Blogging in B Minor

My current (new) chemotherapy cocktail as it were which is all IV-based and consists of Irinotecan and Avastin is definitely much harsher than Temodar.  As you might know, Irinotecan (also known as CPT-11) was folded into the mix on Wednesday.  At first my side effects were ok well into Thursday and I exhibited none of the gastrointestinal issues.  The fatigue was the most significant sympton and was really on par with Temodar – at first.  Remember, everyone is different so this is just my personal experience. 

On Thursday night, I slept hard after going to bed at around 7pm.  I did get up at 8:30pm because of the situation with Dakota and after that was in bed at 10pm I think.  On Friday, however, I was really tired and left the office around 12:30pm.  I got home and went to sleep around 1:30pm and slept to 3:30, was up briefly then back to sleep until 8, up and ate something then slept for 12 hours.  I was up on Saturday morning briefly and had an egg and toast then slept again until Noon.  Had lunch, back to sleep until 5pm.  I got up again to eat, then back to sleep around 7pm for the night and got up this morning at 8am.  You get the picture.  Geez. 

So, I feel like I’m on the other side of the fatigue.  I did also have some of the other side effects starting late Friday but those are also passing.  My next infusion is two weeks from last Wednesday then we’ll cut the Irinotecan which is what has caused these side effects and start the vaccine.  That will be the end of the first week of February or so.  I’ll have blood work done to ensure I don’t end up lymphopenic. 

No cakewalk at all but another mountain to climb.  It’s always hard on the family too when you are down and out for 3 days or more.  Carrying the entire load isn’t easy so there is that added component. 

More later – just going to rest up and take time so I can work – want to keep that rolling.  I’ll post as usual so those of you heading down this road no at least what all of this is about.  Again, this is just my first experience with this chemo.  Most have fatigue but it varies.

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Yesterday was a tough day for our family.  We lost our black lab Dakota.  We have two labs – a blonde and black, Bailey and Dakota.  They were the best of friends.  We first had Bailey, our blonde lab back in 2000 and he was about 2 years old – we rescued both of them.  We got Dakota about a year or so later.

Dakota was a true retriever.  When we lived in Southern California and took him to the beach, we would throw a ball past the shore break and he would just sprint out into ocean, dive under the shore breakers and grab the ball.  This guy would bring it right back, drop it at your feet and look up at you ready for more!  He had no fear and was built like a rock.  We took him down to a creek once that had a deep pool at one point in the creek.  There was an overhang looking over the pool that was about 6 feet high over the pool.  We thought “he won’t jump from there will he?”.  We knew the pool was safe because it was so deep.  Once the ball came out and he knew what we were doing, he just walked right up to the overhang ready to go.  The ball went in and he was flying through the air!  What a dog! 

The other story I really remember about Dakota that showed his toughness is Aidan threw a ball in the backyard and Dakota turned around and started running – he ran right into an aluminum column that supports our patio cover.  It bent the entire column but didn’t phase Dakota.  He got the ball and came back to drop it at Aidan’s feet.  And then there was the laser light!  He would chase my presentation laser incessantly.  Bailey could care less!  Not Dakota – he would go for hours if I let him.  Run it up the wall, on to the ceiling and he would just stare it down.

We are sure going to miss him.  I’m going to spare all of the details because I want this post to be happy.  He was a great a dog with a wonderful personality.  He wasn’t the type of dog that was a “curl up beside you” affectionate dog but he probably could have been a drug dog and was definitely a retriever.  Our son Aidan loved taking him in the backyard so he could “watch him skateboard” and Dakota and Bailey also loved to play together.

Dakota, you were one great dog and we know you are in a much better place with God now – your quality of life here would not have been good and you can now run forever, jump over fences, into pools and do so many things that we can’t even begin to conceive.  I wonder what you’re doing now but I can’t help but think that you’re carrying something in your mouth (maybe a worn out tennis ball) and running as fast as you can.

We will always remember the good times that we had with you, the great brother you were to Aidan, Bailey and Keegan and the laughter you brought into our home for so many years.  I think your buddy Bailey also would say the same types of things if he could talk.   He spent a lot of his time with you, and one day you’ll both see each other again and can curl up on the floor and you can beat him to a ball on the grass – which won’t be very hard!

We’ll never forget you buddy….

Love, Mark, Rachael, Aidan, Keegan, Telli the Cat and Bailey xoxoxo

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It has been a few days since I’ve posted – there has been so much going on.  All of these starts and stops were driving me crazy with the Chemotherapy.  The lab, of course had to make sure they had enough white blood cells from the leukopheresis process so they can make enough vaccine.  They did a 0-day check when they received it and then they had to do a 7-day check.  I was all queued up for a week ago Monday but given it was a holiday we never heard on that previous Friday.  I found out at 11:30am that Monday that it was off – 30mins before I was to start!

So, we thought we’d find out surely by the end of last week.  Nothing.  This is so par for the course.  Meanwhile, I’m getting nervous again because I have a GBM and time is passing.  The short of it is we finally received confirmation on Tuesday and carried out the infusion on Wednesday.  For me, adding the Irinotecan didn’t produce too much of a gastrointestinal issue – this seems to be a big deal for many patients.  However, fatigue has really set in today – moreso today than yesterday.  Other than that I’m doing ok so far.

 I’ll have the same infusion in 2 weeks and then we’ll hold treatment and obtain the vaccine.  Unless something happens (and who knows here), we’ll then start the vaccine treatments in conjunction with Avastin most likely.  It seems like a logical combo.

More to come very soon.

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Yesterday’s appointments went fine.  I was able to understand a lot more about the vaccine research protocol which is great.  The short of it is we should know by the end of this if enough white cells were collected during the leukapheresis process that took place last Thursday, the 8th.  They do a 0-day check when they receive the package and then another check at around day 7.  So, we are holding the Avastin + Irinotecan infusion until next Monday, the 19th assuming we find out that the cell collection was sufficient.  By the way, they have never had a case where they were short on white cells so this should be ok.

After the infusion next Monday the 19th, I will likely have another on Monday, February 2nd and then we will hold treatment because we are targeting the start-up of vaccine treatment on Monday, February 16th.  I have a calendar that spells out everything involved.  It’s once a week for a month, then every other week for a month, then monthly up to 2 years.  I will have MRI’s every 6-8 weeks, a CBC before each treatment and a checkup each time I’m in the office for an injection.  We will couple the use of the vaccine with Avastin – and we have talked about using, perhaps, a light dose of Irinotecan.  This will all depend on my lymphocyte count.  We will also measure by absolute neutraphil count. 

All in all, with chemotherapy, it’s a cocktail approach.  Anyone who has read Ben Williams’ book knows that he hit his GBM with many different agents to keep the tumor “guessing” as it were.  So I will be a test tube in many ways and we will just strike balances and then look at MRIs and also, of course, me – do I become symptomatic of not during the treatment process.

Yesterday was good.  I received more information than I have all along about the process and in spite of the delay which we can’t change (it’s part of their process and we just didn’t know about it – and it’s required by the FDA), we now have firm dates.  There is a 5% chance of the vaccine being contaminated but chances are this just won’t happen. 

Aside from all of this, I have been more fatigued than usual.  I spoke to my Neuro-Oncologist yesterday about the fatigue yesterday and she said:

1. You have had several Avastin infusions and it’s a drug that is in your body and is fighting the tumor. 
2. In spite of Avastin causing fatigue, your body itself is putting all of the energy it can in fighting the tumor so you don’t have a lot of “extra energy”.  The tumor is essentially a foreign object and your body is trying to rid itself of it.  What extra energy you have you are working and doing some things at home

I went out to a few boards just to see if others experienced this same side effect because if I can do something about it I’d like to.  Even in Physical Therapy last week I was pretty hashed and only did the electrical stimulation on the tendon in my left foot.  Well, I found out that I am far from being alone – there were a number of posts like this one:

======================= 

Subject: RE: Extreme fatigue after Avastin treatment
Date: 02/16/2008
Dear Barb,

I spoke with our Duke doctor, Henry Friedman, today regarding Mom’s fatigue.  He confirmed that the Avastin can cause extreme fatigue.  So, after determining that Mom has never had a seizure, he decided to prescribe Ritalin. Ritalin is a med that is typically prescribed for kids with ADHD, but it acts as a stimulant in adults.  He is hoping that the Ritalin will counteract some of the fatigue.  Perhaps you can ask for the Ritalin for your husband too.

We can’t get the Ritalin filled until Monday when we can pick up a script from our local MD (it is a controlled substance, so the script cannot be phoned in), but we are hoping that it will help her gain some energy for the next few Avastin treatments.  Mom has always been such a fighter, but she is so tired now.

Wishing all of you the best always,

Nina

======================= 

Well, Henry Friedman is certainly one of the best in the country – and the drug label for Avastin even says “extreme fatigue” is a more common side effect.  As far as my fatigue, I won’t be taking this advice and using a pill to feel better, particularly Ritalin!  I’m just working through this like I did with Temodar.  My challenge as it was when I was on Temodar is being physically “up” when I feel so drained.  When people ask me how I’m feeling, I understand that “tired” isn’t the best answer.  At the same time, “fantastic” isn’t true.  So, it’s a balance.  When I was taking Temodar I slept quite a bit so perhaps I need to slow down a little bit – not sure. 

For those of you on treatment, you can attest to this and know what I’m talking about.  You just feel how you feel and there is nothing you can do about it.  I try to push myself but when I do too much, I become really tired and at times have had seizures so it’s kind of a catch-22 until you find a balance.  Quality of life is important but at this point I am doing fine – certainly well enough to laugh and enjoy my kids, have dinner with a group of people, get my work done, etc.

It’s just part of having a brain tumor and only you know how you feel – just like those around you that don’t have one know how they feel because they, too, are affected by your diagnosis.

That’s all for now – will keep everything up to date here….

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POST UPDATE:  Infusion moved to next Monday, January 19th.  I received a call and Northwest Biotherapeutics has to confirm that they received enough cells.  Therefore, if we start Irinotecan today, we could hammer the marrow and cells and if we needed to take more we wouldn’t take very good cells.  So, once again, why didn’t anyone know about this!  I am just frustrated.  I finally felt like they were getting on top of this and unfortunately I can’t get do anything about this.  I can’t get on the phone and call Northwest.  They won’t give me the protocol (it’s priviledged and confidential).  I can’t force people to hold conference calls and I have too much time invested to jump ship – and this isn’t enough frankly to force something like that.  But I am very frustrated because this not only delays Irinotecan but also pushes my planned Avastin treatment out a week so it will be 3 weeks between treatments – again, not good for a GBM patient!  Pray and turn it over is all I can do.

== END OF UPDATE ==

Today will be a long day but will also allow me to walk through a new experience which is always good.  As with anything new, particularly chemo, surgery, etc, there is a certain level of anxiety that comes along with it.  I remember when I first started on Temodar, or radiation, or my first craniotomy – I read about the side effects, the impact on one’s body, etc and felt anxiety as most do.  So, with Irinotecan (or CPT-11), I do feel some anxiety but for me it’s mainly due to a few things.  1) I’m moving from an “oral” chemo (Temodar) to IV-based and it’s much more potent.  The primary side effect is documented as extreme immuno-suppresion.  Well, like any drug, they have to document the worst-case.  Gastro-intestinal issues are also a big problem as they are with Temodar (I didn’t experience any – I just made sure I had a routine that worked for me so it may come down to that.  My other concern and it’s the most significant is 2) the impact this will have on my use of the DCVax vaccine that will be available at the beginning of February.  The same lab work parameters that I must stay within to use DCVax were never breached while I was on Temodar so that makes me feel more comfortable but this is a more potent agent. 

So, stay in today!  Today is a long day however.  My schedule is as follows:

1. Working from 6:30am until about 11:00am
2. Arrive at the Infusion Center and undergo the Avastin + Irinotecan infusion from approximately 11:30 until 1:00pm
3. I have a bit of a break which will be great – grab a bite to eat and then it’s off to the Hematologist’s office (the doctors who will be handling the vaccine portion of my treatment) for a 2:30pm appointment.  This appointment will likely take an hour so I will get out of there at 3:30pm.
4. Leave there and head over to my Neuro-Oncologist’s office for a 4:00pm.  Based on experience, this appointment will go for an hour and a half so I am finally finished at 5:30, just in time to jump into traffic for my 20 mile commute home! 

I will be getting a lot done today and will educate myself.  Not only the infusion but also the days following because as you know, there is a lingering effect.  Needless to say, I will be going to bed very early tonight! 

If you think about it, I could use the prayers around the new chemo – that all goes well, side effects are minimal and that my body takes to it well and starts healing the tumor.  I have already seen the Avastin make a difference so adding this agent could also make a significant difference.

Thank you!!

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One additional bit of information – and uplifting for me so the timing was great.  For those of you that follow the blog, you’ll recall that a fellow blog reader (and brain tumor survivor) became inspired by River of Faith and the site.  She is heavily involved in her church and handles the woman’s conference every year.

She decided to call the Women’s Conference in October of 2008 “A River of Faith” and wanted each woman attending the conference to have a copy of the CD and a lyric sheet for the song River of Faith.  We worked out a special run of CDs and just made it happen.

Anyway, she was kind enough to share the backstory with me in terms of how all of this came about and I wanted to share this with you.  When I see my music and journey as a brain tumor survivor helping people, it is so satisfying and just reinforces how God is using me.  I’m just an instrument in this whole plan.

Here are her words:

I had been having terrible headaches, dizziness, and problems with my legs. I felt like my knees were going to buckle as I felt like I was losing control. An MRI of my brain showed a problem with the Pons area. This is not something that can be fixed. The options are that it may stay stable and not change, or it could begin to flare up and grow. If that should happen, then life as I know it now will change.  At this point things are stable.

The day we went to the doctor’s office I grabbed hold of the door and as I did I heard ‘ Princess and the Pea ‘  - right then I knew that my problem was something hidden deep inside and nothing could be done. It was like God was saying ‘ this problem was as small as a pea, but you are a Princess of the King ‘.  After receiving the news, I went back to work, yes, that same day as my manager was not about to offer to work that last few hours of the day for me.  When I got home I had a short conversation with my husband and then I sat at the computer surfing the internet wondering what to do and wondering about the next woman’s conference.  The questions in my mind were ‘ would I be around for another conference? Is this going to grow fast ? ‘ etc…

I have no idea how I came across your web site. The only answer I have for that is that God Himself put your site in front of me. I listened to your music and your song ” River of Faith “  stood out in bold and I knew right away that this was to be the theme for the next conference and that the conference would be my last one. I’ve had some pretty dark times, but I believe this may have been the darkest as I sat there wondering what was to become of my family. Your music is a reminder that we all live on a river that has all kinds of turbulence, but God guides us and He’s there even if we feel lost. It’s those times we surrender all and He can speak to us and use us.

A number of ladies have told me how much they like your songs. The songs really minister to them and no matter what their situation, your songs have spoken what they have felt and has made them realize it’s ok and to keep trusting God, no matter what. Others have become closer to God – they are reading His words more and praying more. Still others are not as angry or blaming in a situation – they remember your songs and  thank God for being with them and guiding them.

I would like to thank this reader for sharing this with me.  The feedback always inspires me and adds just a little bit extra to keep everything going.

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Happy Saturday – Third post in three days.  Lots happening. 

This will be a very quick post.  My Neuro-Oncologist called last night with some pretty good news.  She spoke to the Medical Director at Northwest Biotherapeutics and I will be able to use Avastin with DCVax-Brain and can even fold in irinotecan (CPT-11) if we’d like to.  The caveat which is fine is that we must stay within certain parameters with my ANC absolute nutrophil count.  This is something that is monitored like a hawk anyway.  So, I have to make it this 4 week period while the vaccine is tested for contamination, etc. but that means 2 infusions of Avastin (which I have been taking) and irinotecan now folded in.  Now praying for a) no growth and b) that my immune system stays strong.  I am very happy about this but also because for the first time, a doctor (and it’s my doctor whom I’ve been seeing for two years and trust) pulled all the information together – picked up the phone and talked to Northwest, another company Congate, the Hematologist group, etc.  Thank you for that!  She was caught in the middle politically because everything was handed off to this other office so if she started doing all of this it would be viewed as her “taking over” but she finally just did it and I was very grateful.  Politics.  So sad.

No one has used DCVax Brain, that I am aware of, using the combo of Avastin + DCVax or CPT-11/Avastin + DCVax.  Avastin + DCVax seems to be an excellent combo based on all of my reading.  So, this is all good news in my view.  Can’t change the quarantine period so we’ll just go with the route we placed upon.  Much more to come on Monday because the first Avastin + irinotecan infusion, presumably, will be on Tuesday afternoon.

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Interesting story from Newsweek.  I donated tissue for research by Charles Cobbs as part of my last surgery.

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Alright, get ready for this.  Now my patience is running thin.  This post will not only serve as an update but will also be therapeutic for me just by dumping it out.

First of all, I completed the leukapheresis process yesterday.  I arrived at 8am and left at 2:00pm.  The actual process lasted approximately 4.5 hours.

For those of you who haven’t caught up or are new, this is a necessary process to create the DCVax vaccine, a new vaccine being used to treat glioblastoma multiforme.  Blood is pumped via a very large steel needle in one arm, into a machine called a centrifuge that spins off your white blood cells and places them into an IV bag.  The blood is then returned to your body via an IV in the other arm.  Basically, you can’t move the arm with the rigid steel needle for the entire process – it’s essentially strapped down because if you bend it, the needle can pierce through the vein and/or skin.  The other arm is free.  Once the quantity of white blood cells are collected, the collection bag is sent (in my case) to Northwest Biotherapeutics (the maker of this vaccine) via overnight delivery and will processed.  From the white blood cells they will extract what are called dendritic cells, which are antigen-presenting cells (T-Cells) and will be combined with my tumor tissue that was taken at the time of surgery to create the vaccine.   Sorry for the technical explanation but if someone ever undertakes this process, this post will be here and save those individuals some time in researching the details.

So, this is great – I finished the process.  Remember, it takes 7-9 days to complete the manufacturing of the vaccine so I’m planning to have this a week from now or perhaps a week from Monday at the latest.  HOWEVER, two nights ago I received a telephone call from my oncologist on Tuesday night.  This is where everything went sideways, again.  She called and sounded very frustrated and I asked what was going on.  She said that my other doctor (the doctor who is coordinating the injection/vaccine process and is new process) received a call from Northwest indicating that once the vaccine is manufactured it must be placed in quarantine for 4-5 weeks for testing – testing for infectious disease, contamination, etc.  What?!  Another delay??  For a month???  This pushes it out to 6 months post-op and for a GBM patient that is an eternity  I was completely dismayed, particularly given some of my previous discussions.  Also, this brings up a multitude of questions – completely new set of circumstances.

For starters – and yes, it is water under the bridge, but when I met with the doctor coordinating the process, I had specifically and very humbly asked that a conference call be scheduled with the doctors on this end and whomever necessary at Northwest to a) discuss the research protocol in detail so we had a complete and detailed understanding and b) had a complete understanding of the remaining steps necessary, from A to Z, of the vaccine manufacturing process and when we would have it.  Obviously this never happened or we would have known, in the first week of December, that a week after the leukapheresis I’d be waiting another 4-5 weeks for this quarantine period to end.  As a GBM patient where every day counts, this is completely unacceptable.  I’d say that if this were their family members, a conference call would have been held pronto.  It’s a new doctor and my team has been excellent to this point but the ball was absolutely dropped.  And honestly, if the information didn’t matter and would have no influence on my treatment that would be one thing, but to me it did matter and there are several reasons why beginning with the opportunity to have a strategic discussion regarding my treatment plan which we were never able to have because no one could pick up the phone and find out about this.  Now, perhaps it was Northwest, I don’t know, but someone dropped the ball.  So, there are now ramifications to this.

1. If I knew about this in early December, would this have changed our approach?  Would we had added another agent in addition to Avastin?  Not sure (read on).
2. Now that I have to wait another 5 weeks, it’s a foregone conclusion that I will have add another agent on top of Avastin – most likely CPT-11, more commonly known as Irinotecan.  Irinotecan results in extreme immuno-suppression but combined with Avastin the two have yielded great results for some.   The MRI scans shown here are of a 75 year old woman with a GBM. The first scan was taken prior to beginning Avistan/CPT-11 and the remaining scans show the progress over a 12 month period. (She generously released these scans to virtualtrials.com for informational purposes.  Credit is given to virtualtrials.com as they are the source of this information.  Of course these results are not representational of all individuals treated with Avistan/CPT-11 but do indicate one individual with a very positive outcome.  So, it isn’t all bad, God has a plan and I have to trust in that but we have come way to far – on the cusp of obtaining the vaccine, to have this just slip away
3. If I use Irinotecan, does this preclude me from using the vaccine?  Meaning, does the research protocol indicate that I can’t do this.  There still seems to be confusion about the protocol, another issue.  I’m in the corporate world and I can’t stand disorganization.  Why is there still confusion here!  So, I’m getting my hands on a comprehensive doc today.  I have it in consent form but not a in-depth document.  I’ll figure it out myself and see if I can’t help guide the process.  Again, you have to be your own advocate.  This way, I can make the calls and say, for example, “yes, we can do this so let’s set it up”.

There are lots of other questions but suffice it to say that I’m not too happy.  However, this is where acceptance and trust come into play.  This happened on Tuesday night so yesterday and last night I wasn’t in too great of a mood but I’m slowly getting a bit better.  And, I found this great piece from some time ago and am just going to paste it here.  I can’t recall if I put it in a post from before but it’s an appropriate end to this post.  Sometimes nothing is easy but it’s all part of His plan and I have to remember that – have faith.  It doesn’t mean this hasn’t upset me – I was NOT happy about this.  I had this delay that no one saw coming waiting for a “slot” that didn’t come until January and now this – my surgery was in October so it will be SIX MONTHS post-op by the time I have the vaccine.  Well, with a GBM you might know the “stats”.  But, again, TRUST.  FAITH – HEBREWS 11:1

YOU SAY:  “It’s impossible.”
GOD SAYS: “All things are possible.”
Bible verses:  Luke 18:27
YOU SAY: “I’m too tired.”
GOD SAYS: “I will give you rest.”
Bible verses:  Matthew
YOU SAY: “I can’t go on.”
GOD SAYS: “My grace is sufficient.”
Bible verses: 2 Corinthians 12:9; Psalm 91:15
YOU SAY: “I can’t figure things out.”
GOD SAYS: “I will direct your steps.”
Bible verses: Proverbs 3:5-6
YOU SAY: “I can’t do it.”
GOD SAYS: “You can do all things through Jesus who strengthens you.”
Bible verses: Philippians 4:13
YOU SAY: “I’m not able.”
GOD SAYS: “I am able.”
Bible verses: 2 Corinthians 9:8
YOU SAY: “I can’t manage.”
GOD SAYS: “I will supply all your needs.”
Bible verses: Philippians 4:19
YOU SAY: “I am afraid.”
GOD SAYS: “I have not given you a spirit of fear but a sound mind.”
Bible verses: II Timothy 1:7
YOU SAY: “I’m always worried and frustrated.”
GOD SAYS: “Cast your cares onto me.”
Bible verses: 1 Peter 5:7
YOU SAY: “I’m not smart enough.”
GOD SAYS: “I’ll give you wisdom.”
Bible verses: 1 Corinthians 1:30
YOU SAY: “I feel all alone.”
GOD SAYS: “I will never leave or forsake you.”
Bible verses: Hebrews 13:5

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So we are opening a new chapter now.  To cut to the chase, the MRI is good and “ok”.  The “ok” part is there is residual tumor – not a lot but there is some at the bottom of the area shown on the film.  We believe it’s been there since surgery – it’s not recurrence at all.  The good/great news is what we suspected.  The whole area has really shrunk down.  Like I noted in the last post, that ventricle in the center of my brain that was so collapsed under the pressure of swelling is now in great shape and all of the edema present from the 10-16 scan is really shaping up – and the tumor cavity itself has collapsed upon itself which is what naturally happens if all goes well. 

So what does all of this mean?  For one, it means that I’m responding better to Avastin than I ever did to Temodar.  Temodar for one is a different drug – it hammers your bone marrow / immune system and I eventually had to come off of it after 7 months because I kept getting sick.  Secondly, it only “managed” my situation.  It didn’t grow but the tumor also didn’t shrink.  At all.  Once I came off of it for good which was around July / August I was in the OR in October as it took off from August to my scan in October.  Again, it only managed it.  So, given Avastin is good for me and I have the vaccine nearly in my hands (it will basically be a week from this Thursday), Rachael and I have decided that we will take the cocktail route – Avastin Infusions + DCVax Brain vaccine injections.  Of course the few that have been in the vaccine trial have done this by using the vaccine with Temodar but this seems counterproductive to me.  Hey, I’m just a patient, not an oncologist but if your immune system needs to be strong and Temodar tears it down, using them together as opposed to Avastin + DCVax seems like the second choice for me.  My oncologist told me there isn’t any data regarding the use of Avastin and DCVax.  Guess what, we don’t have any data on a lot of this!  Even with the other approach there have been some 200 people?!  So we are going to blue sky some of this.  I really have nothing to lose and a lot to gain.  If something goes sideways, then we will sit down and address it.  I’m still going in for MRIs and we’ll likely tighten them up to every 6 weeks to make sure we absolutely on top of this.

So, leukapheresis on Thursday for 4-5 hours, another Avastin infusion a week from today and then, God willing, the vaccine a week from this Thursday….will add updates here as usual.

Cheers,

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