning his fever peaked at 103, but so far it comes down with Tylenol. An xray yesterday morning signaled the beginnings of pneumonia; we did a cat scan last night and should have results this morning when the doctors make their rounds.

In the meantime, Keith is back on antibiotics and oxygen. He is also on a drug which will stimulate his body to produce white blood cells. This means that he should return to "normal" within 3-5 days rather than the 10 days his body would take unassisted.

While we don't know for certain why we took this tumble, it is likely a result of the combination of drugs Keith has been taking - including the chemo. Temsirolimus (the IV chemo) is a "relative" of Sirolimus which is used for transplant patients to suppress their immune systems and prevent rejection. Not all patients who are on Temsirolimus have this reduction in white blood cells side effect - but it is a real possibility that that drug is the culprit. Additionally, both the steroids and the Keppra (the anti-seizure med that we used during and right after the surgery) are also known to sometimes affect white blood cell production. These may have acted synergistically - or one alone could have caused our problem. Either way, the next few days will be a bit tough.

Two Steps Forward...One Step Back

Tuesday was a day filled with great progress and a few setbacks.

Progress: Both Occupational Therapy and Physical Therapy came by and began to work with Keith in readiness for sending him home. OT is focused on "self-care" - putting on shoes, brushing teeth, etc. Keith is having no difficulties, but must adjust to lifting no more than 5 lbs and not bending down so that his head is lower than his heart. These measures will prevail until the surgery site is completely healed. The most difficult thing seems to be putting on socks and shoes - the feet have to come up rather than the upper body going down! No problems - just different.

PT is concerned with mobility around the house. When they learned we had a lot of stairs, they had Keith walking up and down a flight of stairs. Again, he is weak but he did manage the round trip. We began tapering the steroids and made a swap to less potent pain medication (pill form) - both steps in preparation for leaving the hospital.

Setbacks: After a full afternoon - OT, PT and a few visitors, Keith developed a fever (102.4) and needed pain meds for his headache by late afternoon. We have been monitoring his platelets since the surgery and yesterday his counts started to take another nosedive. He was down to 57,000 by the end of the day and the doctor ordered 2 units of platelets late in the evening. His platelets are under attack in part because of the chemo we did last week and in part because of the high doses of steroids. Platelets are important for clotting - extremely low levels will result in spontaneous bleeding so we need to monitor him closely until he is well into the normal range.

I am pleased to report that this morning his fever is back to normal. We will continue to follow his platelet count during the day. Yesterday there was talk of sending him home today - it seems likely that that will be pushed off to tomorrow. One step at at time....