Daniel D in South Korea - Dx 2013

[Olga]

1. The best scan for the brain is MRI, will find the brain mets at the smallest possible and better treatable size, without any radiation damage from the scanning.
2. If they are planning to treat the remaining lung mets by the radiosurgery, it may induce the lung fibrotic changes not only in the treated areas but overall, be careful with that. May be cryoablation is better or may be Keytruda or other PD-1/PD-L1 drugs are avail. already off label, or you can wait for them to be approved. They shouldn't be able to treat the very small lung mets by the radiosurgery anyways. Or they left a bigger met somewhere where it was impossible to resect since they do not use laser tools?

[arojussi]

Pd1-inhibitors seem to work well in asps, but question is when to use them. All other cancer treatments work better when disease burden is smaller, but immunotherapies might be different. Asps can spread quite far, before there is high mutational burden. Immunotherapies work well in cancers with lots of mutations. If you try keytruda now it might not work, because your asps doesnt have enough mutations yet. I would only use keytruda once disease can not be managed with surgeries or ablations.

As far as I know ablations are indeed better for lungs than radiation. For brain mri is only scan that can reliably detetect mets before there are symptoms, this is important, because Stereotactic radiation has nearly 100 percent control rate for small brain metastases. (Smaller than 1cm in diameter.)

[Bonni Hess]

Dear Daniel, I am grateful that your right lung met resection went well, that they were able to successfully remove 18 mets, and that you are recovering well from the surgery. I agree with both Olga's and Jussi's knowledgeable advice regarding the importance pf having a brain MRI instead of a PET scan or CT scan in order to best detect any possible brain mets at the smallest most treatable size. Regarding the use of PET scans for your other monitoring scans, PET scans are notoriously unreliable and can produce false positive or false negative results. PET scans can show possible tumor activity, but CT and MRI scans more accurately and definitively show mets. Take care dear Daniel, continue to be as pro-active and knowledgeable as possible in monitoring and mamaging your disease, and keep in touch as you are able. With special hugs and caring thoughts, healing wishes, warm friendship, and continued Hope, Bonni

[D.ap]

Hello Daniel

Hope today finds you continuing to feel better after your surgery .

Mri for brain scans is definitely the best scan .
How big were the lung mets that were left by the surgeon ?
Where were they located ?
Your largest lung tumor removed was 19mm?
Will the medical folks be analysing the removed tumors ?

Write when able
Love
Debbie

[danieldew7]

Dear all,
Thank you for the constructive reply.
After tissue analysis, the biggest met is 17mm and there were actually 13 mets and the other 5 were inflammation tissues (The onco. only said that it is even normal for anybody to have few of those kind of tissues in their lungs).
I will meet my onco. today to discuss those 2 things as you suggest;
1. Brain MRI scan
2. Risk of lung fibrotic changes due to radiosurgery, and cryoablation, Keytruda or other PD-1/PD-L1 drugs option. They left some less than 10mm mets due to their location. If Pd1-inhibitor drug is an option, the timing could be right now.

Best regards,
Daniel

[Olga]

Good luck. The radiosurgery for a limited number of the lung mets might be ok, it is very effective on a smaller sizes, when the radio surgeon is experienced and the radio-surgical unit is good. the lung fibrosis is infrequent - but impossible to predict who is going to get it and who is not. We have members here who had it without a problem.

[danieldew7]

Dear all,

Last end of April, my feet got stuck and fell on my right shoulder.
I felt that there was something wrong and rushed into hospital immediately since the pain is unusual.
After few scans and check-up they told me that there is ASPS met all along this time left unnoticed until I fell and fractured my shoulder.
Even PET scan missed it.

I got surgery to remove the met, got steel plate to hold the bone forever, and undergo 3 weeks radioactivity treatment to prevent recurrence on the same spot.
On scan, my left lung is clear and the remaining mets which not resected were still there.

Best regards,
Daniel

[D.ap]

Hello Daniel

I’m sure sorry to hear of your shoulder and having discovered ASPS . It sure sounds like it was a good thing that you followed your instincts and had it looked at to be able to discover the tumor.

Have you had a bone scan yet ?


https://www.mayoclinic.org/tests-proced ... c-20393136

I hope today finds you feeling better after your surgery.

Love
Debbie

[Olga]

Daniel,
we always tell to our patients that PET is often not a sensitive scan for ASPS. Ivan gets a bone scan once a year, but - as you have found - the bone mets are often get discovered accidentally - either by pain or by the break in the bone. So as I understand, the bone met was in the shoulder?

[danieldew7]

Dear Olga and Debbie,

Yes and I thought it was a... fluke? To got tripped and fell on right shoulder out of all place, since my last 'slipped' accident that landed on my bottom was about 7 years ago on slippery ice on winter road.

The previous PET scan didn't detect it but after I broke my right shoulder and got PET scan they detected the mets.
I had bone scan last year (or 2 years ago) and I will ask it on my next appointment next month.
Thanks for the opinion.

Best regards,
Daniel D.

[D.ap]

HI Daniel
Truly glad you have the shoulder removal behind you .
FLukes . That’s a negatory

It’s done ( surgery etc) but not forgotten.
Map your metastatic travel
It’s important and your oncs sure need to take note
Love
Debbie

[danieldew7]

Dear all,
They find new mets on the back of my skull and left shoulder right in the middle of both collar bones. My onco suggest olaratumab instead of further surgery. Any suggestion or experience with this drug? As far as I see on this forum, I never find this one.
Thank you in advance.

[D.ap]

December 2015

Dear Olga and Bonni,

Thank you for the prompt reply. I also asked my doc. yesterday about the possibility of immunotherapy but he said that we have to wait until there is a promising clinical trial that have been done with ASPS patient, as there is still no result like that in this world for now. I will e-mail my onco. to add the brain scan as well.
Yesterday we also compared with the result from 2014 and the size is still the same but the number increase from 3 to 6 since 9 months ago. We are not sure if that is due to error in reading or the nodules are really increased.

After all, let's just enjoy this holiday- worrying is not going to help anything right? : )

Hi Daniel
The Med olaratumab
sounds quite filled with lots of side affects ..; /

Why did your doc choose this particular one?
The above quote stated he would look at an immune therapy that worked for ASPS..

[Olga]

Olaratumab is a fully human IgG1 monoclonal antibody selectively targeted against, and binding to, the human PDGFRα. It was recently approved for advanced soft tissue sarcomas in combination with traditional cytotoxic drug doxorubicin. There was no clinical trial done for Olaratumab alone. We have no information how active this regiment was in ASPS - soft tissue sarcomas have very high heterogeneity and mostly what works in other sarcomas does not work in ASPS. The clinical trial NCT02451943 that was used for an accelerated approval and STS overall was a phase 2 I think, ask your oncologist to obtain the full text results to review the tables and to find out if there was any success with it in ASPS - if they had any ASPS patients.
On the other hand, if the metastases are small, you can have a radiosurgery. Apply for the Keytruda or Opdivo and have the radiosurgeries for one or both your new mets to improve your chances with the immunotherapy. The full text to be used when applying for the immunotherapy is located in Systemic treatment topic, and you have to fight for it on a basis of the rare disease special considerations when the clinical trials are still not done. We have one member trying the locally injected immonotherapy in Spain currently (although we have not heard from him recently) and it might be a good option too.

[danieldew7]

Dear Debbie and Olga,
Thanks for the comments, it could save a life!
Yes both of you are right- even the onco told me that olaratumab is only his first suggestion, as I have to undergo few test before taking decision. What bugging me is one of the decision factor is that the drug is insured in here, which means there is uninsured drug including immunotherapy drug that he does not tell me.

On my next meeting, I would like to address these drug case for option, please tell me if I wrong or should add anything to tell him;

"Axitinib+pembrolizumab safe and effective - ctos 2017 annual meeting, reducing size 1 case
Anlotinib phase 3 pfr12w reached 57.23%
Atezolizumab (Tecentriq), Keytruda effective but there is individual met growth, work for ivan
Crizotinib 1 effective case
Cediranib, Sutent (Sunitinib), Votrient (Pazopanib) dont work but stabilize some cases (median 18y/o)
Nivolumab (Obdivo) reducing size 1 case
Doxorubicin, ifosfamide work for amanda for 17 years, not work for daria
Apatanib 1 out of 6 complete response
Olaratumab success or stable case??
Immunotherapy injection option??"

Thanks a lot in advance!