A New Reason To Hope

I just received a telephone call from the University of Washington Cancer Center. They have agreed to proceed with the Selective Internal Radiation Therapy as soon as possible. That is the procedure where they will implant radioactive isotopes into Jon's liver that are designed to kill cancer cells and spare normal tissue. It is not a cure but it is by far our best hope of shrinking the tumors in the liver for a possible resection, cyberknife, or ablation down the road. His pancreas and surrounding lymph nodes still look clear. There is one small spot in his right lung and no one can decide whether or not it is or has ever been cancer.

We are now just awaiting a call from the scheduling department. Jon and I will go in for a preop visit to meet the doctor and review the procedure. It is one night in the hospital and considered minimally invasive. He is weak from all the chemo so he may need a few weeks before he is strong enough to tolerate the whole thing.

That's all I know for now!!

Since Tuesday we have had an interruption in the cancer routine after receiving a call from Elizabeth saying she was on her way to the emergency room with severe abdominal pain. By midnight she was in surgery for an emergency appendectomy at Overlake Hospital. Today she is home with us while she recovers. Her pain is minimal but she's extremely nauseous from all the drugs they gave her. She expects to be back to her place by Sunday and to work and school on Monday.

Jon's had a better week and rose to the occasion when Elizabeth was sick. He returned home from the emergency room to stalk up on sleeping bags and thermarests so he could sleep in my SUV while I curled up on the chairs in Elizabeth's hospital room. He's back at SCTWC for his vitamin C infusion this morning. Even though its not under the best of circumstances, its nice to have Elizabeth home. Jon, Kelsey and I all piled in her bed last night and watched Sex In The City dvds with her. It's quite an education for the men!

I haven't heard back from UW about Jon's treatment yet so I put a call into them this morning. I also need to mail his scans to UPMC and will overnight them this afternoon. We are still banking on the Selective Internal Radiation Therapy.

I had an interesting conversation with the University of Washington today. They called to tell me that Jon was not a candidate for the Cyberknife and suggested chemotherapy directly to the liver at Sloan Kettering in NYC. I told them I had already talked to SK and they had nothing to offer (also Dr. Chue is anti-hepatic portal chemo since the outcomes aren't great) but asked about the Selective Internal Radiation Therapy. Low and behold they actually do that procedure at UW and my nurse coordinator was going to email the radiation oncologist who performs the procedure. It would be nice if we could have all the treatment close to home, even though I would love the opportunity to see my family in PA. I expect an answer from them tomorrow.

We are at chemo today and Jon is feeling better than he has all week. I've always said that he just does this for attention! When I walked in with his lunch he was surrounded by a cluster of nurses attempting to repair the IV that just exploded another vein. The guy will go to any lengths to get people to wait on him!

In all seriousness, he is looking much better. It always seems to take a few sessions to get the side effects of a new chemotherapy under control. Jon has FINALLY learned his lesson that he does have to take the medications to control his side effects if he wants to survive. We are hoping with the new meds he will fare better through the weekend.

I just talked to Stanford Medical Center after reviewing Jon's scans. At this point the large tumor in his liver is still too large for the cyberknife. It would have to shrink approximately 4cm for the procedure to be viable. Since Stanford has a more aggressive approach I am expecting to hear the same response from the University of Washington. There always remains the possibility of doing the cyberknife after more chemotherapy.

Stanford's next recommendation was the Selective Internal Radiation Therapy that we have already been researching. My dad has some connections at the University of Pittsburgh Cancer Center who currently utilizes this procedure and I received a telephone call and a contact address today to send Jon's scans and records. When I spoke to the nurse coordinator she informed me that they had not specifically used this procedure for metastatic pancreatic cancer but had treated both metastatic colon cancer and primary liver cancer at their center. She is consulting the radiation oncologist this afternoon and should call me back by tomorrow. There are seven other cancer centers in the United States who use this approach so we have several other options. We picked UPMC first because my family is there.

The tumor marker better be down on Tuesday. Chemo is bad enough when its killing cancer but I can't stand the thought of Jon going through all of this and the cancer still growing!

This week as been a little better for Jon. They tell us at the Vitamin C infusions should help him feel better as well as kill cancer. Dr. Reilly did up the infusions to twice a week so we have ended up at two infusions, three acupunctures and one chemotherapy per week. Jon still sleeps a lot but feels pretty decent in the morning and can get a few things accomplished before lunch. He naps most of the afternoon, has dinner and is then pretty tired the rest of the evening. He definitely has chemo brain which means his memory is even worse than before cancer(which will explain why you will be receiving two birthday cards from us, Stac).

I had a long conversation with Stanford University today and sent all of his records for review. I discovered that they are the innovators of the Cyberknife and have the most current applications so we may end up selecting them over the UW after all. Both will be reviewing Jon's records next week. He asked me to also send the picture I posted on the blog a few months ago of him flexing after his workout, just in case they're not sure he can tolerate a surgery. I am still awaiting a return telephone call from the University of Pittsburg regarding the Selective Internal Radiation Therapy.

It's been an interesting 24 hours being bombarded by return telephone calls and emails. Here's the scoop so far.

1. Seattle Cancer Care Alliance (UW and Fred Hutch) offers the Cyberknife (high dose, specific radiation). I spoke with the facilitator of the Liver Tumor Center at UW today. I sent all of Jon's records and scans to her and she will present them to a board of cancer specialist ranging from oncologist to radiologists to surgeons on Tuesday. After the review the data they will let us know if Jon is a candidate for a liver resection with the Cyberknife.

2. I posted notices on a Cyberknife website and had a response from a surgeon that thought a better procedure would be Selective Internal Radiaton Therapy. This is similar to that radioactive seeds but cover a larger area. The radioactive spheres contain beta radiation and are implanted through a catheter into the liver. Once implanted they are selective to destroying cancer cells while preserving healthy tissue. This should overcome the obstacle of the close proximity of the largest tumor and the inferior vena cava. This procedure is offered at only 8 centers in the US, our two favorite picks are University of Pittsburgh and MD Anderson in Houston.

3. Jon's brother, Steve, sent us a link last night to John Kanzius who has pioneered another procedure known as Kanzius Radiofrequency Therapy. This procedure is similar to the Radiofrequency ablation, but implanted in a similar manner as the Internal Radiation Therapy. In tests on animals this procedure was 100% effective, however it is not yet approved for humans. The studies are being performed two of the same places as the SIRT, University of Pittsburgh and MD Anderson. I have emails to both of them to request a review of Jon's case for either procedure.

4. Stanford offers the Cyberknife and tomorrow I have a telephone appointment with the surgeon. We would like to stay local if possible since UW also offers the cyberknife but will travel to whichever facility offers the best options.

Jon seemed better today then he has in weeks. He came to the office for a massage (with sesame oil to up his platelets!) and the therapist let him nap for an hour afterward. Tomorrow he goes for his first Intravenous Vitamin C and acupuncture. Looks like he will have one chemo, two acupuncture, and one Vit C Infusion per week for the next 8 weeks. By the end of that time we should have a good idea of what other options are available to us.

It's pretty strange but I would say that Jon has felt better today than he has in weeks. Maybe its the steroids or all the fluids they give him. You would think that on chemo day he would worse than normal!

Three accomplishments for today
1. Kelsey drove my car to all of his days events for the first time alone.
2. Elizabeth made mashed potatoes.
3. Stanford emailed me back with the telephone number for their Cyberknife program and didn't tell me that surgery was impossible!

We are back at chemo today and surprisingly Jon's bloodcounts are good enough to move forward with chemo. His WBC are up because he actually voluntarily accepted Neulasta injection last week and although his RBC, hemoglobin, and hematocrit are below normal they are still good enough to receive chemo.

The only good thing I will say about Jon feeling so crappy is that he is actually much more cooperative and compliant than his normal self. I guess even cancer and chemotherapy can have some positive side effects.

I've been diligently researching our surgical options and have contacted all the major cancer centers throughout the US. So far the best intervention we've found is a combination of radiation and surgery called Intraoperative Radiation. It is a procedure where all cancer that can be surgically removed is extracted and then any inoperable tumors receive a high dose of radiation directly to the tumor. The question are 1. Is Jon a candidate due to large tumor in the liver abutted to the vena cava? and and 2. Can the radiation treat a larger area than ablation which has already been ruled out due to the size of the tumors. Originally I discovered this procedure at Sloan Kettering in New York but found this morning that it is also offered at Seattle Cancer Care Alliance (UW and Fred Hutchinson). I have phone calls in to the local surgeons who perform the procedure and am awaiting their return calls.

Jon continues to feel weak and tired. He probably sleeps about 16 hours a day but still manages a walk up and down Lakeland Hills every couple of days. He also got out in the yard on Saturday and cleaned up the trees that fell down in the spring snowstorm, however that zapped his energy for the rest of the weekend. I will be surprised if his bloodcounts are good enough to receive chemo on Tuesday. They did another blood test to see if he is a good candidate for the Vitamin C infusion and we should get the results back today. Hopefully those will start this week.

He's on a mission to have surgery again. Understandably so since this chemo is not very well tolerated. I spent last night emailing John Hopkins, USC, Stanford and UCLA Medical Centers in hopes of finding a surgeon that will consider the operation. Jon still feels strongly that it's his best option and wants to be ready to go with a surgeon in place when the time is right.

Thank you to everyone who has called and emailed, I apologize for not being able to return all of the phone calls but I am doing pretty good on the emails since I can answer them at random times. We appreciate all of you encouraging words and prayers.

Not Our Best Month

This last month has probably been the most negative news we've received since Jon's original diagnosis. The last scan showed progression of his tumors in the liver, his alkaline phosphotase is over 200 and his tumor marker is in the 40s. His white count and absolute neutrophils are the lowest they have ever been and his RBCs, hemoglobin and hematocrit are in the toilet. He feels pretty tired but still managed to hike Lakeland Hills twice this weeks. No weight work outs.

The good news is the doctors at SCTWC are still working the program. Jon hasonly had three chemos with the new cocktail so its too soon to tell if it will be effective. Dr Reilly (naturopath) is implementing IV infusions of Vitamin C which has shown promising results in other cancer patients and is increasing acupuncture to three times a week. That should all start next week.

I've spent the evening researching the Vitamin C treatment and just printed out 60 pages of pancreatic cancer survivor stories for Jon and left them on his desk. They guy could use a little encouragement these days.

I've decided to take a leave of absence from my job with the Department of Health until we get through this rough spot in the rode. I plan to go back in September.

Kelsey passed his driving test!!

We had a good trip to San Francisco, definitely a city where I would want to spend more time. Jon did pretty well...he saw all of the sights he wanted to see and had lots of afternoon naps. The last day was difficult for him and I'm not sure exactly why, usually his chemo side effects hit him on Thursday but they came raining down like a ton of bricks on Sunday. We had slept late that day and went to the waterfront to tour a World War II submarine. When Kelsey and I went on to the Palace of Fine Arts Jon opted to sleep in the grass. I was grateful he was wearing a decent pair of jeans and not his old "I won't buy any new jeans because I have cancer" jeans. The police would have definitely mistaken him for a homeless person and hauled him off. He's much better today and he and Kelsey have been practicing for Kelseys drivers test tomorrow (yes, Kelsey is EXTREMELY nervous!)

Back to chemo tomorrow and an appointment with the naturopath, Dr. Reilly.

Jon had his second chemo today of the CPK11 and Cisplatin. His hematocrit and platelets were a little low (which would account for the recent fatigue) but everything else was pretty good. The white counts had dropped 2 points but were still in the normal range. Its a little disconcerting to have things dropping so early in the game but I would imagine his bone marrow is pretty darn tired after all the chemo he's had (I've honestly lost count, I need to go back and add them up)

Jon had a childhood friend, Michael Thompson, visiting today who escorted him to chemo. They had a good time reminiscing about all their antics growing up and spent the afternoon "solving the world's problems" I'm taking one more week off of chemo to get the rest of my life in order while Jon feeling fairly good. I'll start taking him again next week, after Kelsey passes his drivers test :)

We are leaving for San Francisco on Thursday with our friends, the Mortells, for spring break. Kelsey and Nadine met in Kindergarten and we've been family friends ever since. It should be a nice break and we will also be taking a tour of Yosemite which Jon and I have always wanted to do.