Alexander from Russia - Dx. Feb 2014

[D.ap]

Alexander

Good morning at least from state side. : )
How long have you been off the TKIs and what kind of growth have you seen in your lung tumors?
How's your weight ?
The reason I ask is it would be very important to reduce your tumor load before entering the trial as the lungs and any other organ need to help you fight and be in top shape.
Have you had abdomen scans or extended lung ct scans to view adrenal/liver ?

I'm sorry the doctors aren't on board with surgery
However they should always , always agree to help you with breathing issues and most certainly life threatening growths on adrenaline glands etc
As you know, ASPS is typically slow growing .
With that being said , the doctors HAVE to acknowledge that when found small it can and has time and time again in a lot of ASPS patience, stopped and killed the tumor by means of cyroblation and RFA

Write when able

This is the way Olga put it to you in an earlier
post to you -

"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."


Love
Debbie

[Olga]

Hi Alex, the most promising lead we got from that time you were away was an immunotherapy advance - a PD-1 or PD-L1 trials, such as
MEDI4736 (trials only with few ASPS Canadian or US patients responding) http://www.cureasps.org/forum/viewtopic.php?f=73&t=1130

or Keytruda (approved for some other cancers) but prescribed off label with few ASPS Chinese patients responding - http://www.cureasps.org/forum/viewtopic ... &start=225

[alexander]

Dear ASPS Community Friends,

I would like to share my news with you.

First of all, Olga and Debbie, thank you for your latest comments.

I have been on Pazopanib (for the second time) since January 2016. I have very many tumors and mets (shoulder, spine, thigh, lungs). Some of them responded, some not. For example latest scan showed that most lung mets got 2-4 mm bigger vs. April. Hence my doctor decided to stop Pazopanib treatment.

The good news is that I took tests for ALK, C-Kit and BRAF mutations. My tumor turned out to be ALK positive. It means there is one more group of TKIs worth trying. The doctor prescribed me Crizotinib. Although it is a bureaucratic procedure to get it I hope to start treatment in about a week.

What do you think about it?

[D.ap]

Morning Alexander

It's truly good to hear from you. I'm sorry for the progression news. How are you feeling ?
Was the tumor being analyzed taken from your lung that tested positive for the ALK composite?

Remind us what you used between 2014 other than Pazonib and Zometra ?

How is the vertebrate tumor responding in all the Med useage ?

The Crizotinib has been tried by a few of our friends. Some reported upto 10 months stability.
Go to the personel section and go to the search and type in "crizinib " to locate discussion on the Med
2013 Willem from the Netherlands -clinical trial that maybe your onc can get results from ?

http://cureasps.org/forum/viewtopic.php ... Crizotinib

With what ever you decide I sure hope you the best of luck

Please check in again soon and give us an update

Love
Debbie

[Olga]

The clinical trial for crizotinib in ASPS seems to be ongoing in Europe as the phase 2 is open now:
https://clinicaltrials.gov/ct2/show/NCT ... oma&rank=9
so probably no results yet.

[Bonni Hess]

Dear Alexander,
It was so good to hear from you but I am so very sorry for your failed response to round 2 of the Pazopanib and for the increased growth of some of your mets resulting in you having to discontinue the Pazopanib treatment. Is there any chance that you could have some of your numerous widely disseminated mets surgically removed or ablated to try to reduce your body's tumor burden to better enable a systemic treatment to work? I am grateful that you have another treatment option based on your positive tumor tissue test results for ALK, and am very Hopeful that Crizotinib will prove to be very successful for you in stabilizing the progression of your disease and shrinking/destroying all of your mets. Unfortunately, thus far those few patients on this Board who have tried Crizotinib have not had very significant, sustained, nor long term success with this drug, but as we all know, each patient is different and each patient may have a different response to the same drug. It is very encouraging that your tissue tested positive for ALK which is targeted by Crizotinib. In Brittany's case, her tumor tissue tested high for VEGF-R which is targeted by Cediranib and thankfully she has had a very successful response thus far to the Cediranib, whereas her tumor tissue tested low for C-Met and she unfortunately had an unsuccessful response to ARQ-197 which targets C-Met. Have the doctors provided you with any documented data regarding the effectiveness of Crizotinib for ALK positive ASPS patients? I Hope that you are feeling good and asymptomatic despite your multiple mets, and that you are able to remain physically active. Please take good care of yourself and keep the Board updated on the status of your Crizotinib treatment.
Reaching out to embrace you with special hugs, caring thoughts, healing wishes, warm friendship, and continued Hope,
Bonni

[alexander]

Dear ASPS Community Friends,

I hope this year will be better than the previous one for all of us.
Unfortunately my treatment is not successful. Crizotinib did not help me. Now I am on Sorafenib 800 mg daily but the result is unknown. I will know CT scan result in the mid of January. I feel much worse than half a year ago.

Maybe you could give a piece of advice regarding drugs that could help me.

My treatment in brief:
Feb'14 - May'15 Pazopanib (worked for more than a year)
Jun'15 - Nov'15 Cediranib (worked for a very short period of time)
Nov'15 - Jan'16 Sunitinib (did not work)
Jan'16 - May'16 Pazopanib (2nd round, partly worked)
Jun'16 - Oct'16 Crizotinib (did not work)
Oct'16 - present Sorafenib (still unknown)

[D.ap]

Hi Alexander
I'm sorry to hear of you not feeling well.
Is it because of breathing or from the TKIs do you think?

How's your weight going for you ?
The immune therapy meds , at least with Nivolumab, are 100 times better than TKIs for Josh. In regards to malaise.
Have you had a conversation ablout trying them instead ?

We are scheduled for MRI, and 2 CTscans on January 23 and are hoping to see that Joshua's liver tumors reduced and his skull tumor has been effected.

Also, these were the sizes and places you reported back in 2014 to your current tumor places and sizes at that time

Some of you asked about the sizes. The current sizes of tumors: soft part of right thigh (primary) - 68x36x46 mm, left scapula - 63x37x56, right flank-bone - 40x27x38 mm, dozens of metastases in lungs - 2-14 mm each, Th4 - 25x15 mm. My tumors are encapsulated, they are not visible as a lump.

What are you seeing now?
Let us know the answers to the above questions when you can

Love
Debbie

[Olga]

hi Alex, I am sad to hear that you are feeling worse, but there are few new immunotherapy drugs that our patients even in a very advanced ASPS state currently benefiting from both in a clinical trial setting or as Expanded Access Program. You need to find out if they are avail. on a clinical trial in Russia
They are from the class of the Immune checkpoint inhibitors (ICI).

1. Keytruda (pembrolizumab is generic name). Merck had it on trial in Russia so you need to find out if you can get in. If not there is their expanded access program
http://www.merck.com/about/eap_faq.html
The numbers for outside the U.S. are +44 (0)1932 824 123 or via e-mail at mk3475row@idispharma.com.

2. Opdivo (Nivolumab). Bristol-Myers is the maker.

We have new forums here for the clinical trials in US and the patients experiences:
http://www.cureasps.org/forum/viewforum.php?f=73
and for the off label use trough the expanded access here:
http://www.cureasps.org/forum/viewforum.php?f=73
The response to Keytruda is dramatic in some of the patients. I know that it is about $12,000 for a month supply if it is bought without assistance or insurance.

[D.ap]

Hi again Alexander

I was wondering the reason with choosing Sorafenib ?
Looks like it targets/inhibits proteins not including the ALK protein /gene that you tested positive to?