This is a video of a very deep conversation Keegan and I had as he was getting from his nap. He actually woke up standing with his shirt stuck on his head crying! Once I removed it, this is what transpired…silly boy
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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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Great info from carepages. Some of it is really common sense but a good reminder for all of us traveling with 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:
Cancer and Travel: Ready for Take-Off
Cancer places additional demands on travelers — these tips will make the trip go more smoothly for everyone:
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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As most know that follow my blog, I am continuing now with my vaccine therapy. I have 2 doses left after using one of them on Friday. We’ve also been trying something interesting. Each dose consists of 2 injections , one in each arm. For the last two sets we have been using Aldara cream. I’m placing the cream at the injection sites 48 hours in advance under tagaderm bandages changing them once. The theory is that this will pull more dendritic cells to the surface of the skin thus allowing for more “scouts” to carry the vaccine to existing tumor. Call it super-charging the process if the hypothesis is correct. I’m using the cream for two days post-injection. Only a few seizures since gamma-knife – focal and localized in my left hand.
I continue to be amazed at the power and blessings that God has given us. I’m not working but so far my most important accomplishment is how much more I have fallen in love and bonded with my son Keegan. He’s almost 3 (July) and I have never spent this much time with either of the boys. Of course with Aidan being older I have spent a lot of time on weekends coaching him in soccer and doing other things but I didn’t do what I’m doing with Keegan with Aidan. It’s been great except yesterday when he decided to play mountaineer and apparently lost his footing and fell! He’s fine.
I’m back in touck with some near and dear friends which is really nice. What a gift to have the opportunity to thank people, tell them how they influenced your life or just that you love and care about them. I don’t know that everyone who leaves this place is able to really do that or at least to the extent wanted. It’s great!
I’ll have the vaccine again a week from Friday, and another MRI here in a few weeks but it’s about today. Later Avastin will be folded back in along with VP-16 and Valcyte. We’ll likely have to move rapidly to other treatment modalities
I’m going to speak at UC Davis at a Brain Tumor Survivors Meeting in May. The topic? How to use technology to effectively support treatment. I’ll save details on this for another post.
Spring is beautiful here so far. The days have been nice. Slight breeze and sunny.
Cheers,
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I had a great night tonite. My good friend Jake and I went to see the LA Lakers vs the Sac Kings. I’m a Laker fan through and through going back to McAdoo, Wilkes, Magic, Worthy and Kareem.
We had some VIP access for dinner and dessert and were on the Laker locker room side of the arena which was great. The 3rd photo is of Pau Gasol stretching in the tunnel just before the Lakers took the floor. It was just about having fun…
Here’s a few pictures.
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Quick note: CDs are out of stock at the moment and are in the process of being restocked – should be by week’s end.
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I had an MRI on Thursday which was 30 days post-gamma knife. As you might recall, a second tumor appeared 30 days ago and I immediately was scheduled for gamma knife which was a great way to address the problem. I really prayed for was that the original tumor resection site was stable and that the Gamma knife treatment directed at the new tumor would essentially destroy most of the tumor tissue. Of course the risk continues to be centered around motor function, left-side weakness and seizures.
First, here is an image of the scan (click for a larger view):
The yellow arrow represents the original tumor. The report indicates that this is stable which is great news. The red arrows point to the new tumor location and as you can see it is now hollow to spare you the medical jargon. The only possible issue that is something to potentially be dealt with in the future is scar tissue from the recent Gamma knife procedure. Sometimes Gamma knife can result in what’s called necrosis, or scar tissue. This can irritate areas of the brain and result in brain swelling. If frequent headaches result, sometimes surgery is necessary but I am far away from anything like that, so all in all this procedure went well and I am very happy with the scan.
Moving forward the plan is going to be pretty aggressive. I have three doses of DCVax left. We’re going to administer those over the next six weeks, two weeks apart. After the first two doses I’m going to start back up on avastin. I will likely go back onVP-16 which has obviously done the job over the last 30 days in stabilizing the original tumor. I’ll also continue taking Valcyte. I am like a drugstore cowboy! I have an entire cabinet in the kitchen dedicated to my medications. It’s unbelievable.
Today is good. I’ve been very tired due to family and friends being in town the last three weeks so this weekend is the weekend to relax and catch up with things around the house.
Thanks to everyone for all your prayers around this latest MRI. They really mean a lot to us.
God bless
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This is a little late but I was reminded of this today and meant to post it when I first read it.
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on 6 months…moving forward can be difficult.
on 6 months…moving forward can be difficult. on Memorial Service Details on Current Status on CBS News: What’s Behind the Mystery Cancer Cluster?
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