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Quote of the Day:

Perseverance is more prevailing than violence; and many things which cannot be overcome when they are together, yield themselves up when taken little by little.
- Plutarch
Jun 20

Hospital Saga

Complications, Medical Updates 7 Comments »

Sometimes during this battle, you can hit snags. I’ve hit a few lately

To summarize, I had not been feeling well the week of June 7th. As the week wore on I wasn’t able to keep food and medication down. Finally on Tuesday the 18th after trying to hydrate and eat bland foods for a week, Rachael and I decided that heading to the ER was the best course of action.

I was admitted into the Oncology Unit dydrated, a low white cell count and Keystones found in the UA. Not good. I was in until Thursday. I developed severe shoulder pain – I believe aasociated with the hemiparesis on my left side. I can deal with that. Great! I’ve had 3-4 good meals. I’m holding meals, fluids have been pumped in via IV and I’m doing ok so I’m discharged Thursday late afternoon.

Thursday night at home was difficult sleeping. My left arm was extrememely uncomfortable due to the same pain. When I awoke Friday my left hand was so swollen it looked round and like a baseball. We knew this wasn’t a good sign so we called the oncology unit and sure enough they recommended returning to the ER because of the risk of blood clots forming. So back to the ER! 4 hours and an ultrasound on my left hand/arm later I was back at home. The ultrasound showed no evidence of clotting anywhere and blood work showed my kidneys were fine. Back home and sleeping ok with some pain management in place

So that is the week and I’m trying to stick with the plan. This snag is done.

Today is a new day.

More to come. Need to get back on back on Chemo.

More to come…

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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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May 08

UC Davis Talk

UC Davis 1 Comment »

As memtioned, I gave a presentation at the May Meeting of the UC Davis Brain Tumor Group. The subject was using iPhone apps to help manage treatment. The following videos capture the presentation if you care to watch. There is a 10 min limit with youtube so I cut it up into 3 segments – approximately 5-8 mins long each.

Also, keep in mind this is far from a professional film production! I had a podium, a PowerPoint presentation being projected on to a large screen and no mic. One annoyance is there are times when I move out of the picture to clarify items on the slides but the camera doesn’t follow – it would have been too disruptive to do so. The objective was to connect and present the information, not film it. Nonetheless, you’ll still glean most everything as if you were there.

More to come!

UC Davis Brain Tumor Talk Part 1 of 3

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UC Davis Brain Tumor Talk Part 2 of 3

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UC Davis Brain Tumor Talk Part 3 of 3

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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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Apr 06

Medical Update

Brain Tumor Treatment 1 Comment »

Vaccine injections went well last week. Next Friday I will use the last dose of the vaccine, called DCVax Brain. The vaccine was made, in part, from my brain tumor tissue that was harvested during my second surgery in 10/08. So I will continue to track this via MRI, go back on some meds that are light on the …bone marrow and keep pressing. Next is finding another emerging treatment. UCSF has a few options and we are looking at some other ways to attack the problem.

It’s really a never-ending search. It’s about getting more time, adjusting to life’s challenges and moving on even when I feel like I’m sliding backwards. Walking up the down escalator as it were.

Through it all, never give up hope!! I’ve had some up and down days  in the last three weeks that haven’t been great mainly due to joint pain on the left side that has resulted from surgery/treatment and some focal seizures.  But I have much to be grateful for. 

Through it all, never give up hope….and never give up.

Hebrews 11:1 (King James Version)
 1Now faith is the substance of things hoped for, the evidence of things not seen.

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Apr 01

Combinatorial Therapy Allows Viruses to Destroy Tumors

Brain Tumor Treatment, Research No Comments »

Web address:
     http://www.sciencedaily.com/releases/2010/04/
     100401173713.htm
  

Combinatorial Therapy Allows Viruses to Destroy Tumors

ScienceDaily (Apr. 1, 2010) — For several years, researchers have been developing a new approach to treating cancer that uses viruses to infect and kill cancer cells while leaving normal cells unharmed. Recent data have indicated that this approach, which is known as oncolytic virotherapy, has potential.

Now, Richard Vile and colleagues, at the Mayo Clinic, Rochester, have found that this approach can be combined with a standard clinical therapy to provide substantial regression and cure of tumors in mice, leading them to suggest that this combinatorial approach could be of tremendous benefit in the clinic.

Tumors that grow to a certain size need to form new blood vessels if they are to continuing growing and spread to other sites. One of the molecules that controls this new blood vessel growth, VEGF, is the target of drugs used to treat several forms of cancer. In this study, the authors found that modulating VEGF signaling, for example by transiently stopping anti-VEGF therapy in mice harboring cancer cells expressing high levels of VEGF, allowed the cells that line tumor blood vessels to be targeted and killed by viruses.

Importantly, as this approach targets the cells lining tumor blood vessels, rather than specific types of tumor cells, the authors suggest that this combinatorial approach to therapy could be used to treat a wide range of cancers.

The research appears in the Journal of Clinical Investigation.

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