Alexander from Russia - Dx. Feb 2014

[Olga]

Hi Alex, I read your MRI reports in Russian that you sent me, and it looks like the tumor in scapula (shoulder blade) is really stable, as the other tumors - the primary in the soft tissue of the right leg with the bone involvement, plus two tumors in the right and left pelvic bone. Plus they say that the border of the tumors became better outlined and some parts of the tumors changed the signal and may be even dead now. The locations of the tumors are very challenging for the surgery or even radiation as most of them involve joints and the surgeries would probably affect the functionally. The bone could break even if treated by the radiation. So in your particular case based on the location of the mets and that they respond well to meds you are taking, you should stay on the same treatment as long as it is working and there is no significant pain.
Also since all you large tumors are soft tissue or bone located, keep you eyes on cabozantinib - the drug is more active than others in the bone mets setting. It is avail. in US on a clinical trial sponsored by NCI http://www.clinicaltrials.gov/ct2/show/ ... en&rank=27 and allows people with the previous TKI treatments after 3 months of the wash out period - about as long as it takes to get all the paperwork done:) May be you should correspond with them in advance just in case to discuss if you are eligible to enroll and what are the associated costs there, I would expect that most of the costs are covered by the NCI. Talk to your oncologist if he heard anything re. possible opening of this trial in Russia.

[Bonni Hess]

Dear Alexander,
It was so good to hear from you and I am so very grateful and happy for the disease stability shown in your most recent scans which thankfully indicates that you are having a successful response to your Votrient and Zometa treatments . The mistake of the local polyclinic which reported you had peritoneum mets in May 2014 is certainly inexcusable and extremely frustrating , but I am so glad that it was a mistake and that you don't actually have any periotenum mets! This definitely illustrates that radiologists and oncologists can and do sometimes/too often make serious mistakes and how critically important it is to insist on personally reviewing the scans with the oncologist and obtaining copies of both the radiology report and CD's of the scans for your own personal records, review, and comparisons. Fortunately this mistake was in your favor, but too often mistakes are made in the other direction where mets are inexplicably/inexcusably missed or overlooked by radiologists and oncologists such as what tragically happened with Brittany's very large spinal met in 2007 resulting in her having to undergo a very major and paralysis/Life threatening spinal surgery.
I agree with the excellent and very knowledgeable insights and advice that Olga has shared with you, and am holding very tight to Hope that your current Votrient and Zometa treatment will provide continued and sustained disease stability and shrinkage of your primary tumor and multiple other mets. Please take care dear Alexander, stay strong and pro-active in your courageous battle, and keep in touch with the Board as you are able.
With special caring thoughts, healing wishes, warm friendship, and continued Hope,
Bonni

[alexander]

Dear Olga and Bonni,
Thank you very much for insights and advise you give me. Your help is an invaluable source of information for me. We try to do our best to investigate all options you mention.
I still have a minor question how to rule out abdomial mets. What is better: MRI with/without contrast, CT with constrast?

[Olga]

When we spoke with Ivan's cryo ablation Dr.Littrup from Detroit what would be the best scan for the surveillance after he ablated two abdominal adrenal mets, Dr.Littrup said that from the point of sensitivity in that location CT and MRI with the contrasts are pretty equal, but since they both have to be fairly high resolution (few mm) the radiation dose from the high resolution CT would make it worse for the patient, so we moved to a MRI with the contrast. But Ivan needs to have these scans often plus the area received a radiation dose during the cryoablation procedure - it is done under the continued CT guidance. Probably in your case there is no much advantage in MRI versus high resolution CT with the contrast. As I understand, a CT is easier to get and it is cheaper if you need to pay.

[alexander]

Olga, many thanks!!!

[alexander]

Dear All,

A year has passed since I was diagnosed with ASPS. I feel a little better today than a year ago. The tumors were more or less stable throughout the year (there were some minor changes, both positive and negative).

The latest scans in January 2015 showed that shoulder blade, thigh, Th4 tumors are stable compared with October 2014. There was 1 mm increase of some of the lung mets. However, most of the lung mets are stable. I continue taking Votrient and Zometa.

I would like to thank all forum members for support and insights!

[MartinBube]

Great Alexander, very good news. I hope you'll continue to be stable and eventually heal completely

best wishes from Martin

[D.ap]

Alexander

Thanks for the update and good news
Sending good thoughts and prayers your way.
Love
Debbie

[alexander]

Dear All,

It is time to ask for your opinion, ideas and insights.

The latest scans showed the following (compared with 3 monts ago status, after 1 year and 2 months of Votrient therapy):
- new lung mets have appeared
- all the existing lung mets have grown (1-3 mm)
- two major tumors (right thigh, shoulder blade) have grown
- some minor tumors are stable.

My doctor proposed the following. I should stop taking Votrient for 1-1.5 months. There are two options after that: to take part in a trial or to start taking Sutent.
So I have about a month to find a trial and do all the paperwork. Please advice the drugs (Cediranib, Cabozantinib, ...) you recommend to investigate. If you know any trial currently hiring patients please let me know.

Thank you in advance for prompt response!

[D.ap]

Dear All,

It is time to ask for your opinion, ideas and insights.

The latest scans showed the following (compared with 3 monts ago status, after 1 year and 2 months of Votrient therapy):
- new lung mets have appeared
- all the existing lung mets have grown (1-3 mm)
- two major tumors (right thigh, shoulder blade) have grown
- some minor tumors are stable.

My doctor proposed the following. I should stop taking Votrient for 1-1.5 months. There are two options after that: to take part in a trial or to start taking Sutent.
So I have about a month to find a trial and do all the paperwork. Please advice the drugs (Cediranib, Cabozantinib, ...) you recommend to investigate. If you know any trial currently hiring patients please let me know.

Thank you in advance for prompt response!

Hi Alex

My question is how much total have the lung tumors increased from last February?
The scan has to be compared to the most recent scan to determine the percentage of increase on the biggest.
Have all your scans been performed at the same place?
2mm can be the difference from 1 scan to the next even if they are the same machine.


My next question is how are you feeling and coping with the side effects of votrient. What dosage are you on?
From what I understand this is a really good time frame that you have been able to semi stabilize your tumor progression on this drug.
Have you had any removal of tumors or other treatments aside from the votrient?

It is good to hear from you. You are doing a great job. Hang in there!
Love
Debbie

[D.ap]

Hi Alex, this is a great news - that there is no progression and that the abdominal mets were a mistake. This is why I advocate asking for a second review of the scans if the findings are unclear! However an ultrasound scan is not that good to rely on to rule out mets, I would try to get an abdominal MRI or at least an abdominal CT scan with the contrast.
Some comments:
- since you are def. a responder to Pazopanib, you most probably is going to be a responder to Sunitinib if the resistance to a first drug develops.
- The bone mets are large, they probably are very painful and you should keep trying to get a radiosurery to treat them. Scapula is thinner than the size you quote, what do they say - is it stable enough? It can break down.
- a cediranib clinical trial in US is free for the patients and would accept you but you would still have to pay fr the flights/living expenses. I expect that the drug might be a pproved soon and be avail after that locally.
- do not feel that we expect any of our questions answered. This is a low pressure board, we completely understand that there are times when you could be not in a best mood/health/nothing to say/not sure what to say/waiting to find our what to say/does not want to talk about this damn stuff etc. But do not hesitate to post as often as you want - when you want or need it.

.


Alex

This was Olga's suggestion back in November.
However I am sure she will reply when time allows.

Also
What mg of zometa are you on?

found this article in NIH library

http://www.ncbi.nlm.nih.gov/pubmed/19521984

[Olga]

Hi Alex,
cediranib trial is recruiting here:
https://clinicaltrials.gov/ct2/show/NCT ... ib&rank=12
Australia, UK and Spain. May be Spain is a more feasible location for you than UK, I remember that you already contacted UK and they only accept UK patients?

cediranib or sunitinib trial is recruiting too but all locations are in US (multiple)
https://clinicaltrials.gov/ct2/show/NCT ... ib&rank=14
it is a crossover trial (At the time of disease progression patients will cross over to the other treatment arm after a 2-week wash-out period).

we did not hear anything from our patient on cabozantinib for awhile.

[Bonni Hess]

Dear Alexander,
I am so very sorry about the concerning negative results of your most recent scans which showed new mets and increased growth in your primary tumor and many of your other mets. I agree that you will need to find and begin another systemic treatment, but I personally think that you should first pursue resection of your large primary tumor in your right thigh and possibly resection or other treatment ( ablation or radiosurgery) of some of your more concerning other tumors such as your shoulder and spinal tumors. As I have told you in my previous posts to you, based on my extensive personal ASPS experience, observations, and research, it appears to be critically important to remove the primary tumor if possible to prevent it from continuing to disseminate metastatic tumor cells into the bloodstream, and also to reduce the body's tumor burden and strengthen the immune system to better fight this very challenging disease. All of the ASPS patients who I am personally aware of who did not have their primary tumors removed had failed responses to their systemic treatments and tragically ultimately lost their courageous battles, or in the case of two patients with large unresected primaries who have not updated for the past six months to a year, may have heartbreakingly now lost their battles. Of course I know and understand far too well that having the primary tumor removed is in no way a guarantee of surviving this insidious disease, but I feel that managing tumor burden as much as possible gives you more of a fighting chance if your body and your systemic treatment are not having to fight a continual dissemination of tumor cells into the bloodstream and a huge amount of immune system weakening tumor load. Regarding a new systemic treatment, I personally feel that Cediranib would be a better treatment choice than Sutent because Sutent has unfortunately not proven to be very successful in terms of providing sustained long term disease stability or significant tumor shrinkage/disappearance to any of the several ASPS patients who I am aware of who have been treated with it. We have very little information about the results of Cabozantanib ( Cometriq) since the ASPS patient who was being treated with it has not posted any updates for quite awhile and he has not responded to my personal messages which is always very concerning. I know how very difficult these treatment decisions are, but I encourage you to be as well informed and knowledgeable as possible about documented anecdotal ASPS patient treatment results with the various systemic treatments, and my strong recommendation would be to first address resection of your primary thigh tumor. Take care Alexander, stay strong, know that I am holding you very close in my thoughts, and keep the Board updated with your treatment plans as you are able.
With special caring thoughts, healing wishes, warm friendship, and continued Hope,
Bonni

[MartinBube]

Hi Alexander,

regarding a trial medicine please try contacting Royal Marsden hospital in London. They do work with international patients just need a recommendation from your GP. I did contact them a month ago and they required all results and recommendation from your GP in order to schedule a meeting. They are awfully expensive though. 600 GBP cost an appointment. I was thinking to go and try meet prof Judson and hear his opinion but the cost just was to high to chase it at this time.
But please try and see if you can, I'm sure they will reply to you and make sure you ask from Judson

probably the option for Spain is very good also

http://www.royalmarsden.nhs.uk/pages/contact.aspx

[D.ap]

Hi Alex

In reference to the sutent and cedirinib trial here in the us.

https://clinicaltrials.gov/ct2/show/NCT ... ib&rank=14

Taking sutent prior to the trial makes a patient ineligible for the trial period .

Just for your information.

We are still in the process of trying to stabilize brain tumors to try and get into the trial.

I too am sorry that progression has happened and I certainly forgot to say that earlier.
However I am encouraged of you reaching out to us as that shows will and determination of your spirit!
That will take you far in this fight of this damn and insidious cancer.

Much love
Debbie