Tom from Pennsylvania - Dx 2002, RIP 2021

[Kathy]

December 6, 2002 is when we first heard the words 'You have Cancer'. I had no idea what ASPS was, but I would soon know more about it than the first doctors I went to visit. In fact, the doctor who diagnosed us in State College, Pennsylvania admitted that my case was the first case of ASPS that he had seen.

On the drive home from the diagnosis I felt a lot of pity for myself -- At the time I was 27, married with a son and a child on the way. I had no idea what the next step was, but I finally had an answer for the shooting pain in my leg that had gotten progressively worse over 9 months.

The doc that diagnosed me said that the tumor's closeness to the spine would make surgery difficult. I questioned whether the 9 months I fought my insurance company to pay for a CT Scan made a difference in the disease's progression. Prior to the CT scan, neurologists explained that a tumor was 1 in 10,000. It was most likely a slipped disc or something else pinching a nerve --the CT Scan will just assure that its not cancer and give us the reason for the pain. I knew my fate prior to diagnosis as the neurologist refered me to a specialist to interpret the CT Scan. I looked up the specialist in the hospital directory --surgical oncologist it said --Doomed I thought...

I owe a lot to my wife and Mom. They've been the researchers -- I started the journey in Pittsburgh with Doctor David Bartlett. He is still one of my favorite docs. He performed my first surgery and removed a 13cm tumor from the retroperiteneam. Because the tumor twisted around nerves, he had to remove the femoral nerve The femoral nerve is what causes the quad muscle to fire --Essentially if I put weight on my left leg without locking the knee I fall. Because the doctors had never seen a person without a femoral nerve, they didn't know what to expect --I heard everything from 'you won't walk again', to 'you will walk only with a walker', to 'you should be fine, just not able to run'. After a lot of PT, I am happy to report that I walk fine and most people can't tell of my 'problem'.

After the surgery I enjoyed a period of about 3 years with no new evidence of disease --I had some spots in the lungs that didn't change, so the doctors following me were reluctant to diagnose them as cancer. In the summer of 2005 a met showed signifigant growth. I was referred to Dr. James Luketich in Pittsburgh who removed the met laproscopically.

Post surgery I consulted with doctor Robert Maki at Sloan Kettering and Doctor Jeffery Morgan at Dana Farber. Doctor Maki oversaw treatment of Nexavar. I saw disease stabilization for 5 months and then growth again. That is when Doctor Morgan suggested a new trial --ET 743. He did a little research and found that FOX CHase Cancer Center in Philadelphia was doing the same trial and was much closer to our home. I embarked on an ET 743 and Docetaxil trial oversaw by Doctor Margaret Venmehren. January of 2008 was my final treatment. It seemed to stabilize the disease and there was slight shrinkage of one spot.

The chemo gradually made me very tired and work became more difficult. I have been fortunate to work throughout all of my treatments, but it was becoming more difficult. Plus the 40-50 mets showing up on the CTs were not going away with the treatment. My wife started researching again and, with the help of this site, learned about Dr. Rolle.

We are planning to go To Germany this March (2008). We pray the Doctor Rolle can help us --he sounds amazing. We will keep you posted!

[Olga]

Tom and Kathy, this is great that you found us and now joined us and shared you story. It confirms my deep belief that we all benefit from the information exchange and sharing, not to mention the support and love we give each other here. ASPS is unique and every single fact is important. For example - we did not have any cases of this combo - ET 743 and Docetaxel treatment for ASPS and we only had one case when a patient was treated with the Nexavar only (sorafenib). Now if everything will be OK and the surgery will proceed as planned in Coswig by Dr.Rolle we will have an information about necrosis in lung mets from the ET 743 and Docetaxel treatment. Tell Dr.Rolle that we all are very interested to see the pathology results in the removed mets, we are looking for the signs if the chemotherapy was active or not. Stable size of the lung mets for a few month or a few years is very common in ASPS but the pathology gives a more reliable feedback. Good luck with the surgery and a trip to Germany.

[Elaine Anderson]

Thank you for sharing your experience. My son, Sean was diagnosed five years ago and he has been a patient at Sloan Kettering. Their surgeons are excellent. However, as his insurance coverage changes and he moves from pediatric oncology to adult oncology, we have been considering Fox Chase Cancer Center. Your update to this website helps us evaluate our options.

[Kathy]

Elaine,
Please let us know if we can help in any way! We feel like we have been just about everywhere. The best way to get through this is to have a network of people to talk with. We feel so blessed to have found this site!
wishing you and your son the best!
Kathy

[Kathy]

Dear Friends,
We are preparing for our flight to Germany. We leave on Tuesday and surgery is scheduled for the 17th. Dr. Rolle and his staff have been amazing. We will keep the updates coming..... keep Tom in your prayers!
kathy

[Kathy]

We are back from our first trip to Germany. The first surgery was successful. Tom's ct scan showed 15 tumors, but Dr. Rolle found and took out 36 from his right lung. We will go back in approx., 5 weeks and Dr. Rolle will operate on the left lung.
The experience was amazing. We felt and imediate connection with the Doctors, nurses and staff. The care they put into his prep and recvory, well it was inspirational. Everything went really well. Surgery was on March 17th and we returned to the states on the 2nd of April. Tom was back to work on the 3rd! The recovery from this surgery seemed easier than the recovery from the 1st lung surgery he had here in the states back in June of 06'.
If anyone would like more information, please let us know. I apologize for not posting sooner and for the short post now, but please let us know if you have any questions. It has been hectic returning home and getting back into our routine with our three children, and Tom returning to work, but we thank God everyday for helping us find your website and learning about Dr. Rolle. We don't now where we would be without him!
take care and thank you all,
Kathy

[Bonni Hess]

Dear Kathy,
Thank you for your very thoughtful update on the successful outcome of Tom's surgical procedure in Germany to remove the mets from his right lung. This is WONDERFUL news and I am so happy to hear that the procedure went so well, and that Tom has made such a rapid recovery and has already been able to return to work. It is very encouraging to know that this new less surgically traumatic treatment option appears to be very successful in removing not only the CT visible tumors, but also those which are not yet large enough to be seen on the scan. Our continued special thoughts and best wishes will be with you for a safe return trip to Germany in five weeks and another very positive experience and successful outcome to Tom's surgery on his left lung. We will look forward to your update when you return and when your time and busy schedule allow. In the meantime, please take care and enjoy a beautiful Springtime.
With special caring thoughts and continued Hope,
Bonni

[Sherry]

Can you give me the information for Dr Rolle in Germany? Please e-mail it to me at angiel101@hotmail.com I'm also wondering where you live Kathy and anyone else in PA. I'm in Chambersburg and am about to go to John's Hopkins...it's a 2 hour drive rather than a 3 hour one and we can stop at my in-laws in between.

[Ivan]

Kathy, when you guys get back email me. I believe Tom is doing well I have some photos for you.

Ivan

[Kathy]

I know it has been a long time since we have posted. So much has gone on. Both of TJ's surgeries in Germany were a success. He had a follow up scan done in August, and for the first time since his diagnosis, we thought he would be followed locally. The local Doctor called to tell us that the ct scan showed growth in the mass in his L4 verterbrae... we did not even know he had a mass there! The local ongologist ordered an MRI and wanted to include the brain, just to check it out. As it turned out there was a small met in the brain. We went to meet with Dr. Bartlett at the Hillman Cancer Institute in Pitt. He was able to get us in with a Dr. Konziokla - The Gamma Knife procedure was done a few weeks ago. We have also met with Dr. Flinkinger and Dr. Gerstien (I think I spelled that wrong), They are both out of UPMC. They are going to do Synergy on the Met by the spine. I will continue to keep everyone posted. We keep you all in our thoughts and prayers!
God Bless,
Kathy

[Olga]

Kathy, I am sorry to hear about this news. It is good that this local oncologist and his radiologist have found these mets early and did not missed them on the scan. There may be some advantage that this spinal met was not found earlier and did not stay in a way of the lung surgery, so it was done and now you can concentrate on the next treatments. I found the information about Synergy which is an advanced new type of the radiosurgery for the spine http://www.neurosurgery.pitt.edu/neuro_ ... nergy.html and it looks very good for me, they say the success rate for the local control is 90 % which is very good. Radiation therapy is not that effective for the ASPS but the radiosurgery is better. Say hello to our dear Tom and stay positive, there are good resources available to treat these mets. I would ask you to add the info about this new radiosurgery Synergy to the spinal metastases topic after it is done.

[Kathy]

Thank you Olga,
I miss our daily talks in Germany, and all of your amazing support and knowledge. Please give Ivan our love. We think of you both all of the time....... I am starting to cope with the fact that this journey never really ends. There is always worry, fear, doubt..... I just pray that after this synergy procedure, TJ gets a little much deserved break from all of this..... The children seem to be doing well. This is a little easier for them b/c we are keeping their routines as normal as possible. With the Gamma Knife and Synergy being one night away or day trips. Please keep us posted on Ivan. We send you our thoughts and prayers!
God Bless,
Kathy

[Bonni Hess]

Dear Kathy,
Thank you for your thoughtful update and for the shared treatment information. I am so very sorry to hear about Tom's new mets, but am grateful that he was able to have the brain met Gamma Knifed ( Brittany had Gamma Knife for four brain mets in May and her last week's brain MRI indicates that the procedure appears to have been successful thus far). How big is the lumbar tumor and has resection been considered to try to completely remove it, or is this not possible because of the tumor's location in the vertebrae? We had considered Cyberknife treatment for Brittany's cervical/thoracic tumor but the tumor was too extensive for this more focussed radiation, so she had to have the tumor surgically removed, but we may still try to pursue radiosurgery treatment to try to kill any remaining tumor cells since good margins were difficult to achieve with the very difficult location of the tumor along the spinal canal. We are not familiar with the Synergy treatment, but are very encouraged by the statistics which indicate a very good success rate for local control of the treated tumor, and will be holding very tight to Hope that it will completely kill Tom's tumor. We will be anxiously awaiting your next update. In the meantime, please take care and know how many special thoughts and good wishes are with Tom, you, and your family.
With special caring thoughts and continued Hope,
Bonni Hess

[Kathy]

Thank you Bonnie,
We pray for you and Brittany everyday! The Dr's are telling us that resection is not an option.... so it looks like synergy is the way to go. I will be sure to post and let everyone know how everything goes....
Thank you for you thoughts and kind words!
Please take care,
Kathy

[Bonni Hess]

Dear Kathy,
Thank you for your thoughtful response and special prayers for Brittany. Do you know when Tom will be receiving his Synergy treatment and how many treatments will be required? Also, do you, or anyone else on this Forum know what the difference is between Synergy and Cyberknife treatment. From the research that I've done it seems that they are very similar, but I can't determine if one is considered better/more effective than the other or not. Please know that I am holding all of your family very close in my heart, and in my continued most special thoughts and prayers.
With special hugs, caring thoughts, and continued Hope,
Bonni