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Things do not change; we change.
- Henry David Thoreau
Jun 15

Hospitalized

Complications, Medications, Nutrition 4 Comments »

Beginning last Thursday, I started experiencing flu-like symptoms. I did the best I could to get myself on my feet again io until last night (Sunday) but ended up going to Sutter Roseville Medical Center and was admitted. After being unable to ingest oral meds, let alone the limited food and fluid intake, this was the right call. Among other concerns I had was my inability to keep down oral anti-convulsants and the risk of seizures.

I was finally in a room at midnight. The good news – CT scan appears stable!! I would have ordered an MRI because there are no other comparison CT scans but it gave us a sufficient look.

My aim is suppotive care here. This is likely a virus. So, hydration, get food back into my system, meds back on-boardand basically get the car running again are all part of the plan

More to come. This will come to pass. Have to solve the ptoblem

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May 26

Update

Medical Updates 2 Comments »

On a lighter note, Keegan and I snuck into a State Dinner a few nights ago. He told me that between “Monkey” and “Lion” he’d have no problem lobbying against some of the hard-core special interests represented in the room. He was right. Monkey did a good job with healthcare and we should be seeing some changes that the people want.

Here we are:

Keegan and Dad at State Dinner

Sorry I haven’t posted for awhile! The last two weeks of our lives have just been extremely busy and heavy. I’m having a hard time getting back with close friends, let alone emailing, etc. I had a lunch yesterday with a very good friend of mine, Jake Larson, and I really just forced myself (Jake, great to see you – it was a chemo morning!) because we had been playing phone tag for 3 weeks.

My life has become much more focused on treatment since I started declining more – mainly the progressive pain, weakness and loss of use of my left left side. This is an area of a cancer survivor’s life that needs constant adjustment I have learned. How to balance being in appts all the time vs time for me, my kids and family, etc. Right now I’ve had so much treatment and appts it’s out of whack.

Tomorrow I will have an Avastin infusion and then I’m meeting a neurologist about the boyox injections in my arm/shoulder. I also started round 2 (volume 2 since I did this before for a year?!) of Temodar on Monday night.

More later,

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May 14

Chemotherapy Update

Chemotherapy, Medical Updates 2 Comments »

Sorry I haven’t posted for a while. This has been one of the most difficult weeks we’ve had in a long time. As you may have seen by my prayer request, Rachael threw her back out last Friday. She has slowly gotten better but is just now starting to get back into the swing of things.

Thank God for family and friends. I have said time and time again that at the end of the day what really matters is family and friends. Have you ever really stopped to think about what truly matters in life? Certainly after a diagnosis like this I have had many questions including what really matters. Frankly, we don’t need all the things we have. We are blessed to have a nice home, transportation, food to feed our family, good schools and other essentials that many people in the world just do not have. I still remember when Pastor Rick Warren at Saddleback church in Southern California said “if you have a roof over your head, food in your refrigerator and a checking account you are wealthier than 98% of the world”.  This is a fact.  So when things go sideways, like this week when Rachael was out of commission and I’ve been out of commission in terms of being a major contributor to our household I really try to remember this.

This morning I’m feeling the full effects of the first-round of chemotherapy hitting me.  Up till this point it’s been pretty easy. And by all other accounts I’m doing just fine so I’m very grateful. I’m just extremely tired. Hard to get from place to place, give myself organized, etc. I find that when the chemotherapy starts stacking up my mental acuity is impacted in this adds to the fatigue. Between cognitive endurance and simple physical endurance with the issues I have with shoulder and leg etc. I guess I hit that wall.

But guess what? I have hit so many walls in the last three years fighting brain cancer that I can’t begin to remember them all so this is no different. I have to put 1 foot in front of the other. Sometimes, I just think about my kids and I do it for them – not only to be here but to show them not to give up. Of course they’ll realize this now but they will later and that’s important to me.

I will finish this round, my first-round,  tomorrow and then I’ll have next week off during which I’ll have an MRI.  Then I will begin round two and will keep going from there. The MRI will give us good information as to whether I should stay on my current chemotherapy regimen which is the Avastin every two weeks and Temodar every day for 21 days a month. If the MRI isn’t moving in the right direction we may switch out Temodar another IV-based chemo or perhaps an oral search as VP-16.  As always I’ll post results here. 

We are praying that Rachael will continue to get better. I think it’s been tough for the kids too, particularly Aidan.  He had a real serious talk with me last night and wondered if mom was it be okay he started drawing parallels to the problems I’m having with my shoulder and leg and I could see where he was going. I told him that mom just picked something up and hurt her back a little bit, she’s going to be better and that my shoulder and leg problems are from my brain tumor – that mom doesn’t have one.  A huge look of relief appeared on his face. He said he was fearful something was happening to her.  I felt so much for him.  Just shows how much kids take in and you just dont know how they will process everything.  He’s doing better today!

When you go through deep waters and great trouble, I will be with you. When you go through rivers of difficulty, you will not drown! When you walk through the fire of oppression, you will not be burned up –the flames will not consume you.” Is. 43:2 (LB)

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Apr 26

Starting Temodar Chemo Tonight

Chemotherapy 3 Comments »

A quick update – heading downtown shortly for my first avastin infusion in about 6 weeks.  We waited until we finished the 6 weeks of vaccine injections.  Tonight I will start on temodar for 21 days straight then a 7 day break. Then I’ll go back on for 21 days and so on. 

Please pray that this treatment slows growth and that it doesn’t impact my immune system too much.  You might recall that I did 8 rounds in 2007 and finally came off because my WBC was too low and wouldn’t recover.  Strength in numbers.  I sincerely appreciate it!

A dear friend gave this to Rachael and I.  I wanted to share it with everyone.  A great reminder!

Are you passing through a testing.
Is your pillow wet with tears?
Do you wonder what the reason,
Why it seems God never hears?
 
Why it is you have no answer
To your oft-repeated plea,
Why the heaven still is leaden
As you wait on bended knee?
 
Do you wonder as you suffer,
Whether God does understand,
And if so, why He ignores you,
Fails to hold you in His Hand?
 
Do black doubts creep in, assail you,
Fears without, and fears within,
Till your brave heart almost falters
And gives way to deadly sin?
 
All God’s testings have a purpose-
Someday you will see the light.
All He asks is that you trust Him,
Walk by faith and not by sight.
 
Do not fear when doubts beset you,
Just remember-He is near;
He will never, never leave you,
He will always, always hear.
 
Faithful is He who has promised,
He will never let you fall,
Daily will the strength be given
Strength for each and strength for all.
 
He will gladly share pain with you,
He will gladly give you peace.
Till your tired and weary body
Finds its blessed, glad release.
 
When the darkened veil is lifted,
Then, dear heart, you’ll understand
Why it is you had to suffer,
Why you could not feel His hand
 
Giving strength when it was needed,
Giving power and peace within
Giving joy thru tears and trial,
Giving victory over sin.
 
So till then just keep on trusting,
Thru the sunshine and the rain,
Thru the tears and thru the heartaches,
Thru the smiles and thru the pain
 
Knowing that our Father watches,
Knowing daily strength He’ll give,
Victory for each passing hour,
This is life, so let us live!
 
- John E. Zoller

 

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Apr 22

Treatment Plan

Brain Tumor Treatment, Chemotherapy 1 Comment »

After a long discussion at the Neuroscience Institute this morning, we have decided to go back to Avastin as the staple and use a rotating system of an additional drug month to month that will be switched out potentially – depending upon how I’m doing. For starters I will go back on Temodar. 21 days on, 7 days off with IV Avastin every other week. Temodar can be switched out for VP-16, Carboplatin or a host of other drugs. These are viable options that we think a) strike a good balance between quality of life and length of life, b) provide freedom in making choices to fold in other medications and c) hopefully provides us with a window of time to research and find a trial/treatment that is worthwhile pursuing. Even trials have drawbacks – the most significant of which to as a patient is the acceptance criteria. For me that would mean the trial would have to accept patients who have had:

  1. Recurrent GBM
  2. Previous use of Chemo agents (Temodar, vp-16, etc
  3. Previous Surgeries (including stereotactic radio-surgery such as Gamma Knife)
  4. KPI score +or> X

The problem with some trials is that you lose a lot of your lattitude, meaning you are locked into their guidelines so it’s not exactly all rosey there in the land of drug trials. Some only allow newly diagnosed, or that you cannot augment the trial with other drugs of your choosing for example.

I’ve been through 8 rounds of Temodar but I was on a 7 days on, 7 off regimen. I posted about this back in October, 2007 when I described how those first five days on Temodar went and the routine I developed. Because I’ll be on it a week longer each month, I will only be taking about half the dose. That will help in reducing side effects, mainly upset stomach. I should be able to handle this just fine. It wll be interesting to see if the cumulative effects of treatment come into play at all.

For now that’s it.

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Mar 28

Healthcare Conundrum

Press 2 Comments »

This situation is the heart-breaking reality of today’s state of affairs with regard to healthcare. She has the same tumor I have – a GBM. It kills. Most times quickly. I can’t imagine using a treatment modality that has been effective only to have it pulled because of some beaurocratic, arbitrary rule.  I have had a cocktail of drugs and an experimental… treatment. I had stability on DCVax, a brain tumor vaccine and temodar but most have failed. This is unconscionable.

I think many of us in America aren’t happy with what has happened over the past several weeks in Washington D.C..  All we can do is look to God and know with complete faith and abandon that  He is the rudder.  We have too many God-given skills and knowledge as a people, coupled with compassion and an instinctual need to save lives, for politicians to destroy the human spirit’s drive for sucessfully treating people, performing research and driving for a cure.

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Jan 13

First Irinotecan Infusion

Chemotherapy No Comments »

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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Jan 10

Information Trickles In

Brain Tumor Treatment No Comments »

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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