Blogging in B Minor

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

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Great info from carepages. Some of it is really common sense but a good reminder for all of us traveling with cancer.

Traveling w/Cancer

Whether the cancer patient is an adult or a child, traveling takes some extra planning, but unless your doctor has ruled it out, taking a trip shouldn’t be impossible. Hard and fast rules about cancer and travel will vary because every cancer patient has unique needs. A cancer patient who is between treatments will have different concerns than the one who has completed all cancer treatment, just as someone who has had recent surgery may have to take precautions that are different than someone whose surgery is in the past.

Cancer and Travel: First Stop — Doctor’s Office

Start planning your trip by discussing any possible travel restrictions with the cancer patient’s medical team. Make sure that your travel dates will not interfere with scheduled chemotherapy, radiation therapy, or surgery. The oncologist can weigh in on the best time for travel in relation to any upcoming cancer treatment.

This is especially true when the cancer patient is a child. Terri Ades, DNP (doctor of nursing practice), the director of cancer information for the American Cancer Society, says that involving a child’s oncologist or oncology nurse when making plans for a child with cancer will help you select the trip dates, location, mode of travel, and activities that will work best for the child. For example, taking a child who is immuno-suppressed or at risk for infection on a trip where there are large crowds might not be the best choice. Most cancer patients are also advised to avoid travel to developing countries for the same reason, especially if the patient’s immunity is compromised by chemotherapy, for instance. In some cases, travel may be considered safe, but the doctor may recommend taking prescription antibiotics along on the trip in case the cancer patient contracts an infection.

Some cancer patients are advised to avoid air travel altogether due to the pressure changes that occur during flight and the possible need for supplemental oxygen. Some forms of cancer can increase a patient’s risk for developing blood clots, called deep venous thrombosis or DVT, especially during long airplane or even car trips.
Your doctor may suggest avoiding travel when your blood counts are likely to be low, such as in the weeks following chemotherapy. If you must travel during such a time frame, Gregory Plautz, MD, chairman of pediatric hematology and oncology at Cleveland Clinic Children’s Hospital in Ohio, urges families to discuss with the child’s doctor ahead of time what likely side effects will occur during the trip. For example, says Dr. Plautz, if the blood counts are likely to drop significantly, the family should know what precautions to take regarding fevers, wearing a protective face mask in airports or other crowded spots, or participating in vigorous recreational activities that might cause bruising or bleeding.

The Cancer and Travel Preparedness List

Proper planning means being prepared to manage cancer treatment or cancer treatment side effects while away from home.

Medication Information

Obtain and carry with you a letter from your doctor or pharmacist listing all prescription medications being taken for cancer treatment. This letter should have a description of each drug, including brand and generic names, dosages, number of pills you take each day, and the need for any refills while traveling. If you have a tissue expander or any implanted metal device, such as an intravenous access port, you should also have a letter from your surgeon describing it (in case questions arise at metal detectors and security screenings). Your doctor’s address and telephone number should also be listed.

If you’re going to a foreign destination, have the medical information translated into the language of that country and learn key foreign words and phrases to describe your cancer treatment in an emergency situation. Leave a copy of all this information plus a detailed itinerary of your trip with a close friend or relative who could fax it to you in an emergency.

Ensure that your medication is legal in the country you are visiting — this may require several phone calls or correspondence with an embassy or consulate office. Restrictions regarding what you can take out of one country and into another vary greatly. The majority of those restrictions involve controlled substances such as morphine and codeine, as well as drugs that are delivered by injection.

In addition to planning ahead for scheduled medications, Plautz says families should also discuss with their child’s doctors in advance any potentially needed medications, such as anti-nausea or antibiotic medicines. 

Medical Care at your Destination

Before you leave home, find out where to get emergency medical care, if necessary, at your destination, including the local emergency services, phone numbers, and the number of the local hospital. Ask your doctor if she can recommend the best medical facility for you. Know where you can get prescription refills or replacements at your destination, should your medications or supplies be lost or damaged. If you need oxygen regularly, arrange to have a supply where you are staying.

If the patient requires an evaluation or a treatment by a doctor while at a travel destination, coordinate the visit in advance, and have contact information for your home doctor in case the doctor at your destination needs to consult with him.

Insurance Clearance

Discuss your medical condition with your travel insurer and tour operator, and ask about any restrictions you should consider before booking. Ask your health insurance provider about any limitations or procedures you must follow to use your insurance at your travel destination. Some travel insurance programs may help cover medical expenses while you’re traveling.

Cancer and Travel: Packing Prescriptions

Be especially careful about packing medication. Carrie Strehlau, spokesperson for St. Jude’s Children’s Research Hospital in Memphis, offers these tips for traveling with a child who is undergoing cancer treatment — sound advice for an adult with cancer as well:

• Bring more of your child’s medicines than you think you will need, just in case your stay becomes longer than planned.
• All medications should be kept in their original, childproof containers.
• If traveling by car, do not store medication in the glove compartment or trunk. These areas can become hot and humid, which can alter how well some medicines work.
• Keep all medications with you in a carry-on bag when traveling by train, plane, or bus. Your child may need a dose during travel. If your luggage gets lost, you could be without the medication for several days.
• Take along a mask for your child. Although wearing a facemask is not always comfortable for children, it is essential for helping keep germs away.
• When traveling to a warm climate, remember that certain medications can increase the skin’s sensitivity to the sun, and apply sunscreen with an SPF of at least 30.
• If your child has a central line, be sure to bring all of the proper materials needed to keep on a consistent cleaning schedule.

Cancer and Travel: Ready for Take-Off

Cancer places additional demands on travelers — these tips will make the trip go more smoothly for everyone:

• If the cancer patient is a child, consider his comfort and pleasure during the vacation. Take along a favorite pillow, comfortable caps for a bald head, and toys, games, and music for distraction and relaxation during the trip, says Dr. Ades.
• Remember to follow basic guidelines for smart travel. Get any recommended vaccinations before you go, and eat only well-prepared food at reputable establishments once you get there. In any country where water quality is suspect, drink only bottled water, and avoid ice in drinks.
• Allow extra time at the airport, in case of delays going through security checks or managing carry-on equipment. Consider other conveniences to ease discomfort. For instance, will a wheelchair at the airport make the trip less exhausting on the patient?

Finally, before you leave, make an appointment with the home-based doctor for a post-travel check-up to discuss any unusual symptoms or discomfort experienced during the trip. You may not need to keep it, but you’ll have peace of mind knowing it’s on the calendar.

Cheers,

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I was deeply saddened today to learn that Randy Pausch succumbed to pancreatic cancer.  If you aren’t familiar with Randy or his “Last Lecture”, take a look at my post back in May.  He was an absolutely amazing person who fought his battle with dignity and grace and is a model  for all of us.  He never gave up, pursued many types of chemotherapy treatments and was an advocate in front of Congress.

 May he rest in peace.

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Many of you must have learned of Dr. Randy Pausch and his fight against pancreatic cancer.  I recall my wife Rachael recording an episode of Oprah that featured him presenting what he calls his Last Lecture.  Since that episode that aired months ago, he has gained much notoriety and has published a book entitled “The Last Lecture”. 

Randy’s lecture is an amazingly inspirational experience.  I would urge all of you take this in if you haven’t already.  Also, below the video I have placed a link to his update page where he is posting updates on his health.  This is obviously a huge battle and he’s way down the road with it – prayers are always powerful…

 Randy Pausch’s Update Page

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A brain tumor is so limited that:

It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit…

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One of the most difficult aspects I have faced as a brain tumor survivor is making decisions around how to treat my tumor. In the beginning, there are a million different alternatives thrown in your face. I empathize with people starting this journey because it’s difficult. What do you believe? Who do you believe? Everyone has an opinion and most all of them come from extremely intelligent, highly educated professionals. Do you opt for a clinical trial right off the bat? You could, and it could be the one that makes the difference. It could also be a trial that fails. Or, do you opt for a treatment that has proven success – even if that success doesn’t sound appealing?

With any brain tumor you want to CURE this thing right off the bat. You want to knock it out. You want to employ a treatment modality that has the highest likelihood of doing the job. At the same time, you don’t want to kill yourself in the process! Tough situation. For me, it came down to a simple decision. There is a ton of research taking place – new discoveries are happening each year. I decided this was about utilizing a modality that would extend my life out as long as possible so trials that are now in Phase I or even Phase II could be proven out. If my tumor shows ANY growth, I will avail myself to these treatments but for now, I am adhering to the tried and true treatment that UCSF, Harvard, Duke, MD Anderson and many other experts have recommended in my case – and that was IMRT radiation for 5 weeks with concurrent Temodar and then 6 months of Temodar on an alternating weekly schedule. I am finishing my 6th cycle now. I will continue until 1 year and then stop, unless there is shrinkage in which case I will continue. If there is growth, then it’s time to look at trials and other “cocktails” and go off the beaten path. There is a Neurosurgeon at MD Anderson in Houston, Texas that found himself with a grade 4 GBM – he was faced with all of this. Guess what he chose to do? Radiation and Temodar. He has a wife, children and everything to live for just like anyone else.

We can all over-analyze this. I did. But in the end, for me, it was about going with tried and true methods that had the best percentages of extending my life out, increasing my survival rate and attempting to ensure that I’m here when even better treatments are available. The problem with clinical trials is that many of them require that you’ve had no prior treatment – if you’ve already been on Temodar, for example, you aren’t eligible for the trial. However, if you have recurrent growth, then you can jump back on. That’s my own personal strategy. But initially, I’m driving the car that has been manufactured for 40 years and has an engine that I know won’t die for awhile.  Of course this is a terrible analogy with regard to Temodar, because it, too, was a clinical trial just a few years ago and was found to be extremely effective fighting grade 4 astrocytomas (aka GBMs).  Researchers subsequently determined that this chemotherapy was effective fighting grade 3 astrocytomas and oligoastrocytomas.  This is just one man’s opinion, of course!

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Well, I have decided that when I am finished with cycle #5, I am going to try the 5-day chemo regimen. With this schedule, I will take Temodar for 5 days and then be off of the drug for effectively 23 days each month. I mentioned in a number of posts back in the October time-frame or so that the reason I was on this 7-day alternating week schedule was due to the improved survival rate. There are studies that indicate this is true, particularly when taking the drug every day at a lower dose as I did concurrently with radiation therapy post-surgery. However, I opted for a 7-day alternating schedule because I just couldn’t deal with being on the drug 24/7/365 so-to-speak. As the cumulative effect has developed, however, it’s become more difficult to recover each week on the 7-day.

It’s a difficult, strange new land to navigate – full of decisions to make and everyone has a different opinion. There is no doubt that the radiation and Temodar as the chemo of choice and used concurrently were right on target. The questions are the regimen and secondly how long. Some people take this drug for 2 years. The “standard of care” is 6 months. My oncologist is probably going to recommend 1 year. So, if you have stable MRIs through a year, obviously coming off of the drug is a little bit unnerving. However, there are long term side effects to taking this drug – such as Leukemia. One thing is for certain, based on research and discussions I have had, it doesn’t appear there is any benefit to using Temodar beyond 24 months.

In 2 weeks I will sit down with my Oncologist and discuss this but I’m definitely going to try the 5-day. It will be about 100mg more per day – 400mg instead of 300mg. I’ve tolerated it well so we’ll see how it goes but the goal is to have more quality time each month with my family. It’s not terrible and I make it through ok but if I can improve it, particularly given the little data re: survival rates and the significant data backing up the 5-day, that would be great. Additionally, I have done the alternating regimen for nearly 6-months so I feel good about that.

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