Tom from Pennsylvania - Dx 2002, RIP 2021

[Olga]

It is done in many places as a palliative treatment or to prepare for the surgery - or enable one to have an easier surgery.

Sanjay Gupta does it at the MDACC:( Do you want to try to get an evaluation from him? They also do a proton radiation for the spine/sacral mets there - as I understand they have an IMRT proton unit there to spare the spinal column.

Embolization of Spinal Tumors: Vascular Anatomy, Indications, and Technique
http://www.techvir.com/article/S1089-25 ... 5/abstract
"Involvement of the spine by primary and secondary tumors can be associated with mechanical instability, pain, and neurologic complications, all of which can adversely affect a patient's quality of life. When surgical excision is planned, preoperative embolization of spinal tumors reduces intraoperative blood loss, making surgery safer and easier. Embolization of spinal tumors can also be used to palliate pain and improve neurologic symptoms in patients with unresectable tumors. A detailed knowledge of the spinal vascular anatomy is essential before performing spinal tumor embolization. Indications, contraindications, embolization technique, and potential complications must be fully understood to ensure a safe and effective procedure. Although the technique used may vary among operators and institutions, familiarity with embolization goals and strategies can ensure sufficient tumor devascularization."

Did you get an evaluation re. possible cryo by Dr.Littrup?
Is it a soft tissue met (close to L4 - local recurrence?) or a bone met (in a L4)?

[Kathy]

The L4 is involving bone and Dr. Littrup's nurse already told us he is not a candidate for that. As for the Embolization - A nurse for Dr. Gupta said they do not do it on the spinal column, but I see the artical/website you quoted does talk about it for the spine. So I have far more research to do. We are being told the spot on the L4 is too close to the primary site to not consider it a reaccurance (sp).
I hate not knowing where to go from here.

[Olga]

You might need to get few other surgical opinions on the resection, and when you do - ask them if there might be no bone involvement but the soft tissue between the vertebrae, because if his primary was in the soft tissue in that area, it might be still in the soft tissue recurrence and the surgery might go easier than they expect - esp. if they would try to embolize it first? Does that nurse for Dr.Gupta said definitely no or they might review the scans? If they knew that the primary was in the soft tissue close to the spine but not in the spine, may be they might reconsider? I mean that when you are talking to the nurses about the spine metastasis it is probably considered to be a proven metastasis to a bone and you may unintentionally mislead them as it looks like it might very well be a local recurrence in the soft tissue, when ablated or embolized it may move away from the spine and it may became visible that there is no bone involvement just a contact - or may be it may only be seen during the open surgery.
Any ablative treatments like embolization, local cryo or RFA ablation, proton radiation etc. are not going to be a defenitive treatments when the tumor is most probably in a very direct contact with the bone, but the multimodality approach plus the open surgery might be and you should find the best spine surgeons to review the case and only if they all say no it might be really no. Some of them might have some very rare technology or experience on hands to help with it. We have been there before with the lung mets, right?
Anyway, there are numerous places that do minimally invasive treatments for the spine or perform advances surgery for the spine tumors:

Minimally invasive treatments for spinal metastases: vertebroplasty, kyphoplasty, and radiofrequency ablation.
http://www.ncbi.nlm.nih.gov/pubmed/15357518
Spine surgery for cancer.
http://www.ncbi.nlm.nih.gov/pubmed/8804815
when you do a search on the Pubmed also read the related articles on the upper right to see what else is being done in that area.

[Bonni Hess]

Dear Kathy,
It seems that there is some disagreement between Dr. Fick and Dr. Harvey regarding whether or not there is an actual increase in the size of the L4 tumor. Based on our experience, I do know that PET scans can be inaccurate and can erroneously show possible tumor activity as happened with Brittany following the re-section of her parietal tumor in Spring 2005, so I personally feel that it would be wise to re-evaluate the status of the tumor with a spinal MRI so that you have an accurate assessment of the possible growth of the tumor before proceeding with any kind of surgery or other treatment. I agree with Olga that local treatments such as ablation, laser resection, or radiosurgery for both the lung mets and spinal tumor if possible are probably a better approach than a systemic treatment with Cediranib at this time since Tom has not had any new tumors and the growth of his existing mets has been relatively slow. Because Cediranib has such debilitating side effects, has only shown a successful response for about 40% of the ASPS patients who have been treated with it, and has a known risk of developed resistance and rebound followed by rapid disease progression, it seems that it should be reserved for patients who are experiencing rapid and widely disseminated disease progression for which there are no other treatment options such as was the case with Brittany when she developed an unresectable, untreatable, and Life threatening met in the head of her pancreas. However, the decision to postpone treatment with Cediranib poses a dilemma since Astra Zeneca is discontinuing development of Cediranib, and it may ultimately no longer be available for any patients if development, FDA approval, and production are not pursued by another pharmaceutical company or research facility such as NIH. I Hope that you can find answers to your many questions during your upcoming visit to NIH that will help guide you in your difficult treatment decision. Travel safe and know that my very best wishes and most caring thoughts will be traveling with you.
With deepest caring, healing wishes for Tom, and continued Hope,
Bonni

[Kathy]

Thank you Olga and Bonnie,
I do not know what we would do without your advice and guidance. You have given us a lot to look into and figure out. I know I have said it before and I will say it again - it gets so overwhelming and we are so thankful for this site. I am eager to look into some of the treatments options you spoke of and I will keep you posted of what we find.
You and your families are always in our thoughts and prayers.
hugs, love and hope,
Kathy

[Olga]

Kathy - Bonni is exactly right re. MRI - I totally forgot about it, hasn't been done for that tumor to verify the MRI findings? It may actually clarify the possible bone involvement and for sure will be helpful for the surgeons and interventional radiologists when evaluating the possible treatment options. Try to figure out which one of his docs is more likely to get a requisition for the MRI without a protests from the insurance.

[Kathy]

I have to say it again... what would we do with out you all! We are set for our trip to NIH, but I have to say I feel a bit sick about it. I don't want him on a trial. We will go and see what they have to say, but Olga, I have been looking into your advice. We need to find someone for the L4 - any names come to your minds? TJ feels strongly (and I agree) that he wants to have the lung mets treated with radiosurgery. We have an email into Dr. Harvey. If he does not have someone there who will do it, we will head back to UPMC to see Dr. Burton who performed the last radio surgery treatment on the lungs that proved to be successful. We have also asked in the email to Dr. Harvey to have just an MRI of the back. My question to all of you, Do you think we are wasting out time by going to NIH? The women we are working with is very nice, but she made a comment that bothered me yesterday. "between you, your mother in law and I, maybe we can convince Tom that this is a good fit for him". I told her that I was not going to convince him of anything. We just wanted information at this point. Tom asked me last night if it was worth us going.
blessings,
Kathy

[Olga]

Kathy - to be able to answer to this question (Do you think we are wasting out time by going to NIH) we need to find out first if Tom is really eligible for this trial. i.e. if his disease is unresectable/untreatable by other definite means. Clinical trials have to be reserved for the situations when there are no other options as their result is largely unknown - if they are going to provide an advantage in overall survival (OS) for the patient. At this point you do not even know the extend of the spinal tumor and its localization (bone or soft tissue) and if it is resectable or can be ablated because you have requested the evaluation based on the incomplete scanning. IMHO the nurse on a trial should be interested in that as well and to ask you to clarify the situation before proceeding with the trial. Why would you (and your MIL) be interested in convincing Tom that the trial is a good fit for him if you do not know that?

[Bonni Hess]

Dear Kathy,
I completely agree with Olga. Tom and you certainly shouldn't feel pressured into starting any kind of treatment, and before you make critical treatment decisions you need to be as well informed about the specific status of Tom's disease as possible. I don't think that your going to NIH to discuss the Trial and Tom's eligibilty for it is a waste of your time because no knowledge is ever wasted and the more information that you have about various treatment options, the more informed a decision you will be able to make. I Hope that you have a good and informative visit with the NIH Clinical Trial staff, and that you have safe travels. I will look forward to your update regarding the outcome of your visit and your treatment decision. Take care.
With deepest caring, healing wishes for Tom, and continued Hope,
Bonni

[Kathy]

Hello Everyone,
I hope our update finds you all well. Tom just celebrated his 38th Birthday on Sunday - a fun day with all of our kids at the Penn State softball game (our middle daughter is a softball player with our local little league and our oldest son starts PSU in June) and dinner with his our kids, his parents, sister and her family! I can remember after Tom was diagnosed and we heard the news that the cancer had spread, he said "I just want to see Logan graduate" - not only is he going to see that in a month, but he is going to see so much more!! His latest scans showed the brain was clear and the L4 looks great - everything looks "dead" and much smaller. The feel the radiosurgery that was done at UPMC was successful but it just showed time to see the results. There are a few lung mets, most of which are tiny. The largest is getting treated at UPMC with radio surgery. We are in the process of scheduling that now.
We thank God every day for this site. Although I do not post much, please know that our prayers and thoughts are with every single one of you. I do not know where we would be without cureasps.org.
Much love and many thanks to you all,
Kathy

[D.ap]

Dear Kathy

What wonderful news. You and Tom and family have certainly ran the proverbial ASPS roller coaster.
Thanks so much for sharing such great news and keeping us abreast of your experiences with this common disease that keeps us all connected.

Our famly has just begun the journey and have enjoy each and every day with our son, Josh ,who was dx in September of 2012. We are looking forward to the Joshua seeing his daughter married and him seeing his grand kids grow old.

Much love,

Debbie

[Olga]

Kathy, it is good to hear that Tom is doing good and that many of his treatments were a success. I have a question re."There are a few lung mets, most of which are tiny. The largest is getting treated at UPMC with radio surgery. We are in the process of scheduling that now."
Why you decided on radiosurgery for the lung mets? Cryoablation is much less toxic for the surrounding tissue and you avoid the danger of developing a radiation pneumonitis, which is not very frequent but very serious complication.

[Bonni Hess]

Dear Kathy,
Happy belated 38th birthday to Tom and thank you for sharing the wonderful news about how well he is doing It is so good and encouraging to know that his disease has been able to be managed thus far without the need for a systemic treatment. I think about Tom and your family often and hold you always close in my heart. Please give Tom and yourself special hugs from me, have a beautiful summer with your family, and keep in touch as you are able.
Sharing your good news with much happiness and continued Hope,
Bonni

[Kathy]

Hello Everyone,
It has again been awhile since our last post. Tom is doing well. He had a small met treated again with radiosurgery at UPMC by Dr. Burton and Dr. Chirsti. That was done last Spring. He had his follow up scan last week and they feel the treatment was successful and nothing new can be seen. He also had his brain checked on Friday and we are waiting to hear the results. The back (his primary site) was also checked and came back clean. His is approaching 11 years since diagnosis and we thank you all for helping us get this far. Every single one of you remains in our thoughts and prayers daily.

big hugs to you all,
Kathy

[Amanda]

Hello Kathy and Tom
YAY i am so happy!!! This gives hope!
Thank you, for sharing this!