Josh from Kansas - Dx Sep 2012

[Josh]

There is a larger object that I am confused about in the left near the base that appears to have grown

You have to locate an earlier scan right away. 1.7->1.9 is questionable. If you can see it being smaller, like around 1 then you know for sure it's a met.

I have asked Dr. Federman to look in to it. I am having trouble locating it again, I was going to take a screen shot and ask your opinion. Keep in mind that this is the operated lung and this is the 2nd post-op scan. I'm not sure what the normal healing process looks like, but if I compare this to the March scan, it looks like it "broke off" of another mass of scar tissue. I will post a screen shot as soon as I am able to locate it again.

Olga: The reason I said 2 cm was because this object was, to my knowledge, not visible on the January (pre-op) scan. So it would've had to grow ~1.9 cm since then. Also, no mention was made of it on the last scan, but the radiologist obviously compared it to that scan in order to find it. This is why I am questioning if it is scar tissue.

PS: My brain MRI showed no mets!

[Bonni Hess]

Dear Josh,
Thank you for your thoughtful updates. I am very grateful that your brain MRI showed no mets which is wonderful news .
I agree with Ivan that it is important for you to obtain more information about the possible lung met, to compare your most recent and previous scans, to discuss the scans with Dr. Federman, and to closely follow the lesion. Like Olga, I also question the purpose/wisdom of you beginning to take Pazopanib, especially since your disease appears to be relatively stable at this time. Based on my personal knowledge of other ASPS patients who don't participate on this Board but who I am aware of who are/have taken Pazopanib, Pazopanib has unfortunately thus far not proven to be successful in providing significant tumor shrinkage and sustained disease stability for at least four of the Pazopanib ASPS patients who I have followed, with three of them having heartbreaking disease progression, one of them concerningly having lost contact and not responded to my private messages during the past eight months, and one of them having recently now tragically lost his courageous battle. I of course understand that each patient may respond differently to different drugs and treatments, and thankfully a couple of the Pazopanib patients on this Board seem to be having a successful response thus far, but it seems that at this time Pazopanib is still too unproven for you to begin taking it during a time of relative disease stability and when other treatment options are available to you. I certainly don't mean to upset or frighten you with this information, but because so little documented data is available at this time about ASPS patient response to and results with Pazopanib, I feel an obligation to share any information that I have found through my constant and extensive research and networking because it is important for everyone to be aware of as much anecdotal treatment information and results as possible before making critically important treatment decisions. Additionally, due to the known risk of possible rebound and disease progression when TKI drugs like Pazopanib are discontinued, it does not seem like a good plan to begin the drug for 3-4 months and then discontinue it for several weeks for laser resection which could possibly result in aggressive disease progression during the time that you aren't taking the Pazopanib. I think that this is certainly a concern which needs to be addressed and discussed with Dr. Federman.
I Hope that your new lung lesion proves to just be benign scar tissue from your laser resection, and I will be anxiously awaiting Dr. Federman's review and opinion about it. In the meantime, please take care Josh, know that my special thoughts and very best wishes are with you, and keep in touch with the Board as you are able.
With deepest caring, healing wishes, and continued Hope,
Bonni

[Ivan]

I have asked Dr. Federman to look in to it. I am having trouble locating it again, I was going to take a screen shot and ask your opinion. Keep in mind that this is the operated lung and this is the 2nd post-op scan. I'm not sure what the normal healing process looks like, but if I compare this to the March scan, it looks like it "broke off" of another mass of scar tissue.

Right, seems unlikely it would grow that fast. Could be your lung re-inflating and expanding back to normal-ish post op around that area. Do you have pre-op scans? If there were a few mets in that area before the surgery, that could explain the significant changes this area would undergo over the few months following.

[Jorge]

Hi Josh,
To answer your question, if the TKI works on the lung mets, it's feasible to check if there is necrosis. Since you didn't have other treatment (RFA, Cryoablation or radioation) before, the pathology report will be clear exact for TKI necrosis.
I don't know why Dr. Federman recomemed to take TKI before laser surgery. Maybe TKI after surgery is better? At least this is our strategy.

Best wishes!
Lynette

June update:
My recent CT scan showed a few tiny new nodules on the right (unoperated), while the left (operated) is still hard to read from the surgery, but appears mostly stable. There is a larger object that I am confused about in the left near the base that appears to have grown, but it is an odd shape, not circular at all, so I hesitate to call it a met. It was 1.7cm on the March scan and it is now ~1.9 cm in size, which means it would've had to have grown almost 2cm since January. I am waiting on Dr. Rolle's reading of the scans for a definite answer, but Dr. Federman called it mostly stable with a few new small nodules. He has suggested that I take a 3-4 month trial of Pazopanib and then take 3-4 weeks off and then return to Germany. This would put me back in Germany early October, if Dr. Rolle agrees.
I always felt like it was a good idea to take some treatment prior to the surgery; it will hopefully show necrosis to prove/disprove efficacy. However, my concern is: is it infeasible to look for necrosis from a TKI? My other concern is that I will upset the relative stability that I have been experiencing. I don't want to poke the proverbial beehive, but I don't want to sit and wait and waste valuable time either.
Any thoughts on this?

I am filled with hope that everyone is doing well!

[Josh]

Hello, everyone. I am writing following my second visit to Dr. Rolle in Coswig. He removed 72 items from my right lung. If memory serves me, 37 were mets and 35 were granules (ERASER). New ones became visible on the scans between Jan and Aug, so it is possibly to my benefit to have waited so that the mets could be found by Dr. Rolle.

From what I understood, it was an incomplete resection. He had stated up front that he wouldn't be able to remove them all. I believe he is concerned about lung preservation and additionally about the length of time I would be in surgery relying upon my left (pre-operated) lung solely. I think my oxygen levels were dropping at a rate they were uncomfortable with and this caused him to end the surgery early as well. This is all unreliable information as, although Dr. Rolle speaks English very well, we still experience a language barrier and it is hard to get answers sometimes or to communicate a question correctly.

I am thankful for the tumor reduction, and am hoping that new ones stop showing up. It is now almost a year in to my diagnoses, but, unfortunately, my first onc had been ordering low resolution CT scans (5mm slice I think) and so I cannot judge fully what happened in that year. What I can see is between Jan and today.

[Bonni Hess]

Dear Josh,
Thank you for your very thoughtful update. It was so very good to hear from you with the wonderful news that 72 "items" are now gone from your right lung significantly reducing your body's tumor burden I'm sorry that Dr. Rolle wasn't able to safely remove all of the visible mets, but am grateful that he exercised caution to ensure a safe and successful outcome to the procedure without putting you at risk and destroying too much of your lung tissue. I Hope that you are now resting and recovering comfortably with no post-op pain or other problems, and that you will quickly regain your strength and energy. Enjoy your time in Germany while you recover enough to return Home, and then travel safely and happily Homeward bound knowing that you are returning Home minus 37 lung mets Take care Josh, maintain regular and complete scans as recommended in Ivan's scan schedule post, and keep the Board updated on how you are doing as you are able.
With gentle hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

[Ivan]

I had 84 removed from my right lung during the first round. I think over half of them were vaporized as well.

How long between your first and second surgery? Your lungs can recover A LOT, but you really need to put the aerobic work in.

[Josh]

How long between your first and second surgery?

Over 6 months. First one was mid January, this one was on Aug 6th. My capacity is definitely not coming up as quickly this time, as I would expect now that I have 2 operated lungs. I average between 2500 and 3000 mL. I am hoping to get this back up and plan on starting a good cardio routine when we get back to the States. We have been walking a lot during my recovery; we actually took a tram up to Dresden and got a nice tour of the city in. Now we are in Munich at my wife's cousin's flat and have been slowly seeing this city as well. Altogether a pleasant trip, albeit with a few weeks of pain in the middle

Post-op pain is similar to last time, but I feel much more fit overall, which is a huge factor in recovery.

Bonni, we are also grateful for his cautious approach, even as anxious as we are to get all of these mets removed. Thank you for your well-wishes and we reciprocate your hugs

[Ivan]

Josh, there are many VO2max programs available online. In my opinion, one of the most effective techniques is the 30+30 second intervals. 30 seconds of all out effort, followed by 30 seconds of light effort to recover, repeated 10-20 times. This will rapidly increase oxygen uptake, but it should only be attempted 2+ months after once everything is healed already. The other way (depending on your current body composition, of course) is to lose the fat and get down to under 10% body fat.

[Ivan]

Carbs discussion has been moved into its own topic - http://www.cureasps.org/forum/viewtopic.php?f=53&t=837

[Josh]

Just wanted to give a quick update: I had a lung CT done on the 29th, the first one since the surgery on my right lung in Aug. It shows that my left lung has one met that has grown at a really fast rate, from 6mm in June to 15mm now. There are a few others that have grown as well, and the radiologist reports new tiny ones, but I am holding on to hope that those are simply tiny scars coming visible as the laser surgery scars recede. I have not counted nor measured the growth of the others, but a quick look with my untrained eyes doesn't show much growth, and I did not see any others >1cm, but maybe one or two in the 5-6mm range. I have contacted NIH/NCI about the Cedirinib trial, for which I now qualify, as well as made initial contact with Dr. Littrup about cryoablation. Dr Federman has suggested SBRT as another option to destroy the fast-grower. Anyone have opinions on the pros and cons of either method? My biggest fear right now is that Dr Littrupp responds that there are too many growers and he won't cryo the fast one.

On a brighter note, the larger mass which I was concerned about in the June scan was indeed simply scar tissue and has now shrunk significantly. I have also received an MRI of my spine due to my ongoing and parallel neurological issues (abnormal brain MRI indicative of MS) and my onc says it is clear from the cancer side of things, and am waiting for another appt with the neurologist.

I hope everyone else is doing well, I have been keeping up with your stories even if I have not been responding!

Take care,
Josh

[Ivan]

Josh, thanks for the update. 6 mm to 15 mm in 5 months, huh? Is this met close to the the chest wall? ~2mm per month is not overly dramatic. Have you sent this scan for review by Dr. Rolle? He should have a good idea whether there are new nodules. I had two rounds on each lung, and my plan was to have more. I wouldn't try systemic just yet.

I highly advise you against "hoping" that these are not new nodules or that the nodules have not grown. Every time I've done that looking at my own scans, I was wrong. In some cases it ended up costing me. Be as objective as possible!

If there are only a few 5mm to 1cm, Dr. Littrup could ablate them all in one procedure. That's probably what I would do, and then wait for of the new ones to appear / grow out before going for Dr. Rolle round 2.

[Olga]

To add to Ivan's advice - when/if you send a scan to Dr.Rolle, ask his advice what you should do - prepare for the second round of the surgeries or cryoablate the fast growing one and wait for awhile. He referred some people to Dr.Littrup to buy some time in between the surgeries or to avoid them as long as possible to let the lungs recover.
SBRT versus cryoablation. SBRT is less invasive - does not involve the punching a hole in your skin/pleura/lung, less chance of the procedure induced traumatic complications, can reach some locations that are inaccessible with the cryo or RFA probe - which is good, but on the downside there is no way to know if they hit the target until few months after the procedure and there is a risk on the radiation induced lung tissue damage (read more on the Pubmed for the radiation-induced pulmonary fibrosis or radiological pneumonitis after stereotactic body radiotherapy (SBRT) for lung tumors to get a feel of the problem, the articles like
http://www.ncbi.nlm.nih.gov/pubmed/20584582
Pulmonary fibrosis turns the lung tissue into the scarring, damaging the lungs and compromising its breathing ability. It is unknown why some people get their lungs damaged by the radiation therapy and other get not.
Cryo it is a real time controlled procedure and having it done by Dr.Littrup ensures the quality and minimizes the probability of having some severe procedure related complications, although it can still happen. Some of our patients had pneumothorax and lung collapse but for the people after the lung surgery especially the laser assisted one the probability of the lung collapse is very low as there is an adhesion between the lung and pleura, it will support the lung even if there is an air leak. My choice would be cryo and only if is not possible by some technical reason, then SBRT.

[Josh]

Thanks for the replies. I am thinking cryo would be the best route if Dr. Littrupp will accept me. The reason being that I already have (undiagnosed) lung problems which I detailed here http://cureasps.org/forum/viewtopic.php?f=13&t=839. I also wonder how much of this adhesion you are talking about, Olga, is leading to the increased discomfort I've been experiencing since the surgery. Do you have any more info on this adhesion?

Another question I have is has anyone ever looked at the rate of growth of ASPS mets to see if they tend to grow at a linear rate (1>2>3>4>5>etc) or at a exponential (1>2>4>8>16>etc) rate? Or is it less steady and more random?

[Ivan]

Rate of growth is highly unpredictable. It's neither linear nor exponential. In my experience they tend to grow steadily up to 1 cm and then start growing more rapidly. That said, I've had ones which staid at 6-7mm for years and then started growing all of a sudden at 2mm per month.

In my opinion, immediate arrangements have to be made by the time they reach 1 cm. I think Dr. Littrup is likely the best option, but you should definitely get Dr. Rolle's opinion on the progression before you make that decision.