Kevin from California, US (Dx Feb 2012) - RIP Oct 17, 2014

[Bonni Hess]

Dear Kevin,
I am so very sorry for the continued growth and unusually high count of your lung mets. I wish that I had more anecdotal information to offer and share about Pazopanib treatment, but as Olga has said, even though there are a few people with ASPS that we are aware of who are already on this drug and who could share their invaluable treatment information and results on this Board, unfortunately they are not posting here although we know that several of them visit the Board and benefit from the information which is shared without giving anything in return . I would be glad to privately share their names and contact information with you if you are interested so that you can try to personally contact them in Hopes that they will be willing to share their Pazopanib treatment experience and results with you.
Prior to beginning any systemic treatment, I would encourage you to explore Cryoablation with Dr. Littrup for your largest and most concerning lung met(s) so that your tumor burden can be reduced and the systemic treatment can then be more effective in shrinking/destroying your remaining mets and preventing the growth of any new ones.
My very best wishes are with you for a very successful response to the Pazopanib if you decide to go forward with it, and I will be anxiously awaiting your updates regarding your treatment decision, experience, and results.
Take care dear Kevin and know that my most caring thoughts are with you and Connie.
With deepest caring, healing wishes, and continued Hope,
Bonni

[Kkgriffith]

Thanks for all the info.

To answer Josh's question, my doctor wants to see how I react to Pazopanib then move onto trying other TKI's depending on how I respond (or how my tumors respond to it). I may end up trying Sutent, Cediranib later but Pazopanib is first on the list since its approved by the FDA for soft tissue sarcomas. I plan to post often when I start the treatment to track/share the side effects and dosage (also including my diet, since I learned that diet can diminish certain side effects).

As far as interferon, my doctor has not mentioned it as an option. After hearing about Jussi's experience with it, I am not thrilled about trying it unless there are more conclusive reports on it.

I'm planning on heading to UCLA to pick up a few CT scans to send to Dr. Littrup for a cryoablation evaluation. So far the biggest left over tumor is 1cm, but I think its hard to tell right now since I have a ton of scar tissue in both of my lungs. I wish I could tell how many tumors I have leftover..its kind of unknown right now until I can get more comparative CT scans.

Has anyone done cryoablation during TKI treatment?

Kevin

[Olga]

I think that you are not allowed to have any invasive/surgical procedures while on the TKI since it increases the chance of bleeding complications, may be there is more info in the drugs leaflet or on their web-site.

[Josh]

Kevin:
Taking any TKI including Pazopanib will disqualify you for this Cediranib trial:
http://clinicaltrials.gov/ct2/show/NCT0 ... pen&rank=6
I believe there are other Cediranib trials, but the benefit to this one is (as far as I know--please correct me if I am wrong) this is the only Cediranib trial that offers to pay for your travel in order to make it to the required every-28-days-examination.

But I definitely understand not wanting to waste time with a trial when the Pazopanib could help you now. If it cures you, then it is worth all the money in the world

[D.ap]

Kevin

Hi. I am Joshuas mom. How are you all doing?
I wanted to ask you when is the soonest that the CT scan can be read accuretly for changes after the laser surgery.

Sincerely

Debbie

[Ivan]

Debbie

Basically the ablated nodules which are scar tissue shouldn't increase in size in the future. They should either shrink or stay the same. Based on that, the more time passes the more certainty there will be that something is scar tissue rather than a nodule.

So a typical ablated nodule might look something like this -

Month 0 - 2 mm
Month 6 - 4 mm
----laser surgery, nodule ablated-----
Month 7 - 7 mm
Month 12 - 7 mm
Month 18 - 7 mm
Month 24 - 6 mm

[D.ap]

Ivan

Thank you.

Debbie

[D.ap]

Find out how many. If indeed there are only a few, I'd ablate them.

So far, Kevin's disease seems to progress similarly to how mine went. Perhaps a few more mets, and just slightly faster growing but overall it's comparable.

I think Dr. Rolle's suggestion of chemotherapy is worth considering as well. Apparently there's been some success stories when it's used in conjunction with surgery and the met size is small but one can never be sure because of a small number of cases reported.

Ivan

You had mentioned that your experience with lung mets were similiar to Kevins..Could you review how it was similiar and how you and your family approached the whole situation after your first two lungs were operated on by Dr.Rolle back in ??

Kevin and Connie

Hang in there.. you two

Debbie

[wangcns]

Hey everyone,

Thank you again for all your words of encouragement and well wishes. Sorry we've been absent for a little while, we've been waiting for Kevin to recover from an unrelated (or who knows, it might have been from being stiff from all the surgeries and inactivity) muscle injury to start the TKIs. Kevin just heard back from Dr. Littrup, who is unwilling to do the cryoablation because the tumors are too close together. They are concerned it will aggravate or speed up the growth of the surrounding smaller tumors in Kevin's lungs.

Kevin's up at UCLA getting a CT scan today, so we'll see what the results are, but I don't think we can put off TKI treatment too much longer. Dr. Rolle does not like SBRT, as I understand it damages the lungs and makes it harder for the laser resection. Kevin still needs time to recover from his back to back resections, so Rolle is out of the question, at least for a little while. We're considering RFA at this point, wondering if the risk of needle track seeding is worth it since we don't have many options other than drugs to slow or stop the growth of the larger tumor. I believe it was last at 16 mm from our last CT scan.

Josh, we haven't considered Cediranib yet because we've been hoping to control and slow down tumor growth with surgeries, but so far it hasn't been as effective as we would like. We share an oncologist! Noah Federman is also our onc, and he has recommended either Pazopanib and Sutent to start off with. From the literature, it appears that Cediranib can be effective, but has higher rates of rebound and toxicity so we'll try Pazopanib first. I don't think we qualify for the clinical trials, either way.

[Olga]

Connie, thank you for keeping us in the loop. I have heard from Littrup's team these ideas re. surrounding mets stability, I am not sure what to think about it. We have not seen smaller mets starting to grow in the vicinity of the cryo ablated ones.
I would suggest you to let them know that since the options are limited, you are considering RFA instead of cryo anyways - may be they will reconsider since you are planning to ablate the met either way and refusing to do cryo they kind of push you to a suboptimal RFA ablation (although if the location allows, it might actually be a viable alternative, the risk of seeding is about the same, mostly depends on the experience of the interventional radiologist).

[wangcns]

Hey all,

We met with our onc yesterday and received mixed news. The lesion in his bone that scared us so much a few months ago has grown, so even though the biopsy showed negative for ASPS our onc feels that if they see any further growth he would feel more at ease if we irradiated it. We discussed RFA and cryoablation, but with the number of new tumors growing (not withstanding old scars from the Rolle surgeries) they feel going on Pazopanib or some similar drug like Sutent, would be the best move. Rolle, Littrup, and another onc we consulted in Japan agreed with this course of treatment. I asked about size and location of the tumors, and they said they've counted 30+ new ones with the notable ones ranging from 16 - 25mm, but none in dangerous locations. They said at a certain point they stop counting, there's just no point.

Our onc is also concerned at Kevin's pain in his buttocks region, which we think is simply an injury to the piriformis muscle, but because the pain has lasted so long (nearly 3 months) he wants Kevin to do an MRI of the pelvic region. He said it's an unusual location for ASPS and most likely it's just an aggravated muscle injury, but he'd rather be safe than sorry.

[Olga]

Connie, thanks for an update. Was a MRI scan ever done to the sternum lesion? What is its size now? Does the oncologist recommend a conventional radiation or a radiosurgery?
I hope that at least some of the mets that are counted like new are the scars from Dr.Rolle surgery. Can you remind me how many CT scans was done after the last surgery and if there is a growth in all the nodules between the after surgery scans? At least it could be checked on a lung that was operated first.
I know of few cases with the mets to pelvic bone so your concern is totally justified, and again a MRI scan is the only one to say for sure.

[Bonni Hess]

Dear Connie,
Thank you for your thoughtful update. I am so sorry about Kevin's continued disease progression and the increased number of his lung mets as well about his concerning pain in his buttocks area. It would certainly be best if his largest and most concerning lung mets could be ablated/shrunk/destroyed prior to him beginning a systemic treatment in order to try to reduce his body's tumor burden, but since Dr. Littrup doesn't think that Cryoabaltion would be a viable option at this time because of the risk from the tumors being too close together, I don't understand how RFA might be a possible alternative treatment option since it would seem that the risks would be similar that the ablation procedure "will aggravate or speed up the growth of the surrounding smaller tumors in Kevin's lungs".
I agree with Olga that the concern regarding the ongoing pain in Kevin's buttocks area, and the scheduling of an MRI is totally justified because although it is not very common, I know of a couple of ASPS patients who had metastasis to the pelvic and gluteal area. During our eleven and a half year journey with ASPS, we have heartbreakingly learned that ASPS can metastasize almost anywhere there is soft tissue in the body, and that it is very important to obtain scans whenever any area becomes symptomatic. Hopefully a pelvic MRI can be scheduled as soon as possible and prior to Kevin beginning a systemic treatment so that if there is a tumor, it can be resected/ablated if possible.
Please know that I am holding Kevin and you very close in my heart dear Connie, and that my most caring thoughts and very best wishes are with you. Take care and keep in touch with the Board as you are able.
Reaching out to share special hugs, deepest caring, healing wishes for Kevin, and continued Hope,
Bonni

[Amanda]

Hello,
I am so sorry this fight it such a hard one an I am keeping you in my prayers and heart!
many have given great medical advice an when i read about the insurance i remembered Fer post.. though this may not be 100% what you are going thru it is proof to insurances that you need an these posts show this and have links for you
http://www.cureasps.org/forum/viewtopic.php?f=26&t=396

I hope that things are going alright an I hope this helps you

Amanda

[wangcns]

Hey all,

Kevin got his MRI of his left pelvic scan done this morning. Our oncologist called us while we were still driving back from the hospital to confirm it is indeed a metastatic lesion on the sacrum and pressing against the sciatic nerve, which explains why he's been in such pain for the last 3-4 months. It's in a dangerous location--close to the spine--so conventional surgery is out of the question. Kevin will be meeting with the radiation oncologist on Monday to determine the best way to irradiate the lesion. We don't have all the details yet but it seems like it's just the one tumor so far.

I guess the only good thing to come out of this is treatment of the tumor should hopefully lessen his pain.

We picked up the Votrient (Pazopanib) today. I think Kevin is starting it tonight.

Thanks Amanda, we actually used many of the documents listed in the link but insurance wouldn't budge. They said it has nothing to do with the disease, but more to do with the coverage supplied by Kevin's employer. It simply doesn't cover international surgeries unless it's in a case of emergency trauma. The Pazopanib was approved (thank God) by insurance.