Hello! My name is Sharmaine, I'm 21 and I live in Los Angeles, California. What motivated me to join this forum was a call from my oncologist last weekend. He called regarding my recent CT scan last Monday, good news is I seem to have a stable amount of lung mets (not sure about amount), but my largest pulmonary node has doubled to 1 in. He mentioned 3 options 1) Continue to solely monitor the nodes, his reasoning being I am not showing signs of symptoms 2) Be put on a prescription (Sunitinib I believe it was the drug he mentioned) 3) Enroll in a clinical trial. My oncologist recommended we continue scans since I'm "not showing any symptoms, so I don't have to jump on any pills." However, to me it feels like sitting around. I want to actively do something.
My history with ASPS:
Diagnosed in Fall 2013
Radiation Therapy Winter 2013-2014
Primary tumor in thigh excised in April 2014
Pulmonary mets found in the same month
No brain mets
Since then, I have been receiving CT scans every 6 months. No chemo or radiation therapy.
I was browsing through the Lung Metastases Treatment thread, and the Laser Surgery seems very interesting. I was hoping anyone could provide or direct me to some advice as I'm approaching a time I would have to kick myself into gear towards treatment.
I am very thankful for this forum and am looking forward to interacting with you all!
Sharmaine, hi, welcome to the board. I will later move your tread to the Personal updates forum, where we keep the patient's topics as the new posts are added to them as the time goes.
Re. 3 options your oncologist gave to you. I am pretty surprised that the local ablative treatment was not on the list - if all the other mets do not grow and only one is pretty aggressive, it better be addressed sooner than later as left uncontrolled it can represent the danger to your life soon. There are few local ablative options such as cryoablation, RFA (not that popular in our community as it is more damaging than cryo) and radiosurgery (focused high dose radiation treatment, it is used in the location not easily accessible by cryoablation). 1 inch is almost getting to big for the easy and successful cryoablation treatment, the window of opportunity could be lost. My son (Ivan) had many of them done by Dr .Littrup in Providence and there is one more experienced Dr.Aoun in Detroit, there is also good quality interventional radiologist Dr.Suh in LA. We always do self referral. There are could be different opinions re. what treatment is better between oncologists, surgeons, interventional radiologists - unfortunately it is hard to say at times who is right and we have to make a choice.
Re. laser assisted surgery (pulmonary metastasectomy) was a very interesting option but unfortunately its biggest expert Dr.Rolle from Germany has now retired (last month) and at the moment I do not know who is going to be his replacement - I am sure that there is someone, I just need to contact the clinics in Coswig and I will do it soon, I have already requested an information about it and will update the board as soon as I get an answer.
I'm glad you found this forum as its has been a source of hope and inspiration for us for over 3 years. The bases of suggested care comes from people who've seen people alive as a result of surgeries and what Olga is referring to as ablations. Some people have used ONLY surgery while other folks have had to start on chemos , which the majority have not worked then move on to other medicines that have shown only limited success. That was after tumors were inoperative.
Please look into the cryoablation before starting any medicines. That has proven to be the absolute best treatment thus far.
Let's us know what you find out.
Dear Sharmaine,
As with everyone on this Forum, I am so sorry for your ASPS diagnosis, but am grateful that you found your way to this Web site and that you have now reached out for information and support. I agree with the input and advice which both Olga and Debbie have offered, and strongly encourage you to pursue and obtain treatment for your largest most concerning lung mets as soon as possible and before they grow any larger and can no longer be successfully treated. I personally feel that Cryoablation is your best treatment option based on the success that our daughter Brittany had with her two lung met Cryoablation procedures for multiple mets, and the successful results of several other ASPS patients on this Board. Brittany also underwent one RFA (Radiofrequency ablation) for a couple of lung mets, but we have always suspected that the RFA was responsible for seeding tumor cells and causing widespread dissemination of her disease, so based on our personal very negative experience it is not a procedure that I would personally recommend for treating/shrinking/and destroying lung mets, although it did work well and successfully for Brittany's tibia met. Additionally, since your metastasis is currently confined to your lungs, and there are unfortunately currently no permanently effective systemic treatments available, I think that you should postpone starting an unproven systemic treatment like Sunitinib aka Sutent, and focus on treating your largest most concerning and growing lung mets while continuing to monitor the status of your disease with regular and appropriate scans including at least every six months chest CT scans and abdominal and pelvic MRI's if possible, and abdominal and pelvic CT's if the MRI's are not covered by your insurance, a brain MRI once a year( NOT just a brain CT which is inadequate in finding brain mets at the smallest most treatable size), and a full body bone scan once a year. DO NOT WAIT TO BECOME SYMPTOMATIC TO HAVE YOUR SCANS AND/OR TREAT THE METS!! because once the mets are symptomatic they may be too large to resect or ablate. Unfortunately, Sutent has thus far not proven to be very successful for any of the ASPS patients who I am familiar with who have been treated with it in terms of significant tumor shrinkage and long term sustained disease stability. If your disease becomes more aggressive and/or begins to progress and metastasize to other areas of your body with unresectable or untreatable mets, then it may become necessary and advisable to seek systemic treatment to try to destroy the mets and stabilize the progression of the disease. However, I personally feel that there are more promising systemic treatments available than Sutent including Cediranib or some of the new immunotherapy PDL-1 treatments. I know and understand that you want to pro-actively do something to treat your ASPS, but you may need to reserve the currently available systemic treatments for if or when your disease becomes more aggressive, because if you begin treatment with Sutent or one of the other systemic treatments now and it is unsuccessful, then you may have limited to none remaining treatment options available when you really need one. I know that these are all very difficult decisions, but it is critically important that you be as knowledgeable, well informed, and well researched as possible before making any treatment decision. I Hope that you have the strengthening support and help of family and friends with your ASPS battle, and that you are receiving oncological care and advice from an oncologist who is experienced and knowledgeable about Sarcoma, and preferably specifically ASPS, all of which is critically important in this challenging battle with this extremely rare, poorly understood, and insidious disease.
Take care dear Sharmaine, stay strong and positive, be very pro-active and as knowledgeable as possible about your scans and treatments, and keep in touch with this Board as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni Hess, mother of now 33 year old Brittany diagnosed at age 19 in July 2001 and currently participating in a Cediranib Clinical Trial which has very thankfully provided her with almost seven years of sustained disease stability and dramatic shrinkage/disappearance of her previously innumerous and widely disseminated mets
Olga, Debbie, Bonnie, I am deeply grateful for your responses, thank you. It is nice to meet all of you.
I emailed my onc and he intends to present my case at his chest tumor board March 15th to discuss my potential for the local ablation procedures. I do hope I am eligible for cryoablation as you all mentioned. I don't believe I am scheduled for brain MRIs or a full body bone scan so I'll email my onc about that as well.
Are there any good scientific sources out there for ASPS info anyone recommends?
Edit: Also wanted to mention I am looking into seeking a second opinion at City of Hope. Just waiting on Kaiser to deliver the Insurance Authorization number.
Also, my onc replied to my email and just ordered a baseline brain MRI and bone scan. Woot!
Hello again Sharmaine, Thank you for the updated information. I am so grateful that your oncologist is so responsive to your requests and that he has now ordered a brain MRI and full body bone scan both of which are critically important in adequately monitoring and pro-actively managing this unpredictable disease. It is frustrating but not surprising that these scans have not been previously and regularly done with you for the past two and a half years since your 2013 diagnosis. Unfortunately too many doctors fail to provide adequate ASPS scans inexplicably/inexcusably waiting until the tumors become symptomatic. Vigilant and adequate scans to find mets at the smallest most treatable size are one of the most effective weapons in managing and fighting this challenging disease. You are to be commended for so quickly contacting your oncologist to request the scans. My most positive thoughts and very best wishes are with you for good scan results which show no brain or bone mets, and I will be anxiously awaiting your update on the scan results when your time allows. With caring hugs, special thoughts, healing wishes, and continued Hope, Bonni
Last edited by Bonni Hess on Thu Mar 10, 2016 9:15 am, edited 1 time in total.
Sharmaine
Here's an article for support of treating the lung tumor and any tumors of the lung in the future
http://www.cureasps.org/forum/viewtopic ... =501#p2078
As you can see it was dated in 2010 as Olga and Bonni and a few others have been in the trenches fighting on all of our behaves that long plus many years before
Ivan, Olga's son was dx in 2003.
Hello again Sharmaine,
I would like to additionally recommend that in addition to your brain MRI and full body bone scan, that you also request and obtain an abdominal and pelvic scan ( preferably an MRI to prevent radiation exposure, but at least a CT if your insurance refuses to cover an MRI) because you only mentioned having chest CT scans every six months. In the early years of Brittany's ASPS battle, she was only receiving chest CT's in addition to an annual brain MRI and full body bone scan, until one of her regularly scheduled monitoring chest CT's inadvertently included the top portion of her liver and it showed a small liver met. Had this liver met not been noticed and reported by an observant radiologist, we would most likely have not known about the met until it became symptomatic and by then it would have probably been too large to successfully treat with Radiofrequency Ablation (RFA). Some oncologists naiively/inexplicably/inexcusably only monitor ASPS with regular chest CT's thinking that is adequate as long as the lung mets are relatively stable and the patient is asymptomatic, but this is definitely NOT the case!! At the time of Brittany's liver met diagnosis, her lung mets had been relatively stable but her disease had metastasized to her liver, and not long after the liver met diagnosis she was also diagnosed with brain mets. This insidious disease can and does sometimes develop in other areas of the body even when it appears relatively stable in the lungs!! I share this information not to frighten you, but only because I care so deeply about all of our ASPS Community patients and Hope that you and others can learn and benefit from our 14+ years of anecdotal ASPS experience, research, observations, and knowledge. Take care dear Sharmaine and have a good weekend.
With special caring thoughts, healing wishes, warm friendship, and continued Hope,
Bonni
I greatly appreciate your advice and story, and I am thankful to hear that Luck had extended its hand to you in the discovery of that liver met. I am very grateful for everyone's wisdom and to see such compassion in this community.
I believe my last CT scan (the one I mentioned in my original post) was a chest and abdominal scan. I am going to email my onc about additional scans. To get this in order in my head, it seems my scan schedule is going to be:
once a year: brain MRI, full body bone scan
every six months: abdominal/pelvic scan (MRI preferably), chest CT
Dear Sharmaine,
Thank you for your kind words and the clarification of your scan situation and planned schedule. I Hope that the input and advice that is offered on this Board is helpful to you in managing and fighting this challenging disease. I acknowledge that I am not a doctor, but for the past fourteen and a half years since Brittany's diagnosis I have devoted all of my time to fighting Brittany's cancer through constant and extensive ASPS research and networking with other ASPS patients/families which doctors don't have the luxury of doing because of their demanding patient appointment and treatment schedules. Some of Brittany's oncologists call Brittany, me, and my husband Team Hess because we are so pro-active, so well informed and researched, and so knowledgeable which is essential in fighting this little known and poorly understood disease. I strongly feel that shared ASPS patient anecdotal treatment information is one of our strongest weapons in fighting ASPS because by the time the data from various treatment results are finally accumulated and published it may be several years, which ASPS patients unfortunately don't have the luxury of waiting for. It is my great Hope that other patients can learn and benefit from our experiences with Brittany's treatments, both the successes and the failures and the correct decisions and the mistakes, which is why I share and try to strongly encourage EVERYONE in the ASPS Community to do so. The more shared anecdotal treatment information which we all have, the more knowledgeable we can be in making critically important treatment decisions. Sadly, and inexplicably, many ASPS Community patients/families are unwilling to actively participate on this Board and share their personal treatment information, even though there is an option to do so anonymously, but yet they access and utilize the information which is so graciously shared by the few active participants on this Board. I am deeply appreciative of your participation on the Board dear Sharmaine, and Hope that you will continue to participate and share as your time allows.
With more special caring thoughts, healing wishes, and continued Hope,
Bonni
Update from my onc's chest tumor board from yesterday:
From looking at my scans I have 3 aggressively growing pulmonary mets. I just sent an email to my doctor for clarification but so far this is my understanding of the three mets:
1. Right lower lobe/next to esophagus - 2.6 cm, recommended treatment: surgery (VATS) with surgeon Dr. Chang, a pneumothorax will be created in the operation
2. Left lower lobe - 1.2 cm, recommended treatment: stereotactic radiation/cryoablation
3. Left upper lobe - 1.5 cm, recommended treatment: surgery with Dr. Chang
I told my onc that I want to go through with this, so as it will go, first is surgery with Dr. Chang to treat mets 1 and 3, then go through stereotactic radiation for met 2. At the moment I am waiting for a call from Dr. Chang's office. I was wondering if there are any good questions I could ask. So far I have "How long should I be ready for stereotactic radiation after the surgery?"
I hope everyone is doing well. I developed a cold from being caught in the rain walking home from the grocery store on Saturday. Coughing fits in class are so embarrassing haha.
Also, since I'm going ahead with treatment at Kaiser, I guess I'll hold off on seeking second opinions on treatment at City of Hope.
What is the reason the cryoablation is not suggested for all 3 mets? I would only finalize the treatment plan after consulting a very experienced cryoabaltion interventional radiologist to hear all the opinions. Cryo is less traumatic/damaging for the lungs and if performed by the skilled doc is the same reliable.
P.S. - I will move this topic to the personal updates now, where everyone's else is.
Dear Sharmaine, I am so sorry that you now have 3 aggressively growing lung mets. I am grateful that your oncologist is moving quickly forward with treatment plans but I, like Olga, question why much less invasive and less damaging Cryoablation is not being scheduled for all 3 of the mets instead of the VATS surgical procedure for 2 of them? Also, with the lung met procedures being scheduled, what is the status of your brain and bone scans? They will still need to be done soon since unfortunately sometimes when there is aggressive growth of ASPS lung mets, there can also be disease progression in other areas of the body. I Hope that your cold and cough resolves quickly so that you are physically as strong as possible before undergoing your lung met procedures. Take care dear Sharmaine and feel the embrace of my caring hugs, healing wishes, and continued Hope, Bonni
Lesions 1 and 2 are to be removed surgically by Dr. Chang via VATS.
Lesion 3 is to be treated by stereotactic radiation (SBRT), after surgery.
No pneumothorax is needed with VATS. Pneumothorax is needed for cryoablation, which we are not recommending.
Please let me know if you need additional information.
I'm sending him an email right now on why cryo isn't recommended. Also, is there anything I can say to push for cryo, as Debbie has said, "it has been proven to be the best treatment so far"? Bit worried here . Thank you for the virtual hugs, Bonni
I have a bone scan Mon. on the 21st. I just realized I haven't gotten a call back on the brain MRI.
Update: I looked up the recommended doctor's profile. Dr. Chang doesn't have cryoablation even mentioned. Worried.
My name is Sharmaine, I'm 21 and I live in Los Angeles, California. What motivated me to join this forum was a call from my oncologist last weekend. He called regarding my recent CT scan last Monday, good news is I seem to have a stable amount of lung mets (not sure about amount), but my largest pulmonary node has doubled to 1 in. He mentioned 3 options 1) Continue to solely monitor the nodes, his reasoning being I am not showing signs of symptoms 2) Be put on a prescription (Sunitinib I believe it was the drug he mentioned) 3) Enroll in a clinical trial. My oncologist recommended we continue scans since I'm "not showing any symptoms, so I don't have to jump on any pills." However, to me it feels like sitting around. I want to actively do something.