LCMA - Dx 2007
Re: LCMA Update...
I am wondering what this radiologist calls "Innumerable". We had several cases when people's 20-30 metastases were also called that and it was OK with Dr.Rolle. On the other hand it looks like were we started with Ivan - and the pattern looks the same with the many small mets in a subpleural location that Dr.Rolle said was easier for him to eradicate - he did it in a way the laser is used to remove the hair from the legs, going from dot to dot and burning them on spot:( With the mets like that - spread on the surface - unfortunately the laser is the only way to do a surgery and it needs to be done as a first surgery (if ever) because to do it Dr.Rolle needs the clean lung surface without extensive bleeding/scarring that is getting left after any thoracotomy, it is his best shot. But you may be right and there to many even for him - so again it it up to him to say if the surgery is feasible and if he is willing to do it knowing about the spinal met, as it is stable (consult the new doc re. what could be done about it). Or you can try to cryo ablate the bigger mets (the sizes are ideal for the ablation now but are starting to overgrow the optimal) and to start cediranib and hope for the best response...We did not have this option when we started with Ivan's multiple lung mets so in some way it was easier as it was the only way to go then (we never really considered the cytotoxic chemotherapy especially AIM as it most often does not work in ASPS and even accelerates the neo-vascularization in some people, may be gemcitabine long term or vinca alcaloids as at least we had some positive anecdotal experiences reported here).
Olga
Re: LCMA Update...
LCMA, you have zero time to waste. If I was in your position I would be on my way to get cryo ablations of the biggest mets RIGHT NOW.
I say get that done first, then play around with some clinical trials
I say get that done first, then play around with some clinical trials
Re: LCMA Update...
Yeah, of course I am not a doctor. It's just my fairly informed opinion, like I said. ASPS is a deceptive disease because it is slow growing. Some people wait too long and they end up dead because treatment options are no longer available when they are finally ready to do something. Obviously I don't want that to happen to you, or anyone else for that matter.
Example 1
I had a met 2 years ago in my left lung, and the plan was to get it ablated. So there was a roughly 1 month delay from the scan to the oncologist meeting. It was about 1.2 cm or so. I had some trips planned for the spring time, and also figured I had plenty of time. There were also further delays in getting paper work to the right people. The bureaucracy is really bad here. So few months later when I finally saw the guy who was going to do the ablation and had another scan there he basically told me it had grown too close to the chest wall and I am risking incomplete ablation and severe pain. I think it was 1.7 cm by then. So at that point I GTFO Vancouver and went to Dr. Rolle for another thoracotomy. That's far worse than an ablation but still OK, but imagine someone who missed the opportunity to ablate at 1 cm and does not have another option because their multiple mets are now 3 cm? It has happened to many people.
I don't know how your health care system situation is, but around here there is a big delay between when you and your oncologist decide that you need a procedure, and when you actually get it. So what we usually do is pursue about 5 treatment options in parallel to avoid delay, and then end up using the best one. This time we didn't do it nearly as well too. Ideally, I would have rather had this ablation a month ago.
Example 2
I believe 'F' also made a similar mistake. 'K' had that one met which was growing constantly and ended up getting close to invading her heart - thankfully not. That required a much more difficult, dangerous, and painful surgery than a timely cryoablation a year before then - a low pain, reliable, and very safe procedure.
Yes, hindsight is 20/20 but unless there is a particular reason or SOLID treatment plan (not a low chance of some clinical trial working) there is no need to play the waiting game past a certain point.
The best (in fact, the only proven and permanent) treatment for ASPS is aggressive surgery. I am pretty sure that any oncologist who tells you otherwise is a clown. Oncologists view ASPS as almost purely systemic disease and therefore have a bias towards systemic treatments in general vs surgery because most diseases they deal with cannot be controlled locally. ASPS can be if you do it right, and do it early. For that reason, I firmly believe that Cediranib and the like should be considered after ablation, etc. Yes, there are amazing responses to Cediranib like Brittany but they are very rare and you can certainly hope that you'll get one, but you can't expect it to happen.
When your mets are small - you are ultimately in control. You have many options available to you, and you can decide when and what you want to do. When they get large, you are at the mercy of the disease. Your options become progressively more limited if you let the situation slide. I had 200 mets resected by Dr. Rolle in 2005, 2008, and 2009. I had 1.5 cm mets in 2005, and they were growing. If I went on some trial (as being offered to me) and try it, then in 9 months or so when I decided that I wanted my surgery after all, chances are I would no longer be a candidate. If I didn't do it early I would probably be dead by now.
No oncologist in all of North America would have recommended that option to me! I'm sure the oncologist you will see is great and everything, but how about this for a test. Ask him how many mets he thinks it's possible to remove from a patient's lungs without affecting the quality of life. When he gives you some lame response - educate him. That right there will prove that he knows nothing about one of the best treatment options for ASPS lung mets - laser resection by Dr. Rolle.
One more thing to keep in mind. The amount of damage done to the lung in an ablation (or laser resections) goes up in the third power proportionally to the met size. So ablating a 3 cm met with margins you lose (3+1)^3 = 64 cm^3 vs a 1.5 cm met (1.5+1)^3 = 16 cm^3, which is 4 times less. Recovery time, rate of complications, and lung capacity are all improved.
Example 1
I had a met 2 years ago in my left lung, and the plan was to get it ablated. So there was a roughly 1 month delay from the scan to the oncologist meeting. It was about 1.2 cm or so. I had some trips planned for the spring time, and also figured I had plenty of time. There were also further delays in getting paper work to the right people. The bureaucracy is really bad here. So few months later when I finally saw the guy who was going to do the ablation and had another scan there he basically told me it had grown too close to the chest wall and I am risking incomplete ablation and severe pain. I think it was 1.7 cm by then. So at that point I GTFO Vancouver and went to Dr. Rolle for another thoracotomy. That's far worse than an ablation but still OK, but imagine someone who missed the opportunity to ablate at 1 cm and does not have another option because their multiple mets are now 3 cm? It has happened to many people.
I don't know how your health care system situation is, but around here there is a big delay between when you and your oncologist decide that you need a procedure, and when you actually get it. So what we usually do is pursue about 5 treatment options in parallel to avoid delay, and then end up using the best one. This time we didn't do it nearly as well too. Ideally, I would have rather had this ablation a month ago.
Example 2
I believe 'F' also made a similar mistake. 'K' had that one met which was growing constantly and ended up getting close to invading her heart - thankfully not. That required a much more difficult, dangerous, and painful surgery than a timely cryoablation a year before then - a low pain, reliable, and very safe procedure.
Yes, hindsight is 20/20 but unless there is a particular reason or SOLID treatment plan (not a low chance of some clinical trial working) there is no need to play the waiting game past a certain point.
The best (in fact, the only proven and permanent) treatment for ASPS is aggressive surgery. I am pretty sure that any oncologist who tells you otherwise is a clown. Oncologists view ASPS as almost purely systemic disease and therefore have a bias towards systemic treatments in general vs surgery because most diseases they deal with cannot be controlled locally. ASPS can be if you do it right, and do it early. For that reason, I firmly believe that Cediranib and the like should be considered after ablation, etc. Yes, there are amazing responses to Cediranib like Brittany but they are very rare and you can certainly hope that you'll get one, but you can't expect it to happen.
When your mets are small - you are ultimately in control. You have many options available to you, and you can decide when and what you want to do. When they get large, you are at the mercy of the disease. Your options become progressively more limited if you let the situation slide. I had 200 mets resected by Dr. Rolle in 2005, 2008, and 2009. I had 1.5 cm mets in 2005, and they were growing. If I went on some trial (as being offered to me) and try it, then in 9 months or so when I decided that I wanted my surgery after all, chances are I would no longer be a candidate. If I didn't do it early I would probably be dead by now.
No oncologist in all of North America would have recommended that option to me! I'm sure the oncologist you will see is great and everything, but how about this for a test. Ask him how many mets he thinks it's possible to remove from a patient's lungs without affecting the quality of life. When he gives you some lame response - educate him. That right there will prove that he knows nothing about one of the best treatment options for ASPS lung mets - laser resection by Dr. Rolle.
One more thing to keep in mind. The amount of damage done to the lung in an ablation (or laser resections) goes up in the third power proportionally to the met size. So ablating a 3 cm met with margins you lose (3+1)^3 = 64 cm^3 vs a 1.5 cm met (1.5+1)^3 = 16 cm^3, which is 4 times less. Recovery time, rate of complications, and lung capacity are all improved.
Re: LCMA Update...
I have to comment here. It is unknown when the centrally located lung met that 'K' had, had actually invaded the vein and extended further toward the heart. If might have happened earlier at the stage they considered (and did not proceed) the cryo with Dr.Littrup. What if the met already invaded the pulmonary vein then? There might be an incomplete ablation then and the free flapping part of the met inside of the vein could break out and block the blood flow somewhere.
I am trying to illustrate that there are limitations in the attempts to second guess the past mistakes, and there is also a well know limitation of any percutaneuous ablation in the visualization of the situation (inability of the doctor to really see/palpate the met but treat it based on the images on the screen that can be misleading in some cases) and associated with it cases of an incomplete ablation. This is a reason that ablation is not considered to be the first line of the treatment but the second with the surgery being the proven definite local treatment as long as it is available and all the visible metastases can be resected without excessive risk of the loss of quality of life.
I am trying to illustrate that there are limitations in the attempts to second guess the past mistakes, and there is also a well know limitation of any percutaneuous ablation in the visualization of the situation (inability of the doctor to really see/palpate the met but treat it based on the images on the screen that can be misleading in some cases) and associated with it cases of an incomplete ablation. This is a reason that ablation is not considered to be the first line of the treatment but the second with the surgery being the proven definite local treatment as long as it is available and all the visible metastases can be resected without excessive risk of the loss of quality of life.
Olga
Re: LCMA Update...
LCMA - I think that Ivan just feels that we ourselves were not active enough with the timely cryo in the past and it may cost us in the future as we kept a few bigger mets in the body longer then it was necessary - just the scheduling went wrong plus our own late start issues, and he wanted to warn you that there is a size limited window of the opportunity that could be lost later. It is really painful to realize our own mistakes.
I also want to share the advice that Eva Mitchel (she was the aunt of one of the ASPS patient) gave me in the beginning of our ASPS journey - she said - forget about being polite and patient and expecting that everything works out by itself and that the people responsible at the clinics and offices will do everything right and on time. It is your own main goal and responsibility to push them and to check on them as there are so many people they need to care about and you only have yourself (in my case I only have Ivan). I often remember that when we loose weeks if something is not scheduled as promised or the referral is lost or the scans have not arrived for the other doc to review or there is suddenly a vacation for few docs that involved in the case and we lost few days before they left and everything could be initiated.
I also had an e-mail correspondence wit the long term survival of the ASPS with the multiple lung mets Barry from UK and he said me about his 3 lung surgeries that he always had the surgeries done on the smaller mets sizes and completely asymptomatic - his idea was to stay a step ahead of the progression and address the problem before it actually presents itself. I know that we can not (and should not) make any conclusions from his single case but I accepted his approach.
I think that you are doing fairly good with the scheduling as you have an appointment with the oncologist coming very soon and you have already initiated the consultation with Dr.Littrup as it usually takes time with him to look at the new case between all his conferences and numerous patients. Please do not be upset with Ivan as he really cares about every ASPS patient and want to share what we know.
I also want to share the advice that Eva Mitchel (she was the aunt of one of the ASPS patient) gave me in the beginning of our ASPS journey - she said - forget about being polite and patient and expecting that everything works out by itself and that the people responsible at the clinics and offices will do everything right and on time. It is your own main goal and responsibility to push them and to check on them as there are so many people they need to care about and you only have yourself (in my case I only have Ivan). I often remember that when we loose weeks if something is not scheduled as promised or the referral is lost or the scans have not arrived for the other doc to review or there is suddenly a vacation for few docs that involved in the case and we lost few days before they left and everything could be initiated.
I also had an e-mail correspondence wit the long term survival of the ASPS with the multiple lung mets Barry from UK and he said me about his 3 lung surgeries that he always had the surgeries done on the smaller mets sizes and completely asymptomatic - his idea was to stay a step ahead of the progression and address the problem before it actually presents itself. I know that we can not (and should not) make any conclusions from his single case but I accepted his approach.
I think that you are doing fairly good with the scheduling as you have an appointment with the oncologist coming very soon and you have already initiated the consultation with Dr.Littrup as it usually takes time with him to look at the new case between all his conferences and numerous patients. Please do not be upset with Ivan as he really cares about every ASPS patient and want to share what we know.
Olga