Alexander from Russia - Dx. Feb 2014

[alexander]

Dear All,

Thank you very much for your links, opinions, and insights. Your support is invaluable for me!
To sum up:
- There is Cediranib trial lead by Prof. Judson in the UK, Spain and Australia. I think it is an option for me.
- There is Cediranib/Sunitinib trial in the USA and Canada but patients must not have prior treatment with pazopanib. It is not an option for me.
- There is a chance for me to make a surgery when I do not take any medicines. It is always a challenging question, and we will try to get more opinions from doctors.
- There is no info from patients on cabozantinib.

Some answers to Debbie's questions:
- I have not had any surgeries/radiosurgeries/ablations/cyberknife
- Votrient 800 mg every since February 2014. Stopped in April 2015.
- Zometa 4 mg once in 28 days since February 2014.
- New lung mets, growth of 2 major tumors at about 5-10 mm, growth of lung mets. It is really obvious that Votrient is no longer working.

Sorry for being so short. I am working on making right decisions and will inform you about my next steps.

[Olga]

Alex, if you find in your research that nothing from above is feasible, you can try to get your local oncologist to put you on Sunitinib - Sutent - it is an approved drug, should be avail. in Russia and there are documented ASPS responses to it (few articles). Since you had a long term response to pazopanib, chances are good that you will get a response to Sunitinib. And even more - if there is a resistance to Sutent eventually develops, if you restart pazopanib, the chances are that you can get a response to it again - I have seen the articles about it.

[Bonni Hess]

Dear Alex, I Hope that things are going well and moving in a positive direction with your search for treatment options and your efforts to make the right/best treatment decision. You said that it is "always a challenging question" regarding surgery to remove your primary and other tumors, and I am wondering if it is challenging because of difficult/dangerous tumor location or because the doctors are resistant to pursue surgery because of your already extensive disease metastasis? I Hope that you will be able to find a doctor who is willing to at least surgically remove your large primary and your scapula tumor if it is resectable based on the need to reduce your body's tumor burden to better enable whatever systemic treatment you ultimately decide to take to be more effective and to have a greater chance of success. I know that too many doctors unfortunately feel that if the disease has already metastasized there is no reason to resect individual tumors, but based on my almost fourteen years of ASPS experience and extensive research, observations, and networking I strongly feel that this is an erroneous and flawed attitude and approach to fighting this very challenging disease which needs to be fought with every available weapon including surgery/ablation/radiosurgery of all resectable and treatable mets. My very best wishes are with you in this endeavor and I will be anxiously awaiting your next update and treatment decision. With special caring thoughts, healing wishes, and continued Hope, Bonni

[alexander]

Olga, Bonni, thank you very much for your support.
Olga, yes, Sutent is the only option available in Russia for me now. But I try to take it later. If you have the link to the article about the second response to Votrient (after Sutent) could you please share it.
Bonni, in my case the two factors you mentioned are present - difficult tumor location and already extensive disease metastasis. Nevertheless we always raise the question about surgery at the discussions with doctors. Your posts motivate us to do it

[D.ap]

Hi Alex

I am so glad to hear that this new day has brought you hope and motivation
It's not always easy to muster up those two things as this cancer tends to beat us down.

I have found this comparative study on pazo and sutent in hopes that there might be a link to answer the reuse of pazo after being off sutent whenever you make that choice.


http://www.nejm.org/doi/full/10.1056/NE ... cleResults

So with this next decision you might be thinking of surgery?
Any surgery performed here on out will show how the pazo and zometa are affecting your tumors and relieve your body of the added tumor load.

Write when you can.

Love
Debbie

[Olga]

Hi Alex, I found this trial in Russia - do you know anything about it?
https://clinicaltrials.gov/ct2/show/NCT ... ma&rank=38

[alexander]

Dear All,

I would like to share with you my latest news. I am participating in a Cediranib trial in Spain. The trial design is that 2/3 of patients receive Cediranib and 1/3 receive placebo. Those on placebo with disease progression start taking Cediranib. Neither I nor my doctor know if I am taking Cediranib or placebo. More info here https://clinicaltrials.gov/ct2/show/NCT01337401
I started the trial on 4 June. After 7 days I am not having any side effects. Does it mean I am on placebo or more time is needed to know it for sure?
My trial doctor does not see the reason for continuing Zometa during the trial. I wonder if you have any thoughts on that. Is it a common practice that those with bone mets receive Zometa in addition to the main drug?

[alexander]

Regarding your latest comments. Just FYI my Russian doctor's opinion.
Olga, thank you for your link. My doctor is very skeptical about the trial in Russia you mentioned.
Debbie, thank you for your link. My doctor says in his experience there was no response to Pazopanib for the second time (after Sunitinib).

[D.ap]

Hi Alex

It's good to hear of your involvement in the ced trial
Will the progress be checked in 24 weeks or will it be sooner?
Our thoughts and prayers are with you.
Thanks for the update
Love
Debbie and family

[alexander]

Hi Debbie,
Thank you for your support. Tumor assessment is every 8 weeks.

[D.ap]

Good night
Thanks for the info
Glad to hear of
Ct without or with contrast ?

You rock
Love to you
Debbie

[alexander]

Hi debbie,
Chest CT, shoulder and thigh MRI without contrast.

[Jorge]

Hi Alexander,
Glad to here you're accepted in the Cediranib trial. I hope you're in the 2/3
Do you have any side effects now? What dosage are you taking? You can find the side effects in Cediranib page: http://www.cureasps.org/forum/viewforum.php?f=45.
In summary, the side effects of Cediranib are very slight--hypertension, diarrhea, abdominal pain is the most common side effects.

Wish Cediranib will works on you!
Lynette

[alexander]

Dear All,

I am sorry for the delay in reply, I was waiting for the first tumor assessment after 8 weeks of participating in the Cediranib trial. The assessment showed that all the tumors except one in the thigh (not the primary one) are stable. The one in the thigh has grown a little. But overall my condition is considered as stable. So I continue participating in the trial. Next tumor assessment is in 8 weeks.

I thought the result would be better like it was after first two months of Pazopanib when some lung mets got smaller. I would like to ask you if you consider my result to be positive or negative.

Anyway the good thing is that I am not on placebo.

Lynette, I am answering your questions. Cediranib dosage is 30 mg per day. I do not have the side effects you mentioned - hypertension, diarrhea, abdominal pain. Instead I had some problems with breathing which have gone away, and some problems with skin (scratching) that demanded a visit to dermatologist and taking some medicines. Now the skin problems are also under control.

[Olga]

Alex,
it is a good result. The non-responding soft tissue met is kind of not unusual - we have seen already here that soft tissue mets are less responsive to TKI. The cediranib dose is a bit to low as far as I remember from other people cases? Brittany was not responding well for awhile, it was only stable and after awhile her situation gradually improved and they started to shrink, so lets hope for it.