This page was last modified on Wednesday, July 07, 2010 10:34:25 PM
June 30, 2010 - No new sign of tumor growth! Yippee again.
May 8, 2010 Good news again! No new signs of a tumor.
March 6, 2010: Great news again. His last MRI had nothing remarkable on it. The word remarkable is music to my ears.
Jan. 8, 2010
Great news! Ted's latest MRI, a specialty MRI that reads more detail, could not detect the enhancement found on his last MRIs. He will see the doctor next week for verification but from what we read on his initial report, he is all clear!
Jan. 1, 2010
Ted's October MRI showed a new 4mm enhancement. He had a follow up MRI six weeks later in early December. There was no change in the enhancement, but it was still there and they still don't know what it is, so on Jan. 7 he is having a specialized MRI that reads the enhancement with spectrographic. Our oncologist told us that enhancements of 5mm or larger are more accurate to identify with this type of MRI, but we are going to go ahead and get it read anyway. Apparently the spectrographic enhancement can determine the difference between scar tissue and tumor growth. Fingers crossed!
August 21, 2009: All clear. Nothing new on the MRI. That's really good news because this is the first time Ted has been off of chemo since he was first diagnosed May 2006. And oddly enough, he thinks his hair is getting thicker. We'll keep an eye on it.
July 27, 2009
We have just returned from The Brain Tumor Center at the University of California San Francisco. First of all, it was a very similar visit to the Dana Farber Cancer Institute with the suggestion that Ted go off of Temodar which he actually did for the first time. His next MRI, sometime in late August, will be the first without Temodar as a treatment. We learned some interesting things at this visit that we did not previously know about a GBM. Our doctor discussed the two types of GBMs. One of them is generated from stem cells and no one knows when it will produce a tumor again. The other type, and forgive me because I understood everything the doctor was saying when he said it, but it would take several years of medical school to try to write what he actually told us, so I will put it in my own simple words. He said that the other type of tumor comes from an unknown source and is often slow growing and manageable. He actually said that this type of tumor can be treated like a chronic illness. He has a boss who had a GBM 23 years ago and it didn't show itself again for 23 years. They found it on his annual MRI and removed it. They told Ted that if he makes it to the five year mark, they will slow his MRIs down to once a year. However they don't know how to determine what type of GBM each patient has, but they are learning fast, and we have seen so many leaps in bounds in what they know now compared to three years ago when this began for us.
July 11, 2009
Back from Boston and the consultation with Dr. Wenn at The Dana Farber Institute:
Dr. Wenn Suggested Ted go off of Temodar, so for the first time in 3 years Ted will be free of the drug. You think this decision would be an easy one for us, but it's a big decision. It's hard not to relate his three year survival with the fact that he has been on Temodar for three years, but Dr. Wenn suggested that it is likely Temodar isn't probably doing much anymore and there is a possibility that it could do more harm than good if he continues to keep taking it. It does damage bone marrow and in some cases people can build up a resistance to it allowing the tumor to become, "smarter" and grow right past the Temodar. Ted's blood work has always been good, so we don't think there is bone marrow damage, but his last round of chemo really knocked him off of his feet. He was much more tired than usual. We are looking forward to seeing him feel more energetic, but definitely going into his next MRI with a bit more nervous energy, although the doctor said it's not likely the tumor will pop back all of a sudden, but if it does come back we can attack it again with Temodar or some of the other experimental drugs out there, but I don't even want to think that way right now. For now it's live life to the fullest as usual......And thanks to all of you who let us know that this site has given you hope! Right back at you.
June 26, 2009 (original diagnosis was May 29, 2006)
Great news again. I can't tell you how thrilled I am right now to get the news. We are scheduled to go to the Dana Farber Cancer Institute in Boston in a few weeks to speak with Dr. Wenn about future treatments or non-treatments whatever the case may be. If we can't catch a flight through the Corporate Angle network, we won't be able to go to the doctor's appointment. (See May 4 for Corporate Angle information.) Living life to the fullest gets expensive, and our bucket list was long. Between transportation costs, consultation fees (not covered by insurance) and hotel costs our consultation trips will get expensive fast. A cousin in Andover has generously offered his house to us for a few days. Fingers crossed that they find us a no-cost flight to Boston. Ted has also sent his records to Dr. Chang at UCSF for yet another consultation. We want to hear from the best in the field before we decide what the next step is.
May 4, 2009 EXCELLENT NEWS! No signs of new tumor growth and his lungs and heart looked good too! It was Memorial Day 2006 that we discovered he had a tumor. We are coming up on the 3 year mark.
There may be a new plan in the making. Ted has been on Temodar for almost three years now. Because this drug is a phase three drug, there isn't any real data on longevity of the drug; that is no one knows the long term affects of the drug nor how much damage it might do in the long run or even if it will remain effective. Right now, he doesn't qualify for many of the new drug studies because he has been on Temodar too long.
Here is our dilema: What should he do now? The doctor would rather not subject him to a lifetime of chemo treatments, but he has lived much longer than predicted and seems to have very little side affects thus far. This summer we have been told we need to get another opinon. Suggested facilities are either The National Cancer Institute in Maryland, or The University of California San Francisco. This might involve a trip to one or both of the facilities. Despite the fact that both consultations will cost us out of pocket, we were told about Corporate Angles. This is an organization that flies cancer patients to treatment centers free of charge. The best part is that you don't have to qualify financially. All cancer patients are eligible as long as they meet basic qualifications. Check out their site. The best part is that Ted won't have to fly on crowded commercial jets.
http://www.corpangelnetwork.org/Perhaps Corporate Angles can help you and your family members as well.