Nhi from NY - Dx June 2016

[Bonni Hess]

Dear Nhi, Thank you for sharing this VERY good and encouraging news. I am SO happy and grateful for your thus far very successful and sustained response to your Sutent treatment which based on my extensive anecdotal observations and research has unfortunately not been experienced by most ASPS patients treated with Sutent. Your very positive Sutent response demonstrates that every patient can respond differently to the same drug as has happened with Brittany's unprecedented, long term, now 9 years of sustained disease stabity and dramatic tumor disappearance since beginning her Cediranib Clinical Trial in April 2009, while the majority of ASPS Cediranib patients unfortunately only experienced minimal to moderate tumor shrinkage and relatively short term disease stability before developing resistance to the Cediranib and disease progression. Brittany's Clinical Trial oncologist and nurses have no explanation for Brittany's VERY successful long term Cediranib response, and describe her as an "outlier" who inexplicably appears to be an exception to the majority. We have our own theories as to the possible reason for Brittany's thus far VERY successful Cediranib response, but unfortunately there is no research being done to explore, investigate, and document Brittany's unique response. It is wonderful that you are having such a successful response to your reduced dosage Sutent regimen with minimal side effects, and my very best wishes and greatest Hope are with you for continued treatment success. Take care dear Nhi, enjoy a beautiful summer, and keep in touch with the Board as you are able. Sharing your continued good news with happy hugs, special happiness, caring thoughts, and continued Hope, Bonni

[Ivan]

Congratulations! You certainly appear to be an outlier as far as Sutent response goes.

The good news is that now every year brings us closer to a definitive cures such as this - https://www.forbes.com/sites/victoriafo ... 34604e1005

[ntran727]

Thank you Bonni and Ivan. Yes, it is amazing that I am responding so well to the medication, especially at such a low dose. I wonder if the tumors are just dormant at this time after the rebound growth from removing the primary and maybe it just slowed down and stopped growing? It is hard to say of course as I wouldn't just stop the medication, but we hope to decrease to 12.5mg daily for "maintenance" as my oncologist calls it. I seem to be an outlier on this forum, but my oncologist tells me about all of the successes he has had with Sutent for his patients, many of which are still on the medication. There is one patient he has had on it for about 20 years and just taking maintenance of 12.5mg daily with no progression. Either way, maybe it is my positive and non-stress personality and attitude that helps! The immunotherapy is looking so promising. Thanks for the article Ivan. I hope you are doing well on your treatment as well :)

[Olga]

Nhi - I am so glad to hear re. prolonged stability. I was thinking about your guess that it is possible somehow your sarcoma went into stability after the initial spur of growth after the surgery due to elevated growth factors needed for the healing by the body, by itself and not as a sunitinib treatment response. We actually have not really seen the stability by itself here but rather the very slow and often undetected growth - we had some vague cases when stability was stated by the radiologists but sometimes they were based on the low resolution scanning not detecting the growth or comparing one scan to another instead of the longer in between interval scans like a year. We had the situation like 5 years ago when the stability on the consecutive CT scans was stated by the radiologist but then compared on a yearly basic the growth was pretty noticeable, it caused to need have a rather speedy surgery arrangement with Dr.Rolle at the time. So I think that the arrest of the growth can most probably be contributed to sunitinib. Some people do have better than average response to TKI as you know from Brittany Hess case.
It is also very interesting that the half dose regiment is the same effective for you as the full dose. The maximum tolerated dose(MTD) is not necessarily the one that is needed for the maximum response in a given patient, sometimes the lower dose is not even tested for efficacy overall, and there is a significant inter-patient variability noted. I always remember what Pf.Judson, the biggest sarcoma expert from UK said - that is his life long oncology practice he saw some extraordinary responses to all drugs at all doses regardless of the chemo-resistance or advanced stage of disease.

[ntran727]

Hi Olga,

I agree with you completely on all of your thoughts. Thankfully, the radiologist reports will always list out the size of the lesions, stating that they measure 2-4mm in size and are stable. If they just write stable without giving the size, I would be more skeptical. I have all my CDs and reports just in case I ever need to look at them myself. Before starting on the medication, the rate of growth of my tumors was about 2mm a month for the large ones and 1mm a month for the smaller mets. After they shrunk to 3-4mm in size, they just stayed the same. I wonder if I were able to tolerate the full dose if they would shrink more. I also don't know if the rate of growth would've changed or halted had I not started the medication right away. All things I guess I will never know. Either way, if it is working, I won't question it! :)

[ntran727]

Hi everyone,

It has been a while since I updated. My last 2 CT chests in September and most recently this week came back stable. During my visit in September, I asked my oncologist if I could cut down on 12.5 alternating with 25 mg every other day to just regular 12.5 mg daily instead. He told me that he didn’t think it was a great idea because most likely the medication is suppressing the growth of the tumors. I inquired about possible surgery and perhaps maybe taking me off the medication after that. He recommended I see a CT surgeon, which I did in November. The surgeon said that he sees 4 main ones on my right lung and 1 main one on the left lung. The rest are too small to see (I have about 10-15 nodules apparently but usually only 5 are commented on in terms of size of being around 3-4mm). He said he could try to resect them and that it’s pretty doable based on their location. He said it would be sorta like cherry picking and he doesn’t know if he would be able to get them all. He would do his best. The surgery would take 1-2 hours 1 lung at a time but he may possible be able to do both in 1 day. He will use a new muscle saving approach with wedge resection but says I won’t lose much long tissue. I will be in hospital for 3 days and takes 2 weeks for full recovery. It doesn’t sound that bad.

I then asked my oncologist if I could ever get off the medication or if the surgery would change his management ie. reduce the dose of my medication or take me off of it and be at first said he doesn’t think the surgery will change anything and then after today’s visit he was all for the surgery and eventually taking me off the medication. What do you guys think about the surgery? Should I get it done? And what about the med? Is it ever going to be safe enough for me to come off it? Would it be bad if it grew back after I stopped the med and would the med still be effective if I resumed it after it started growing back? I know some of these questions no one will be able to answer, but just thoughts before I schedule the surgery which I am leaning towards.

On another note, I have twin babies due in early May, end of April. My surrogate is doing well and we are very lucky.

In terms of medications, I am still taking the Sutent 12.5 alternating with 25mg every other day with almost no side effects besides my hair still turning white. Feet are much better and I have no pain anywhere, no stomach symptoms and no fatigue at all, so that’s great news. My doc says I will need to be off the sutent for only 1 week prior to surgery. I also haven’t gotten my MRI and/pelvis yet because wasn’t able to make an appointment (scheduled too late). It is scheduled for end of February and hopefully it will be clear also.


I hope everyone is doing well. I am trying my best to follow your stories.

[D.ap]

Hello Nhi

Your May surragant due date is so awesome !
Congratulations to you all!

It will be 3 years in June since your dx’d and your growth has been slow in your lungs huh? :)

Have you had your tumor sequenced yet?
The scan was a Ct of your lungs and how detailed was it?

The tumors seem to be regionally located ?
Upper lower ?upper?

Was there talk of possibly causing growth because of:
1.Surgery
2. Going off sutent .

[ntran727]

Hi Deb,

I have 5 nodules measuring 3 and 4mm in size, 4 on the right lung and 1 on the left lung scattered in the periphery and some centrally located, none of which the surgeon states he cannot get to although he can't promise that he would be able to get them all.

Since I started the Sutent in December 2016 (a little over 2 years ago), the lesions shrunk from the largest being 9mm to now 3-4mm and has stayed that way ever since. We have not done tumor sequencing - my oncologist did not offer that to be done probably because the sutent has been working for me. We are now down to almost the lowest dose but he didn't think I should go down to 12.5mg daily and should stay on 12.5mg/25mg every other day. He is questioning whether or not the sutent is even needed at this point or if the tumors are inactive. He did not think that surgery will make them grow more. Going off the sutent is always a risk, but he would only take me off if I was stable for some time after the surgery and we would be monitoring closely for any growth and start back on the medication if that happens. I think the plan would be to keep me on the lowest dose of 12.5mg daily after the surgery for at least 6 months and then consider stopping the medication all together for a while longer and keep a close eye.

[Olga]

I am not sure what is the reason for going surgery route? If you are100% stable and the side effects are not bad? In my opinion, once the drug started, you should use this till it looses its efficacy. Besides the mets of this size are hard to find on the surgery and can be missed, the surgery itself if very damaging for the lungs and if you use this option now and he misses some, the next surgery would be very complicated due to a scarring so you should really use the surgery option wisely. Dr.Rolle said it is a chess game,you have to think hard and plan ahead based on the typical pattern on ASPS progression. The mets can also be cryoablated if they start to grow, on a size closer to 10 mm.You can even consult the cryoablation doctor now to find out if the mets are amendable to cryoablation depends on the locations.
Ivan and other people here had to have a lung surgery because back then there wasn't any effective drug available to treat it systemically, and the number was very high for the cryoablation. But now you have a chance to try immunotherapy checkpoint inhibitors drugs like Keytruda or Opdivo and there is a high chance it will be effective.
My guess re.oncologist suddenly supporting the surgery is his wish to see if the mets might be actually dead, i.e. scars

[D.ap]

Nhi
I was reading thru Joshua’s personal and want to link you to a post Olga made available to the forum back in 2014.:)


http://www.cureasps.org/forum/viewtopic.php?
f=3&t=961
It refers to primary tumors however it would make sense with metastatic tumors I believe .

Joshua’s VATS surgery was 3 times as hard on him than the laser surgery , as I remember .

What kind of lung O2 recovery was speculated to happen after the proposed lung surgery ?
How would the surgical procedure be performed and or what is it called ?

[ntran727]

Hi Olga and Deb,

My oncologist and I were both thinking the same thing. I guess it was more my idea to get the consultation with the surgeon to see if there was a way he could remove them. We are not sure the lesions are dead or if they are just inactive and if the sutent is keeping them at bay. I met with the surgeon in November, and it will be a standard VATs but he said with the muscle saving technique and he wants to do one side at a time. He said it would be like cherry picking yes, and that he may not be able to get them all. I have about 10-15 nodules mentioned, only 5 of which are large enough in size for them to comment on the location and the 5 he will try to remove. So I am aware that some smaller ones will be missed. Originally my oncologist did say that he still thinks I would need the medication because it would be too risky to stop it even if he got all he could see, so I didn’t pursue the surgery any further. Then after I saw him 2 days ago and had another stable CT scan, he seemed a lot more positive about me having the surgery and then eventually try to take me off the medication. I think I may need to have another conversation with him about exactly why he changed his mind before proceeding with the surgery. I also had second thoughts after thinking about what a major surgery it would be and possibly needing more surgery in the future if they grew back and be in worse shape than I am now. I also don’t know the long term effects sutent will have so of course don’t want to be on it forever if possible. What do you guys think about me just lowering to 12.5mg daily and then eventually stop it to see what would happen with the lung mets? ASPS is just very tricky and I don’t want to make the wrong decision. I could also just be happy with what’s happening now and don’t disturb anything while it is working for me.

[Olga]

I want to add some info for your consideration.
Ivan had 4 lung surgeries and Dr.Rolle agreed to perform them only because he was expecting to be able to get out all the visible mets. Ivan had to wait for a year till Dr.Rolle said it is a time because Dr.Rolle wanted to be able to resect all the visible mets so he wanted to make sure there are no new mets - as they grow they became visible. It was only possible to resect this huge number of the mets because Dr.Rolle used his laser tool so no wedges were taken out. Even though Dr.Rolle palpated all the lung he still missed the mets that were smaller than 0.5 mm so technically saying he still resected not all of them but the mets bigger than 0.5 mm - but it bought Ivan enough time to be able to survive for more than 10 years after the last lung surgery. The first surgery done on a clean non-scarred field is the best chance to take more mets - all the consequent surgeries are more complicated and less effective, so this is why we traveled to Germany as we needed to use this first unique chance to resect all the visible mets. So in general I do not think it makes a sense to have an open lung surgeries just to resect only few mets expecting that there are numerous smaller ones will not be found/resected, in that case they can be just cryoablated when/if they get bigger.

[Olga]

If something is working, you should not change it. Every option has a limited value, use it all. I would not change the dosing either since there are no dose limiting side effects.
Every major surgery is a big surgical trauma and a source of the tissue growth promoting/vascular creation signaling as this is the essential part of the healing process. As of now your treatment goal suppressing this growth. You need to balance the risk/benefit ratio. All of our patients would only have a lung surgery because there were no other treatment options available. You happen to have an unusually good long term response to TKI and I would preserve it for now. I would go for the surgery if there are no other options and if the surgery looks to be a complete resection on each lung. I would consult with Dr.Drewes in Germany for the first chance to be used in an optimal way.
For diagnostic purposes one superficial nodule can be taken out eventually in the future if the stability continues for years.

[D.ap]

Very Very GOOD point Olga . :)

[D.ap]

Sorry Nhi
Just a little consideration over and beyound the obvious .
You are doing great in your quest !: )

If something is working, you should not change it. Every option has a limited value, use it all. I would not change the dosing either since there are no dose limiting side effects.
Every major surgery is a big surgical trauma and a source of the tissue growth promoting/vascular creation signaling as this is the essential part of the healing process. As of now your treatment goal suppressing this growth. You need to balance the risk/benefit ratio. All of our patients would only have a lung surgery because there were no other treatment options available. You happen to have an unusually good long term response to TKI and I would preserve it for now. I would go for the surgery if there are no other options and if the surgery looks to be a complete resection on each lung. I would consult with Dr.Drewes in Germany for the first chance to be used in an optimal way.
For diagnostic purposes one superficial nodule can be taken out eventually in the future if the stability continues for years.

http://www.cureasps.org/forum/viewtopic ... sia#p10917