Alexander from Russia - Dx. Feb 2014

[alexander]

Dear Olga,

I was very encouraged to hear your opinion!!!

The Cediranib dose of 30 mg per day is standard, at least for the trial in which I participate.

Thank you for support!

[alexander]

Dear All,

Let me remind my story in brief and share the latest news. ASPS was diagnosed in February 2014, primary tumor in soft part of right thigh, mets in lungs (dozens in both lungs), vertebra Th4, left shoulder, flank-bones, thigh-bones. Votrient 800 mg daily since February 2014. Votrient stopped working after 1 year 2 months of the therapy. Cediranib clinical trial - 30 mg daily since June 2015. After 24 weeks progression of disease is detected, I am out of the trial since 13th November. The trial doctor recommended to stop any therapy for 2-4 weeks and then start a new drug. What drug do you recommend? Is Sunitinib the best option or there are some others to choose from?

If you have any questions to clarify my situation I would be glad to answer them.

Thank you for support!

[D.ap]

Hello Alexander

I'm sure this must be really disappointing and I am really sorry to hear of the progression

However , I like that you are moving forward to what's next

Was it the primary that showed growth ?
You had 3 scans during the trial and I assume they were of your leg , back and lungs ?
Don't forget of your other important scans.
Will you be going back on Zometra ?

Love
Debbie

[Olga]

Alex, where is the progression? With TKI drugs we had numerous reports that sometimes there is a progression in some spots only - like one dr said "they are not being a good team players". So these spots have to be treated locally. But it is to late anyways and trials in the Phase 2 do not allow to treat the spots selectively, unfortunately. May be you should try to treat the most aggressively growing location locally?
We are getting some interesting reports re. immunoitherapy drugs:
http://www.cureasps.org/forum/viewtopic.php?f=73&t=1130

[Bonni Hess]

Dear Alexander, I am so sorry for your disease progression and resulting disqualification from continued participation in the Cediranib Trial. Since, according to your previous posts, you seemed to have had only mild/ limited negative side effects during your randomized Cediranib Clinical Trial, I am wondering if you were actually receiving Cediranib or a placebo drug? Did the Clinical Trial doctors confirm to you that you were receiving Cediranib? I continue to strongly feel/advocate that your primary thigh tumor needs to be resected, even if that might unfortunately require amputation of your leg, for all of the reasons that I have given in my previous posts. My 14 and a half year of observations have been that systemic treatments are unfortunately unsuccessful in providing sustained disease stability and significant tumor shrinkage when there is still a primary tumor disseminating new tumor cells into the bloodstream. I Hope that removal of the primary and any other resectable mets is something that you can discuss and pursue with your doctors to help reduce your body"s tumor burden and strengthen your immune system to help better fight your disease with a new systemic treatment. Take care dear Alexander and keep the Board updated as you are able. With special caring thoughts, healing wishes, and continued Hope, Bonni

[alexander]

Dear Olga and Debbie,

Thank you for prompt replies.

Unfortunately all the lesions grew but the biggest progression was in lung mets, and moreover some new lung mets emerged. So the lungs were the reason for me to be out of the trial. The growth of the other lesions is within 20% which is considered to be stable. I am not sure if lung mets could be treated locally keeping in mind there are dozens of them in each lung, and there are many other lesions in my body. Could you please share your thoughts.

Zometa was allowed during the trial but the trial doctor did not find it necessary at first. But some months ago the pain in my shoulder started so the doctor recommended to continue it. I had Zometa dropper 2 weeks ago and will continue to have it once in 4 weeks.

Olga, when I click the link you provided it is written "You are not authorised to read this forum" (I am logged in). Could you please provide another link or share the info here?

Debbie, yes, you are right with the scans I had, and many thanks for reminding to do other important scans.

[alexander]

Dear Bonni,

Yes, the trial doctor confirmed that I was receiving Cediranib. Thank you for your insights, we will try to discuss it with our doctor.

[alexander]

Dear All,

Could please comment what you think of the following drugs:

Bevacizumab
Crizotinib

[D.ap]

Alexander
Case study with a 90 year old ASPS patient
Your oncologist maybe able to log into the journal

http://mobile.journals.lww.com/anti-can ... icle=00011

[Olga]

Alex, I fixed the forum at that link, I just forgot to define a permission when creating it - so it should be accessible now.
Bevacizumab - we had 1 patient who was using it, with the good response - shrinkage - but it was short lived and the resistance developed rather fast.
Crizotinib - we had few people using it without visible success. If I forgot something, other people may correct me, please.

There was a case when gemcitabine weekly was used with the success - after initial non-response the patient continued to stay on it and all mets regressed after 18 months on the drug. Gemcitabine is one of two drugs from the combo GemTax approved for second line chemotherapy treatment before for the soft tissue sarcoma, not it is used less as everyone is trying TKI.
Also there is a newer drug trabectedin - Yondelis in US - we had very limited experience with it in our community, but one small study from Germany found it pretty effective in ASPS patients:
Efficacy of trabectedin in patients with advanced or metastatic alveolar soft-part sarcoma.
https://www.ncbi.nlm.nih.gov/pubmed/22868503
Both of this options are pretty toxic - these are the cytotoxic drugs, it is how they work.

Bigger lung mets should be cryo or RFA ablated - they have an ability to pose a risk for your life faster - if they grow faster than other and located somewhere where they can block an air or blood supply.

[alexander]

Olga,
Unfortunately I still cannot open your link with immunotherapy.
Many thanks for the rest.

Debbie,
thank you for your link.

[Olga]

try again, let me know.

[MartinBube]

Hi Alex,

I see that you are pursuing systemic treatment still.
Have you considered the option for surgery for removal the primary, although that would have some serious impact on your quality of life as Bonnie suggested, and afterwards to continue with any systemic treatment you will choose.

Personally I think you should consider this option.

Do you believe in case you surgically remove the primary you could get back in a trial again?

Stay in good spirit and Stay Strong

[alexander]

Dear ASPS Community Friends,

I am writing to share my news with you.

The happiest news is that my son was born in December!!! Now he is 3 months old. I and my wife are so happy with him. Of course, we are busy now but it is a great pleasure to spend time with our child and see him growing. It was our dream for a long time, and finally it has been fulfilled.

After the end of Cediranib trial I started taking Sunitinib 37.5 mg in Nov'15. Jan'16 scans showed that unfortunately Sunitinib was not working. My doctor decided that the next drug is Pazopanib for the second time. The first time I took Pazopanib was from Jan'14 to Apr'15. I am going to have scans next week so would like to ask you some questions about the options for the future.

There have been many articles in mass media regarding the advances in cancer treatment using biotherapy and immunotherapy. Are these advances applicable to ASPS treatment?
There has been also information about personalized chemotherapy selection, for example http://oncofinder.com. Do you have some sort of this in your countries? Is it applicable to ASPS?
The same question about virotherapy.

Maybe there have been some extraordinary news since Nov'15 when I last read this forum. Could you please provide the links or describe briefly here.

What do you think about Axitinib and Pembrolizumab trial in Miami which has just started?

Many thanks for your insights!

P.S. Bonni and Martin gave me a piece of advice to consider surgery for removal the primary. Unfortunately our doctors refuse to do it.

[D.ap]

Hello Alexander
What wonderful news of a new baby !
We have a new grand baby born in October of 2015 too. What a joy and wonderment to life they are for all : ) !
The clinical trials of immune therapy were posted in February newsletter --

http://www.cureasps.org/new-asps-clinic ... -sarcomas/
Using immune therapy and TKI concurrently.

In talking with some folks who have taken and or been on the different immune drugs,they are not without side effects so run them by your oncologist throughly before you think of entering trials .
It's truly good to hear from you

Congratulations on your new baby
Love
Debbie