Diario de Allen Parkes
Better Late Than Never
Escrito el Sep 18, 2013 5:40pm por Allen ParkesHello,
Well, it's been quite sometime since Allen or I updated Caring Bridge. Life with cancer has not been an easy one for us and if we mentioned ALL the details of what has happened over the past few months this would be one hell of a long journal entry! (Yes, much longer than it is). So let us start by summarizing in a shorter format to bring you up-to-date...... Here it goes:
1) May 20th was the "Dinner With The Parkes" fundraiser organized by our wonderful friend Debbie.... thanks again Debs! It was great to see so many people that mean so much to us; some of which we hadn't seen in quite awhile. Thank you for all your continued love and support!
2). In the beginning of June Allen went through a second round of radiation. It was a short, but high dose of radiation to his tumor site. Although he had already received his lifetime dose, we (including his Drs) felt it was worth the risk to see if his tumor would shrink.......well not so much......growth instead!
3). So Allen started a protocol of chemo (Irinotican), Cometriq (XL184) and Afinitor (Everolimus). According to the genetic mutations from Allen's tumor tissue, this combo may have a chance of shrinking the tumor. Cha ching, we found a winner!! In 5 weeks time his tumor shrunk about 50%!! But.....
4) We found the new combo was shrinking his tumor when they did an MRI while he was in the hospital for a pretty bad case of pneumonia. Not so good......lots of hospital time, lots of antibiotics, lots of PT to help him regain baseline strength and worse of all, his special cocktail to help his cancer put on hold.
5) Middle of August, after Allen's 9 days in the hospital and recovery from pneumonia we slowly started adding back in his previous cocktail of medication. End of August MRI shows us the tumor is relatively unchanged, still down about 50%! In the world of Glioblastoma and being off any protocol for a few weeks, makes this extremely good news!
6) Sept 9th lands us back in the hospital, but again not something that is directly related to Allen's Glioblastoma. After a few scans, lots of blood tests, and many different Drs, they found Allen had a grapefruit size hematoma (bleeding) near the tail of the pancreas. Drs did an angiogram and embolized the arteries that were actively bleeding. He also ended up having a blood transfusion because his hemoglobin was very low. The Drs believe they stopped the active bleeding which is not always 100% when doing the procedure. With the scans they also found a spot on the tail of the pancreas which might have something to do with the cause of the bleed. But more on that later. Allen's blood levels leveled out, pain subsided, all the signs he was ready to go home a week later. Yeah! We can go back on the medication that has significantly helped with his tumor!!
7). Not so fast.... Allen was home for not even 24 hrs and back in the hospital with a UTI.
This brings us to the present. As it stands this morning, Allen is schd to come home today (9/22) from the hospital. In a few weeks GI is going to perform an endoscopic ultrasound to determine what the spot is at the tail of his pancreas. But they need to be sure there is no active bleeding when this is done and his body has absorbed some of the existing blood. Surgical GI is leaning towards a cyst, but no guarantees until the scope is done.
Sending our love, gratitude, and appreciation to our wonderful family, friends, neighbors, and doctors! This journey wouldn't be possible without you!
Until next time,
Allen and Andrea
Escrito el May 1, 2013 10:54pm por Allen ParkesHello,Its been a fragmented year to say the the least.I just successfully completed brain surgery #5. It is pretty amazing that you have brain surgery and are home 3 days later! I am feeling pretty good with some additional sight issues. I am hoping that it is just a side effect of swelling at this point. Either way watch out where you are going in San Diego, as I have already run over about 4 people (walking not driving). Really hoping that my sight improves as inflammation dissipates.Oddly enough, the 2nd anniversary of my first surgery is within days.Happy Anniversary Bitch!I am working with my "crack team" of cancer researchers to calculate the next attack. We have narrowed it down to a new clinical trial or chemo option. We should have a decision by next week.Will try to update sooner than a year from now with a solution!Allen
Escrito el Apr 30, 2013 11:39pm por Allen ParkesWe posted a few new pictures of our recent, much needed Spring Break vacation. We had a wonderful time! Thank you to all who helped make our vacation possible. More to come very soon....Love,Allen and Andrea