Hi guys,
My mom's uterus biopsy came back negative for malignancies thankfully.
Unfortunately she met with her oncologist to review her recent lung scan and the nodules that were present before have grown, and there are new nodules in both lungs. She doesn't know how many but it sounds like quite a few... Largest one is 7mm. I guess the doctor wants to biopsy the lungs (I questioned why but it sounds like that's the plan). Then she is having another full body pet scan and brain MRI. The doc spoke of a drug she can try but neither her nor my step dad remember the name of it.
Obviously this is what we feared the most and it's very upsetting. From the research and reading I've done on here it sounds like one of the best treatments is seeing dr rolle in Germany to try to have all lung nodules removed? Feeling pretty overwhelmed.
Jolie's mother from California - Dx Oct 2013
Re: Jolie's mother from California - Dx Oct 2013
Hey there
Please let us all absorb what you've presented to us and sleep on it
I am so sorry for the news but it is not insurmountable.
Hang in there and hugs to you all
Love to you all !
Debbie
Please let us all absorb what you've presented to us and sleep on it
I am so sorry for the news but it is not insurmountable.
Hang in there and hugs to you all
Love to you all !
Debbie
Debbie
Re: Jolie's mother from California - Dx Oct 2013
Jolie, please try to not let them to biopsy the lungs. It just does not make any sense. Any experiences sarcoma oncologist can diagnose the lung mets only by watching their growth pattern. None of our patients here had their lung mets diagnosed by biopsy, only by the scans and watching the growth, and it was always confirmed to be ASPS by the histology if they had a surgery. I do not see any point to biopsy the lung mets unless your mother wants to participate in a clinical trial and there is a requirement to have lung mets with the pathology conformation that they are ASPS.
re. surgery. Not all the cases are good candidates for Dr.Rolle surgery. For some people it is a good treatment, but in some cases he can not help. It all depends on the number of mets, speed of growth and an overall health condition - if she can have these surgeries. Only Dr.Rolle can say. And Dr.Rolle is going to retire soon, so even this option can be lost at some point. This surgery is done in some other places but with less experience and more expensive, There is a very good surgeon who does it in UK, but it costs like *3 times more in UK. If there are only few mets they can be cryoablated instead of surgery.
re. surgery. Not all the cases are good candidates for Dr.Rolle surgery. For some people it is a good treatment, but in some cases he can not help. It all depends on the number of mets, speed of growth and an overall health condition - if she can have these surgeries. Only Dr.Rolle can say. And Dr.Rolle is going to retire soon, so even this option can be lost at some point. This surgery is done in some other places but with less experience and more expensive, There is a very good surgeon who does it in UK, but it costs like *3 times more in UK. If there are only few mets they can be cryoablated instead of surgery.
Olga
Re: Jolie's mother from California - Dx Oct 2013
We initially had Joshuas dxd by a VATS
3 small tumors were removed on his right lung
It was a very easy procedure as the tumors were close to the exterior of the lung.
However the overnight recovery was tough as the ICU had to regulate oxygen and pain meds as to not slow his breathing down too much. The chest tube was no fun either. I believe josh was in the hospital for 3 days
If we had it to do over again I would of opted for scans and watching instead of video assisted thoraicodomy
We did the procedure before the introduction to the forum
Jolie was the scan ct with contrast?
Stay strong
Love,
Debbie
3 small tumors were removed on his right lung
It was a very easy procedure as the tumors were close to the exterior of the lung.
However the overnight recovery was tough as the ICU had to regulate oxygen and pain meds as to not slow his breathing down too much. The chest tube was no fun either. I believe josh was in the hospital for 3 days
If we had it to do over again I would of opted for scans and watching instead of video assisted thoraicodomy
We did the procedure before the introduction to the forum
Jolie was the scan ct with contrast?
Stay strong
Love,
Debbie
Debbie
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Bonni Hess
- Senior Member
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- Location: Sammamish, WA USA
Re: Jolie's mother from California - Dx Oct 2013
Dear Jolie,
Thank you for your thoughtful udate. I am so grateful that your mother's uterus biopsy was negative for any malignant growths, but I am very sorry that her recent lung scan showed increased growth of her lung mets as well as development of new mets in both lungs which is unfortunately not surprising given the nature of this disease to continue to progress. I very much agree with Olga's highly respected input and advice against having the lung mets biopsied for all of the reasons which she has shared with you. Given the known nature of ASPS to metastasize to the lungs and grow. a lung met biopsy is an unnecessary procedure which will only cause your dear mother additional suffering and pain, and may possibly cause further dissemination of the tumor cells through the blood stream. When Brittany was first diagnosed and we were still numb from the diagnosis and had very limited knowledge about ASPS, we naiively agreed to a biopsy of a couple of her lung mets because the doctors told us that her more than 50 lung lesions "could just be scar tissue" from previous lung infections. Heartbreakingly the biopsy confirmed that the lesions were ASPS and in hindsight we would never have subjected Brittany to the discomfort and pain that she endured from the procedure and the chest tube if we would have been more knowledgeable about the disease. It is critically important to be as well informed and as knowledgeable as possible in making any treatment decisions, and to feel free to question the oncologist's recommendations and require documented data to support his/her recommendations. Is your mother's oncologist a sarcoma specialist? If not, I strongly encourage you to find someone who is a sarcoma specialist preferably with experience in treating patients with ASPS so your mother isn't subjected to unnecessary procedures. Also, based on my personal knowledge, experience, and observations, PET scans are unreliable in providing the most accurate scan information and can provide false negatives or false positives. I would recommend that you request chest/abdominal/pelvic CT scans along with the brain MRI and an annual full body bone scan for the best monitoring of your mother's disease. Please take care Jolie, and keep the Board updated as you are able.
With special caring thoughts, healing wishes for your dear mother, and continued Hope,
Bonni
Thank you for your thoughtful udate. I am so grateful that your mother's uterus biopsy was negative for any malignant growths, but I am very sorry that her recent lung scan showed increased growth of her lung mets as well as development of new mets in both lungs which is unfortunately not surprising given the nature of this disease to continue to progress. I very much agree with Olga's highly respected input and advice against having the lung mets biopsied for all of the reasons which she has shared with you. Given the known nature of ASPS to metastasize to the lungs and grow. a lung met biopsy is an unnecessary procedure which will only cause your dear mother additional suffering and pain, and may possibly cause further dissemination of the tumor cells through the blood stream. When Brittany was first diagnosed and we were still numb from the diagnosis and had very limited knowledge about ASPS, we naiively agreed to a biopsy of a couple of her lung mets because the doctors told us that her more than 50 lung lesions "could just be scar tissue" from previous lung infections. Heartbreakingly the biopsy confirmed that the lesions were ASPS and in hindsight we would never have subjected Brittany to the discomfort and pain that she endured from the procedure and the chest tube if we would have been more knowledgeable about the disease. It is critically important to be as well informed and as knowledgeable as possible in making any treatment decisions, and to feel free to question the oncologist's recommendations and require documented data to support his/her recommendations. Is your mother's oncologist a sarcoma specialist? If not, I strongly encourage you to find someone who is a sarcoma specialist preferably with experience in treating patients with ASPS so your mother isn't subjected to unnecessary procedures. Also, based on my personal knowledge, experience, and observations, PET scans are unreliable in providing the most accurate scan information and can provide false negatives or false positives. I would recommend that you request chest/abdominal/pelvic CT scans along with the brain MRI and an annual full body bone scan for the best monitoring of your mother's disease. Please take care Jolie, and keep the Board updated as you are able.
With special caring thoughts, healing wishes for your dear mother, and continued Hope,
Bonni
Re: Jolie's mother from California - Dx Oct 2013
Thanks for the advice everyone. I am also skeptical about the lung biopsy, but my mom is already pretty stressed out and it seems questioning her Oncologist is just adding more stress for her. Her doctor is Dr. Chmielowski at UCLA who specializes in sarcoma. The drug he suggested is Votrient. I have reached out to Dr Chawla on my mom's behalf. Unfortunately he is out of her HMO network but I think it may be worth while to get a second opinion even if that means paying the $250 out of pocket. However if my mom decides she doesn't want to overwhelm herself with different doctors (she trusts her current onc) then I will support her decision.
What do you call a bone scan? I thought a bone scan was a full body PET scan.
What do you call a bone scan? I thought a bone scan was a full body PET scan.
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Jolie's mother from California - Dx Oct 2013
Hello again Jolie and thank you for your prompt response. I am not personally familiar with Dr. Chmielowski but am grateful that he is a sarcoma specialist. Since he is a sarcoma specialist and should certainly be knowledgeable about the known nature of ASPS to metasasize to the lungs, I am perplexed about his reason for wanting to subject your mother to a lung biopsy. Has he discussed his rationale for doing the biopsy with your mother and you and satisfactorily answered your questions/concerns about doing the procedure? Is he advocating surgical resection of the lung mets through a thoractomy, or only doing a biopsy which to me seems to serve no purpose since the results of the biopsy will unfortunately almost certainly just confirm that the suspected lesions are ASPS mets. My heart breaks for all of the stress and anguish that your mother and your family are going through, and I of course understand that it is important to try to prevent any additional stress for your mother, but I also know how critically important it is to make informed decisions based on knowledge and not emotions in fighting this very challenging disease. Doctors can and do make mistakes and they don't always have knowledge of the invaluable anecdotal information shared by ASPS patients and their families that is available on this Forum. A prime example is when Brittany's very knowledgeable, extremely experienced, and highly respected radiation oncologist was strongly advocating and encouraging Whole Brain Radiation (WBR) for Brittany based on what turned out to be false PET scan results which erroneously showed possible tumor reoccurrence in Brittany's resected tumor bed. Based on our knowledge and information from networing with other ASPS Community members who had unsuccessfully undergone WBR with very negative and ultimately fatal results, we thankfully refused to subject Brittany to the WBR treatment which turned out to be a very wise decision since an Interstitial Laser Thermo Therapy (ILTT) procedure ultimately revealed that there was actually no tumor re-occurrence amd that the PET scan had been erroneous. Had we accepted and followed the radiation oncologist's advice to proceed with WBR to try to shrink/destroy the non-existent brain met reoccurrence and stabilize the progression of the disease in Brittany's brain, Brittany would have most certainly experienced permanent short term memory loss and increased development of brain mets as tragically occurred with the other WBR ASPS patients who we had followed and networked with. I understand that you are in a difficult position as a daughter of a patient dear Jolie, but I encourage you to be as pro-active and knowledgeable as possible before your mother proceeds with having any procedures just because the doctor she trusts is recommending it. Votrient aka Pazopanib may be a good systemic treatment option for your mother, but unfortunately, based on my personal observations of other patients who have/are currently undergoing treatment with Votrient, it has thus far not proven to be very successful in providing sustained long term disease stability for ASPS patients. Since your mother has thankfully not yet developed mets anywhere else in her body, and there is a possibility of addressing and treating her lung mets with laser resection with Dr. Rolle or Cryoablation it may be best to postpone a systemic treatment, which may not provide sustained or long term disease stability, until a more effective and permanent treatment and cure can be found. Most of the currently available ASPS research literature advocates managing ASPS through surgical removal (resection)of tumors, ablation, or radiosurgery unless there are unresectable/unablatable/untreatable tumors which then may neccessitate the use of a systemic treatment. The main point is to be well researched and very knowledgeable in making treatment decisions because any treatment decision that is made is critically important and could possibly have very negative and even fatal consequences. I Hope that somehow your mother can be made aware of this without it overwhelming or unduly stressing her. There are unfortunately no definitve answers, and those of us on this Board are not doctors, but shared anecdotal treatment knowledge is invaluable and one of our strongest weapons in fighting this very challenging battle with this insidious disease.
With deepest caring, healing wishes for your mother, and continued Hope,
Bonni
With deepest caring, healing wishes for your mother, and continued Hope,
Bonni
Re: Jolie's mother from California - Dx Oct 2013
Hi Jolie,JolieS wrote:Thanks for the advice everyone. I am also skeptical about the lung biopsy, but my mom is already pretty stressed out and it seems questioning her Oncologist is just adding more stress for her. Her doctor is Dr. Chmielowski at UCLA who specializes in sarcoma. The drug he suggested is Votrient. I have reached out to Dr Chawla on my mom's behalf. Unfortunately he is out of her HMO network but I think it may be worth while to get a second opinion even if that means paying the $250 out of pocket. However if my mom decides she doesn't want to overwhelm herself with different doctors (she trusts her current onc) then I will support her decision.
What do you call a bone scan? I thought a bone scan was a full body PET scan.
About the bone scan
I had just received a response from Olga under this post
http://www.cureasps.org/forum/viewtopic ... t=23#p7613
After 2 years( September of this year) I've been able to fine tune what the bone scan is called --Bone scan it is called
Go figure. Apparently the PET scan has limitations and that's what we used originally as our "bone scan". So next scheduled scan
Pertaining to trust of ones doctor, I totally agree. However ask lots of questions. The doctors should welcome them
Was your mom's uterine scan as a result of felt pain?
True bone scan's are yet another tool in which to keep an eye on all parts of your mom's body.
However if there is a pain in an ASPS person's lower half of their body talk with your sarcoma doctor. Further investigation needs to happen
This cursed disease , for lack of an explicative word, has to be stopped. PDQ!
Think of scans as a preventative measure to keep the sarcoma from winning.
Love
Debbie
Debbie
Re: Jolie's mother from California - Dx Oct 2013
I want to add the following consideration - if the lung surgery is considered at all, the previous biopsy will make it less effective as it is very advantageous for Dr.Rolle to operate initially on a completely non-scarred lung. Then he gets a chance to preform the laser assisted resection in its best way. He uses the laser to eradicate the small mets and since it is an intense heat there is very little blood loss and the clean dry field gives him an opportunity to find more small mets. If there is a scarring from the previous biopsy and tube that is often inserted after the lung biopsy to drain the blood or air, then he has to cut the adhesion first to separate the lung surface from the pleura, the lungs starts to bleed and gets stiff faster, limiting his vision and time he can operate. So I would evaluate all the options first and then to decide. But overall, it is an excess procedure as it is very clear what these nodules are only based on their behavior, if they multiply and grow they can not be the scars from the previous infection.
Olga
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Jolie's mother from California - Dx Oct 2013
Dear Jolie,
I echo Olga's concerns, comments, and advice and strongly urge you to request that your mother's doctor re-consider/cancel the planned biopsy of your mother's lung mets which seems to be a completely unnecessary surgical procedure which has no possible benefits in terms of treating her ASPS, and could actually have a detrimental effect on future treatments.
With shared concern, special caring thoughts, healing wishes for your mother, and continued Hope,
Bonni
I echo Olga's concerns, comments, and advice and strongly urge you to request that your mother's doctor re-consider/cancel the planned biopsy of your mother's lung mets which seems to be a completely unnecessary surgical procedure which has no possible benefits in terms of treating her ASPS, and could actually have a detrimental effect on future treatments.
With shared concern, special caring thoughts, healing wishes for your mother, and continued Hope,
Bonni
Re: Jolie's mother from California - Dx Oct 2013
Hi all, a few quick updates to share:
A few weeks back my mom had a ct guided lung biopsy which unfortunately was unsuccessful. The doctor was unable to penetrate any of the lung nodules. She plans to try again in a few weeks. In the meantime she has begun taking votrient at 800mg a day. She started on the 26th and so far is tolerating it well. We learned that in just one month her lung mets grew and multiplied. The scans still say innumerable but one of them grew from 9mm > 13mm. Her oncologist is open to the idea of laser resection by dr Rolle however seems skeptical about its effectiveness overall. There's just no way to know if that treatment will be worthwhile in the long run. It seems very outlandish to my mom who has a job and my 11-year old sister to care for. Hard to imagine spending all that money and time on something that isn't 100%. I want to gather her recent scans and send to dr Rolle for his opinion any way though.
Hoping that votrient stops any more growth and is tolerated with minimal symptoms. The doc was a bit worried about its effects on her liver combined with the Lipitor cholesterol medication she takes. We both plan on changing our diets a bit and I'm hoping we can get her cholesterol lowered that way and stop Lipitor. We're also making a pact to practice yoga as it should help with over all health and stress etc. Lots of new year resolutions!
As for the gynecological issues, her oncologist approved the gynecologists request to treat the fibroids in her uterus with a low dose hormone IUD. It's either that or total hysterectomy, which is a major surgery we'd all prefer to avoid of course. Since the hormone will be targeted and not an oral dose her onc thinks it will be fine. She has no evidence of sarcoma anywhere near her uterus so this is the best plan of treatment.
Hopeful for a happy, healthy and love filled new year! I'm planning to move back to LA / Orange County from NYC as soon as possible. Just hoping I can find a good new job before making the move. Hard decision to make, uprooting my life in the city, but I think it will be for the best. It's too hard living across the country during all this. Now let's hope I find a great job to make the move easier and more practical!
Wishing everyone the best in the new year! Hard to believe its about to be 2015.
A few weeks back my mom had a ct guided lung biopsy which unfortunately was unsuccessful. The doctor was unable to penetrate any of the lung nodules. She plans to try again in a few weeks. In the meantime she has begun taking votrient at 800mg a day. She started on the 26th and so far is tolerating it well. We learned that in just one month her lung mets grew and multiplied. The scans still say innumerable but one of them grew from 9mm > 13mm. Her oncologist is open to the idea of laser resection by dr Rolle however seems skeptical about its effectiveness overall. There's just no way to know if that treatment will be worthwhile in the long run. It seems very outlandish to my mom who has a job and my 11-year old sister to care for. Hard to imagine spending all that money and time on something that isn't 100%. I want to gather her recent scans and send to dr Rolle for his opinion any way though.
Hoping that votrient stops any more growth and is tolerated with minimal symptoms. The doc was a bit worried about its effects on her liver combined with the Lipitor cholesterol medication she takes. We both plan on changing our diets a bit and I'm hoping we can get her cholesterol lowered that way and stop Lipitor. We're also making a pact to practice yoga as it should help with over all health and stress etc. Lots of new year resolutions!
As for the gynecological issues, her oncologist approved the gynecologists request to treat the fibroids in her uterus with a low dose hormone IUD. It's either that or total hysterectomy, which is a major surgery we'd all prefer to avoid of course. Since the hormone will be targeted and not an oral dose her onc thinks it will be fine. She has no evidence of sarcoma anywhere near her uterus so this is the best plan of treatment.
Hopeful for a happy, healthy and love filled new year! I'm planning to move back to LA / Orange County from NYC as soon as possible. Just hoping I can find a good new job before making the move. Hard decision to make, uprooting my life in the city, but I think it will be for the best. It's too hard living across the country during all this. Now let's hope I find a great job to make the move easier and more practical!
Wishing everyone the best in the new year! Hard to believe its about to be 2015.
Re: Jolie's mother from California - Dx Oct 2013
Hi Jolie and familyJoli as Hi all, a few quick updates to share:
A few weeks back my mom had a ct guided lung biopsy which unfortunately was unsuccessful. The doctor was unable to penetrate any of the lung nodules. She plans to try again in a few weeks. In the meantime she has begun taking votrient at 800mg a day. She started on the 26th and so far is tolerating it well. We learned that in just one month her lung mets grew and multiplied. The scans still say innumerable but one of them grew from 9mm > 13mm. Her oncologist is open to the idea of laser resection by dr Rolle however seems skeptical about its effectiveness overall. There's just no way to know if that treatment will be worthwhile in the long run. It seems very outlandish to my mom who has a job and my 11-year old sister to care for. Hard to imagine spending all that money and time on something that isn't 100%. I want to gather her recent scans and send to dr Rolle for his opinion any way though.
Hoping that votrient stops any more growth and is tolerated with minimal symptoms. The doc was a bit worried about its effects on her liver combined with the Lipitor cholesterol medication she takes. We both plan on changing our diets a bit and I'm hoping we can get her cholesterol lowered that way and stop Lipitor. We're also making a pact to practice yoga as it should help with over all health and stress etc. Lots of new year resolutions!
As for the gynecological issues, her oncologist approved the gynecologists request to treat the fibroids in her uterus with a low dose hormone IUD. It's either that or total hysterectomy, which is a major surgery we'd all prefer to avoid of course. Since the hormone will be targeted and not an oral dose her onc thinks it will be fine. She has no evidence of sarcoma anywhere near her uterus so this is the best plan of treatment.
Hopeful for a happy, healthy and love filled new year! I'm planning to move back to LA / Orange County from NYC as soon as possible. Just hoping I can find a good new job before making the move. Hard decision to make, uprooting my life in the city, but I think it will be for the best. It's too hard living across the country during all this. Now let's hope I find a great job to make the move easier and more practical!
Wishing everyone the best in the new year! Hard to believe its about to be 2015.
Good to hear from you.
Happy new year to you all too.
Questions?
The votrient and the biopsy. She's been told to look out for bleeding issues to? Will she have to stop the votrient before the biopsy? Rebound is not her friend.
Scans can be used to follow the spots compared to having to take a biopsy which is a hundred times harder on a patient as I see it.
Is the doctor able to give her options to cholesterol meds to be easier on her system ?
And last but not least is it absolutely necessary to go on hormones?
Sorry for the piling on of questions.
All the well wishes in finding a job ! Also to your family!
All my love
Debbie
Last edited by D.ap on Tue Dec 30, 2014 12:50 pm, edited 2 times in total.
Debbie
Re: Jolie's mother from California - Dx Oct 2013
Hi Jolie, thank you for an update. There are few comments that I want to make:
1. A second attempt to biopsy the lung mets - I have no idea what the first was for, but the second one? They grow and multiply, so what are they trying to find out?
2. re. lung surgery being not 100% cure. There is nothing in sarcoma treatments that is 100% cure. None of them are even 50%. The whole goal is to buy time, not to cure it. Metastatic sarcomas are considered to be incurable and all (currently available) treatments are used to prolong life - to hang around long enough to be able to wait till the more permanent solution is found. They have different efficacy from this point of view - how durable the response is and how much time they buy, they also have to be balanced against the quality of life/money/pain/side effects. If the oncologist is skeptical re. surgery effectiveness - what did she say re. expected votrient effectiveness overall?
3. The hormonal treatment for fibrosis - does it need to be treated at all? There is some evidence that ASPS is a hormone sensitive cancer. It is hard to say what type of hormones make it grow - sex, steroid, growth, thyroid etc.
3. I am so impressed with your moving from NYC to be closer to your mother and posting here for her. Try to have a good holiday as everything is relative in this world and we need to appreciate what we have now and enjoy by every minute of today.
1. A second attempt to biopsy the lung mets - I have no idea what the first was for, but the second one? They grow and multiply, so what are they trying to find out?
2. re. lung surgery being not 100% cure. There is nothing in sarcoma treatments that is 100% cure. None of them are even 50%. The whole goal is to buy time, not to cure it. Metastatic sarcomas are considered to be incurable and all (currently available) treatments are used to prolong life - to hang around long enough to be able to wait till the more permanent solution is found. They have different efficacy from this point of view - how durable the response is and how much time they buy, they also have to be balanced against the quality of life/money/pain/side effects. If the oncologist is skeptical re. surgery effectiveness - what did she say re. expected votrient effectiveness overall?
3. The hormonal treatment for fibrosis - does it need to be treated at all? There is some evidence that ASPS is a hormone sensitive cancer. It is hard to say what type of hormones make it grow - sex, steroid, growth, thyroid etc.
3. I am so impressed with your moving from NYC to be closer to your mother and posting here for her. Try to have a good holiday as everything is relative in this world and we need to appreciate what we have now and enjoy by every minute of today.
Olga
Re: Jolie's mother from California - Dx Oct 2013
Hi Jolie,
I'm also very impressived with your moving close to your mother. I wish you will find a great job in LA soon and wish you and your family a prosperous new year!
Lynette
Happy New Year to everyone. I wish you all the best and a peaceful and healthy new year in 2015!
I'm also very impressived with your moving close to your mother. I wish you will find a great job in LA soon and wish you and your family a prosperous new year!
Lynette
Happy New Year to everyone. I wish you all the best and a peaceful and healthy new year in 2015!
Re: Jolie's mother from California - Dx Oct 2013
Hi all,
Quick update - my mom has been taking Votrient for a few months now with manageable side effects (fatigue, upset stomach, white hair). We'll find out in a few weeks if it is working to stabilize her lung mets.
She recently received the genetic testing back from Foundation One which found a mutation in the EGFR gene (report says: "Genomic alteration Identified: EGFR amplification - equivocal"). This is not commonly found in sarcomas, and the report says "equivocal" which I guess means they're uncertain...They listed 6 FDA approved (for other cancers) therapies: Afatinib, Cetuximab, Erlotinib, Gefitinib, Lapatinib, and Panitumumab.
Does anyone else have experience with genetic testing/Foundation One? Has anyone else heard of any of these treatments potentially working for ASPS?
The oncologist prepared us not to receive any useful suggested therapies from this testing, but submitted it just in case. Now that we're receiving this information he seems a little surprised. We're going to see how Votrient has been working, and assuming it is then we'll stick with it. I guess it's another option to pursue approval to use one of the above listed treatments... not sure.
Hope everyone else is doing well.
Quick update - my mom has been taking Votrient for a few months now with manageable side effects (fatigue, upset stomach, white hair). We'll find out in a few weeks if it is working to stabilize her lung mets.
She recently received the genetic testing back from Foundation One which found a mutation in the EGFR gene (report says: "Genomic alteration Identified: EGFR amplification - equivocal"). This is not commonly found in sarcomas, and the report says "equivocal" which I guess means they're uncertain...They listed 6 FDA approved (for other cancers) therapies: Afatinib, Cetuximab, Erlotinib, Gefitinib, Lapatinib, and Panitumumab.
Does anyone else have experience with genetic testing/Foundation One? Has anyone else heard of any of these treatments potentially working for ASPS?
The oncologist prepared us not to receive any useful suggested therapies from this testing, but submitted it just in case. Now that we're receiving this information he seems a little surprised. We're going to see how Votrient has been working, and assuming it is then we'll stick with it. I guess it's another option to pursue approval to use one of the above listed treatments... not sure.
Hope everyone else is doing well.