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

Those who lost their battle with ASPS :(
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wangcns
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Re: Kevin from California, US (Dx Feb 2012)

Post by wangcns »

Hey Josh,

I'm so sorry I missed your posts. It's been crazy since we got back from Germany, plus holidays and all. I hope I'm not too late in answering your queries.

For 3G tethering, you can use a company like Tep (http://www.tepwireless.com/?gclid=COfs8 ... PAodOG4A8w) to rent a 3G Wi-Fi router. In Germany, it looks like you can rent a WLAN stick, which does much the same thing, but since we ordered ours from a different company I'm not really sure how that works. Might need to be able to speak a bit of German to negotiate that one, while you're there.

3G to wireless tethering is definitely expensive, but you can probably get away with purchasing a gig or two of data and restricting yourself to checking email or FB only. It will cost something like 100-200 USD. Definitely no streaming, not like Netflix or Pandora is available in Europe anyway. The company will mail it to you and you have to pay for a "rental" fee for the unit, but you'll be able to tap into Germany's 3G network and turn it into wi-fi for your laptop or mobile devices. Once you get back, you just pop it into a mailer they provide you and that's that.
wangcns
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Re: Kevin from California, US (Dx Feb 2012)

Post by wangcns »

Just saw our oncologist this past Monday for our first post-Germany follow-up, thought I'd update everyone.

To recap, in July 2012 Prof. Rolle removed 120+ tumors from Kevin's right lung. We flew back home in August, follow CT scans showed sign of met growth in the operated lung, most likely mets that had been missed, though neither Prof. Rolle nor our oncologist ruled out regrowth. Because no regressive effect was seen, in fact the opposite, a marked increase in met growth (both number and size) in Kevin's unoperated left lung, we returned to Germany in Nov 2012 (3 months after we got back from the last trip) to do the other lung. This time 140+ tumors were removed and Prof. Rolle concluded in his post-surgery diagnosis that unfortunately these surgeries were not having a regressive effect like we'd hoped and even suggested we pursue adjuvant chemotherapy as he could only promise to lighten the tumor load, not accomplish full resection of lung mets. Not that we realistically expected that, after seeing how many mets were removed in Kevin's first surgery. Kevin's right lung still hadn't even healed properly when they did the left lung, so Kevin definitely needs to give his body some time to heal and recover, rehabilitate his lungs, etc before we pursue any more surgeries.

On Monday, our oncologist told us they are definitely seeing regrowth in the right lung. The largest one, as far as they can tell, is roughly 16 mm. Most likely, it's in an area that's difficult for Prof. Rolle to get to and was missed, which is to be expected. Luckily, none of the mets seem to be in dangerous locations, but our oncologist is urging us to seriously consider going on TKIs, either Pazopanib or Sutent. He said there's more data on Sutent, but in terms of effects (and side effects) the two are similar, and Pazopanib is more likely to be covered by insurance as it's been approved for advanced stage soft tissue sarcoma. The idea is to see Kevin's response and tolerance to the drugs and hopefully keep the mets that have regrown or continue to grow under check, and then most likely pursue more surgery.

As for the current mets, especially the largish 16 mm one, our oncologist has recommended SBRT radiosurgery. He mentioned RFA but he said he's actually more inclined to recommend SBRT as it has a very high success rate in terms of preventing local recurrence. I haven't done the full research on SBRT radiation therapy yet, but I thought I'd throw it out there, see if anyone on these boards has any experience.

It's a little disheartening to hear from our doctors that the laser-aided thoracotomies have not slowed down the disease, but the way I'm trying to think about it is that Kevin has 260+ less tumors in his lungs. It's just a little scary, because Kevin really can't tolerate more open lung surgeries, at least not for a little while, but this disease just keeps on chugging.

So that's that. Kevin's taking a week to think about the TKIs. We both need to do some massive research on SBRT. In terms of his recovery, it's a bit slower since both lungs are jacked up now, but he's following Ivan's sagely advice and doing stationary bike at the gym, yoga for breathing and stretching. He's gone back to work, still gets pretty tired. Slowly but surely we're going back to our normal routine.

On another note, has anyone consulted a claims insurance lawyer and can recommend one? We're in California, but we probably don't need a local lawyer to get advice. Cigna rejected our claim for the 1st surgery and we're going to appeal, but I'm wondering if I should talk to a lawyer and suss out the situation. Did I mention how much I loathe and despite Cigna? I seriously don't know how those motherfu**ers sleep at night. They had the nerve to call Kevin an insurance whale. Oh, I'm sorry assholes that Kevin's stage four cancer is putting a crimp in your bottom line. Funny you should mention that, we're finding cancer is murder on our finances too. Imagine that.

I'm convinced there must be a special level of hell reserved for health insurance claims departments.
Ivan
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Re: Kevin from California, US (Dx Feb 2012)

Post by Ivan »

How many big ones? I'd say if there's a few (< 5), an ablation might be in order to buy time until the next thoracotomy.

What is the rate of growth, roughly?
wangcns
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Re: Kevin from California, US (Dx Feb 2012)

Post by wangcns »

They said 1-2 mm between 3 month CT scans, but Prof. Rolle said he saw more rapid growth in the unoperated lung (left lung) before the 2nd surgery. I'm trying to get more clarification on this, but our oncologist says we have some time. I have to check how many big ones there are, but I think the 16 mm one in the right lung is the one they're the most worried about, so maybe it's just that one right now?

We asked about ablation, but our doctor says they can do SBRT locally here at UCLA, so I'm not sure what the risks/benefits are for cryoablation vs SBRT vs RFA.
Ivan
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Re: Kevin from California, US (Dx Feb 2012)

Post by Ivan »

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.
wangcns
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Re: Kevin from California, US (Dx Feb 2012)

Post by wangcns »

BTW, just heard back from an old high school classmate who went into radiology, with some of his thoughts on SBRT vs RFA. I thought I'd share, in case anyone else has similar questions. Still amassing info...
it's difficult to say which is better, and there is no good data on ASPS in particular since it's such a rare entity. RFA is usually done by an interventional radiologist, SBRT is usually done by a rad-onc, so depending on who you speak to they will play up the benefits/play down the risks. For both therapies peripheral lesions are better than central lesions. I think a round peripheral 2-3cm dense lesion is better treated by RFA, since it has a good zone of burning. A vague hypodense >4cm lesion is probably better treated by SBRT. The complication [of cancer being spread to other sites], RFA needle track seeding, is uncommon but does happen. There are other potential complications of RFA such as pneumothorax and injury to the lung/vessels. SBRT also has its complications including a dose-dependent risk for radiation pneumonitis and pleural effusion, leading to a general decrease in lung function. If you are considering SBRT for your husband, I would ask what the risk for that is since it can really affect his quality of life.
Good to know...
Bonni Hess
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Re: Kevin from California, US (Dx Feb 2012)

Post by Bonni Hess »

Dear Kevin and Connie,
I posted a long response to you earlier today, but somehow it seems to have completely disappeared :-( Basically I said that I am very sorry that there is regrowth in the lung mets despite the large number of mets that were removed during the two laser resections, but I am grateful that the growth is being closely monitored by both the oncologist and Dr. Rolle, and that there are some viable treatment options. I am personally not familiar with SBRT for lung mets but if you decide to pursue ablation instead of SBRT, based on our personal experience with Brittany, I would recommend Cryoablation rather than RFA. It may be coincidental, but following Brittany's lung RFA in Pittsburgh in 2008, she heartbreakingly experienced rapid and widely disseminated disease progression. This did not occur with either of her two lung Cryoablations. We suspect, but have no definitive proof, that the heated RFA probe seeded the tumor cells through the needle track, a risk which was discussed in the information shared by your radiologist friend. Additionally, Brittany suffered a painful and dangerous pneumothorax post RFA after she had been discharged from the hospital so she had to be emergency re-hospitalized for several days until the pneumothrax resolved and the lung re-inflated. Brittany didn't have a pneumothorax with either of her Cryoablations, and the risk of pneumothorax as a possible complication with RFA was also discussed in the information which you posted from your radiologist friend.
Since both the oncologist and Dr. Rolle are encouraging some type of adjuvant systemic treatment to try to stabilize the progression of the disease, and since systemic treatments are typically more successful for ASPS when the disease is rapidly progressing rather than indolent, I think that it would be a good idea to at least explore TKI treatment. I am aware of several patients who are currently undergoing treatment with Pazopanib, but unfortunately and inexplicably they do not participate on this Board to share their treatment information and results so there is little anecdotal information and data currently available on this site regarding Pazopanib treatment results for ASPS. However, there is an ASPS patient who I follow through her Facebook site who is participating in a combination Pazopanib Veronistat Clinical Trial at MD Anderson. Encouragingly she has thus far had about 15 months of disease stability with significant tumor shrinkage so this might be worth exploring as a possible systemic treatment option. Please know that my most caring thoughts and very best wishes are with you, and that I am here to try to help answer any questions which you may have about RFA or TKI treatment based on Brittany's experiences.
With warm hugs, deepest caring, healing wishes and continued Hope,
Bonni
Olga
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Re: Kevin from California, US (Dx Feb 2012)

Post by Olga »

Connie,
first of all the radiologists can not correctly read the scans after the laser assisted surgery because as you prob. know Dr.Rolle removes the bigger ones and leaves the smaller ones in places just burning them so they appear to be bigger on the scan when in reality these are the round shaped scars with the size slightly bigger than the previous mets. Wait for the next scan it should give you more info.
second, I would never go for the SBRT if cryo would be available for the location this met is in - the lung is damaged enough and the goal is to treat the met with the max preservation of the lung tissue. Cryo is a champion in it, with the RFA going next and SBRT would be me last choice - if the location does not allow the probes inserted. There is a very good cryo doc at the UCLA Dr.Suh and Ivan's Dr.Liu also works there part time between there and Vancouver. And Dr.Littrup from Detroit the best cryo doc he has some way to get insurance to pay in most of the cases - call Varb ask her re.Cigna and how to go about it.
third re. chemo. We had few people with the good very long term response to a traditional chemotherapy when the bigger mets were resected and the chemo was given to control the regrowing smaller mets after the surgery, may be it has something to do with the elevated growth factors after the surgery, read the success stories for more info. I liked the story with the gemcitabine continuously as it is less toxic than MAID and the response was more durable than any TKI.
Olga
Josh
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Re: Kevin from California, US (Dx Feb 2012)

Post by Josh »

Connie and Kevin:

I am very sorry to hear about the new growths following surgery. I'm not sure if you were considering Cedirinib, but I just wanted to remind you that if you qualify for the trial, then your transportation, lodging, and medicine will be paid for by the NCI/NIH. You do have to cover the initial consultation travel expenses, unfortunately. You probably have already seen this, but I just wanted to point it out as a possible option. http://clinicaltrials.gov/show/NCT00942877
and the discussion here on the forums:
http://www.cureasps.org/forum/viewforum.php?f=45

Take care, I hope this is just a temporary "rebound" of the disease that stabilizes soon.
Kkgriffith
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Re: Kevin from California, US (Dx Feb 2012)

Post by Kkgriffith »

Hey all, I need some more advice!

Because of my last CT scan (late January) both of my doctors (Noah Federman and Rolle) have agreed that I should start on Pazopanib, mainly because I have an unusually high tumor count and the doctors in Germany could not remove all of them plus there is already evidence of metastasis in both lungs. The average growth has been consistent since my first CT scan so no surprises there but I think the idea is that they want the drugs to buy me time to do things like cryoablation and more spread out lung resections. I might be starting the drugs either next week or the week after.

My biggest concern is dealing with the side effects of taking a TKI and what are the best/worst case scenarios (ex. liver damage,hemorrhaging, vomiting, fatigue etc). Do any of you have some good links and health tips to combat the effects? I've been researching supplements for liver health and eating more whole fruits/veggies to detox naturally but I'm looking for anything relevant that could help me.

Thanks again for all the great info,
Kevin
Olga
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Re: Kevin from California, US (Dx Feb 2012)

Post by Olga »

Kevin, what is the max size of the met you have now? Have you considered trying interferon-alfa.
I have opened a new forum for pazopanib here:
Board index ‹ Systemic Treatment ‹ TKI ‹ Pazopanib
we will start collecting the data to help you.
I know that there are few people with ASPS that are already on this drug and could share this valuable experience but they are not posting here (although I am almost sure that they are reading this forum so in some sense benefiting from it but not willing to return a favor - it is their free choice).
Olga
Kkgriffith
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Re: Kevin from California, US (Dx Feb 2012)

Post by Kkgriffith »

the biggest met I have is around 1cm, which is the one that Dr. Federman is worried about. He was recommending SBRT to remove it but Rolle did not like that idea (since it might interfere with future laser surgeries).

So far nobody recommended interferon, only sutent and pazopanib (since Sutent is not approved by the FDA for Soft Tissue Sarcomas he says I should go with Pazopanib for starters).
Olga
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Re: Kevin from California, US (Dx Feb 2012)

Post by Olga »

You can get an evaluation from Dr.Littrup re. cryoablation for that met, just send him a copy of the CD and ask to be evaluated.
Olga
mikko
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Re: Kevin from California, US (Dx Feb 2012)

Post by mikko »

Dear Kevin and Connie,
About interferon
Jussi started to inject interferon alfa 6/2011, 18 million units/ week (at that time CT scan showed 10 nodules 3-7mm in his lungs, 3 on the right and 7 on the left)
Next CT 10/2011 showed some new ones and some growth ( 5 on the right and 7 on the left)
CT 1/2012 Stable ( for the first time since Dx 2008).
A week after that Jussi was psychotic. The main reason for that was probably interferon and it was stopped. Jussi was psychotic for 4 months.
CT 6/2012 growth but no new ones
7/2012 Dr. Rolle resected 16 mets from the left lung, two days before your first thoracotomy.
9/2012 Dr Littrup cryoablated all the five growing mets on the right side ( in two sessions).
CT 1/2013 Stable. After seeing the CT scans Dr. Littrup also confirmed that no new tumors could be identified.
What is the role of interferon alfa in this now stable situation? I don´t know.
All the best to you!
mikko
Josh
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Re: Kevin from California, US (Dx Feb 2012)

Post by Josh »

I'm not sure how, but my onc was able to get my prescription drug insurance to pay for Sutent. I have not filled it yet, as we wanted to try the surgical approach first. Not sure how your insurance is set up (I have a separate medical and prescription coverage), but if you would like your onc to call mine to talk about how he was able to get it covered, please email me and I will give you his contact info. It is absolutely crucial to get ins to pay for Sutent as it is not practical to buy on your own.

Also, just curious, but is there a reason you aren't pursuing the Cedirinib trial? I ask because if Dr. Rolle's surgeries don't knock this sh*tty disease out we may be in a similar position seeking chemo. I really hope that whatever treatment you pursue kicks the pants off this disease. Like my dad told me, ask lots of questions until you understand exactly what and why the treatment is, and research all your options. Good luck, man.
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