Deb had her second set of MRI's today.
We met with Dr. Prados today at UCSF. No growth in the Tumor! Deb has been on the
clinical trial drug OSI-774. OSI is an experimental form of Chemo and Deb takes it in
conjunction with her other chemo drug Temodar. Prados noted today that the tumor
may even look smaller in some areas. An area of concern was a small amount of
hemorrhaging that had shown up on the original scans and seems to have grown as
indicated by the latest scans. Dr. Prados will be bringing Deb's case in front of the
UCSF Tumor Board this upcoming Thursday. Until then he has asked Deb to stop the
clinical trial until further notice. We should here back from UCSF by the end of the
Dr. Prados called today and felt it was in Deb's best interest to stop the clinical trial.
There is concern over the area on the scans referred to as "Blood Product". My
understanding is that there is a drug similar to OSI-774 that has in rare cases shown to
be a cause of hemorrhaging. Perhaps it's best....one less poison going into Deb's
We heard back from one of our outside scan reviews (second opinion). This one was
from Cedar Sinai in Los Angeles. It was sent down for review by Dr. Keith Black. He is
"the man" when it comes to cutting edge treatment of brain tumors. Deb spoke with
one of his neurosurgeons who said they recommended fractionated radiotherapy. I
have not had a chance to speak with them yet but we have a new option to consider at
this time. I'm all over the phones today trying to find out more about this treatment .
Will keep you posted after speaking with Cedar Sinai and learning more about their
Spoke with Dr. John Yu of Cedar Sinai. He highly recommends the radiotherapy and
says they have seem "amazing" results with it's use. We are very fortunate that this
treatment is offered over in the East Bay at John Muir Medical Center. We will now
work through UCSF and the insurance companies to get Deb over to John Muir. Deb is
on a real roll ever since she stopped the clinical trial and the OSI-774. She has been
feeling good for the past eight or nine days. So good in fact, that she went running
First off, Deb is feeling great and has continued with her running. I'm working from
home today and plan on taking Deb on a mountain bike ride. SWEET! This will be her
first ride and our first together since the week before she was diagnosed. It looks like
the next MRI will be on the 26th with a meeting at UCSF on the 29th. Until then we are
going to hold off on the Radiotherapy. I've spoken to UCSF about it and they have
some reservations. It also seems that the more research we do the more we find out
about some risks involved. These can be pretty substantial. We certainly want to be
proactive as opposed to reactive but at the same time we don't want to try and fix
something that isn't broken. Deb is doing very well at the moment so we have decided
to get the MRI on the 26th and make decisions based on what we see. Once again, we
live MRI to MRI. These are beautiful days with great weather and lot's of energy
around the house. Deb is herself and I'm loving every minute of it. We continue to kick
this tumor in the butt!
Deb continues to feel well. A bit tired over the past few days but she continues with her
running. Deb took a big step yesterday when she drove her jeep to the store by
herself for the first time since she was diagnosed. Her recovery is evident as she has
expressed interest in shopping for new clothes.....something that she had no desire to
do while she was feeling poorly. Actually, I remember distinctly asking the surgeon at
UCSF to remove the 'shopping' part of her motor strip during surgery...looks like he
Marin Magnetic Imaging called today and told us we had to reschedule the MRI due to
glitches in the scanner. That means we also have to reschedule the appointment we
have at UCSF on Monday, March 29th. A big disappointment. Deb has continued to
feel great so we are all anxious for the next scan. As I've mentioned before it's best to
stay cautiously optimistic. Deb is now completely off of the anti-seizure medication;
Dilantin. She has also dramatically reduced the amount of Decadron (anti-brain
swelling) medication that she takes on a daily basis. Both have numerous negative
side effects so it goes without saying that Deb is very happy with the reduction of
drugs she takes everyday. She continues with the Eastern herbs and supplements to
build up her immune system.
Deb and I didn't sleep well last night knowing we were going in for the results of
yesterdays MRI. It's always a bit stressful anticipating the news. GREAT REPORT
As you may remember, this MRI was scheduled a month early because the last one
done on February 23rd showed signs of hemorrhaging. Yesterdays scans showed the
same 'blood product' but it had not grown and the doctors now feel it's just a matter of
time before Deb's brain absorbs the blood. The absorption of blood and dead cells is a
natural process although it takes time. The tumor has not grown and at the moment is
classified as 'stabilized" We both looked at each other in relief when we heard the
news. The doctor was very happy with the results and feels Deb is doing very well.
Let me give you an idea of how these visits go. We get there on time and an hour later
we are seen. Deb goes through a series of strength and reflex tests of which she has
always done well even when the tumor was in full force. The doctor makes her push
and pull on his hands with her hands. She pushes and pulls with her legs. He wiggles
his fingers off to the sides of her head checking her vision. He watches her stand still
with her eyes closed and she gets to walk the straight line as if she has been pulled
over and is being tested for drunk driving. Her favorite is when he pulls out the drum
stick and hits her in the knees and elbows to test her reflexes. We are thinking about
buying our own stick so we can have fun at home during our down time. Only after the
series of test are done do we find out the results of the MRI. Did I mention they are
posted on the wall all lit up and ready to go during the whole physical? I just sit there
trying to figure out if the tumor has shrunk or grown. It's a long five minutes. The last
test they do is looking in her eyes at the optical nerve. They can determine the extent
of pressure by looking through the pupils. Today the optical nerve looked better than it
had since this all began.
We were kind of at a loss for words today at the end of the meeting. As far as UCSF is
concerned Deb continues on the chemotherapy cycles (next one starts tomorrow) and
we go back for another MRI in two months. Until then.....we just live. It's a strange
feeling hearing them say that because it's not a lot to do considering how serious the
Anyway, that's their plan. I've said it before and I'll say it again. You have to take
control of your own recovery if you expect to beat a tumor like this. Don't get me
wrong. UCSF has been great and done a lot for us. As a matter of fact, they saved
Deb's life. It's just that there is no way we are going to relax until the next MRI and
hope things turn out well. There are no suggestions from UCSF as to what else we
should be doing to beat this. Unless it's been scientifically proven over time then it
holds no merit. They don't tell you NOT to do things other than their treatment but they
don't encourage it either.
That's where we take control. Deb will continue on with her Eastern herbs and
supplements. She will continue her visualizations of the tumor dying and leaving her
body. She will continue massage therapy and periodic visits with healers. She
continues to exercise and eat healthy. Most of all she continues to receive and
appreciate the positive thoughts and prayers that all of you send on a daily basis.
Cruising along until the next MRI and hoping for good results without putting any
energy besides chemo into your recovery is asking for trouble. What do I know? Am I a
doctor? I'm not a doctor but feel like one these days and I simply know that we are not
going to sit and wait for monthly results without being extremely proactive in between. If
I thought frog legs would help Deb she would be eating them daily! This is how you
beat a brain tumor! Probably more than you asked for but it makes me feel better
writing it down.
I almost forgot. We asked about the use of Radiotherapy as suggested by Cedar Sinai.
UCSF feels it would be a last resort option as it can have serious side effects including
paralysis. As Deb is doing so well it just doesn't make sense to do something so
extreme at this time.
Until next time.................
Deb continued on her roll since the last update on 3/30. Feeling good, exercising and
eating well. She started her next chemo cycle on Wednesday, March 30th. Two days
later on Friday we noticed a rash appearing on her chest and back so we called UCSF.
We were aware that a rash is something to watch for. UCSF recommended that we
stop the chemo cycle two days into it and wait through the weekend to see if the rash
cleared up. A rash can indicate an allergic reaction to the Temodar (chemo). It's
something that doesn't always appear in the first couple of cycles as it takes time to
build up in your system. Unfortunately, if it persists it can turn into a real itchy mess
and in most cases one would be taken off the Temodar indefinitely. This made us a bit
nervous as Temodar is one of the most effective chemotherapy's currently available
for a brain tumor.
The weekend came and went and the rash disappeared so Deb proceeded with the
rest of her chemo dose starting on Monday, April 5th. She got through the remaining
treatments without the rash returning. After our visit with UCSF on March 30th Deb was
given the green light to slowly start reducing the Decadron (anti-swelling). By the time
she started this last round of Chemo she was down to 1 mg a day of Decadron. She
had been at 8 Mg's a day only a couple of months before.
It would seem that the reduction in Decadron combined with the latest round of Chemo
are what brought back the pressure and headaches over this past weekend ( 4/10/0).
Saturday was a tough day for her. Similar to the days when she was on the clinical
trial. As of today she is feeling better with a touch of a headache but nothing like the
weekend. She has brought up her level of Decadron to 2 Mg's a day and it seems to
be working. Tanner is spending the evening tonight with Grandma Roth and it gives us
both a bit of a much needed rest.
After eight days of headaches Deb is once again feeling well. We are hoping that she
has turned the corner and her body has adjusted to the lower dose of Decadron. The
past three days have been headache free. We have an appointment with UCSF on
Friday the 23rd for a check up.
Tanner's 10 month birthday! Deb's birthday is Monday, May 3rd. The last visit to UCSF
was fairly uneventful. Deb ran through the routine of push and pull, stick out your
tongue and 'let us tap your knee to test the reflexes'. Naturally, DebShred passed with
flying colors. She was also up a pound and now weighs 1%@. Did you think I would
really tell? The main reason for our visit was the weight check. They use her weight to
determine the dosage for the next round of chemotherapy. Deb starts back on the
chemo tomorrow (4/28). This time she is going without the Eastern supplements as we
try and rule out all variables that may be contributing to her cyclical headaches. As of
today, Deb feels great and she is as beautiful as ever. A tad bit sassy but that's one of
the reasons I married her!
Deb has finished the latest round of chemo with no signs of a rash. No headaches at
this time either. Great news! The next MRI is scheduled for May 11th with a follow up
for the results on May 14th at UCSF.
Ooops! I had my dates wrong. Deb had her MRI today (5/18). We will be at UCSF on
Friday the 21st for the results. She has been feeling great and continues to shine. We
are very optimistic for the upcoming visit.
Great visit today at UCSF. Our neurologist greeted us with a big smile and the news
that Deb's latest MRI scans "looked great". The report: the tumor mass has decreased
in size. There was a noticeable change in the size of the mass when comparing the
latest scans to the ones taken two months ago. With the decrease in the tumor size
comes a reduction in the blockage of the left ventricle. This means the fluid being
produced in the brain is now able to exit into the spinal cord as it should. The result
being less fluid pressure in the head. Needless to say, we are all very happy with
today's visit and feel optimistic that the reports will continue to get better with every two
Sorry it's been so long since the last report. Between work, Tanner becoming much
more active (almost walking) and Deb feeling so well it's been easy to overlook the web
site and focus on other areas of our lives. I realize though how important it is to keep
everybody posted on how well Deb is doing. Another round of chemo ended on June
1st and again Deb is progressing through the cycle without pressure or headaches. As
of the 9th she has started the process of decreasing the dose of Decadron she takes
You may remember that the Decadron is used to control the brain swelling. Deb has
tried to lower the dose in the past but the head pressure returned and she was forced
to increase the dose. We have gone through the process of decreasing the dose a few
times only to raise it again when the pressure headaches returned. Deb will reduce the
dose by.5mg every two weeks to give her body a chance to start naturally producing
what the drug provides. We are always optimistic but this time we are bit more so
taking into account that the tumor has shrunk and we are decreasing the dose at a
very slow rate. The goal is to eliminate the drug all together over the next 45 days. In
turn, Deb can rid herself of the side effects such as a difficulty in sleeping. At the
moment, she takes another prescription drug to help her sleep and it can be
addicting.....sooooooooo....it's time to reduce all these drugs and eliminate them from
her daily routine.
Deb continues with the Chinese herbs designed to build up her immune system and
she has recently done acupuncture as well. She is also out on the trails running quite
a bit. I think she has run four times this past week. She is fast and she runs far......can
you say DebShred?
As always, we thank you for taking the time to check out the web site and send you
loving messages. I'll try and keep you posted on a weekly basis from here on.
Hi everyone. A quick update for you. Deb had her bi-monthly appointment with the
optometrist last week. She has been visiting on a regular basis since ending radiation.
In short, the purpose is to check for pressure on the optic nerve that may result from
the tumor. The outcome of the latest visit? Dr. Shin says Deb "should be a clinical
study as to how far she has come and how well she is doing". He couldn't say enough
about her progress since the first visit some nine months ago. Today, we have yet
another appointment with the neurologist as Deb prepares for the next round of
Chemotherapy. Once we leave the Neurologist we are off to Novato Community for
blood tests. If all checks out then Deb will start her chemo tomorrow (6/23). Deb has
dropped another .5mg's of Decadron as of yesterday (6/21). The latest reduction so
close to a new round of chemo will keep us 'watchful' as the cycle progresses. Overall,
Deb is doing very well. She's been on me all morning to join her for a run this
afternoon. She's getting a bit cocky so I may just go only to keep her in line....(Update
1 hour later). I went running with Deb and all I saw the entire run was her backside and
the cut of her calf muscles...I'm going to need a little secret practice if I plan on keeping
Deb has completed the five days of taking her chemo drugs. She has exercised daily
while taking the Temodar to get her blood circulating and the Temodar up to the
tumor. She is feeling fine...perhaps a bit more tired now that Tanner is walking.
Deb continues to feel great. Her next MRI is on July 21st and we will be at UCSF on the
23rd to hear the results. Both of us are very excited to hear more good news like that
of the last MRI. Deb is now down to .5 mg's of Decadron a day and will finish with that
drug all together the week of the MRI's. At that time, the only drug she will be taking is
the Temodar (chemotherapy). There is no doubt she will beat this tumor. Her strength
and determination are unbelievable.
The results from the meeting on the 23rd at UCSF were once again very positive. The
word for the day was "stable". Deb and I were perhaps a bit disappointed that the
scans didn't once again show that the mass was smaller but the reality is that it takes a
great deal of time for the brain to absorb dead tissue. We left UCSF with the feeling
that a good portion of the mass was indeed dead tissue. Time will tell. Regardless of
the scans Deb is doing beautifully and feels great. She is now completely off the
Decadron and is trying to wean herself from the sleeping pills that were necessary
while she was on the steroids. One big piece of news was that Deb may stop Chemo
as soon as October. It's good news but a bit scary at the same time. UCSF tries to get
you off the chemo after 12 months if your condition is stable. Like antibiotics to cold
germs, they don't want the tumor cells to continue on the chemo drug to the point that
they adapt and make the drug useless. If Deb does come off the chemo (which is
likely) then we will cruise along with MRI's every two months and simply monitor the
tumor. If the tumor wakes up she will have to go back on the Temodar. From a selfish
point of view I hate to stop the chemo and give the tumor a chance whatsoever. We will
have to make the decision when the time comes.
Deb is just back from a run as I write this. She is looking and feeling great.
This week we will meet with one of our Neurologists as Deb gets ready for the next
round of chemo. She did blood work this morning and assuming the blood counts are
where they should be she will start the next round of chemo on the 23rd of this month.
Not to much more to report other than that. Life is good!
Great report! September 20th will mark one year since our lives changed a bit. Deb
and I went to UCSF today for the results of the recent MRI. For the first time since we
have been meeting on a bi-monthly schedule we were able to notice a significant
improvement in the size of the mass. It was evident when comparing the latest films to
the film taken two months ago that the tumor has decreased in size significantly. The
swelling around the area of the tumor is gone and the ventricles are clear and open.
This is made more significant by the fact that Deb is no longer on the Decadron. You
may remember that the Decadron was being used to control the swelling. In fact, Deb
is off all medications outside of the chemotherapy. This includes the sleeping aids as
well. Because of her great results it's projected that she will stay on chemotherapy for
two more cycles and then stop that as well. What more is there to say? We are ecstatic!
I think I mentioned in the past that I knew Deb was getting better when she regained
her urge to shop. Naturally, after such great news we did just that to celebrate. That
was followed up with some sushi and than a swim at "The Club".
"The Club" refers to the Rolling Hills Health Club of which we have just joined. The
inside joke around the house is that we will be going to "The Club" because it sound so
snobbish. In actuality, it's a great place and it offers Deb new activities such as
swimming, spin-cycling, a fitness center and a ton of classes that she can use to keep
her strong and healthy. We really feel that Deb's ability to exercise has contributed
greatly to her ability to kick this tumor in the rear.
It needs to be noted that the factors contributing to her recent success are vast. The
main factor being the love and support she has received from all of you reading this
update. I'm not sure it's possible for a person to give up fighting when they are
constantly reminded about how much they are loved and just how many people are
pulling for you. The messages Deb receives through the web site are powerful and
motivating and I would personally like to thank all of you for taking the time to send
Deb your encouragement. I'm not sure if you actually realize what a difference it makes.
There are other factors such as a complete overhaul of her diet, the compassionate
care she receives at UCSF, the addition of Eastern herbs and supplements to help
build her immune system, massage and visualization. Naturally, we can't forget our son
Tanner. He is not mentioned last because of a lack of importance. Deb lives for
Tanner. He's an amazing little guy whom we truly believe knows what his mom is going
through. In knowing that, he does everything he can to make us laugh when we need
to. He alone is a huge reason for Deb to win and she will. Things feel really good right
now and we truly believe we have the upper hand at this point. Thanks again for your
support. It's made a difference.
This last round of chemo was a little tougher on Deb than the previous cycles had
been. From what I can remember this was the first time since she started
chemotherapy that she truly felt nauseas and uncomfortable. We had discussed with
UCSF the possibility of stopping the chemo all together in the near future. UCSF
prefers to stop the chemo if one is considered 'stable' after a years time. Taking into
consideration the fact that Deb had handled the treatments without issue over the past
11 months perhaps her body is in agreement with UCSF and is simply signaling that it
is time to stop with the chemo treatments. As of today, Deb is fine and feeling great
once again. Chance are she will endure one more cycle of chemo and call it quits after
that. She continues to exercise regularly by swimming, running and attending yoga
The past month has flown by and Deb continues to do very well. She is busier than
ever with Tanner. As one might imagine, at 16 months old he is everywhere and raring
to go in all directions at once. Deb is indeed "Supermom" and keeps up with his every
We had a bit of an adventure since the last update of 10/10. Deb was supposed to
start the latest round of chemo on October 15th. She went through the standard
procedure of getting her blood tested before starting the round as she normally does.
This time the results of the test came back indicating that both her red and white blood
cell count were dramatically low. I was in Las Vegas at the time for a trade show when I
received a call from Deb letting me know that their were issues with her blood count
and that our Neuro-Oncologist wanted Debbie to immediately start with self injections
of a drug called Neupogen. Naturally, I was caught off guard and could not believe that
Deb would have give herself shots.
This is a rather lengthy story so I'm going to provide the condensed version. Under
doctors orders, Deb deferred her chemo cycle for two weeks while she gave herself
shots and continued with frequent blood tests hoping to see an elevated count of red
and white blood cells. At about the two week period I could tell Deb was getting a bit
stressed out about not being on chemo. Understandably so, as the results have been
so good that any prolonged interruption was a bit of a concern. At that time, I decided
to get on the phone to the doctors office and learn a bit more about what we were
trying to achieve with these shots, how long they would go on for and what we would
do if they cell count did not return to a satisfactory level? I was told that Deb's Absolute
Neutrophil Count (ANC) was at 200 and needed to be over 1000 before she could
once again start chemotherapy.
At this time I asked Deb to fax me the current blood test results (I was at work). Once I
received them I went online and educated myself on how to read and understand the
blood test results. I also educated myself on how to calculate the Absolute Neutrophil
Count, which I did. The blood test I calculated showed an ANC of 1539. Being
confused an concerned I placed a call to the doctors office once again. I was met by
quite a bit of push back from the doctors nurse who felt I had no place questioning her
diagnosis as "It takes years of training to calculate a patients ANC." I told this nurse
that it was my wife's health we were talking about and that I would continue to call as
long as there were questions about the current condition and the difference in the
results we seem to be getting regarding the ANC. I told her I wanted a call from the
doctor to explain what was going on. Here is where I cut out a lot of the story. Later
that Day Debbie received a call from the doctor who apologized. It seems she had
been calculating the tests incorrectly and Deb's ANC was indeed 1539 and not 200.
She pointed out that it was only the last test in that an error had been made. As of
today, I have reviewed all the tests and not one produced an ANC lower than 1100. It
would seem the doctor was wrong from the start. I'll have my calculations reviewed
upon our next visit to UCSF and then decide how to proceed at that time. There you
Deb is now doing well and we are all happy to have that fiasco behind us.
Deb and I were at UCSF yesterday (11/23) for the results of the MRI she had done the
previous day. The results were not what we expected. The latest MRI showed a small
area of growth in an area where there had been nothing two months ago. The results
over the past six months have been very positive so Deb and I were both a bit taken
back by the recent findings.
Yesterday was a tough day but now it's time to move on. Next week (12/2/04) Deb will
be back at UCSF for a PET scan. During the PET scan Deb will be injected with a
radioactive glucose (sugar) prior to the exam. Many cancer cells are highly metabolic
and therefore synthesize the radioactive glucose (sugar) that is injected. The areas of
high glucose uptake are displayed in the scan imagery, as opposed to the anatomical
imagery of CT or MRI, which cannot detect active, viable tumors. This test should give
us a clear picture of which cells within the entire tumor mass are alive or regenerating
and which ones are simply dead. Why didn't we do this six months ago?
This latest 'blip' on the radar could be cell regeneration but it can also be dead cells
that have breached the blood barrier around the brain. A couple of different folks at
UCSF told us that some odd things can start showing up on the scans eight to ten
months after the initial radiation.
OK, so it's not the news we wanted the day before Thanksgiving. It is what is and now
we just deal with it as we have done with everything in the past. Deb continues to feel
great. She did her first spin cycle class this week and now she has a new sassy hair
dew to compliment her 'kick butt' attitude. She is strong and simply awesome. I'll
update the web site as soon as we get back from UCSF on December 2nd.
Deb's PET scan went smoothly and the results indicated nothing "new or suspicious" in
the area of the tumor. The new mass that showed up on the November 23rd scans are
thought to be dead cells that have migrated.
Deb has now started on what I believe will be her last cycle of chemotherapy. She will
be back at UCSF in a month for a spectroscopy. As far as we are concerned the more
tests the better if it gives us a clearer picture of what's going on within the tumor and
perhaps the option to be proactive instead of reactive.
Deb is still on track and beating this tumor. Thanks to all for the messages of support.
Click here to continue....