Sarah from Pakistan - Dx 2017

[arojussi]

I am sorry I keep repeating myself. With laser it is possible to remove over 100 mets. I had around 120 tumors removed this way. Ask your surgeon if this is possible with traditional surgery? I know one finish asps patient who had around 20 lung tumors removed with traditional thoracotomy. She is alive but if lung tumors ever return she most likely wont survive it. I met sarcoma specialiat 9 years ago. She started me on palliative chemo. It obviosly sidnt help. Immunotherapy is showing great promise in asps, but only for minority of patients. Immunotherapy is way more expensive than laser assisted thoracotomy, so you would have to get immunotherapy free based compassionate use. Lung surgery in America most likely isnt cheaper than laser surgery in Germany. Asps is so rare that even some sarcoma specialist dont know how to treat it.

[Olga]

Sarah,
as I understand you are deciding between the thoracic surgery locally versus consultation+systemic treatment in US?
Re. Thoracic surgery.
Is your thoracic surgeon saying that he is able to resect all the visible lung mets with the acceptable lung tissue loss - ask him to provide you a clear answer, if he is planning to be able to resect all the visible mets and what % of the lung tissue is going to be lost. With ASPS multiple small mets/wide spread all over the lungs it is usually not possible using conventional tools. Let me explain how it works and why people travel to Germany from all over the world to get the laser assisted surgery. When they use the conventional stapler assisted surgery, they are unable to cut the met only, instead the piece of pie shaped piece of lung with the met in it is cut and the edge is wrapped and stapled. Using laser they only burn the met in the middle of that segment piece, the temps are high so the edges around the met are fused together when the met evaporates, the all the lung segment is saved. It makes the "impossible" surgery possible. in some rare cases the location of the mets allows them to be removed by the reg. surgery - for example if most of them are located in some segment or lobe they just resect that. But in ASPS it is not typical, but the spread of the small mets all around the lungs is typical. So this is why many of our patients traveled to Germany. We live in Vancouver, Canada and the very good level conventional surgery is avail. here but we had to travel to Germany 4 times with Ivan and pay for it.
Re. sarcoma centers and consultation/promising treatments in US.
Most of our patients here are from US. You can save the money by just reading what they are having there and the similar situation. All the big sarcoma centers will start from charging you like 2000 for the consultation only, they often require to redo scans locally too and pay to the radiologists and oncologist to review them.
There is no promising treatment there too as all the approved treatments only work temporarily till resistance develops and are buying the time at the cost of possibility that the disease becomes more aggressive/faster growing after the resistance develops. There are only promising clinical trials, but you have to understand that the clinical trials have unknown results till it is done and some times has passed to see what influence it had on the life of the patients - sometimes it stops or slows the sarcoma but later it may grow faster and all the advantage is lost. You can try to enroll into the clinical trial and there are few that are promising, they are shown in the ASPS clinical trials topic. To participate in the trial, you need to travel and to live here for the prolonged periods of time, it is expensive. The cost of drug, trial scans and some expenses are covered but it is on case by case basis and you need to find out.
Have you looked into finding if there are the local offices of the makers of Keytruda and Opdivo in Pakistan and if there any compassionate/patient assistance program avail. to get these? They were prescribed to our patients in other places and if other options like surgery are not avail., you can try them.
Also ask your thoracic surgeon if the lung cryoablaton procedure is avail. in Pakistan.

[Sarah Ti]

Thank you so much for such detailed information.I had been really busy with travelling.Basically my surgeon said me to go US and give a try if there's something better their.I know laser is the best option for lung metastasis but my only concer was even after laser their would be no guarantee of mets not coming back.So if there's any systematic treatment that can stop the growth or spread and then I can have mets resected.I know its a hard decision to make but I have family in US who are really supportive and thinks that there might be some way out for me.I wish it was an easy decision to make

[D.ap]

Hi Sarah
That sounds like a really sound and good desicion .
We have quite a few clinical trusts being ran specific to ASPS.
My only recommendation is keep researching for the most promising trial that applies to your stage of disease and circumstances . ASPS is traditionally what's know as systemic, as you have stated ,but also an indolent
disease .

Getting scans on a regular basis is going to be your best place to spend your money as you will be able to see it's systemic spread and have time to plan your treatment proactively . Scans are expensive but very , very , very necessary .
Love
Debbie

[D.ap]

Here's where we've discussed what we all accumulatively
have learned from past history


http://www.cureasps.org/forum/viewtopic.php?f=1&t=819

[Sarah Ti]

Thanks a lot Debbie.I need to know any good sarcoma specialists I can contact here.Other than MD Anderson.I had my ct chest,abdominal and pelvic in july.Now I want an opinion from any sarcoma specialist soon.Hopefully if I can get that

[Sarah Ti]

I wanted to update regarding the treatment plan.I went to Dr Ronjay Rakkhit at oncology consultants(Houston)and he believes that 13 mets from both lungs being operated is not a good choice atm.So he has prescribed me pazopanib(Votrient)800 mg per day.He wants to see results for a month and they he would decide.I know that lung surgery has to take place at some point of time.Also,as I see other patients on sutent and other tki's gives me an impression that dr's are probably trying to see if drugs can stabilise/minimise the disease and later go on for surgery? I think I would want to have surgery but if some drugs can work before surgery then would it help mets not coming back after surgery? I know there are not set answers for it.But I hope I come to a better solution

[arojussi]

Your thinking is perfectly logical only problem is that my experience is, that systemic treatments rarely prevents mets from goming back after surgery. I tried interferon with no results at all. Finish synovial sarcoma patient tried yondelis and keytruda before lung surgery. These medicines temporarely shrunk tumors, so they were too small for surgeon to find. And 2 moths after surgery he had 20 lung mets again. Anyway I hope your response to tki will be long and your side effects minimal.

[arojussi]

Ask your sarcoma specialist how many asps patient has he treated before and with what kind of success? 75 percent of sarcomas are rhabdo, osteo and ewings all these cancers are very aggressive, so their treatment is complete opposite from asps treatment. Sarcoma specialist most likely has lots of experience treating these aggressive sarcomas were surgery isn't good option. Asps grows very slowly, so laser assisted thoracotomy in my opinion gives you best change of survival with best quality of life. For me pazo had several unpleasant side effects, so I would only use it after surgery is no longer option. Only 1 percent of sarcomas are asps tumors, so I doubt that your sarcoma specialist haven't seen it often.

[D.ap]

Hi Sarah
Glad you were able to begin a search of treatment(s) beginning in Houston.
Your doctor no doubt knows of the trials that are specific to ASPS.

https://clinicaltrials.gov/ct2/show/stu ... 2#contacts
Also immune therapies that have ASPS patients included


https://clinicaltrials.gov/ct2/show/NCT02636725
If any of these are of interest to approach in the future, especially the TKI trials , you might want to visit with your Houston doctor about how taking pazopanib might keep you from entering that trial ?
Just a thought. Not trying to scare you
Love
Debbie

[Bonni Hess]

Dear Sarah, I am sorry to have not posted sooner but I have been away from the computer with various travels most of the summer. Olga, Debbie, Jussi, and Mikko have all offered some excellent input, important shared information, and knowledgeable responses to your questions. I know that it is all very overwhelming and confusing, and unfortunately there are currently no definitive treatment options nor permanent cures, but I agree that at this early point in your disease, managing your disease with lung met laser surgery or cryoablation is probably the best treatment approach rather than beginning a systemic treatment which may only provide short term disease stabilization and a small amount of shrinkage of your mets. However, as Olga has said, each patient responds differently and there have been some patients who have had sustained long term treatment success with a few different systemic treatments, which makes the treatment decision even more difficult. Because ASPS is so extremely rare and many of the treatments are new, there is currently limited documented data and anecdotal treatment information available, so it is critically important to aggressively research and communicate/network with other ASPS patients/families so that you are as knowledgeable as possible before making any treatment decision and beginning a treatment. Based on my personal observations and knowledge, Pazopanib has unfortunately thus far shown only short term/limited success for those ASPS patients who have been treated with it, but as I have said, every patient may respond differently to every treatment. Before beginning your Pazopanib treatment I strongly encourage you to request documented data from your oncologist regarding the effectiveness of Pazopanib for ASPS patients. Also, if you have not already done so, it is very important that you have a brain MRI as well as a full body bone scan in addition to your chest/abdominal/pelvic scans, and that you continue to be vigilant with receiving regular scans to monitor the status of your disease. Take care dear Sarah, stay strong and pro-active in your battle, 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 35 year old Brittany diagnosed with ASPS 16 years ago in July 2001

[Sarah Ti]

Hello everyone,
Sorry for such a delay update here.This forum is really a blessing for asps patients as everyone here helps each other.As I told earlier that basically I'm from Pakistan but due to lack of treatment options I went to US for consultation.I started with Votrient(800mg) from September 2017 and I'm still on it.It has thankfully shown some shrinkage and stability.I had my bone scan which is thankfully clear too.Well some intense signals were found at my surgical area(Abdomen)in my last MRI.They said that they want to wait and see.Plus I didn't get any brain MRI done since diagnosis.So I've brain and abdomen MRI tomorrow.Scared and tensed.I hope the reports come out clear.My prayers for all asps patients fighting this battle.

[Bonni Hess]

Dear Sarah, Thank you for your thoughtful update. It is so good to hear from you again. Given the unpredictable nature of this insidious disease, it is always concerning when someone is out of contact for too long. I am very grateful that you have had disease stability and some met shrinkage with your ten months of Votrient (Pazopanib) treatment, but am sorry about the abdominal area concerns from your last MRI. I am grateful that a brain and abdominal MRI have been scheduled for tomorrow, and I will be holding you very close in my heart and special thoughts while holding VERY tight to Hope that the scans will show continued disease stability and no new mets. Take care dear Sarah and update this Board as you are able. With special hugs, most positive thoughts, healing wishes, deepest caring, and continued Hope, Bonni

[arojussi]

Change in signal is very unlikely to be asps. I had that in my jaw after surgery for bone met, but change in signal wasnt cancer. Very happy to hear from you.

[D.ap]

Hello everyone,
Sorry for such a delay update here.This forum is really a blessing for asps patients as everyone here helps each other.As I told earlier that basically I'm from Pakistan but due to lack of treatment options I went to US for consultation.I started with Votrient(800mg) from September 2017 and I'm still on it.It has thankfully shown some shrinkage and stability.I had my bone scan which is thankfully clear too.Well some intense signals were found at my surgical area(Abdomen)in my last MRI.They said that they want to wait and see.Plus I didn't get any brain MRI done since diagnosis.So I've brain and abdomen MRI tomorrow.Scared and tensed.I hope the reports come out clear.My prayers for all asps patients fighting this battle.

Hi Sarah

It’s great to hear from you!
The abdomen primary was resected with clear margins , correct ? How big was your primary and did the pathology report talk of a vascular and or other feed ?
Your surgery was in May of 2017?
So a little over a year out - post surgery , from primary removal.
Found and article on scan follow up and how and what the doctors are thinking / looking for post op ( imaging )

Post-operative imaging of soft tissue sarcomas

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2267691/

I tend to go with Jussi’s thought that the signal is nothing to worry about : ) However , I’m glad the docs are following up on the T1-to T2 variance .

You are due in for an annual brain MRI tho , in my opinion .
Til next time my friend