If he doesn't have brain metastases, get him on Sunitinib or Sutent as soon as possible. It has helped some ASPS with large bulky tumors.
I don't think Cediranib is available to you in Australia.
Usually when tumors grow rapidly after chemotherapy it is due to the revascularization that occurs after chemo. It can be a very dangerous time. Will keep you guys in our prayers.
Mick from Australia - Dx 2005 - RIP 06/05/2012
Re: Mick from Australia, Sheree's husband
Sherree - I posted before re. the Sydney Sarcoma Unit at Royal Prince of Wales hospital in Randwick NSW, is it possible to get him there? The situation needs to be adressed om a few levels at once - some local treatment - some options are cryoablation, radiation, isolated limb chemo-perfusion, it may downsize the tumor and enable its resection, then systemic treatment like 'F' said sunitinib (Sutent is the other name for the same drug) or may be other drugs of the same type avail. on a clinical trial. It looks like it is done at the Department of Surgery, St George Hospital, University of New South Wales, Sydney, NSW, Australia - if it can be done at all, I would try to get there for a consultation.
Olga
-
Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Mick from Australia, Sheree's husband
Dear Sheree,
I am so very sorry about Mick's concerning MRI results, and I strongly agree with 'F' and Olga that it is extremely important to obtain treatment for the femoral mass as soon as possible. Radiofrequency ablation ( RFA) of the tumor may be an option for shrinking/destroying it as it was for our daughter Brittany's tibia tumor, although Mick's tumor may be too large for RFA until it can be shrunk with a systemic treatment like Sutent as both 'F' and Olga suggested. Brittany had RFA for her tibia met in 2005, and thankfully the treatment appears to have been very successful and there has thus far been no reoccurrence of the tumor. I Hope that Pete's oncologist is a sarcoma specialist, and if he/she isn't that you will follow Olga's recommendation to find and go to a sarcoma oncologist because it is critically important to have a doctor who is knowledgeable and experienced with the treatment of sarcoma. My very best wishes and most special thoughts are with Mick and your family, and I will be anxiously awaiting your next update regarding the outcome of your consultation with the oncologist and the treatment recommendations and plans. Take care dear Sheree.
Holding Mick and your family very close in my heart and special thoughts, and reaching out to embrace you with deepest caring and continued Hope,
Bonni
I am so very sorry about Mick's concerning MRI results, and I strongly agree with 'F' and Olga that it is extremely important to obtain treatment for the femoral mass as soon as possible. Radiofrequency ablation ( RFA) of the tumor may be an option for shrinking/destroying it as it was for our daughter Brittany's tibia tumor, although Mick's tumor may be too large for RFA until it can be shrunk with a systemic treatment like Sutent as both 'F' and Olga suggested. Brittany had RFA for her tibia met in 2005, and thankfully the treatment appears to have been very successful and there has thus far been no reoccurrence of the tumor. I Hope that Pete's oncologist is a sarcoma specialist, and if he/she isn't that you will follow Olga's recommendation to find and go to a sarcoma oncologist because it is critically important to have a doctor who is knowledgeable and experienced with the treatment of sarcoma. My very best wishes and most special thoughts are with Mick and your family, and I will be anxiously awaiting your next update regarding the outcome of your consultation with the oncologist and the treatment recommendations and plans. Take care dear Sheree.
Holding Mick and your family very close in my heart and special thoughts, and reaching out to embrace you with deepest caring and continued Hope,
Bonni
Re: Mick from Australia, Sheree's husband
Hi guys well i just giving you and update and i guess looking for some answers.
Well Mick has been told he now has a tumor in the brain. He had to have an MRI and we get the results tomorrow and that will tell us where abouts in the brain it is and if they can operate i think or just getting passed on to a surgen.
I know this isnt good. First his leg then his lungs then his knee and now the brain.... i just dont get it...
Could someone please tell me what this means... Im praying they can remove it but if they open him up willthat be bad....
I know i have to be strong for our kids but now im starting to get really realyy scared of the outcome..
I will let you know what dos say tomorrow but any info not matter how scary please could you leave with me...
Thank you all heaps
Sheree
xx
Well Mick has been told he now has a tumor in the brain. He had to have an MRI and we get the results tomorrow and that will tell us where abouts in the brain it is and if they can operate i think or just getting passed on to a surgen.
I know this isnt good. First his leg then his lungs then his knee and now the brain.... i just dont get it...
Could someone please tell me what this means... Im praying they can remove it but if they open him up willthat be bad....
I know i have to be strong for our kids but now im starting to get really realyy scared of the outcome..
I will let you know what dos say tomorrow but any info not matter how scary please could you leave with me...
Thank you all heaps
Sheree
xx
My husband has ASPS secondries inhis lungs and they are growing after info bout it all
-
Fictional
Re: Mick from Australia, Sheree's husband
Hi Sheree
Mick needs gamma knife to the brain lesion. They need to act quickly. It is a small beam of radiation targeted to the tumor. If it is too big then he may need surgery. These approaches have helped many people. I'm praying for him and you all.
Mick needs gamma knife to the brain lesion. They need to act quickly. It is a small beam of radiation targeted to the tumor. If it is too big then he may need surgery. These approaches have helped many people. I'm praying for him and you all.
-
Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Mick from Australia, Sheree's husband
Dear Sheree,
I am so very sorry about Mick's new diagnosis of a brain met, and my heart breaks for all of the worry and anguish that I know you are both going through right now. As you may already know, Brittany has also had brain mets. She underwent Gamma Knife in October 2004 for the first two brain mets that she was diagnosed with, but unfortunately the mets were already too large to successfully respond to the Gamma Knife treatment so after six very difficult months of suffering with severe headaches and vomiting from the increasing brain tumor swelling and being on severely debilitating high doses of Decadron steroid treatment, she underwent two successful craniotomies to remove the parietal and cerebellum brain tumors. However, as a result of the location of the tumor in the parietal area of her brain which was described to us by her excellent neurosurgeon as being "very expensive real estate", she heartbreakingly lost her peripheral vision, but thankfully she is able to compensate very well despite the vision loss and it does not keep her from continuing her very active Lifestyle. Devastatingly she developed three more brain mets in March 2008, but thankfully they were able to be successfully treated with Gamma Knife because they were diagnosed at a smaller size, so I strongly encourage you to move forward very rapidly and as quickly as possible with scheduling treatment for Mick's brain met. If Mick's tumor is in a resectable area, I feel that surgical removal is the best treatment option because then you can be sure that the tumor is completely gone, but if it is not possible to surgically remove the tumor and the tumor is small enough to successfully respond to the treatment, Gamma Knife is the best option.
When you last updated this Board in May Mick had heartbreakingly been diagnosed with a femoral mass and a possible patellar mass. Did he undergo surgery to remove them or some kind of other treatment to try to shrink and destroy them? Also, did he pursue any kind of systemic treatment such as Sutent or Cediranib? Once the brain tumor has been treated, I strongly advise that he seek and undergo a systemic treatment like Cediranib or Sutent to try to stabilize this aggressive progression of his disease and to prevent the growth of any new tumors. In the meantime, please take care dear Sheree, know that my continued most caring thoughts and very best wishes are with Pete and your family, hold tight to continued Hope, and keep this Board updated as your time and situation allow.
With special hugs, deepest caring, and continued Hope,
Bonni
I am so very sorry about Mick's new diagnosis of a brain met, and my heart breaks for all of the worry and anguish that I know you are both going through right now. As you may already know, Brittany has also had brain mets. She underwent Gamma Knife in October 2004 for the first two brain mets that she was diagnosed with, but unfortunately the mets were already too large to successfully respond to the Gamma Knife treatment so after six very difficult months of suffering with severe headaches and vomiting from the increasing brain tumor swelling and being on severely debilitating high doses of Decadron steroid treatment, she underwent two successful craniotomies to remove the parietal and cerebellum brain tumors. However, as a result of the location of the tumor in the parietal area of her brain which was described to us by her excellent neurosurgeon as being "very expensive real estate", she heartbreakingly lost her peripheral vision, but thankfully she is able to compensate very well despite the vision loss and it does not keep her from continuing her very active Lifestyle. Devastatingly she developed three more brain mets in March 2008, but thankfully they were able to be successfully treated with Gamma Knife because they were diagnosed at a smaller size, so I strongly encourage you to move forward very rapidly and as quickly as possible with scheduling treatment for Mick's brain met. If Mick's tumor is in a resectable area, I feel that surgical removal is the best treatment option because then you can be sure that the tumor is completely gone, but if it is not possible to surgically remove the tumor and the tumor is small enough to successfully respond to the treatment, Gamma Knife is the best option.
When you last updated this Board in May Mick had heartbreakingly been diagnosed with a femoral mass and a possible patellar mass. Did he undergo surgery to remove them or some kind of other treatment to try to shrink and destroy them? Also, did he pursue any kind of systemic treatment such as Sutent or Cediranib? Once the brain tumor has been treated, I strongly advise that he seek and undergo a systemic treatment like Cediranib or Sutent to try to stabilize this aggressive progression of his disease and to prevent the growth of any new tumors. In the meantime, please take care dear Sheree, know that my continued most caring thoughts and very best wishes are with Pete and your family, hold tight to continued Hope, and keep this Board updated as your time and situation allow.
With special hugs, deepest caring, and continued Hope,
Bonni
Re: Mick from Australia, Sheree's husband
Hi all well just an update mick had the stereotactic radiosurgery on the brain in october we find out on the 31st jan results of an mri that he recently had and also he had an ct scan of his chest and abdomin and from the report in that we readit looks like there is a new tumour in between his kidney and spleen and it is about 5cm. I cant really comment on it until we see the doc but i just dont know what to think. For the radiosurgery we went to Dr Smee at The prince of wales hospital in sydney but for the check up we just see our chemo/oncolagy doc at the mater in newcastle so hopefully we will come out with some answers.
I will take with me again the list of drugs that other people seem to be taking and get them to see if they are avaiable over here.
Mick just wanted me to ask weather anyone who has had all these treatments etc do you feel tired all the time, just wanna sleep, feel yuk, cough all the time well heaps anyway but bring nothing up. He wants to go back to work but he doesnt think he will be able to do it. Does anyone else work?
Well ill will update this page when we get some answers on the 31st.
You all take care
Sheree and Mick xx
I will take with me again the list of drugs that other people seem to be taking and get them to see if they are avaiable over here.
Mick just wanted me to ask weather anyone who has had all these treatments etc do you feel tired all the time, just wanna sleep, feel yuk, cough all the time well heaps anyway but bring nothing up. He wants to go back to work but he doesnt think he will be able to do it. Does anyone else work?
Well ill will update this page when we get some answers on the 31st.
You all take care
Sheree and Mick xx
My husband has ASPS secondries inhis lungs and they are growing after info bout it all
-
Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Mick from Australia, Sheree's husband
Dear Sheree,
Thank you for writing to update about Mick. I am grateful that he was able to have his brain met treated with stereotactic radiosurgery. What was the size of the brain met, and did he have Gamma Knife or Cyberknife? I will be holding very tight to Hope that his recent brain MRI will show a successful response to the treatment with shrinkage and necrosis of the treated met. Bear in mind that it sometimes takes awhile to accurately determine if the met is shrinking because there may be some inflammation caused by the radiosurgery itself. I am so deeply sorry that the radiologist report from Mick's most recent chest/abdominal CT seems to indicate that there is a new 5 Cm. tumor between his kidney and spleen. If the suspected tumor is an ASPS met, I don't understand how it went previously undetected and became so large if regular abdominal CT scans were being done. Hopefully the oncologist will be able to provide a good treatment option for the new tumor such as resection, radiofrequency ablation, or cyberknife, and Mick will be able to move forward as quickly as possible to have it removed or treated. Once the abdominal tumor is treated, I do think that it will be important to pursue a systemic treatment to try to stabilize the progression and dissemination of Mick's disease. There are several promising new systemic treatments which you can read about on the Discussion Board, but Cediranib continues to seem to be one of the most promising and effective new drugs for ASPS. Since it is currently only available in Clinical Trial at NIH in Bethesda, Maryland, Mick would need to move/commute to Maryland for his treatment. Sutent has also shown good results in helping to stabilize ASPS, and this should be available by prescription from Mick's oncologist. I completely understand the financial and emotional need for Mick to return to work, but at this time based on his continued disease progression and his debilitating symptoms, it seems that finding and pursuing an effective treatment to stabilize his disease progression needs to be the highest priority. Please know dear Sheree that I am holding Mick, you, and your family very close in my heart and most caring thoughts, and that I will continue to be here for you to try to help in any way that I can with shared information and support. Give Mick my best wishes, take care, and keep the Board updated as you are able.
With deepest caring, speical thoughts, healing wishes for Mick, and continued Hope,
Bonni
Thank you for writing to update about Mick. I am grateful that he was able to have his brain met treated with stereotactic radiosurgery. What was the size of the brain met, and did he have Gamma Knife or Cyberknife? I will be holding very tight to Hope that his recent brain MRI will show a successful response to the treatment with shrinkage and necrosis of the treated met. Bear in mind that it sometimes takes awhile to accurately determine if the met is shrinking because there may be some inflammation caused by the radiosurgery itself. I am so deeply sorry that the radiologist report from Mick's most recent chest/abdominal CT seems to indicate that there is a new 5 Cm. tumor between his kidney and spleen. If the suspected tumor is an ASPS met, I don't understand how it went previously undetected and became so large if regular abdominal CT scans were being done. Hopefully the oncologist will be able to provide a good treatment option for the new tumor such as resection, radiofrequency ablation, or cyberknife, and Mick will be able to move forward as quickly as possible to have it removed or treated. Once the abdominal tumor is treated, I do think that it will be important to pursue a systemic treatment to try to stabilize the progression and dissemination of Mick's disease. There are several promising new systemic treatments which you can read about on the Discussion Board, but Cediranib continues to seem to be one of the most promising and effective new drugs for ASPS. Since it is currently only available in Clinical Trial at NIH in Bethesda, Maryland, Mick would need to move/commute to Maryland for his treatment. Sutent has also shown good results in helping to stabilize ASPS, and this should be available by prescription from Mick's oncologist. I completely understand the financial and emotional need for Mick to return to work, but at this time based on his continued disease progression and his debilitating symptoms, it seems that finding and pursuing an effective treatment to stabilize his disease progression needs to be the highest priority. Please know dear Sheree that I am holding Mick, you, and your family very close in my heart and most caring thoughts, and that I will continue to be here for you to try to help in any way that I can with shared information and support. Give Mick my best wishes, take care, and keep the Board updated as you are able.
With deepest caring, speical thoughts, healing wishes for Mick, and continued Hope,
Bonni
Re: Mick from Australia, Sheree's husband
Well check up was really not worth it in a way. The doctor is trying to get on to some drug company(which we dont know the name) to see if they would give MIck drugs free with out charge or min charge and see if it will work on him. It turns out there is also 3 new small spots on the brain they are only 1mm big but they are still there. Doctor didnt seem to worried as they are only 1mm big. The swelling in one tumor is slighlty bigger but tumors( first 2) havent gotten bigger so thats one good thing. There is also a lump on top of his kidney i cant rememeber what it is called something starting with a and well it is 7cm big and we went back through the scan reports and it has been there for nearly 2 years but no one has ever said anything to us we thought it was the lungs but its the top of the kidney thts why he has had so much back pain. Well the doctor will get back to us in about 3 weeks with info on the trial drug so i guess we will hav to wait again.
Does anyone know of any other doctor in australia who deal with this cancer we have been toWesley and Princess Alexandra in Brisbane that were first diagonise, treated, leg tumor removed then we moved to Newcastle and we seen a doctor at Royal North Shore then he put us to the Mater when lumps got bigger, then Prince of Wales for second opinion (then ended up havin the brain radiation there), RPA for second opinion but all go along with what his doctor says now. I dont doubt the doctor im just hoping there is something that they can give him to make him better after all he is my husband and father of my kids.
Is there anyone on this forum who lives in australia can you contact me and tell me where you go.
Well you all take care now and will jump back on here when i can...
Sheree and Mick
Does anyone know of any other doctor in australia who deal with this cancer we have been toWesley and Princess Alexandra in Brisbane that were first diagonise, treated, leg tumor removed then we moved to Newcastle and we seen a doctor at Royal North Shore then he put us to the Mater when lumps got bigger, then Prince of Wales for second opinion (then ended up havin the brain radiation there), RPA for second opinion but all go along with what his doctor says now. I dont doubt the doctor im just hoping there is something that they can give him to make him better after all he is my husband and father of my kids.
Is there anyone on this forum who lives in australia can you contact me and tell me where you go.
Well you all take care now and will jump back on here when i can...
Sheree and Mick
My husband has ASPS secondries inhis lungs and they are growing after info bout it all
-
Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Mick from Australia, Sheree's husband
Dear Sheree,
I am so deeply sorry about the news of Mick's three new brain mets, and the large "lump" on top of his kidney. Does the doctor think that the "lump" is an ASPS tumor or something else? If it is an ASPS tumor (which I would think that it probably is given the nature of ASPS to metastasize to abdominal organs), and if it is resectable, I think that it needs to be surgically removed, ablated, or treated with radiosurgery like Synergy or Cyberknife immediately, and that you should NOT wait three weeks for the doctor to get back to you about the trial drug. It is inexcusable that this now 7 Cm. "lump" has been there for two years without it having been mentioned in the radiologist reports or by Mick's doctors! I also disagree with the doctor's nonchalant attitude about the three new brain mets. Although they are thankfully currently quite small, ASPS brain mets can grow very rapidly and become too large to surgically remove or successfully treat with radiosurgery, so they need to be surgically removed or Gamma Knifed at the smallest possible size and as soon as possible. I do think that Mick will ultimately need a systemic treatment to try to stabilize the progression of his disease, but I think that the greatest priorties at this time are treatment of the large "lump" on his kidney and his new brain mets. It is important for you to find out from the doctor the name of the trial drug that he is advocating for Mick, because not all chemo drugs are able to cross the blood brain barriar which Mick will need the drug to do with his history of brain mets. Unfortunately, I am not familiar with the doctors in Australia or if there are any sarcoma specialists with ASPS experience, but perhaps Olga will be able to provide you with some information about this important matter. I do know that you need to be very pro-active with the doctors and to be as knowledgeable and well informed as possible. I urge you to contact Mick's doctor to discuss the issues and concerns that I have mentioned, and to tell him that you are unwilling to wait another three weeks for Mick to receive treatment for his kidney and brain lesions. My continued most caring thoughts and best wishes are with Mick and your family, and I will be anxiously awaiting your next update. Take care dear Sheree.
With deepest caring and concern, healing wishes for Mick, and continued Hope,
Bonni
I am so deeply sorry about the news of Mick's three new brain mets, and the large "lump" on top of his kidney. Does the doctor think that the "lump" is an ASPS tumor or something else? If it is an ASPS tumor (which I would think that it probably is given the nature of ASPS to metastasize to abdominal organs), and if it is resectable, I think that it needs to be surgically removed, ablated, or treated with radiosurgery like Synergy or Cyberknife immediately, and that you should NOT wait three weeks for the doctor to get back to you about the trial drug. It is inexcusable that this now 7 Cm. "lump" has been there for two years without it having been mentioned in the radiologist reports or by Mick's doctors! I also disagree with the doctor's nonchalant attitude about the three new brain mets. Although they are thankfully currently quite small, ASPS brain mets can grow very rapidly and become too large to surgically remove or successfully treat with radiosurgery, so they need to be surgically removed or Gamma Knifed at the smallest possible size and as soon as possible. I do think that Mick will ultimately need a systemic treatment to try to stabilize the progression of his disease, but I think that the greatest priorties at this time are treatment of the large "lump" on his kidney and his new brain mets. It is important for you to find out from the doctor the name of the trial drug that he is advocating for Mick, because not all chemo drugs are able to cross the blood brain barriar which Mick will need the drug to do with his history of brain mets. Unfortunately, I am not familiar with the doctors in Australia or if there are any sarcoma specialists with ASPS experience, but perhaps Olga will be able to provide you with some information about this important matter. I do know that you need to be very pro-active with the doctors and to be as knowledgeable and well informed as possible. I urge you to contact Mick's doctor to discuss the issues and concerns that I have mentioned, and to tell him that you are unwilling to wait another three weeks for Mick to receive treatment for his kidney and brain lesions. My continued most caring thoughts and best wishes are with Mick and your family, and I will be anxiously awaiting your next update. Take care dear Sheree.
With deepest caring and concern, healing wishes for Mick, and continued Hope,
Bonni
Re: Mick from Australia, Sheree's husband
Hi guys well just an update the doctors have put Mick on a trial drug sutent. It is extremely expensive but hey its will hopefully be worth it. Just looking through the notes and it seems you all have been on this drug. The doctor told mick he was the 6th person with the same type of cancer on the trial so im guessing its a trial here not world wide. I was just reading that one person said that he could take this drug if it wasnt onthe brain... well it ison the brain so will it be safe? he has been a little sick and so far he has had 1 reall bad day. he started it on friday so been on it for 6 days.im just goning to read through other peoples stories again and just see how successful this drug is...
Will keep you all updated
Thanks again guys for just listening and replying with you r thoughts
Take Care xx
Will keep you all updated
Thanks again guys for just listening and replying with you r thoughts
Take Care xx
My husband has ASPS secondries inhis lungs and they are growing after info bout it all
Re: Mick from Australia, Sheree's husband
Sheree - we had few people with the brain mets on the TKI drugs - the class of drugs that Sutent belongs to, incl. cediranib, pazopanib, sorafenib etc. - and it was OK for them. The danger here is that if the response is dramatic and the tumor feeding blood vessels are really damaged by the drug, there might be intra-cranial bleeding. But if they include the people with the brain mets, then there is a statistics that it is OK. ASPS sarcoma is not the first disease where this drug is tried.
Why do you say that the drug is expensive, when it is a clinical trial, you should not be paying for it as the company producing the drug sponsor the trials and gives the drug free of charge.
Why do you say that the drug is expensive, when it is a clinical trial, you should not be paying for it as the company producing the drug sponsor the trials and gives the drug free of charge.
Olga
-
Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Mick from Australia, Sheree's husband
Dear Sheree,
Thank you for your thoughtful update. I am grateful that Mick is now on a promising systemic treatment, but I am personally concerned and perplexed about Mick not having first had his three new small brain mets treated with Gamma Knife or some other radiosurgery while they are still small enough to have a successful response to the treatment, and before he began the Sutent treatment. If the Sutent is unfortunately unsuccessful in stabilizing his disease progression and shrinking his tumors, then the brain mets may have already grown too large to be successfully treated with radiosurgery. Did the doctors give you a reason and explanation for not addressing and treating the brain mets PRIOR to beginning the Sutent treatment? Also, has a definitive diagnosis of the "lump" on Mick's kidney been made, and is surgical removal a possibility? Surgical removal would of course be the best option since the seven Cm. "lump" is so large that it may reduce the effectiveness of the Sutent, but if it is not resectable because of its location and/or size, Hopefully the Sutent will shrink/destroy it. As you will find in reading about other ASPS patients' treatment experiences and results with Sutent as well as Cediranib, these medications are unfortunately not a permanent cure since resistance is usually eventually developed to both of these tyrosine kinase inhibitors(TKI's), but they have thankfully been shown to be effective in stabilizing disease progression and shrinking/destroying tumors in ASPS patients for up to two years and in a few cases even longer. I am very Hopeful that Mick will have a very successful, long term, and sustained response to the Sutent, and that he will tolerate the side effects of the medication well. As you may have already been told by the doctor or read, one of the side effects of Sutent is a loss of pigmentation to the hair which turns it white, but once the Sutent is discontinued the color returns so it is thankfully not a permanent side effect
. Since Mick is now on Sutent, it would be good if you would post his further updates in the Sutent topic so people can more easily follow his Sutent treatment experience and results along with the other ASPS patients on this Board who are receiving Sutent treatment. The Sutent topic is located in the Systemic Treatment section under the Anti-angiogenic Treatment subject heading. I will be anxiously awaiting your next update dear Sheree, and holding Mick and your family very close in my heart and my most caring thoughts. Please take care, give Mick and yourself warm hugs from me, and keep in touch with the Board as you are able.
With deepest caring, positive thoughts, healing wishes, and continued Hope,
Bonni
Thank you for your thoughtful update. I am grateful that Mick is now on a promising systemic treatment, but I am personally concerned and perplexed about Mick not having first had his three new small brain mets treated with Gamma Knife or some other radiosurgery while they are still small enough to have a successful response to the treatment, and before he began the Sutent treatment. If the Sutent is unfortunately unsuccessful in stabilizing his disease progression and shrinking his tumors, then the brain mets may have already grown too large to be successfully treated with radiosurgery. Did the doctors give you a reason and explanation for not addressing and treating the brain mets PRIOR to beginning the Sutent treatment? Also, has a definitive diagnosis of the "lump" on Mick's kidney been made, and is surgical removal a possibility? Surgical removal would of course be the best option since the seven Cm. "lump" is so large that it may reduce the effectiveness of the Sutent, but if it is not resectable because of its location and/or size, Hopefully the Sutent will shrink/destroy it. As you will find in reading about other ASPS patients' treatment experiences and results with Sutent as well as Cediranib, these medications are unfortunately not a permanent cure since resistance is usually eventually developed to both of these tyrosine kinase inhibitors(TKI's), but they have thankfully been shown to be effective in stabilizing disease progression and shrinking/destroying tumors in ASPS patients for up to two years and in a few cases even longer. I am very Hopeful that Mick will have a very successful, long term, and sustained response to the Sutent, and that he will tolerate the side effects of the medication well. As you may have already been told by the doctor or read, one of the side effects of Sutent is a loss of pigmentation to the hair which turns it white, but once the Sutent is discontinued the color returns so it is thankfully not a permanent side effect
. Since Mick is now on Sutent, it would be good if you would post his further updates in the Sutent topic so people can more easily follow his Sutent treatment experience and results along with the other ASPS patients on this Board who are receiving Sutent treatment. The Sutent topic is located in the Systemic Treatment section under the Anti-angiogenic Treatment subject heading. I will be anxiously awaiting your next update dear Sheree, and holding Mick and your family very close in my heart and my most caring thoughts. Please take care, give Mick and yourself warm hugs from me, and keep in touch with the Board as you are able.With deepest caring, positive thoughts, healing wishes, and continued Hope,
Bonni
Re: Mick from Australia, Sheree's husband
Hi guys just checkin in hope you all are well... i just have a question...while your on the sutent is it normal to cough blood up? if so how much and how long and is there anything that they can do to stop it? Mick is on his 2nd round of sutent and well it will be a week since he started to cough blood up. He had a ct tuesday and well i just rang the doctor and well our doc is away so i was talking to someone unfairmial with mick and he has said there is nothing they will do for for him due to the large tumor round the b wind pipe but im not real sure or happy with that answer but he reckons no one who put the carmera down to see where the bleed is coming from im just not happy... he also told me that there has been no change in the cancer but Mick still has 1 week left of the tablets to go then is due for a ct scan on 2 weeks before his check up on the 10th May.... im just not happy with a strange doctor saying there is nothing they can do.... please can someone teel me if there could be
Thanks guys will logg back in soon
Sheree xxxx
Thanks guys will logg back in soon
Sheree xxxx
My husband has ASPS secondries inhis lungs and they are growing after info bout it all
Re: Mick from Australia, Sheree's husband
Sheree - wait for the reg. doc to see he scan, the bleeding can be few different reasons and one of them that the tumor is responding and there is a damage to the blood vessels feeding the tumor. Did this other doc say that there was no change in the size of the bigger tumor? No change is not a bad thing at the only second round and he most probably will stay on Sutent further. Is there a lot of blood?
Olga