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

[Olga]

Read the detailed updates from Connie and Kevin on Kevin's laser assisted surgery experience in the specially designated area in the Lung metastases forum here:

Board index ‹ Metastatic Disease Treatment ‹ Lung Metastases ‹ Laser assisted surgery
the link:
http://www.cureasps.org/forum/viewtopic.php?f=51&t=735

[wangcns]

Hm, feeling very confused. Met with our UCLA surgeon who more or less expressed that he was not entirely in favor of us going to Germany to have Kevin's lung mets removed by Dr. Rolle. He made some valid points, that the mets do return and there is no evidence that this resection "works" and recommended we look into systemic treatments, specifically drug regimend. He said sometimes you need to try different drugs to find ones that work and that you can't even qualify for certain clinical trials unless you've proven you've tried XYZ drugs first and that they weren't effective. He recommended that we try going on a TKI and seeing how it works, perhaps even obviating the need to go back to Germany to remove mets in the left lung, but from what I understand, none of the drugs out there have been effective long term in stopping met growth.

Our oncologist and our surgeon don't seem to agree on what the best way to treat this is. Does anybody have any thoughts on this?

[mikko]

I´m totally convinced that as long as there is no effective (long time) systemic treatment yet available, these thoracotomies is the best way to fight ASPS with lung mets. Believe what dr Federman said to you.
When we got home after Jussi´s first thoracotomy in Coswig 2009 the response from our finnish doctors was just the same.
Thorax surgeon (in Helsinki) who was consided as the best in Finland said to us: " Don´t go to Rolle, he´s only after your money!"
But now after three years the atmosphere here has changed a lot.
This is a translation of an email I got two weeks ago after Jussi´s fourth thoracotomy from dr. Alanko, a leading oncologist at the only scandinavian private cancer center Docrates ( in Helsinki): " What a great man that professor Rolle. I hope his ground- breaking work will get a lot of followers!"
Take care.
mikko

[Olga]

It is funny that the surgeon is advocating the chemotherapy treatment options because the lung surgery benefits are not proven - and then proceeds with the idea to try quite a few unproven chemotherapy options and probably the clinical trials. Ask the surgeon what chemo treatments does he think are avail. for ASPS and what chemo treatment he knows about that was able to produce a beneficial effect for the ASPS multiple lung mets situation - and if it was proven to provide any survival advantage. And what does he think about the TKI resistance that almost always develops, what to do next? I am amazed by the approach "you never know unless you tried" expressed by a doctor. It is like assuming that trying something is always better than doing nothing, but in reality in some situations chemotherapy treatment might shorten the life of the patient. For example it was found that traditional chemo given in a maximum tolerated dose promotes the growth of the new blood vessels feeding tumor. In chemo-sensitive cancers this effect is balanced by the damage that chemo inflict to a tumor itself but ASPS is a very chemo-resistant. The situation with the newer TKI chemotherapy treatments is very complicated too - the resistance that often develops is a problem as after it developed the tumor may actually grow faster than before of that treatment as it bypasses the block. So again, there is no proven benefit from any chemotherapy as of now, and often it is a negative effect.

If this surgeon says that the surgical approach is not the best one, what exactly is he proposing? "to try different drugs to find ones that work" is a very vague proposal especially without explanation what does he mean by "ones that work". The only way to find out that the tried ones do not work, is to find after the scan that there is a growth and not only there is often no time left to try the new ones, but the surgery window of opportunity could be missed. There are many patients that Dr.Rolle could not accept for the surgery as it was to late by the time they applied after they tried some chemo therapies first. If you do it otherwise - the surgery first and if it is failed to achieve the local control, then the other options might be used.
We do have some exceptional results with the targeted chemotherapy drug cediranib in one of our patients (many others have progressed after initial response), and we have few cases in very few patients when the bulk lung mets were resected and traditional chemotherapy was effective for the residual ones, but we also have dozens of cases when it did not work and the disease speed up after the chemo.

[Ivan]

I still chuckle every time I run into the local doctor here who told me that this could not and would not work.

Had I followed his advice, I would surely be dead right now. 10 years and 4 laser assisted surgeries (200+ mets removed) later, I only have ~4 things in my lungs < 1 cm in size with half of them probably being scars, and the rest being very slow growing mets to be cryoablated at some future date when it becomes clear than they are growing.

[wangcns]

Thanks for all your advice guys. We've had a setback with our latest CT scans, so we actually may have to consider other therapies before we can even go back to Germany. Kevin's last scan showed an anomaly inside his sternum. The area doesn't hurt at all, but the doctors are very concerned that it might be ASPS. They're getting ready to do a biopsy, but since his ASPS is now showing a tendency to move to other areas, our oncologist (who has expressed he hasn't been too impressed with the drug therapies out there) has said we actually might want to consider taking something like Pazopanib to see if it can inhibit the spread of disease to other areas. But I guess we'll see what the biopsy reveals.

[Bonni Hess]

Dear Wangcns,
Thank you for the thoughtful update. I am so sorry about the area of new concern in Kevin's sternum and Hope that it proves to not be an ASPS met. I am personally not a fan of biopsies once ASPS has already been diagnosed, since there is some data to indicate that biopsies may actually spread the tumor cells. It seems to me an unnecessary surgical procedure when ASPS is definitely known to metastasize to other areas of the body, and vigilant observation of the suspected lesion through scans will show if it continues to grow, and if so, then the entire lesion can be surgically removed or otherwise treated with radiosurgery or a systemic treatment to try to shrink and destroy it. When our daughter Brittany's routine chest CT showed a lesion on her breast several years ago the doctor automatically scheduled a biopsy because she said that it was rare for ASPS to metastasize to the breast. As a result of our ASPS experience, knowing the nature of ASPS to metastasize almost anywhere in the body, and based on our extensive research, we refused the biopsy not wanting to risk further spread of the tumor cells. Instead of proceeding with a biopsy as the doctor was recommending, we requested and scheduled a resection of the entire lesion, which consequently did prove to be an ASPS met. We had Hoped that the doctor would prove us wrong and that the lesion would have just been a benign growth of some type, but we were very glad that we had not subjected Brittany to an unnecessary biopsy procedure which could have possibly risked and resulted in further spread of her disease.
If Kevin's sternum lesion does heartbreakingly prove to be an ASPS met and you do decide to proceed with a systemic treatment like Pazopanib, I follow a young woman with ASPS who has been participating in a combination Pazopanib/Verinostat Clinical Trial at MD Anderson in Houston, Texas since last October. Encouragingly and thankfully she has now had almost year of stability and tumor shrinkage. Unfortunately, neither she nor her family participate on this Forum to share her treatment information and results, but I would be glad to share her name and contact information with you in a private message on this Board if you are interested in trying to contact her or her family to obtain more information about this promising treatment.
In the meantime, please take care, give Kevin my best wishes, stay strong and let Hope lead you through each day, and keep the Board updated as you are able.
With special caring thoughts, healing wishes for Kevin, and continued Hope,
Bonni Hess, mother of 30 year old ASPS patient Brittany diagnosed in July 2001 at age 19

[Olga]

Although there are rare cases of ASPS mets, I do not remember a case when it has metastasized to a sternum, only outside of it. Did they say where they see the concerning area - in the lymph nodes by the sternum or in the bone itself? How big is it? If it is small, I would consider consulting Dr.Littrup if it is amendable to the cryoablation.

[wangcns]

Thanks as always for your guys' fast and helpful responses...

So we looked at the CT scan, it looks like it's inside the bone itself. They thought it might be an infection, though our oncologist warned us there is a likely chance it might be ASPS. They mentioned a bone infection, but since it's completely painless they worry it is the other thing. They said if it does prove to be ASPS, there is a special kind of intense radiation they would use to fry the area. Getting the biopsy will require a minor surgical procedure, which we are doing this Thursday. It's about a cm, slightly less, from what I can tell from the CT scan, and it definitely wasn't on his scan from three months ago. It looks like a weird inside bubble discoloration and I would have never known it was anything until the doctor pointed it out.

If we do decide to move forward with a systemic treatment, I will definitely message you Bonnie privately for that info. If it is ASPS we won't be able to go back to Germany and have Dr. Rolle operate on Kevin's other lung, so here's hoping that it isn't this awful disease. We had hoped we could have Dr. Rolle clear both sides of Kevin's lungs and then maybe consider going on drugs to control and inhibit growth and mets, but I don't think this disease will ever do what we want it, too. (which is mainly to GO AWAY!)

[Ivan]

Connie, when will you get the decisive word on the sternum anomaly? My course of actions would be to deal with it ASAP and then do the other side ASAP as well.

[Bonni Hess]

Dear Wangcns,
Thank you for the additional information. My most positive thoughts and very best wishes will be with Kevin and you tomorrow for a good outcome to the sternum biopsy showing that the anomally seen on the scan is a benign situation. I encourage you to discuss and clarify with the surgeon prior to the biopsy procedure what precautions will be taken during the biopsy to ensure that there is no spread of tumor cells if the anomally is an ASPS met.
I, like Olga, am also unfamiliar with any ASPS patient cases where ASPS has metastasized inside the sternum, but there have been a few patients that I am aware of who have had an ASPS met adjacent or in close proximity to the sternum.
If the biopsy does show that the area of concern is unfortunately an ASPS met, I agree with Olga that Cryoablation may be a good treatment option to try to destroy the lesion. Radiofrequency ablation ( RFA) may also be a possible treatment option as it was very successful in destroying Brittany's tibia met six years ago, although her tibia met was on the outside of the tibia and not inside the bone itself.
Of course, the priority right now is to obtain an accurate diagnosis and if the anomally is an ASPS met, to proceed as quickly as possible with ablation or radiosurgery to destroy it while it is small enough to have a positive response to the treatment. Once the issue of the anomally is addressed and resolved, then you can move forward with either the laser surgery on Kevin's other lung, or a systemic treatment if there are concerns that the disease is progressing and needs to be systemically stabilized to try to prevent further metastasis and tumor growth.
Take care, and please update the Board with the results of tomorrow's biopsy as your time and the situation allow.
Holding you and Kevin close in my heart and sending special hugs, caring thoughts, healing wishes, and continued Hope,
Bonni

[wangcns]

Good news, everybody! Doctors just called Kevin and the anomaly in his sternum is NOT ASPS. I haven't had a chance to get all the details, so still not sure what it turned out to be, but I wanted to update you all. HOORAY!!

[mikko]

We are so glad to hear that. GREAT!!!

[Bonni Hess]

Dear Connie,
Thank you for sharing this wonderful news! I am so happy for Kevin and you and I share the great joy and relief that this very good news brings I will be waiting to hear more information about what the anomally is and if any kind of treatment will be needed for it.
Celebrating your good news across the miles with happy hugs, special caring, and continued Hope,
Bonni

[Olga]

Connie, it is a great news and really a very, very important info for everyone participating (or even lurking here and just reading). We had a situation like this before when Brittany was found to have a suspicious unknown mass in her liver and her oncologist was absent and the news was delivered by someone less experienced. I remember that I leaped to conclusion that it was a new and fast growing met and posted that she has to do something about it ASAP and not to loose any time as it may get dangerous fast and that this is most likely the fast growing met etc. Bonni was very sick herself at that time, bed ridden. I removed that post the same day hoping that no one has seen it as I realized that we just do not know what it is and it needs to be investigated further before jumping into conclusions. The next day we had a post from another member of our board Anders saying that he had the same situation and the mass in his liver turned out to be the fat tissue deposit that can be caused by the reaction to a chemotherapy. The same was later found in Brittany case as well.