Almost done with Radiation!

Well, Joe has only 2 more radiation treatments - which is great news! The radiation makes him very tired - - although he has completed the cycle on his shoulder, he is still receiving it in the pelvic and hip region. Today and Monday - then he graduates! He saw an orthopedic oncologist on Wednesay who is concerned with the cancer growth in his pelvis/hip region - he had a CT scan yesterday to assess the bone damage to determine if there is a need for a rod to be inserted into this area for stability. We'll find out the answer to that question in about a week. My hope is that he does not have to undergo further surgery. It will take him about 2 weeks to recover from the radiation and get ready for IL-2 here at Strong.

We're off to Houston on Tuesday.

Joe, Gina, Tom & I are tremendously humbled by the outpouring of generosity from Caldwell manufacturing who had a luncheon fund raiser for us and the Spencerport soccer house and travel club who also held a donation fundrasier for us. The generosity of you all has been overwhelming and we are very grateful for your support. The money will be put toward getting Joe and I to Houston as many times as necessary to cure him if high dose IL-2 here in Rochester is not effective. While we're praying that he is in the small percentage that gets a full response, we need to have another avenue if this is not the outcome. I am confident that Dr Amato will have something in his bag of renal cell tricks to evict this cancer from Joe if he does not respond to IL-2. There's just too much living to do yet! Words cannot adequately express our thanks to you all - for the time and effort you all put into doing these fund raisers, but mostly for the knowledge that we are not alone - we're never alone when we have such a huge wonderful group of friends and family. Your continued unconditional love and support is heart warming.

Thank you doesn't seem adequate enough for all you have done. There's too many people to publically thank (and I would only miss someone anyhow!) so THANK YOU ONE AND ALL! :-)

Next week will be a busy one for Joe but it's also a huge step forward in taking control of the disease and working together for a solution.

Much love,
Vicki

Treatment Update

Yesterday was a busy day for Joe and doctors!

After having his radiation treatment in the morning he headed to see the nutritionist. He's doing well but told to eat more! Dan - bring over that sub now!!! :-) After that we headed to see Dr Kohli. Dr. Kohli agrees that now is the time for high dose IL-2 treatments for Joe. This is wonderful news! Joe took his last Sutent pill on Tuesday night and will be off the drug for a month in preparation of getting high dose IL-2. He has to complete a series of tests before he's admitted including EKG's, bone and CT scans. Once these are complete he will be admitted to the hospital for IL-2 treatments. The treatment takes 15 minutes to administer, are administered every 8 hours for 5 days. Flu-like symptoms (multiplied by 1000) occur approximately 2-3 hours after administering. The nurses will be able to counteract most of the side effects (high fever, low blood pressure, rigors, chills, shakes, nausea) with other medicines. Because of this, sorry, but there is a no-visitor policy.

We are heading off to Houston on June 27th to see Dr Amato. We need a 'door number 2' if IL-2 fails. Dr Amato is on the cutting edge of renal cell and has clinical trials at hand that others do not. While we're all optomistic that IL-2 will work, reality is that it has a total response in 7-8% of the population, a partial response in 8-20% of the population and zero response in the rest. Because of the low odds, it's prudent to travel to see him now, while Joe is feeling better and strong. If we need him in the future, our initial contact will have been made and options given to choose from.

Much thanks to the Caldwell gang for taking Joe to radiation daily!

We'll keep you posted. Now is the time for concentrated positive energy and prayer to Joe - that the IL-2 will be successful and he'll be back on the soccer field in no time!

Love
Vicki, Gina and Tom

New news from Roswell

We saw Dr Wong on Friday the 9th for an updated visit and see if he was now willing to give Joe IL-2 since the fluid appears to be under control. After what was a long wait, we were all pleased with his diagnosis - that he believes that there is no further growth in the bones and that the Sutent is indeed working! Since his last scans, Dr Wong sees no clear evidence that the Sutent is not working to kill the tumors. He believes that his last bone scan was negative for 'hot spots' and feels that the tumors are being controlled by the medicine. He also was surprised that Joe is on Sutent daily - the normal protocol is 4 weeks on and 2 weeks off. Joe's been on since early March with only a one week reprieve. Dr Wong will be talking to Dr Kohli to understand his thoughts concerning disease progression - then will be back in contact with us. Bottom line - if Sutent is working - he sees no need for change. If the disease does progress, he is more than willing to give Joe high dose IL-2 at Roswell. He feels that he will tolerate it even with the fluid and is willing to give it a shot. However - if the current treatment is working - he doesn't feel the need to introduce a more invasive therapy at this time.

Wednesday we see Dr Kohli and we have a number of questions for him! Thanks to Ray Lanzafame, we're reading cutting edge information on renal cell cancer and have learned of a number of new drugs that are promising for cure and/or life longevity. Those we will discuss with Dr Kohli as well as taking a break from Sutent before we travel to Houston on the 27th. The Sutent, along with the radiation, is taking a toll on Joe's overall feeling of well being. He is very tired and losing his beautiful thick hair! The fatigue concerns us all as the trip to Houston will be taxing for him. BUT - we're looking forward to seeing Dr Amato and getting another expert opinion on the treatment course.

For now - we're jazzed with the information from Dr Wong and excited that at least Joe has the opportunity for IL-2. There's no words to thank the Lanzafames for fighting to get the shunt in Joe and convincing the doctors that it was the right move.

For now - Joe is eating and sleeping, but was able to see one of the tournament basketball games this weekend that Tom played in.

Thanks to all for sending over dinner - he is enjoying the meals a little at a time!

Love
Vicki, Gina and Joe

Treatment Update

Wow, it's been a busy few weeks.

Joe felt well enough to attend Caldwell's steak dinner with his friends at work. He even stayed to play cards with the troops. Thanks Dan Campbell - for thinking of Joe to bring him and taking care of him while he was there. It was just what the doctor ordered!

Today was Joe's first radiation treatment at the Cancer center at Strong. It was pleasantly uneventful! He was marked (with literal markers but also tatoo'd) on his shoulder, pelvis and hip for proper radiation placement. Now that he's been through his first treatment, he will continue for 14 more (continuous Monday - Friday) until done. This will, we hope, kill the cancer cells in his bones, strengthen them and eliminate pain in the areas. The good news is that he felt no pain and was feeling well afterward. The side effects include fatigue and redness of the skin area.

Tomorrow afternoon we will venture back to Roswell Cancer center to see Dr Wong. Our goal here is to get a thumbs up for high dose IL-2 treatment. Joe's been doing GREAT with the fluid in his abdomen - the shunt appears to be working well for him and/or the fluid is reducing - which would be the best news! Since he was tapped before Memorial day he's not experiencing any abdominal distention and he is eating normally. Last night was his last TPN (IV feeding system) meal! This is WONDERFUL news for us all!

We are still on track to see Dr Amato in Houston (Methodist hospital)on Wednesday June 28th. While the oncology list serve states that 'you could wait 4-9 hours to see the doctor' we're still excited to see what he can offer Joe to put him in remission. Thanks to Donata Sands and Gloria Sampson for finding a wonderful website that works to send cancer patients out of state on corporate jets for treatments. Maureen has already dug into this and we are going to try to see if we can use their services pending Dr Amato's treatment plan. We are hopeful that Joe will qualify for one or more of his trials. My sister worked tirelessly through the Blue choice system to get this approved - - -- thanks Toni - can't live without you!

Other thanks:
Thanks to the Pettinaro's and the entire Spencerport United BU17 team for making us dinner every Monday night. You are all our angels.

Thanks to Don Cameron for continuing to send Joe Dixie CD's for his listening pleasure.

Thanks to David and Donata Sands for the lovely statue of St Jude

Thanks to the Andersons for their continued unfailing love, cards and inspiration to us all. We love you Kate.

And lastly thanks to my children. While I was away on business they took charge and took excellent care of Joe...didn't miss a beat...from TPN to medicine to calling the doctor and visiting nurse service....to feeding Joe good food...to making him comfortable to sit at Tom's soccer game and keeping him company at home....even with Gina in school and working full time...and Tom managing school and soccer.....their love and attention is unprecidented and I am so very proud of them. They, along with Blake and Kimmi are always there to lend a helping hand. I am, by far, the luckiest mother in the world.

Vicki