Tom from Pennsylvania - Dx 2002, RIP 2021

[Ivan]

Thank you very much for the update! I hope that met is as quickly out of the way, as the one I had ablated (cryo) this spring

[Bonni Hess]

Dear Kathy,
I Hope that Tom and you had a good summer and that he is continuing to do well. I'm so sorry for his continued leg pain and know from Brittany's chronic and severe post-op spinal pain how very debilitating and discouraging the pain can be, but like Tom, Brittany continues to remain as active as possible and to move forward with her young Life in spite of the pain. Do the doctors think that Tom's pain is caused by post-op nerve damage, and what medication does he take for the pain? Brittany has tried every currently available pain medication, but she heartbreakingly gets very little relief from any of them. The most effective medication for her thus far has been oral Fetanyl lollipops.
My most positive thoughts and very best wishes will be with Tom and you for very good scan results from his scans this month which will Hopefully show continued stable disease and no new tumors. I will be anxiously awaiting your Board update, and continuing to hold Tom and you very close in my heart and most caring thoughts. Take care Kathy and give yourself and Tom special hugs from me.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[Kathy]

We just found out that Tom's brain mri looks "great" and the L4 is stable... We will take it!! He has his lung petscan on Wednesday. I will let you know how it goes. As always we hold you all close to our hearts and in our prayers. We thank every single one of you for taking the time to post and give us hope!
Kathy

[Bonni Hess]

Dear Kathy,
Thank you for sharing this WONDERFUL!! news I am SO VERY happy for Tom and you and your family. I will be holding very tight to Hope and sending my most positive thoughts and best wishes for more good news of stable disease from Tom's Wednesday's lung PET, and anxiously awaiting your update when your time allows. In the meantime, CELEBRATE!! and give both of you special high 5's and celebratory hugs from me.
Sharing your great relief and joy with happy thoughts, deepest caring, and continued Hope,
Bonni

[Kathy]

Hello Everyone,
We found out that the tumor in Tom's lung is stable. He is picking up a copy of the scan today and we are sending it to Pitt (UPMC) to Dr. Burton to see if he can have radiosurgery on it. Tom is being followed by a Dr. in Hershey, but we feel like a number... Does anyone have any suggestions for an oncologist in the Central PA area... we keep looking and switching, but continue to feel let down.
Thinking of you all, everyday,
Kathy

[Olga]

Kathy, thank you for an update. Can you ask them to compare the size of this met with more than a year interval (any scan after the last surgery). They often say "stable" if the growth is small between 2 consecutive scans, but it might be incorrect and you can verify that when compare with the longer interval.

[Bonni Hess]

Dear Kathy,
Thank you for your thoughtful update. I am so happy that Tom's recent scans showed that his lung met is stable. It is a real victory that he has achieved disease stability with no systemic treatment. I do agree with Olga that it is always good to verify the results with comparison of the scans from a longer period of time than just the previous scan. We periodically request a visual review and comparison of Brittany's scans from when she first started her Clinical Trial 28 months ago, and we personally look at them together with the oncologist and radiologist just to ensure that no growth has occurred during that period of time. As I mentioned in my private e-mail to you, I Hope that you will be able to discuss with Dr. Burton the possibility of using the new multileaf collimator for Tom's radiosurgery that Olga posted information about in her October 6th post in the "Metastatic Disease Treatment" topic and "Treatment Modalities" subtopic about this new Cyberknife technique advancement that minimizes the amount of radiation to neighboring tissues and provides better tumor control with less damage to critical structures around the tumors. Also, I Hope that someone on this Board will be able to provide you with the name of a different primary sarcoma oncologist in your area who will provide more personalized, dedicated, caring, and compassionate care for Tom which is so extremely important. Please take care Kathy, give Tom my best wishes, and keep the Board updated on Dr. Burton's treatment recommendations as you are able.
With hugs, special caring thoughts, healing wishes for Tom, and continued Hope,
Bonni

[Bentleysikes]

Hello Kathy ,

I'm pretty new here, however I just finished reading all of your posts about Tom's fight with ASPS. I am trying to familiarize myself with everyone on here, as we are "family" (one of my friends on here says this often)! I'm going to bed now feeling encouraged with the last bit of good news that you put up regarding Tom's stability---it really is so great that we can all share on here and help each other not feel alone. God bless you two and your family, and I will be following Tom's progress and praying for you guys...

[Kathy]

Hello Everyone, Tom just had his scans last week and we learned the results on Friday. There are several lung mets that showed "slight increase". No new nodules were seen. The L4 has grown as well. It measured 3.1 before and is now 4.2. The brain was clear. Tom has been seeing Dr. Harvey in Hershey and he recommends waiting 6 months to scan again to see where we are at. Tom does not like the wait and see game, but after his experience on a trial in 07, he insists that he does not want to do another one. I am eager to hear your advice as we are again feeling overwhelmed and tired. Dr. Rolle has requested a copy of the lung scan and we are sending that tomorrow. Any thoughts?
blessings,
Kathy

[Olga]

Kathy - what interval they take to compare the lung CT scans? If you have seen Ivan's recent post, he once again found the growth only detected with a few years interval in between the compared scans so if they see "slight increase" in between the 2 consecutive scans, it might be not that slight if comparing to let say 2 years ago. What is the max size of the lung mets now and how many are there? You realize that Dr.Rolle is getting to a point that he might retire?
Re.L4. What was the dynamics after it was treated with the radiosurgery? It was getting smaller, then stable and now it started to increase? You would need to have a radiosurgeon to review the past and new scans, they might have missed the growth before and reported it stable or otherwise they might missed the fact that it was treated and reported a growth when in fact it was an inflammation from the necrosis etc. You need an MRI for that not the CT.

[Ivan]

Tom is right - to wait any more is clearly useless. Why would the doctor recommend waiting when some kind of treatment is clearly needed?

Is that 4.2 cm or 4.2 mm for the spinal tumor size?

[Bonni Hess]

Dear Kathy,
Thank you for your thoughtful update. It was so good to hear from you again. I am sorry that Tom's recent scan results showed an increase in the size of his lung mets and spinal met, but I am grateful that there are no new mets which is as I have said before, a real victory since he hasn't had any systemic treatment for the past five years. I share the concern about playing the "wait and see game", and I agree with Ivan that it is not a good plan to wait six months for another scan since both the spinal tumor and lung mets definitely appear to be growing and it is important to treat them at the smallest possible size. I was Hoping that you had found a different oncologist by now since you had expressed dissatisfaction with Dr. Hershey in your last post in October. It certainly sounds like Dr. Hershey is not being as conscientious in managing Tom's care and addressing Tom's treatment needs as he should be, and I would encourage you to seek treatment and advice from a different doctor who is Hopefully a Sarcoma specialist. I Hope that Tom is feeling good, and that he is not suffering any pain or debilitation from his spinal met.
Please take care Kathy, and keep the Board updated as you are able.
With special caring thoughts, healing wishes for Tom, and continued Hope,
Bonni

[Kathy]

We are still waiting to hear from Dr. Rolle regarding his opinion on the lungs. We did meet with Dr. Fick here in State College and he did a much better job of explaining the L4 spot. He feels it does not look any larger, but that the petscan showed a higher "uptake". He said this could be due to the scan itself and not the tumor. He was concerned that Dr. Harvey wanted to wait and see regarding the lungs. He is calling Dr. Harvey to see why he would wait and why he does not suggest radiosurgery as it was successful in the past. We have also been in touch with NIH regarding the Cediranib trial. We are going there on Sunday to stay over and we will meet with them on Monday.
We have so many questions and no easy answers. For the most part Tom feels really good. He enjoys balling baseball and softball with our kids and leading the very busy life of a working father and husband of a very active family. We worry about side effects but realize we cannot do "nothing".
I will keep you posted on what we decide.
Love, hugs and prayers to you all,
Kathy

[Olga]

Kathy, please - do not enroll into Cediranib trial or any trials before you hear from Dr.Rolle...I mean you guys can go to NIH, meet them, take all info they can give and tell them that you need to have more time, because they would probably agree to enroll Tom but may be there are some other local treatment options for L4 tumor left that we just do not see yet? A surgery, a chemoembolization, a cryoablation? What is the size - 4 cm?

[Kathy]

I agree Olga. We are only going to get information at this point. We are eager to hear back from Dr. Rolle regarding the lungs. As for the L4 - can you tell me more about Chemoembolization. Has anyone here had it? I thought it was just for the liver, but you know far more than I:) The two surgeons we a saw both said traditional surgery was to risky and that Tom would most likely suffer great mobility loss. They both said it would be consist of 2 surgeries that would be fairly difficult. Tom is not ready to take that step. He can no longer run due to the 1st surgery and he misses it so. The L4 is measuring "53x34mm cross-sectionally". The reports states that the uptake went from 3.1 in September to 4.2 now.
Thanks for responding so fast - it means so much,
hugs, thanks and many prayers,
Kathy