Dear 'F',
I am so very sorry and saddened about the heartbreaking results of dear 'K''s today's scans, and I deeply share your great pain. I was so very Hopeful that the Sutent would continue to provide a positive response in shrinking the primary and stabilizing the progression of the disease. I am grateful that resection of the primary has been scheduled soon to help reduce the tumor load, and am holding tight to Hope for a very successful outcome. How many lung mets were seen on today's scans, and what is their size and location? I will be holding dear 'K' and your family very close in my heart and my most caring thoughts during the coming days as you try to determine the best treatment approach. Please take care and know that I and the other ASPS Community members are here to try to help with shared anecdotal treatment information and strengthening support. We will be anxiously awaiting your next update when your time and situation allow.
With special caring thoughts and continued Hope,
Bonni
'K' experience on Sutent
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
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Fictional
We had sent 'K''s films to Loma Linda proton, and they said her tumor looked too big for it, and the surgeons felt that it was resectable (marginal only, though) without RT anyway.
In the end we were frustrated by the particular surgeon we happened to get at DF. He was relatively new with no surgical oncology training (his background was in trauma). After we got the second opinion, he told us by way of John Goldberg that maybe it was true the tumor could come out without an exenteration after all.
The crazy thing is that her primary really is palpable and it has continued to get mushy on Sutent. I want to see the path because it seems as if it necrotic and I wonder if what we're seeing is a burst of metastatic growth because of death of the primary. I don't know whether that can help us any, but I'm just trying to figure out why this happened. Why the sudden growth in lung mets for such an indolent tumor? Doesn't this seem fast? And why when the primary seems to be getting necrotic? Pretty scary.
I have read that once the primary is out, it could be possible to substitute for the primary's inhibition by adding more anti-angiogenesis, but it is hard to be enthusiastic about just more sutent if the mets are growing while she is on it. She may be on a lowish dose, though, and apparently there's a feeling that continuous dosing may be more effective in kids than the 4 wks on / 2 wks off. I'm just thinking aloud.
The mets are difficult because they are located bilaterally, really all over. Of the three that were present at the beginning, 1 stayed the same size, the other two grew - now 4 and 5 mm, used to be 2 and 3. The new ones are 1-2 mm but scattered throughout. A total of 8. Some are quite peripheral and I would think accessible by cryo or radio, but there's a scary one near her heart. What she needs is effective chemo, but is there such a thing? I will look at the Nickerson article and send it to her oncologist, Dr. Hawkins. We would like to see if we could get either ARQ or XL880 because the side effect profiles seem much easier.
I should say, though it may be hard to follow size as a marker of activity because of the fluctuations that we've seen in her primary. It really does swell and contract. On another board, I heard from another ASPS patient from Ireland on Sutent; he hadn't had his primary removed and also noted dramatic fluctuations and heat and redness (like 'K') on Sutent cycles, just like other kidney cancer folks. Actually things looked very good at some point with shrinkage of this guy's lung and brain mets, but he stopped the medication after it seemed he developed a small stroke. I would worry about Sutent with any brain mets.
We will also be looking into the possibility of tyrosine kinase typing as someone said they might be able to help us. Having worked with TKs before in the lab, we know this can be tricky, but could be helpful if we could really figure out which TKs were active and so know better drugs to choose. We also have to confront the possibility that the primary won't tell us much as the mets, though. It's possible that typing the met may be more important information, but I guess lung surgery might also be on our horizon.
This is heart breaking because she is just the sweetest kid. When I came home all numb and overwhelmed, she went and did the dishes for me to cheer me up.
Olga, I know you help manage this board. If you think some of these 'K' posts are better under Personal, just move them. It started out under one category, suddenly seemed to be under every category.
Sorry for the ramble. We do appreciate your prayers and are praying for everyone on this forum.
In the end we were frustrated by the particular surgeon we happened to get at DF. He was relatively new with no surgical oncology training (his background was in trauma). After we got the second opinion, he told us by way of John Goldberg that maybe it was true the tumor could come out without an exenteration after all.
The crazy thing is that her primary really is palpable and it has continued to get mushy on Sutent. I want to see the path because it seems as if it necrotic and I wonder if what we're seeing is a burst of metastatic growth because of death of the primary. I don't know whether that can help us any, but I'm just trying to figure out why this happened. Why the sudden growth in lung mets for such an indolent tumor? Doesn't this seem fast? And why when the primary seems to be getting necrotic? Pretty scary.
I have read that once the primary is out, it could be possible to substitute for the primary's inhibition by adding more anti-angiogenesis, but it is hard to be enthusiastic about just more sutent if the mets are growing while she is on it. She may be on a lowish dose, though, and apparently there's a feeling that continuous dosing may be more effective in kids than the 4 wks on / 2 wks off. I'm just thinking aloud.
The mets are difficult because they are located bilaterally, really all over. Of the three that were present at the beginning, 1 stayed the same size, the other two grew - now 4 and 5 mm, used to be 2 and 3. The new ones are 1-2 mm but scattered throughout. A total of 8. Some are quite peripheral and I would think accessible by cryo or radio, but there's a scary one near her heart. What she needs is effective chemo, but is there such a thing? I will look at the Nickerson article and send it to her oncologist, Dr. Hawkins. We would like to see if we could get either ARQ or XL880 because the side effect profiles seem much easier.
I should say, though it may be hard to follow size as a marker of activity because of the fluctuations that we've seen in her primary. It really does swell and contract. On another board, I heard from another ASPS patient from Ireland on Sutent; he hadn't had his primary removed and also noted dramatic fluctuations and heat and redness (like 'K') on Sutent cycles, just like other kidney cancer folks. Actually things looked very good at some point with shrinkage of this guy's lung and brain mets, but he stopped the medication after it seemed he developed a small stroke. I would worry about Sutent with any brain mets.
We will also be looking into the possibility of tyrosine kinase typing as someone said they might be able to help us. Having worked with TKs before in the lab, we know this can be tricky, but could be helpful if we could really figure out which TKs were active and so know better drugs to choose. We also have to confront the possibility that the primary won't tell us much as the mets, though. It's possible that typing the met may be more important information, but I guess lung surgery might also be on our horizon.
This is heart breaking because she is just the sweetest kid. When I came home all numb and overwhelmed, she went and did the dishes for me to cheer me up.
Olga, I know you help manage this board. If you think some of these 'K' posts are better under Personal, just move them. It started out under one category, suddenly seemed to be under every category.
Sorry for the ramble. We do appreciate your prayers and are praying for everyone on this forum.
The resposne to the angiogenetic inhibitors can be different in the primary and mets and it even depends on the mets location - I have a friend with LMS on a Sorafenib so her abdominal mets grew when her lung and other mets are shrunk/stable. It reflects the fact that mets and primary have a different molecular profile, it even different between locations of the mets so the treatment plan for the lung mets condition based on a profile from the primary tissue doesn't look reasonable, you are right.
The man from the other conference with the ASPS - did you tell him about us having a board here?
The lung metastasis pattern - the progression looks very much the same as Ivan's was, we started from a few and in a matter of a 6 month progressed to more then visible 20. I was thinking about removal of the primary having to do with the sudden surfacing of the lung mets a few month after but there is nothing what can be done with this, from the literature I saw that endostatin was tried at some point to substitute the endogenous one to keep the mets from the growing but it didn't work.
I changed the name of the thread to link them two together so whoever is reading it can read the first thread first and then proceed with the second to see how did it go. I can not copy the post to the personal updates as I can not move posts only topics as a whole so you might add some short info to the personal updates under 'K''s name. If you want I can change the name of the topic back.
The man from the other conference with the ASPS - did you tell him about us having a board here?
The lung metastasis pattern - the progression looks very much the same as Ivan's was, we started from a few and in a matter of a 6 month progressed to more then visible 20. I was thinking about removal of the primary having to do with the sudden surfacing of the lung mets a few month after but there is nothing what can be done with this, from the literature I saw that endostatin was tried at some point to substitute the endogenous one to keep the mets from the growing but it didn't work.
I changed the name of the thread to link them two together so whoever is reading it can read the first thread first and then proceed with the second to see how did it go. I can not copy the post to the personal updates as I can not move posts only topics as a whole so you might add some short info to the personal updates under 'K''s name. If you want I can change the name of the topic back.
Question? Why aren't you considering the GVAX trial at DFCI? I realize that it has not been a total success so far. But, Anthony hasn't had any growth for two years and he has "imnumerable" mets in his lungs. The side effects for Anthony have been practically nil.
Scott
PS Ramble all you want, we know the feeling, and do it our selves. It is overwhelming sometimes trying to decide what is the right thing to do. But, as I was told there is no wrong decision in treatment since that would imply someone knows the right decision. Even the experts don't know what the right decision is. One day at a time.
Scott
PS Ramble all you want, we know the feeling, and do it our selves. It is overwhelming sometimes trying to decide what is the right thing to do. But, as I was told there is no wrong decision in treatment since that would imply someone knows the right decision. Even the experts don't know what the right decision is. One day at a time.
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Fictional
We hadn't totally eliminated the possibility, but the reasons it's lower on the list:
1. Unhappy with the surgeon chosen for us. Weldon was only a year or so out of his residency and yet our doc, Dr Goldberg politely refused our request for another surgeon. At different times, Weldon mentioned 3 different plans for surgery with no clear reasons why his plans should change so much. Pelvic surgery is a complicated business and it was unclear he had expertise in this area. His earliest opinion mentioned removal of all pelvic structures (colon, bladder, etc.) despite the risk the disease had spread already. He has no specific experience in sarcoma and never did a surgical oncology fellowship. His training was in trauma. Because of 'K''s age, we only were allowed to use pediatric docs (this is not the case everywhere - UCLA the sarcoma surgeons can see adults and kids).
2. Dr. John G seemed like a very nice and competent doc, but he did not mention GVAX much to us, and in fact he was the one who first mentioned Sutent as a first thing to try.
3. Only the path will tell, but I think Sutent has caused necrosis of 'K''s primary. It is now flat and mushy, not firm. This would not make for good vaccine material anyway, I think. The latest MRI by my eye has continued to show breakdown in the internal structure of 'K''s primary, so I think the necrosis continues. Her local symptoms also improved on Sutent because there was less pulling and stretching. It may be that Sutent + surgery is good enough for the primary, but we need something else for the lung mets.
4. Boston is relatively harder for us to go to as we live in Washington state. California is much easier for us to travel to and we have friends and family support there, too.
I also think there may be more East coast people on this ASPS forum than West coast. This morning I was a little surprised to discover some promising results in a perfosine study involving ASPS at MD Anderson. I would have thought to hear about everything here first because Olga is so active in the sarcoma communities...but maybe many ASPS pts (more West than East?) don't look for more info on the internet. I will add in the link under Perifosine / Other Trials. Apparently over half showed a clinical benefit with perifosine - and its side effect profile was fairly good.
1. Unhappy with the surgeon chosen for us. Weldon was only a year or so out of his residency and yet our doc, Dr Goldberg politely refused our request for another surgeon. At different times, Weldon mentioned 3 different plans for surgery with no clear reasons why his plans should change so much. Pelvic surgery is a complicated business and it was unclear he had expertise in this area. His earliest opinion mentioned removal of all pelvic structures (colon, bladder, etc.) despite the risk the disease had spread already. He has no specific experience in sarcoma and never did a surgical oncology fellowship. His training was in trauma. Because of 'K''s age, we only were allowed to use pediatric docs (this is not the case everywhere - UCLA the sarcoma surgeons can see adults and kids).
2. Dr. John G seemed like a very nice and competent doc, but he did not mention GVAX much to us, and in fact he was the one who first mentioned Sutent as a first thing to try.
3. Only the path will tell, but I think Sutent has caused necrosis of 'K''s primary. It is now flat and mushy, not firm. This would not make for good vaccine material anyway, I think. The latest MRI by my eye has continued to show breakdown in the internal structure of 'K''s primary, so I think the necrosis continues. Her local symptoms also improved on Sutent because there was less pulling and stretching. It may be that Sutent + surgery is good enough for the primary, but we need something else for the lung mets.
4. Boston is relatively harder for us to go to as we live in Washington state. California is much easier for us to travel to and we have friends and family support there, too.
I also think there may be more East coast people on this ASPS forum than West coast. This morning I was a little surprised to discover some promising results in a perfosine study involving ASPS at MD Anderson. I would have thought to hear about everything here first because Olga is so active in the sarcoma communities...but maybe many ASPS pts (more West than East?) don't look for more info on the internet. I will add in the link under Perifosine / Other Trials. Apparently over half showed a clinical benefit with perifosine - and its side effect profile was fairly good.