Houston - day 5!

Houston - day 5. We finished our first week of the highest dose IL-2 with pretty good results. Joe's blood counts are a little off, but nothing that the doctor didn't anticipate on IL-2. The good news is that he has 2 days off - Saturday and Sunday - to recouperate. His protein levels are pretty low - because of draining the ascites- but we're trying to combat that with Boost, Boost breeze and lots of protein by mouth. He did walk home from the clinic today - the long route - and promptly fell asleep! If fatigue is the worst side effect - we're doing great.

We have one more clinic day for blood work and at 2 pm we hit the air to come home! We will then be home for 2 weeks. August 14th is his next appointment here in Houston to get another Trovax shot and blood work. Joe's brother Bill will be accompanying him to Houston for this endeavor.

Our weather this weekend shows to be beautiful so I hope we can get outside for a little fresh air and sunshine.

Thanks to all!

Love
Vicki

Houston Day 4!

Houston - day 4 - and the sun is shining - Yeah!

Went to the clinic today for our shot - an easy day - just spent a little under 4 hours there! :-) Anyhow, I've been fully trained and am now the nurse of choice giving shots here in Houston! Joe, once again, experienced minimal side effects from his shot and took it like a champ. He's resting comfortably right now. We have not gotten the results from his ascites fluid or the blood that they took - but he appears to be much better than the other day! He will continue taking the antibiotic and hope for the best! He was feeling so good this afternoon that he walked back from the doctor's office to the hotel! This is good news.

We plan to stay here over the weekend, having to change hotels for one night as they are upgrading the air conditioning here at the Holiday Inn. We'll be moving to the Best Western for the day and night. It' s close and should pose minimal issues. Monday we'll be traveling home- I can't wait to get there!

Our thanks to Lori and Tom DeMay for the generous gift sent to us here in Houston - words cannot express our thanks for your kindness.

Love
Vicki

Houston - Day 3

Today was another eventful day in Houston and at Dr Amato's place. Joe woke up in pretty bad pain at 2 am - abdominal pain - thus the day began very early for us. We called our research assistant who got us into the doctor bright and early and he took a look at Joe. I was concerned about an obstruction in his bowel or a perforation in his bowel or intestines, but the doc believes that he has an infection (another one) and put him on a strong antibiotic. I was able to hike to the pharmacy and get him the antiobiotics and a strong pain killer that he needed. It's pouring here in Houston - POURING- so traveling is - well interesting on foot! :-)

Day 3 of IL-2 went well again. Some shakes, fever and chills, but all in all, he is doing well with the medicine. And this is the worst of the 6 weeks! I don't want to get too optomistic....afraid that Murphy's law will come and bite us again! Thursday and Friday we'll pop into the clinic for Joe's shot - and then back to the hotel. We are hoping to see our nephew and neice Joe & Adrianne Martyniuk over the weekend if Joe is feeling well.

Continued prayers for Joe to make it through this journey with a postive outcome! Also prayers to Tom's friend Jake and Kate's grandmother Kathy who both got in car accidents this week. We are grateful that they are both physically fine though their cars are hurting!

Much love to the Pettinaro's who are taking Tom on vacation with them tomorrow - -fully knowing how much he eats! We are grateful for your friendship and support.


Love
Vicki

Houston - Day 2

Day 2 of our trek to Houston is going well. Between the raindrops we walked to the clinic this morning where Joe received a second liter of blood to help elevate his counts and then nurse Johnnie gave me the IL-2 lesson - it was not too bad. 3 pm was the second IL-2 shot. So far, so good. I have all of our counteractive meds awaiting to deliver when he needs them. While the medicine is cumulative, he's doing pretty well. Friday will be our worst day, but he has Saturday and Sunday off - then weeks 2-6 are 1/2 the dose of week 1 - - - then he has 2 weeks off. Each cycle is 8 weeks followed by restaging - if he has regression we go on - if he has progression - we find another cure. This trial is for 2 years. Year 1 is Trovax and IL-2, year 2 is Trovax only.

Thanks to all for the prayers and good thoughts coming our way. This is a hard road that we're traveling and we are grateful for the help along the way.

Happy birthday to our nephew Brendon!

Love
Vicki

Let the healing begin......

Well, after much to-do, we arrived in Houston on Sunday at 5:30 pm. Took us 13 hours to get here, but we're here! Too many planes were either broken or late - but with a little finesse and a lot of coercing - we got here - not the way we planned -but here. We're staying at the Holiday Inn Medical center - about 1/4 mile from Dr Amato's.

This morning we took the trek (I walked - Joe wheeled) to the good doctor's place to begin the process that we have all waited for in the last 7 months. He got a bunch of blood work done and then his Trovax shot at 1 pm. Since his hemoglobin level was so low, they had to give him a pint of blood before the IL-2 shot - and I had to find a pharmacy to supply us with the medicines we need to counteract the side effects - - -after 5 pharmacies and a tearful phone call to Maureen, our tech took pity on my poor tired feet (I was on foot finding the pharmacies) and drove me to CVS about 5 miles away - I was attempting to walk it to get the meds - so we literally just got back from the clinic - it's 8:30 pm Houston time. He got the IL-2 shot in his belly at 7:27 pm. I am anxiously sitting here waiting for the side effects to take over....

Side effects include fever, chills, rigors, nausea, low blood pressure, swelling and a general feeling of ickiness. So far, he is a champ. We are premedicating him with Tylenol for fever, Aleve and Zofran for Nausea and Demerol for chills. I purchased pedialyte and Gatorade for if his blood pressure drops. They said that the side effects will occur in about an hour and last 4 hours. After that - he will be very sleepy.

Tomorrow we will go back in around 10 am to get another liter of blood and his second IL-2 shot. Wednesday we go in for the IL-2 shot only, Thurs and Fri we're on our own with the IL-2 shots here in the hotel, Saturday and Sunday he will be sleeping and getting some recovery time. Monday he has more blood work and then we take off for home at 2 pm. IL-2 is on schedule for Monday - Friday for 6 weeks, then 2 weeks off. The effects will be cumulative so side effects may escalate as he builds up the IL-2 in his system.

Please pray for continued strength for us to go on and for this trial to work for Joe to have regression of his disease.

I appreciate all the help that you folks are doing for Gina and Tom at home.

Love
Vicki

Continued saga with Ascites

Joe continues to fight the fluid build-up in his abdomen - getting 6 liters of fluid drained twice a week. Because of this, he is weaker and losing more weight than he can afford to! He will have another abdominal catheter inserted Friday at Parkridge in an effort to drain the fluid slowly and help relieve the pressure. He's eating, but we're draining more protein out of him than we can keep in.

We are all set to leave on Sunday morning for Houston. We'll be there until the 31st. On Monday he will get his second Trovax injection and after an hour they will give him the IL-2 injection. We'll monitor his symptoms and hopefully have enough meds to counteract any that he has (fever, chills, nausea, low bp, headache). Paul found a great worksheet for me on the internet so we can record the symptoms and chart the meds that we used to counteract them. On Tuesday they'll train me to give both the IL-2 injection and the medicines to counteract side effects. On Wednesday I will do the administering under their watchful eyes. After that, I am on my own (Yikes). He will get a higher dose of IL-2 his first week and 1/2 that dose for the remaining 5 weeks. He does get Saturday and Sunday off! We'll do this (6 weeks on/2 weeks off) for a year assuming that he responds positively to the medicines. It just has to work.....

So wish us well as we set off for Houston. Be careful on the road as Tom passed his road test! Another teenage driver has emerged! :-)

Thanks to the support from the guys at Caldwell who shaved their heads. You are priceless friends to Joe.



Happy 50th anniversary to my parents on Friday. We love you.

Additional prayers for Scott Anderson are needed as his biopsy has revealed malignant tumors in his brain. We are praying for his recovery.

Love,
Vicki, Gina & Tom

Houston Update

Our Houston travel plans have changed due to the fact that Joe didn't get his Trovax until the 7th of July.

So - now we'll be in Houston:

July 24-31 Trovax booster and IL-2 begins
August 14th Blood work
August 21st Blood work
September 15th - 18th - restaging
September 25 Blood work

If anyone out there knows how I can make plane reservations easily with flexibility, please let me know! I've tried Travelocity - there's no refunds and no changes allowed - meaning I have to bank tickets for use later if something changes - and for us - things are not ever smooth! I can use some advice from those who travel! Thanks!

Let the healing begin......

Trovax began

It was a hot few days in Houston and our frustrating un-luck followed us too. But all was not lost......Joe got his first Trovax shot on Friday at 1:45 pm. Only 5 days later than he was suppose to start - but heck - at least it happened! Trovax is a live vaccine that is made in Oxford, England and was shipped to Dr Amato's office - unfortunately some paperwork snafu stopped the shot on Thursday afternoon when we arrived - next time was 6:30 am Friday morning - changed to 1 pm Friday afternoon. We only had to change our travel plans (for the 6th time) but I was adament that we were NOT leaving Houston without the shot! I dug my heals in and stood as tall as one with my small stature can stand! (Gina calls it 4 ft of angry). Alas - he has begun the trial. And there were no side effects. NONE. That was wonderful as well. The entire way home I kept asking him how he felt - - and he said he was reaching deep to feel something- NOTHING. That's music to my ears. Now, let's hope it works.....

So home we are for a week then back off to the good doc's house for 7 days - July 17th - 24th - as he will have a Trovax booster on the 17th and begin low dose IL-2 that week. This is an injection and side effects training time for me. The 24th they will check his blood levels and then we can travel home for a 2 week period where he'll get IL-2 nightly Monday - Friday via injection. Weeks 2-6 are 1/2 the dose of week 1 - so if week 1 goes well....weeks 2-6 should be a walk in the Houston park!

The fluid buildup has continued and he had to have another pericentisis in Houston - 6 liters drained....but he's a trooper and afterwards is ravenous!

This week Joe will visit with Dr Kohli to see if he will continue to monitor his care here in Rochester and work in conjunction with Dr Amato. We believe he'll be open to this venture. If not, we have a backup plan in mind.

So - keep the spirits high - the first 8 weeks are the hardest as one doesn't know if it's working. By 9/11 though - we will know. Let's hope that day is a postive one.

A Heartfelt Happy Birthday to Joe's mom on Monday! Have a wonderful day and a great birthday mom!

Love
Vicki, Gina & Tom

Houston here we come - - again!

Last Tuesday we (Paul, Maureen, Joe and I) traveled to Houston to see Dr Amato. While Joe was pretty tired, he held up well through the airports and 2-2 hour flights. Our appointment on Wednesday was at 11 am, but reading through the oncology list-serve that we're on we knew that we would be waiting a LONG time to see Dr Amato. Turns out we saw him around 4 pm - he talked with us until about 5:30. His initial consult read the scans that we brought and he gave us some sad news - that Joe has mets in his lungs - one in each - about 1 cm large. We talked about the fluid that has reaccumulated in his abdomen despite the shunt and he said, matter of factly, "we take care of the cancer, the fluid will go away". He was definitive that the Sutent is NOT working and that the tumors have continued to grow in spite of the Sutent. He gave us 3 options that he was thinking of for Joe -
Escalating Nexavar, RAD-001, or Trovax and low dose IL-2

He said that he needed to see additional testing before he determined which clincal trial would be right for Joe. He then set us up for tests on Thursday with a follow-up visit to him right after.

Thursday was busy from dawn to dusk with testing (MRI/CT scans) and fighting with Blue Choice for a referral number. The folks at Methodist hospital along with Amato's staff are wonderful though and worked with us to get what the good doc needed. After we were done we scooted back to the 20th floor to see the results. Amazing, he had Joe's scans right on his computer and he showed us everything. There is more bone involvement than he thought - with mets to each of the hip areas and pelvis moving up the spine. He didn't address the shoulder which we know has bone involvement. He showed us the tumors on his lungs and we were all amazed at how much fluid is in his belly - chylous ascites - which still plaques Joe today. Because he has no tumors in his other soft tissue organs (Liver, pancreas, stomach, bowel, intestines) he chose to put Joe on the Trovax/IL-2 trial. This trial consists of a shot of Trovax (a vaccine derivative of small pox) with low -dose IL-2 - the drug that we had scheduled Joe to have at the very beginning of his diagnosis. Every 8 weeks Joe will be 're-staged' meaning he'll have all of the necessary scans to determine if the medicine is working (regression of tumor) or not (progression of tumor). If he is regressing, we'll remain on the trial. It is a 2-year trial. Trovax is given as a booster and IL-2 is given 5 days on/2 days off - 4 weeks on/2 weeks off at home by me. Side effects of Trovax are NONE :-) and low dose IL-2 similar to the interferon that he was on. On Friday they took another 5 liters of fluid from his abdomen.
On Monday Joe will have a few more tests done here in Rochester and on Wed morning 6 am we'll be back inflight to Houston to start his clinical trial.
Our schedule to return to Houston is:
July 5th - Trovax injection
July 17-24th - Trovax injection and IL-2 begun, blood work the 24th (have to be there a week as it's his first week of IL-2)
Aug 7th - Trovax booster
Aug 14th - Immuno blood work
Sept 8 - CT scans
Sept 11 - see Dr Amato for results and re-staging

All in all, I believe we have hope. Dr Amato is everything that we heard he was and more. His wealth of knowedge coupled with a wonderful sense of humor (he never stopped busting on poor Maureen) makes for a terrific doctor. He has given us back some hope. Hope because if this trial does not work, he has others. Hope because he won't give up. Hope because he wants to take all of the worry from us. Hope because he cares.

Thanks to all who helped while we were away - Tom and Gina were in good hands! Thanks to Blake for keeping Tom occupied when Gina left town! Gina is currently enjoying a few days with her cousin Bryan Carroll in his school town of Georgetown (and loving every minute of it)! Thanks to Paul and Maureen for coming with us. Thanks to all who donated funds so that this could be possible. Thanks to all who called and inquired about Joe and the kids.

Please put Kate's dad Scott Anderson in your prayers as he undergoes a biopsy on a brain tumor next week. Our thoughts and prayers go out to he and Cindy.

Love,
Vicki, Gina & Tom