After we finish our second cycle of Sutent and have scans, I will post what we find whether positive or negative in case it might help you or somebody else.
I do wonder whether Sutent should be more often considered in ASPS. Based on what I've read, vascular factors like VEGF are also thought to play a role in suppressing the immune system in the vicinity of the tumor (to allow it to escape detection). The most immune responsive cancer I've heard is renal cell CA, and for that - Sutent seems to be one of the most popular chemo agents. And yet so much of what we know about ASPS also suggests the immune system is involved, too.
In kidney cancer pts with Sutent, many show an initial response - and then seem to stop responding after months. Interestingly though, for some who developed stable disease on the medication who opted to continue it - found after many cycles of stability (> 1 year), there was another wave of dramatic tumor shrinkage. one patient I know even was deemed a complete response by the 16th or 17th cycle.
The dilemma with GVAX is that there aren't necessarily many cells - so recurrent injections can't be given forever. I read somewhere (maybe here?: http://www.isbtc.org/news/MS06_manuscript.pdf) where some were considering combining immunotherapy approaches with anti-angiogenesis inhibitors.
I used to only think of the downside of the location of our daughter's tumor, but because part of it can be seen and touched, we do have a crude idea of what goes on, and it seems like she is having some inflammatory reaction now on her first drug holiday (4 weeks on, 2 weeks off). I am hoping that is good - I would think if she were a complete non-responder we wouldn't see much of anything change in the tumor.
I am also wondering if the doctors can't be a little more creative about figuring out whether a larger size is due to inflammation or expanding cancer...especially if they are planning resective surgery or if it will impact on what therapeutic step they take. Can't they tag white blood cells or something? (like they do to find an abscess) - or can't the radiologists sort this out better?
'K' experience on Sutent
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Fictional
Quick update as we are just cleared to start our second cycle of Sutent. We did experience quite a florid "off" response on our drug holiday like Miya seemed to experience.
Quick unofficial summary of our observation (because we can the tip of her tumor)
First onset of Sutent action seem quick - day 5 started seeing some shrinkage in the tumor - at the same time wbc count seemed to dip. At it's peak, it looked like the lump we could see had shrunk by about 1/2. Plateau in response (or so it seemed by the 3rd week on Sutent), but easy to complete 4th week because of few symptoms.
Day 3 or so of drug holiday (2 weeks in between), a little shocked about dramatic increase of symptoms around tumor - more generalized swelling (more than what we started out with before treatment), redness, lots of itchiness, periodic pains, vein distention, and slight warmth. A bit scary when doesn't know what to expect.
The generalized "inflammatory reaction" peaked within a few days, and now significantly decreased as we finish our 2nd week on Sutent. Our net "lump" size is still less than what we started with at the very beginning - the tumor appears flatter and rather than round lump, it is a flatter oval. But there still seems to be some subsiding inflammatory process. Blood draw drawn at "end of holiday" found some persistent mild neutropenia (just skirting the normal values, 3.5 wbc, ANC 1800) and drop in platelets (180K), and shifted differential to more lymphocytes (50%). It makes me wonder now if some of the initial dramatic drops in size initially may not have all been to tumor cell death, but some effects on the vascular supply to the lump. Hopefully, we are still headed in the right direction.
Our doc (Hawkins) was impressed at what seemed to be the "local reaction" around the site of the primary although we are taking a systemic drug. We plan MRI and PET at the end of this second cycle - and I think our new plan is if either show some promising change, we may defer surgery (because may have to require colostomy, urostomy, etc) and stay on, appeal for insurance, etc if need be.
It's also possible that recurrent Sutent cycles may also have the positive benefit of inducing recurrent immune responses against the tumor cells as cells die. I was encouraged on reading more the course of one of the long remissions with Sutent on a kidney cancer list. He initially had a response to Sutent within a few months, and then what appeared to be "no change" in the tumors for what seemed to be almost a year, then he experienced a sudden response in all of his tumors (metastatic disease) so that he is now considered "free of disease". Nothing had changed with dosing (same 4 week on / 2 week off) - but it was thought maybe the body finally mounted a successful immune attack against his cells. Maybe this is also encouraging for those of us who have had no clear shrinkage on treatment, but stable disease.
Quick unofficial summary of our observation (because we can the tip of her tumor)
First onset of Sutent action seem quick - day 5 started seeing some shrinkage in the tumor - at the same time wbc count seemed to dip. At it's peak, it looked like the lump we could see had shrunk by about 1/2. Plateau in response (or so it seemed by the 3rd week on Sutent), but easy to complete 4th week because of few symptoms.
Day 3 or so of drug holiday (2 weeks in between), a little shocked about dramatic increase of symptoms around tumor - more generalized swelling (more than what we started out with before treatment), redness, lots of itchiness, periodic pains, vein distention, and slight warmth. A bit scary when doesn't know what to expect.
The generalized "inflammatory reaction" peaked within a few days, and now significantly decreased as we finish our 2nd week on Sutent. Our net "lump" size is still less than what we started with at the very beginning - the tumor appears flatter and rather than round lump, it is a flatter oval. But there still seems to be some subsiding inflammatory process. Blood draw drawn at "end of holiday" found some persistent mild neutropenia (just skirting the normal values, 3.5 wbc, ANC 1800) and drop in platelets (180K), and shifted differential to more lymphocytes (50%). It makes me wonder now if some of the initial dramatic drops in size initially may not have all been to tumor cell death, but some effects on the vascular supply to the lump. Hopefully, we are still headed in the right direction.
Our doc (Hawkins) was impressed at what seemed to be the "local reaction" around the site of the primary although we are taking a systemic drug. We plan MRI and PET at the end of this second cycle - and I think our new plan is if either show some promising change, we may defer surgery (because may have to require colostomy, urostomy, etc) and stay on, appeal for insurance, etc if need be.
It's also possible that recurrent Sutent cycles may also have the positive benefit of inducing recurrent immune responses against the tumor cells as cells die. I was encouraged on reading more the course of one of the long remissions with Sutent on a kidney cancer list. He initially had a response to Sutent within a few months, and then what appeared to be "no change" in the tumors for what seemed to be almost a year, then he experienced a sudden response in all of his tumors (metastatic disease) so that he is now considered "free of disease". Nothing had changed with dosing (same 4 week on / 2 week off) - but it was thought maybe the body finally mounted a successful immune attack against his cells. Maybe this is also encouraging for those of us who have had no clear shrinkage on treatment, but stable disease.
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Fictional
We finished 2 courses of Sutent (4 weeks on / 2 weeks off) and 'K' has done well through it all. She is going to school and gets her blood drawn every 2 weeks.
The Chest CT shows no change (and in fact couldn't see one ditzel that they had seen before; she has no definite lung involvement) and MRI was read as no definite size change, although by my eye (I'm a neurologist, not an oncologist), I thought I could see T1 and T2 changes in the post-Sutent scans, and it looked as though there may be some collapse, but I agree the total volume may be about the same. I'll try to attach a picture below.
If Sutent is having a beneficial effect, some researchers have noted a central darkening on T1 tumor images. Do you see it? I think I see something, although it may be subtle and it wasn't noted by our Seattle radiologist (I'm sending him this picture and see what he thinks).
The PET showed little change, unfortunately. They picked a new ROI in the same location and said the pre-treatment scan SUVmax was 2.6, and post-Sutent x 2 scan was 2.5, too little of a drop to say a definite effect. Everything is murky. It is good to have a low SUVmax (lower baseline tumor activity), but on the downside, it could make it harder to follow the SUVmax for an effect. On one Dana Farber GIST sarcoma study, a successful response to chemo was noted as a drop in the SUVmax to 2.5.
The Chest CT shows no change (and in fact couldn't see one ditzel that they had seen before; she has no definite lung involvement) and MRI was read as no definite size change, although by my eye (I'm a neurologist, not an oncologist), I thought I could see T1 and T2 changes in the post-Sutent scans, and it looked as though there may be some collapse, but I agree the total volume may be about the same. I'll try to attach a picture below.
If Sutent is having a beneficial effect, some researchers have noted a central darkening on T1 tumor images. Do you see it? I think I see something, although it may be subtle and it wasn't noted by our Seattle radiologist (I'm sending him this picture and see what he thinks).
The PET showed little change, unfortunately. They picked a new ROI in the same location and said the pre-treatment scan SUVmax was 2.6, and post-Sutent x 2 scan was 2.5, too little of a drop to say a definite effect. Everything is murky. It is good to have a low SUVmax (lower baseline tumor activity), but on the downside, it could make it harder to follow the SUVmax for an effect. On one Dana Farber GIST sarcoma study, a successful response to chemo was noted as a drop in the SUVmax to 2.5.
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Fictional
Just spoke to the radiologist after having given him both an ASPS radiographic paper and the recent Nature paper on Sutent. He does see that there is more heterogenous signal within the tumor on T1 and increased signal with T2. He believes this could be due to early necrosis. Because the SUV remains low, we anticipate continuing with Sutent.
Pelvic resections are laden with many problems - high rates of recurrence and high morbidity (injury to neighboring important tissues). We have also heard that repeated surgical procedures may increase the likelihood of more aggressive recurrences. I don't know whether this applies more to non-ASPS sarcomas.
At least when I spoke to Dr. Goldberg, it seemed as though DF only advised surgical resection when vital structures were endangered. This was different from the conclusions of the recent review that suggested aggressive metastectomy might be the way to go. Because of the size of 'K''s primary, we had resigned ourselves to surgical resection. I think we will see how things go, though and use her scans and SUVmax to prompt our timing to help decide our steps. If Sutent can kill cells periodically, we may also hope that she could be immunizing herself against the tumor over time.
Pelvic resections are laden with many problems - high rates of recurrence and high morbidity (injury to neighboring important tissues). We have also heard that repeated surgical procedures may increase the likelihood of more aggressive recurrences. I don't know whether this applies more to non-ASPS sarcomas.
At least when I spoke to Dr. Goldberg, it seemed as though DF only advised surgical resection when vital structures were endangered. This was different from the conclusions of the recent review that suggested aggressive metastectomy might be the way to go. Because of the size of 'K''s primary, we had resigned ourselves to surgical resection. I think we will see how things go, though and use her scans and SUVmax to prompt our timing to help decide our steps. If Sutent can kill cells periodically, we may also hope that she could be immunizing herself against the tumor over time.
resection versus observation
There is a tactical advantage to have it resected as soon as possible as in case there are other distant mets found as the times goes the unresected primary will most probably preclude 'K' from having distant mets resected, with primary still intact you have a very limited choice there. With ASPS ability to disseminate it is very important to stay ahead of its popping up here and there. May be you would get a consult. from Dr.Littrup reg. cryoablation to shrink the tumor prior the resection or from Dana Farber radiology reg. proton radiation therapy with the same goal. ASPS was reported to be responsive to the proton irradiation.
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Fictional
reg. cryo and proton radiation therapy
'F' - there are no articles published about the cry treatment for the ASPS primaries and soft tissue metastases only personal experiences of the ASPS patients.
Cryo:
Dr.Littrup is a well known interventional radiologist specializing in cryoablation and he has a very broad experience with the ASPS ablation as we have been sending people to see him when mets were unresectable from the former web-site. He has done a cryo to the people who are currently here on the board and you do not need to speak to the oncologist reg. this option but just get a copy of the scan on the CD and contact Dr.Littrup, tell him about the case and ask him to evaluate if he can do it - he usually tells to send a disk to him, do not forget to tell him the age of the patient as it may be a limitation of some kind. If he finds the case feasible then he will speak to the oncologist etc.
Proton:
There was a case ASPS treated by the proton therapy and descr. on this board recently when pediatric patient had to fly from Germany to Boston. May be they had more cases as after they contacted a radiologist on the proton unit he was confident that it is a right type of radiation for ASPS. The place is http://www.massgeneral.org/cancer/about ... on/faq.asp
but there is no proton treatment facility in Seattle, right? It is in the plans now.
Find this article as may be it will clarify the issue:
Lee CT, Bilton SD, Famiglietti RM, Riley BA, Mahajan A, Chang EL, Maor MH, Woo SY, Cox JD, Smith AR: Treatment planning with protons for pediatric retinoblastoma, Medulloblastoma, and pelvic sarcoma: how do protons compare with other conformal techniques? Int J Radiat Oncol Biol Phys 63:362-372, 2005.
Cryo:
Dr.Littrup is a well known interventional radiologist specializing in cryoablation and he has a very broad experience with the ASPS ablation as we have been sending people to see him when mets were unresectable from the former web-site. He has done a cryo to the people who are currently here on the board and you do not need to speak to the oncologist reg. this option but just get a copy of the scan on the CD and contact Dr.Littrup, tell him about the case and ask him to evaluate if he can do it - he usually tells to send a disk to him, do not forget to tell him the age of the patient as it may be a limitation of some kind. If he finds the case feasible then he will speak to the oncologist etc.
Proton:
There was a case ASPS treated by the proton therapy and descr. on this board recently when pediatric patient had to fly from Germany to Boston. May be they had more cases as after they contacted a radiologist on the proton unit he was confident that it is a right type of radiation for ASPS. The place is http://www.massgeneral.org/cancer/about ... on/faq.asp
but there is no proton treatment facility in Seattle, right? It is in the plans now.
Find this article as may be it will clarify the issue:
Lee CT, Bilton SD, Famiglietti RM, Riley BA, Mahajan A, Chang EL, Maor MH, Woo SY, Cox JD, Smith AR: Treatment planning with protons for pediatric retinoblastoma, Medulloblastoma, and pelvic sarcoma: how do protons compare with other conformal techniques? Int J Radiat Oncol Biol Phys 63:362-372, 2005.
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Fictional
Thanks Olga. More to look into. Yes, they are planning a Proton up in Seattle. But there are closer ones to us in California.
We also have to consider how different modalities will mix with the Sutent, but it is still early to know. There is some idea that anti-angiogenesis inhibitors boos the effect of radiation, but it can increase hemorrhage as well.
We also have to consider how different modalities will mix with the Sutent, but it is still early to know. There is some idea that anti-angiogenesis inhibitors boos the effect of radiation, but it can increase hemorrhage as well.
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Fictional
'K'/Sutent (part 2)-primary responses lung mets progress
I wanted to let you know that it looks with our more recent scan that we have seen at least partial response to Sutent.
Our current situation is that we have a large pelvic primary and no definite metastatic disease (following 2-3 tiny lung spots). We were initially told the primary was too large to resect without also removing vital structures (Dana Farber). After 2 courses of Sutent (4 wks on / 2 wks off), we got a second opinion at UCLA and surgeons there said an extensive pelvic resection wasn't necessary, and DF surgeon also said the tumor "moved away" enough from vital structures, he revised his impression more in line with UCLA. After 2 cycles, there were only mild MRI changes and it was thought we could be seeing some mild necrosis of the tumor. As a result we did one more cycle and this time did it with contrast, and it looks like we are seeing central necrotic changes similar to the pattern seen in Sutent responders in metastatic renal cancer, hepatic CA, and others.
I'm posting this in the possibility it may help others. Other basic stats in our situation: 10 year old, no prior chemo or radiation. SUV was too low to follow (2.3-2.5).
Because Sutent is such a new drug, be aware of the fact that it can be difficult determining radiographically that there has been a response. Some tumors can necrose entirely, while others (like ours) are central. The central ones potentially have a rim of active cancer cells that can regrow and eventually result in Sutent resistance. There have been some believed complete responses, though too, and of course no one knows how helpful it would be in ASPS. Central necrosis of tumors can result in prolonged stability and increased survival; also we know there are many trials planned combining Sutent with other treatments.
We are grateful that we have seen some response, but now that the surgeons think the primary may be completely resectable, we are mulling over with everyone whether we should just have the operation now, and possibly consider Sutent post-operatively as possible palliation.
In the event this may help, I'm going to try and post contrast images of the tumor in June vs. now (Nov). Contrast won't make necrotic tissue bright, and that is what we think we see with the "blackening" of the tumor on the right. It also looks as if there are fewer feeding vessels and this may also make the surgery easier we hope. The little rings may be residual intact endothelial cells. The overall size is not much different, but it's possible a few more courses might cause more collapse, but I'm not sure we'll do them.
Yossi let me know if you don't want me to post the images. I stored them on our server. For those who understand MRI, we saw no change on T1, but the most with T1 fat sat + c and STIR. Sutent 37.5 mg QD.
Our current situation is that we have a large pelvic primary and no definite metastatic disease (following 2-3 tiny lung spots). We were initially told the primary was too large to resect without also removing vital structures (Dana Farber). After 2 courses of Sutent (4 wks on / 2 wks off), we got a second opinion at UCLA and surgeons there said an extensive pelvic resection wasn't necessary, and DF surgeon also said the tumor "moved away" enough from vital structures, he revised his impression more in line with UCLA. After 2 cycles, there were only mild MRI changes and it was thought we could be seeing some mild necrosis of the tumor. As a result we did one more cycle and this time did it with contrast, and it looks like we are seeing central necrotic changes similar to the pattern seen in Sutent responders in metastatic renal cancer, hepatic CA, and others.
I'm posting this in the possibility it may help others. Other basic stats in our situation: 10 year old, no prior chemo or radiation. SUV was too low to follow (2.3-2.5).
Because Sutent is such a new drug, be aware of the fact that it can be difficult determining radiographically that there has been a response. Some tumors can necrose entirely, while others (like ours) are central. The central ones potentially have a rim of active cancer cells that can regrow and eventually result in Sutent resistance. There have been some believed complete responses, though too, and of course no one knows how helpful it would be in ASPS. Central necrosis of tumors can result in prolonged stability and increased survival; also we know there are many trials planned combining Sutent with other treatments.
We are grateful that we have seen some response, but now that the surgeons think the primary may be completely resectable, we are mulling over with everyone whether we should just have the operation now, and possibly consider Sutent post-operatively as possible palliation.
In the event this may help, I'm going to try and post contrast images of the tumor in June vs. now (Nov). Contrast won't make necrotic tissue bright, and that is what we think we see with the "blackening" of the tumor on the right. It also looks as if there are fewer feeding vessels and this may also make the surgery easier we hope. The little rings may be residual intact endothelial cells. The overall size is not much different, but it's possible a few more courses might cause more collapse, but I'm not sure we'll do them.
Yossi let me know if you don't want me to post the images. I stored them on our server. For those who understand MRI, we saw no change on T1, but the most with T1 fat sat + c and STIR. Sutent 37.5 mg QD.
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Dear 'F',
Thank you for your very conscientious and informative updates. It is very encouraging to hear that the Sutent appears to be working to help shrink the primary tumor, and we will be anxiously awaiting your next update. Have the few spots in her lungs remained stable in size and number? Has she experienced any negative side effects from her Sutent treatment? Is she having complete body scans including lung, abdominal, and pelvic CT's, bone scans, and brain MRI's, and when are her next scans scheduled? I will be holding your precious daughter and all of your family very close in my special thoughts and prayers, and will be holding tight to Hope for continued good news and shrinkage of the tumor.
With special caring thoughts and continued Hope,
Bonni Hess
Thank you for your very conscientious and informative updates. It is very encouraging to hear that the Sutent appears to be working to help shrink the primary tumor, and we will be anxiously awaiting your next update. Have the few spots in her lungs remained stable in size and number? Has she experienced any negative side effects from her Sutent treatment? Is she having complete body scans including lung, abdominal, and pelvic CT's, bone scans, and brain MRI's, and when are her next scans scheduled? I will be holding your precious daughter and all of your family very close in my special thoughts and prayers, and will be holding tight to Hope for continued good news and shrinkage of the tumor.
With special caring thoughts and continued Hope,
Bonni Hess
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Fictional
Hi Bonnie,
Her other scans have been negative, and in fact on her last repeat chest CT, they only saw 2 pinpoint nodules instead of the original 3. The third ditzel may be there still, but just missed it depending on where the scan was taken. I know sometimes this little nodules can disappear on their own. The important thing is that they don't grow. We'll see the next time round. We are also very early in this as our original diagnosis was only 4 months ago.
We are still waiting to talk over the timing of surgery. And I think there's so little data, now or a few months from now might be the same. We are leaning toward 3 weeks from now, but that could change after we talk to the docs some more. If so, the path report will be useful information and of course I would share it with this group. When we palpate the tumor, it has gotten mushy in parts, so that would also support some necrosis in the tumor.
Re: side effects, the hardest cycles were the first 2. She would have episodes of pain in the tumor (never before she started treatment), and we would notice it swell, then subside over the course of a few days. It really looked like an inflammatory attack. During the attack, there was sleepiness and joint pains. She also has had periods where her skin turns yellowish (she doesn't notice, normal liver function), then goes back to normal, and we have had to dye her hair with a gentle coloring agent because she was turning very blond (like albino)! Fortunately these changes aren't permanent.
She has missed some days of school, but more tardies (sleeping in) than absences, and managed to get all A's except for two B+'s this semester. She's also been golfing (but prefers a cart to walking) and seems to have a normal activity level at home - just a harder time with hot weather and when the inflammatory spells occur. The third cycle was really mild, so I don't know if most of the cells were killed off in the first 2.
'K' has also had blood changes that could be consistent with some inflammatory attack on the tumor. The most striking change has been a higher than normal increase in the percentage of lymphocytes and monocytes, and mild drop in platelets. This pattern was found to be predictive of "Sutent-responders" in one study I think from Michigan in renal cancer. Let me know if you want the links/refs. I would have to look for it again. If this pattern of blood cell changes were seen, then time to progression was 17 months vs. 3 months by radiographic imaging for the two kidney cancer groups. Kidney cancer is a more rapidly progressive disease than ASPS, though.
I did see that Sutent has had some complete responses in renal CA, including a situation which had brain mets.
The dangers I have heard about are unexpected bleeding and possibly more complications in previously irradiated areas. Side effects can occur, but many people have noticed a reduction in dose still has benefits with fewer side effects.
I guess one of the reasons I like the idea of Sutent in ASPS is because it seems to have a significant inflammatory component, but better tolerated than IL2. The long potential metastatic course of Sutent always suggested to me that the immune system is important for eliminating nests of tumor cells.
Her other scans have been negative, and in fact on her last repeat chest CT, they only saw 2 pinpoint nodules instead of the original 3. The third ditzel may be there still, but just missed it depending on where the scan was taken. I know sometimes this little nodules can disappear on their own. The important thing is that they don't grow. We'll see the next time round. We are also very early in this as our original diagnosis was only 4 months ago.
We are still waiting to talk over the timing of surgery. And I think there's so little data, now or a few months from now might be the same. We are leaning toward 3 weeks from now, but that could change after we talk to the docs some more. If so, the path report will be useful information and of course I would share it with this group. When we palpate the tumor, it has gotten mushy in parts, so that would also support some necrosis in the tumor.
Re: side effects, the hardest cycles were the first 2. She would have episodes of pain in the tumor (never before she started treatment), and we would notice it swell, then subside over the course of a few days. It really looked like an inflammatory attack. During the attack, there was sleepiness and joint pains. She also has had periods where her skin turns yellowish (she doesn't notice, normal liver function), then goes back to normal, and we have had to dye her hair with a gentle coloring agent because she was turning very blond (like albino)! Fortunately these changes aren't permanent.
She has missed some days of school, but more tardies (sleeping in) than absences, and managed to get all A's except for two B+'s this semester. She's also been golfing (but prefers a cart to walking) and seems to have a normal activity level at home - just a harder time with hot weather and when the inflammatory spells occur. The third cycle was really mild, so I don't know if most of the cells were killed off in the first 2.
'K' has also had blood changes that could be consistent with some inflammatory attack on the tumor. The most striking change has been a higher than normal increase in the percentage of lymphocytes and monocytes, and mild drop in platelets. This pattern was found to be predictive of "Sutent-responders" in one study I think from Michigan in renal cancer. Let me know if you want the links/refs. I would have to look for it again. If this pattern of blood cell changes were seen, then time to progression was 17 months vs. 3 months by radiographic imaging for the two kidney cancer groups. Kidney cancer is a more rapidly progressive disease than ASPS, though.
I did see that Sutent has had some complete responses in renal CA, including a situation which had brain mets.
The dangers I have heard about are unexpected bleeding and possibly more complications in previously irradiated areas. Side effects can occur, but many people have noticed a reduction in dose still has benefits with fewer side effects.
I guess one of the reasons I like the idea of Sutent in ASPS is because it seems to have a significant inflammatory component, but better tolerated than IL2. The long potential metastatic course of Sutent always suggested to me that the immune system is important for eliminating nests of tumor cells.
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Dear 'F',
Thank you for your very thorough and infomative answers to my questions. I am grateful that dear 'K' has been able to continue with her school and golf activities with only a few limiting side effects from her Sutent treatment. She is really an amazing little girl to be able to maintain her good school attendance and very impressive high grades in the face of all that she has been so courageously experiencing and enduring in her young Life these past four months since her heartbreaking diagnosis. In my research about Sutent I read that a possible side effect of the drug can be the development of an underactive thyroid. Has this been an issue for dear 'K', and are regular tests being done to test for this? This condition could certainly attribute for her fatigue, but underactive thyroid is apparently easily treatable with levothyroxine. Thank you again for your faithful updates and invaluable information sharing. Dear 'K' and all of your family will be in my continued most caring thoughts and special prayers.
With special caring and continued Hope,
Bonni
Thank you for your very thorough and infomative answers to my questions. I am grateful that dear 'K' has been able to continue with her school and golf activities with only a few limiting side effects from her Sutent treatment. She is really an amazing little girl to be able to maintain her good school attendance and very impressive high grades in the face of all that she has been so courageously experiencing and enduring in her young Life these past four months since her heartbreaking diagnosis. In my research about Sutent I read that a possible side effect of the drug can be the development of an underactive thyroid. Has this been an issue for dear 'K', and are regular tests being done to test for this? This condition could certainly attribute for her fatigue, but underactive thyroid is apparently easily treatable with levothyroxine. Thank you again for your faithful updates and invaluable information sharing. Dear 'K' and all of your family will be in my continued most caring thoughts and special prayers.
With special caring and continued Hope,
Bonni
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Fictional
Yes, that is a good thought, Bonnie. In the last week of her second cycle, she had quite significant fatigue and other symptoms that suggested she may be getting hypothyroid. She was getting dry skin, too. When I tried to wake her up in the morning, she seemed so determined to sleep that I thought I knew something had changed. I got an ice cube and put it on her foot (kind of as a joke) and she got to laughing and woke up and went to school on time, but then her teacher called to tell me she had fallen asleep during her math problem set! We took her home and she felt better after a catnap. That day I managed to add on a TSH to some blood that had just been drawn, but by the next week, she was back to her spunky self again and that was when we saw her doctor. Her blood was redrawn and her TSH was now normal. Her skin dryness seemed to return to normal too.
'K' now has fairly normal activity and was doing most recess and PE activities at school (they let her walk the mile or opt out of anything). She has seemed to have much more energy through this 3rd cycle than the last.
Another thing I know she had checked was an ECHO (one before therapy and another after). All this has been normal. And more of the latest: I heard from her oncologist by email today, and I think he's behind surgery in 3 weeks, anyway. Because it looks as if there is no local invasion, they don't want to miss that window, and we can also continue Sutent for a finite period post-op. We hope to hear from her surgeons this coming week so we know for sure.
Thank you for your prayers. We have been praying for Brittany and your family, and I was delighted to read her latest post.
'F'
'K' now has fairly normal activity and was doing most recess and PE activities at school (they let her walk the mile or opt out of anything). She has seemed to have much more energy through this 3rd cycle than the last.
Another thing I know she had checked was an ECHO (one before therapy and another after). All this has been normal. And more of the latest: I heard from her oncologist by email today, and I think he's behind surgery in 3 weeks, anyway. Because it looks as if there is no local invasion, they don't want to miss that window, and we can also continue Sutent for a finite period post-op. We hope to hear from her surgeons this coming week so we know for sure.
Thank you for your prayers. We have been praying for Brittany and your family, and I was delighted to read her latest post.
'F'
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Fictional
I am sorry to update you that our latest scans today show new lung nodules and increase in size in the 2 that were originally seen.
'K' has completed 4 cycles of Sutent now, with MRI changes in the primary, but clearly residual tumor. Because of the need to coordinate several surgeons, we had gotten the resection of her primary delayed until now Jan 25th. We will have to see whether this latest news will change their plans, but we hope not. The side effects of Sutent had gotten better with each cycle, but we will probably abandon it with the latest lung news.
This means we will have to tackle the question of what to do about the lung nodules afterward. We will continue on Sutent until 21 days prior to surgery, but afterward will think of what we may be able to do - resection, RFA, laser??? Because it seems the rule is that there are more nodules that meet the eye on MRI scan, we are going to try and plumb our friends in biotech to see if there would be any way to get access to promising drugs in the biotech pipeline. The met ones definitely have appeal. She is too young for ARQ, but don't know if there is wiggle room on that. We also want to research into XL880, especially as it has recently been reported to have such an excellent effect with renal papillary CA, a cancer with a similar genetic profile as ASPS.
I don't regret that we didn't do a total pelvic exenteration in July at Dana Farber because two of the nodules that grew were there in June. That means she was metastatic at that point, but we couldn't tell.
'K' has completed 4 cycles of Sutent now, with MRI changes in the primary, but clearly residual tumor. Because of the need to coordinate several surgeons, we had gotten the resection of her primary delayed until now Jan 25th. We will have to see whether this latest news will change their plans, but we hope not. The side effects of Sutent had gotten better with each cycle, but we will probably abandon it with the latest lung news.
This means we will have to tackle the question of what to do about the lung nodules afterward. We will continue on Sutent until 21 days prior to surgery, but afterward will think of what we may be able to do - resection, RFA, laser??? Because it seems the rule is that there are more nodules that meet the eye on MRI scan, we are going to try and plumb our friends in biotech to see if there would be any way to get access to promising drugs in the biotech pipeline. The met ones definitely have appeal. She is too young for ARQ, but don't know if there is wiggle room on that. We also want to research into XL880, especially as it has recently been reported to have such an excellent effect with renal papillary CA, a cancer with a similar genetic profile as ASPS.
I don't regret that we didn't do a total pelvic exenteration in July at Dana Farber because two of the nodules that grew were there in June. That means she was metastatic at that point, but we couldn't tell.
'F' -
I am so sorry to hear that news. Have you looked into the chemotherapy option, there are successful cases of the ASPS really long term survival with the use of the chemotherapy before and after the lung surgery with confirmed treatment induced necrosis (Dr.Nickerson article), also it seems that kids are more chemosensitive. Also it is recognized that angiogenesis inhibitors pretreatment improves the delivery of the chemotherapy or radiation. Dr.Nickerson patient was stage 4 at the presentation and she is well now so there is a hope. And I am 100 % support your decision not to do a total pelvic exenteration, there is no evidence of the bone involvement so less radical methods are appropriate as the first attempt. I am not sure why they didn't suggest to have a proton radiotherapy at Dana Farber to facilitate the resection as this is done there at Children's and ASPS is a proton sensitive tumor.
Olga.
I am so sorry to hear that news. Have you looked into the chemotherapy option, there are successful cases of the ASPS really long term survival with the use of the chemotherapy before and after the lung surgery with confirmed treatment induced necrosis (Dr.Nickerson article), also it seems that kids are more chemosensitive. Also it is recognized that angiogenesis inhibitors pretreatment improves the delivery of the chemotherapy or radiation. Dr.Nickerson patient was stage 4 at the presentation and she is well now so there is a hope. And I am 100 % support your decision not to do a total pelvic exenteration, there is no evidence of the bone involvement so less radical methods are appropriate as the first attempt. I am not sure why they didn't suggest to have a proton radiotherapy at Dana Farber to facilitate the resection as this is done there at Children's and ASPS is a proton sensitive tumor.
Olga.