Wednesday, January 28, 2009

Correction to last post

Ricky was not approved for the trial due to taking aspirin. No way to get that drug.

We're awaiting the next options.

I'll keep you all posted.

Bill

Here we go again......

Well, the PET scan confirmed what the MRI picked up, the tumor is back. It’s small, less than one centimeter, and is located in the cavity that was left from the previous operations. But the fact that there are new cancer cells means we need a new game plan right away. We already suspected that surgery and radiation aren’t viable options at this time, and that's still the case.

After a long meeting with the doctors today, we’re signed up for a Phase II experimental trial of a drug called Cilengitide. Information on the trial can be found at: http://www.cancer.gov/clinicaltrials/COG-ACNS0621

It’s another type of compound for cutting off the blood supply to the cancer cells. You can see a definition here: http://en.wikipedia.org/wiki/Cilengitide

There have been some good results with this drug with adults, and right now, it’s our best choice. It is however much more intensive than the program we were on, requiring one hour IVs every three to four days, indefinitely. Of course, all these trials carry lots of potential side effects, both known and unknown. That said, we hope to start as soon as we can.

Ricky knows that we are going to try another medicine. He doesn't know the new schedule yet since we're not accepted into the study. We were told that Ricky should be approved, but it’s not been finalized. I’ll post more details when we have them.

Prayers and good thoughts please!

Bill

Friday, January 23, 2009

PET Scan done, no results until next week......

It's an easy test, and we've done them before, the actual time for the scan is only 28 minutes.

We will meet with the doctors Wednesday to discuss results.

He'll been feeling great, he had us all in tears of laughter at dinner last night. No TIAs, slight winter cold.

We go to Chinese New Year's Saturday night with Grandma and Grandpa. I am sure he will out eat us all.

I will update the blog after the doctor's meeting.

Monday, January 19, 2009

We may have a problem...........

We had the MRI on Saturday, which went very smoothly. Ricky is able to watch his own DVD while in the MRI and we are all comfortable with the procedure. That's the good part........

I spoke to the lead Doctor tonight, and he tells me the MRI picked up something that requires a PET Scan asap. We're looking for Friday, with a follow up consult during our next visit to Dana Farber January 28th.

He's feeling good, however this could be bad news..........

Please keep the prayers and good thoughts coming, we do need them!

Bill

Thursday, January 15, 2009

Boy, it's cold here!

We had our appointment at Dana Farber Tuesday. Ricky's exam was stable, and his numbers all looked pretty good, (WBC 3.61. Platelets 111K, ANC 2.00) so were able to continue the increased Irinitecan. He was nauseous for quite a bit of the time so we will be adjusting the Zopham and Ativan doses next time around. He did recover by mid afternoon and ate a Ricky Maki special (Cooked Eel, tobiko and sesame seed roll). The TIAs come and go, but do not seem to be any worse.

He went to school the next day no problems. MRI is Saturday!

Thanks one more time for all your prayers and good thoughts!

Monday, January 5, 2009

An excellent source of info and a worthwhile charity

I have been reading the email "blasts" from http://www.virtualtrials.com/ for several months now. If you are looking for a good charity and a great source of news, please check out the
Musella Foundation for brain tumor research and information.

Regards,

Bill

Another year!

We spent the 31st at Dana Farber. Rick's exam was stable and his blood test results were good - WBC up to 4.34, Platelets are at 101K, and his ANC is 3.05. We upped the Irinitecan dose by 25% since his platelets are stable. He got sick during the infusions, but recovered by the end of the day.

He's doing well, but he has had a increase in TIAs over the last few days and we don't know why.
We all really did enjoy the time off around the holidays. We needed it!

Bill