Sharmaine from Los Angeles

[sharmeebles]

Phew, hey all! Glad to see the site up and running again.

Some updates: The surgery and my recovery went well At first, I had a lot of difficulty breathing normally and sitting/lying down without assistance, but now I'm taking deep breaths and planning on taking a short hike this weekend. The pathology report noted that an extra 1.5 mm met was able to be taken out since it was right next to the 2.5 cm met in my right lung's lower lobe

Email from my onc: 1) no areas suspicious for metastatic disease from the bone scan 2) the brain MRI shows no abnormalities, 3) There are post-surgical changes in the area of my leg surgery.

I'm about to send an email to my onc about what these "post-surgical changes" are, and to check in with when I should be receiving SBRT for the met deep in my left lung.

All in all, feeling pretty super. Sending this positive energy to you all.

[D.ap]

Hi Sharmaine

Thanks for checking in sharing with us all such uplifting news. : )

Yea for the brain scan

I suspect the post surgical report is talking of the healing going on
Was the surgery performed with positive margins initially?

So the lung tumor left, is centrally located ?
Has your onc discussed the pros and cons of SBRT?
I know we've talked about cryo however my understanding is it can have far less latent effects, no rib damage, but maybe located in a region that can't be safely frozen without extra precautions?
In the mean time hugs to you and have a beautiful ( and safe) hike.

Love
Debbie and family

[Bonni Hess]

Dear Sharmaine,
Thank you for your thoughtful update with the wonderful news of the successful outcome of your VATS procedure and your VERY GOOD brain and bone scan results!! I am so glad that your post op recovery is going so well and that you are feeling strong enough to go hiking which will be helpful in strengthening your lungs as has been so well demonstrated by our ASPS Community patient Ivan who inspirationally and successfully practices a very active physical and exercise Life style to maintain his lung function despite his numerous lung met laser resections and Cryoablations. I continue to question why your doctor is advocating and planning SBRT for your deeply located left lung met in view of the previously discussed on this Board concerns about ASPS lung met SBRT versus Cryoablation. If the SBRT recommendation is based on insurance coverage denial for Cryoablation, there is substantial documented anecdotal data available on this Discussion Board regarding the success of Cryoablation if you would like to appeal the insurance company decision and further discuss the planned SBRT with your oncologist.
In the meantime, take joy in the successful outcome of your lung met surgery and your VERY GOOD and relieving bone and brain scan results, and have a beautiful happy Springtime as you continue your post-op recovery and regain strength and energy.
Sharing the great joy of all of your good news with happy hugs, special caring thoughts, healing wishes, love, and continued Hope,
Bonni

[sharmeebles]

Hello all! Updates from my past week:

4/21: SBRT Consultation meeting with a radiologist: The plan for me is to have me go through 5 sessions of SBRT, and the main goal would be to stunt the growth of the met deep in my left lower lobe. If shrinkage appears, that would be great. In the meeting I asked about the chest and tumor board meeting in March and what they all thought about cryoablation, and again, it seems general consensus among the doctors that at least for now, with the location of the met, cryo wasn't recommended. I am still holding onto that treatment option. I am trying to understand how the film department works at Kaiser. I left a message weeks ago to obtain a CD of my recent CT scans, and I didn't get a call back. Protocol isn't clear online or anything.

4/22: Regular diagnostic CT scan. I love how fast these scans are. I was happy to zip in and out of the CT machine, as my last scan (brain MRI) was very uncomfortable. I am scheduled for another CT on Cinco de Mayo for radiation planning, but I need to make a call tomorrow as to clarify why they can't just use the CT scan I just went through two days ago.

Happy loving wishes to all,
Sharmaine

[Olga]

Sharmaine. we usually request the copy of the CD at the CT department, ask them when you are there what the procedure is. You will probably have to go through the Patient's records.
You are right to try to reduce the number of the CT scans you are having.

[D.ap]

I certainly agree with Olga on the ct scan exposure Sharmaine

http://www.acr.org/Quality-Safety/Natio ... x-Registry

Fortunately and unfortunately , our ASPS sarcoma grows so slowly that scans generally are one of the ways to find it early to eliminate it.

Love
Debbie

[Bonni Hess]

Hi Sharmaine and Happy TGIF
Thank you for the updated information. Did you decide against seeking a second opinion from Dr. Littrup or Dr. Suh regarding the possibility of Cryoablation for your deeply located lung met? My concern remains that your doctors may not be familiar/experienced enough with Cryoablation to know if the procedure is possible, and I think that it would be strongly advisable to at least consult with an experienced interventional radiologist like Dr. Littrup or Dr. Suh to confirm what your doctors are saying about Cryoablation not being an option due to the location of the met. You said that you are still holding onto Cryo as a treatment option, but if the SBRT is somehow unfortunately unsuccessful in shrinking/destroying the met(s), you should at least confirm that Cryo would still be a treatment option. These treatment decisions are critically important due to the possible permanent and irreversible side effects of the treatments, and all treatment options and their side effects need to be thoroughly researched and discussed before moving forward with them.
In the meantime, have a good and relaxing weekend, and know that you are held very close in my heart and my most caring thoughts.
With deepest caring, healing wishes, love, and continued Hope,
Bonni

[Bonni Hess]

Dear Sharmaine, It was such a special joy to personally meet you and your dear mother at yesterday's wonderful ASPS Day of Learning and Workshop in Miami, and I am so grateful that you were both able to attend it together as there was so much important and valuable ASPS specific information presented and shared by the many very knowledgeable ASPS specialists as well as some patients/family members. I am so sorry and embarassed that my memory somehow prevented me from recognizing that you were the Sharmaine who I have communicated with previously on this Discussion Board, and am sorry too that the full speaker schedule and busyness of the Workshop kept us from discussing more about your current situation. We somehow lost contact since your last Board update was in April, so I Hope that you will update the Board when your time allows and actively participate on the Board whenever you are able because shared information remains one of our strongest weapons in fighting this extremely rare disease. I am so glad and grateful that you seem to be feeling good and doing well I Hope that you and your mother had a good and safe return flight to California. Please take care and keep in touch as you are able. With special hugs, caring thoughts, healing wishes, much love, and continued Hope, Bonni, still in Miami

[sharmeebles]

Bonni! It was truly a special joy to meet you and Brittany in Miami this past week. It was inspiring to finally be in a room with such knowledgeable, motivated, and caring people. And I deeply appreciated that you took the time after the busy conference to answer my quick questions and lend hugs!

Thank you for helping me realize that I have not updated! College hustle and all that. The only update I have after the SBRT treatment is that my mets are stable and no new ones have popped up

With warmth,
Sharmaine

--
P.S. I found it an especially touching moment when Brittany shared her scar to find that ours are in the same leg and have healed in the same fashion. Although, given that I was wearing tights at the time, I regret I couldn't share my scar properly and completed the movie moment haha!
I remember in 2014 that I did not fully comprehend the surgeons' warning of the nature of my scar after my resection of my primary tumor. The way I understood it was I thought my thigh would look the same except some discoloration on top. But when I woke up after that surgery in April to find what looked like a shark bite, leaving a flat, gorey, unresponsive limb, my heart broke. I had the saddest summer that year hating the way I looked in mirrors and being unable to freely roam around without assistance while recovering. But now, even though I may have little insecure moments about my figure from time to time, I'm starting to see and feel strength, inspiration, and maybe even pride in my scar. Seeing Brittany at the conference with such a drive, participating during the presentations was so admirable. When she shared her scar and also when she gave me a great hug immediately after hearing I was diagnosed at 19 just like her are the most prominent moments I will remember from the conference.

[Bonni Hess]

Dear Sharmaine,
Thank you for your thoughtful post and very gracious words which truly touched our hearts. You are a wonderful young woman with a special gift of being able to beautifully express yourself. I am so grateful that you found inspiration for your battle from Brittany's sharing. As I have always said, one of our strongest weapons in fighting this extremely rare disease is the shared anecdotal and researched information, support, and encouragement that is available through sharing with each other within our ASPS Community and on this CureASPS Discussion Board.
I am very grateful that your mets are currently stable and that you are apparently moving forward with your college studies which is very admirable and humbling in the midst of your ASPS battle. As I told you during our discussion at the ASPS Workshop, I would not personally recommend that you pursue any type of systemic treatment at this time as long as your disease is stable because there are unfortunately currently no permanent ASPS cures available, but I strongly recommend that you maintain a regular scan schedule including at least once every six months chest/abdominal/pelvic scans (preferably chest CT and abdominal/pelvic MRI's to prevent radiation exposure/damage to your abdominal and pelvic organs), and an annual brain MRI and full body bone scan. It is critically important to be vigilant with your scans and very pro-active in personally reviewing and discussing the scans with your oncologist as well as obtaining CD copies of the scans and written copies of the radiologist reports for your own personal records and comparison with previous scans. Some oncologists inexplicably/inexcusably advocate waiting until the patient has symptoms to do some scans, but you DO NOT want to wait until you become symptomatic because ASPS mets need to be treated at the smallest most treatable size for the best chance of a successful outcome.
I know that your young Life is very busy dear Sharamaine, but I Hope that you will be able to actively participate on this Board when your time and the situation allow, and that you will keep the Board updated as you are able. In the meantime, take good care of yourself, have a beautiful California Fall, be as knowledgeable as possible about your disease, know that you are not alone on your ASPS journey, and don't be embarrassed about your primary resection scar--YOU are a beautiful young woman inside and out, and your scar is truly a badge of courage that shows the World that you are a warrior who has courageously faced and fought your disease to rid your precious body of a part of this monster!! Stay strong, keep on fighting, and let the bright light of Hope guide you through each day.
Reaching out across the miles to share special hugs, caring thoughts, healing wishes, much love, and continued Hope,
Bonni

[sharmeebles]

Hello all! At my last onc appt, I was presented with the MATCH trial, my onc said this is the latest tech towards personalized treatment, looking at tumors at the molecular level and putting that tumor through several drug screenings.
here is a link: https://www.cancer.gov/about-cancer/tre ... /nci-match
What is needed however, is a sizeable tumor sample for a biopsy (I forget exactly what size) and I told my onc that this sounded counterintuitive since we want to avoid significant growths in ASPS mets. I made a joke to my onc saying I wish tumors were like gum, so you could just stick them on together as time goes on, not worrying about freshness until you can get your tumor gumball as big as you need to. My onc also added that in a year, the MATCH trial, for those cancers that do not match up with an effective drug, the trial will utilize immunotherapy treatments.
I think the ideas of this was similar to one presentation at the ASPS Day of Learning. I want to say the presenter was Charles Keller?
Has anyone else heard of the Match Trial?

[Bonni Hess]

Dear Sharmaine,
Thank you for the thoughtful shared information about the MATCH Trial. The only knowledge that I have about the MATCH Trial is the information that was presented about it at the Miami ASPS Day of Learning Workshop by Dr. Charles Keller from the Children's Cancer Therapy Development Institute in his very interesting and informative presentation about Preclinical Drug Screens and Target Validation.
Regarding the need for "a sizeable tumor sample for a biopsy in order to look at tumors at the molecular level and put that tumor through several drug screenings", is it possible that your preserved primary tumor tissue could be used, or is fresh tumor tissue required? Please keep this Forum updated as you are able regarding your eligibility for, your potential participation in, and any other information that you may learn about regarding this promising new Trial.
Take care dear Sharmaine and keep in touch as your time allows.
With deepest gratitude for your thoughtful sharing, and with special caring thoughts, healing wishes, love, and continued Hope,
Bonni

[sharmeebles]

Hi all, it has been quite a long time. I hope you all are doing well.

I just finished up my first junior year (I transferred from community college) at UCLA! It has been a stressful year scattered with lots of meaningful memories, and I am thankful for each moment. I am currently still in school, taking classes, and (struggling) to find my first job lol.

I am writing here to write a little update on my condition. Up until now it has just been routine CT scans and MRIs.

My latest CT scan revealed a met approaching 2cm. For context, my last chest surgery, which used VATS and SBRT, treated 4 mets (1. Right lower lobe/next to esophagus - 2.6 cm, surgery (VATS), a pneumothorax will be created 2. Left lower lobe - 1.2 cm, stereotactic radiation/cryoablation 3. Left upper lobe - 1.5 cm, VATS 4. Attached to one of the other mets - less than 1 cm). In addition there is a small 9 mm met that can be removed in the future.

My onc presented my case at his tumor board and it seems I have two options for treatment:
1. Cryoablation for the current met approaching 2 cm. Issues: Given the location of the met is near the previous surgery, the scar tissue may make it difficult to remove. Stereotactic radiation would not be advisable as it is too close to the heart.
2. Find a clinical trial. The MATCH trial is still on hold.
3. Continue to monitor.

I'm leaning towards going ahead with the cryoablation. I'm trying to hold off on clinical trials as much as I can. Although, I am wondering if it would be safe to wait until the 9 mm met gets large enough for surgery to start any operation. If anyone has any advice that is welcome. Thank you for your time.

Much Love,
Sharmaine

[Olga]

Hi, it is good to hear that you are doing well almost two years after the previous post.
To answer your question. You are saying that "Cryoablation for the current met approaching 2 cm. Issues: Given the location of the met is near the previous surgery, the scar tissue may make it difficult to remove." - I am not sure why are you talking about the removing? The cryoablation is the percutaneous procedure, not a surgery. The nodule is not removed but frozen and left in place. The scarring next to it has to significance whatsoever for this type of procedure.
Why do you want to wait for the other met to grow? To ablate both of them at once? Are they located next to each other?
The best ablation size is 10-15 mm - this is the size when the success of the cryo is close to 100% if the interventional radiologist is experienced. 20 mm is the size that you should not wait. It is still good but starting to be not ideal.
With the minimal metastatic load as yours you might be right just treating them one by one.

[arojussi]

Hello. I had cryoablation for met near the heart in 2012. It was like walk in the park, because of Littrup`s skills. So I would use that approach if I would be in your situation.

Immunotherapies are working in asps as well as they work in melanoma. Nobody knows why as immunorherapies usually work well against tumors with high mutational burden and asps usually has little mutations. As these drugs are only available in clinical trials or in compassionate use they are usually used as a last resort. They might work against asps in its earlier stages. I dont think we have enough experience to say, that they would work well against early stage asps and once you try them once it can be very hard to gain access to immunotherapies later.