Elisa on Pazopanib

[D.ap]

Thank you Phillip for the response

I was just curious. I guess in reading articles the first course of action after having had radiation of some sort on the lungs
is ,if need be ,are steroids and then antibiotics .

http://www.buzzle.com/articles/pneumoni ... monia.html

I hope Elisa has found another avenue to combat and overcome this disease to date
God knows its a daily and life long war on this enemy called ASPS

Much love to you and yours
Debbie

[Johannes]

Dear all,

A quick update: Elisa is still taking Pazopanib, with at times more severe side effects than before. But the very good news is that the CT scan of the chest/abdomen/pelvis that was done last week showed overall stability and shrinkage of the one lesion that was treated with stereotactic radiotherapy (cyberknife) three months ago: from 30mm to 24mm! The lesion is of course not (yet) gone, but the shrinkage signals that the radiotherapy worked. Apparently, it should continue to dissolve.

This kind of radiotherapy therefore seems to be a good backup-plan to treat lesions that do not respond to any systematic treatment. And although ASPS does usually not respond to radiotherapy, this form of high-dose radiotherapy seems to work!

Next step for Elisa is an MRI of the thigh next week to monitor the primary; we are not expecting any major changes here, but we’ll keep you posted.

Best wishes,
Johannes

[Olga]

Congratulations on a good scan results. Do you know what criteria do they use to report - if they use REGIST it allows for up to 20% growth to be still called stable.
Just to clarify some info re. radiation treatments for ASPS - you are correct that it does not usually respond to the radiotherapy, but it does respond to radio-surgery - much higher dose and narrow focused radiation treatments delivered in one or few sessions using some radio-surgical units - there are few of them in use now, and CybeKnife is one of the radio-surgical units that is often used. We have few people that had radio surgery done on their ASPS mets and it was usually a success (most often it is used to treat brain mets using GammaKnife, but also unresectable lung, spine or other mets).
Does Eliza get a brain scan to monitor the head?

[Johannes]

Hi Olga,

Thanks for following up.

I said stable because the report indicated that one lesion had grown by 1mm, another decreased in size by 1mm, etc. It is a very detailed report, and we also compared the numbers to previous reports (not only the last one).

Of course radiosurgery (as they call it) is a different kind of radiotherapy and not comparable to the "standard" radiotherapy. Elisa's radio-oncologist also mentioned that the success rate of radiosurgery is usually a bit lower in sarcoma mets compared to others, so we weren't too sure how the response would be in the case of ASPS. And of course this is only one lesion, etc. But we still thought it was very encouraging to have another case showing that ASPS lung mets can apparently be treated effectively with stereotactic radiotherapy.

Elisa had an MRI of the brain last fall, and she has another one scheduled for this fall.

Take care,
Philipp

[D.ap]

Hi Olga,

Thanks for following up.

I said stable because the report indicated that one lesion had grown by 1mm, another decreased in size by 1mm, etc. It is a very detailed report, and we also compared the numbers to previous reports (not only the last one).

Of course radiosurgery (as they call it) is a different kind of radiotherapy and not comparable to the "standard" radiotherapy. Elisa's radio-oncologist also mentioned that the success rate of radiosurgery is usually a bit lower in sarcoma mets compared to others, so we weren't too sure how the response would be in the case of ASPS. And of course this is only one lesion, etc. But we still thought it was very encouraging to have another case showing that ASPS lung mets can apparently be treated effectively with stereotactic radiotherapy.

Elisa had an MRI of the brain last fall, and she has another one scheduled for this fall.

Take care,
Philipp

Elisa and family
Great news
Thanks for the update
For those who would like to know of Elisa's and families journey
http://www.cureasps.org/forum/viewtopic.php?f=45&t=529
http://www.cureasps.org/forum/viewtopic.php?f=4&t=482

Much love
Debbie

[Olga]

Thank you Debbie- I have not realized that there is no separate topic for Elisa in the Personal updates. Philipp, I now opened it
http://www.cureasps.org/forum/viewtopic.php?f=4&t=884
and copied the first part re. cediranib there, and you can now briefly state the changes/treatments there while continuing to share the details in the appropriate forum - thank you very much for the sharing, it is very important for all ASPS community to share the info and to use what we know to optimally deal with this very rare disease.

[Bonni Hess]

Dear Philipp,
Thank you for sharing the very good and encouraging results of Elisa's most recent chest/abdominal/pelvic CT scans and the shrinkage of her Cyberknife treated large lung met. I am so grateful that she seems to be having a continued positive response to the Pazopanib and that the lung met Cyberknife treatment appears to have been successful . This is very important and invaluable shared anecdotal treatment information since despite my almost 13 years of ASPS experience and extensive research and networking, I was not personally aware that radiosurgery such as Cyberknife could also be used to treat lung mets in addition to brain and spinal mets. This truly illustrates the critical importance and value of active participation and information sharing on this Discussion Board which I continue to strongly encourage EVERYONE to do. I am sorry that Elisa is experiencing increased severe side effects from the Pazopanib, but Hope that she is tolerating them alright. When your time permits, it would be deeply appreciated if you could please specify what the side effects are that she is experiencing. My very best wishes and most positive thoughts will be with Elisa and you for good news results from her upcoming MRI of her primary tumor in her thigh this week, and I will be anxiously awaiting your next update. In the meantime, please give dear Elisa and yourself congratulatory hugs for the good scan results, and know that you are both held very close in my heart and most caring thoughts.
Sharing the joy of Elisa's good scan results with great happiness, special caring, and continued Hope,
Bonni

[Johannes]

Dear all,

There have been a few ups and downs since I last wrote about Elisa, although, overall, things are not too bad.

Elisa took a break from Pazopanib in July and August. After some of the side effects had become worse, her oncologist told her that she could give her body a break. During that period, she did have a lot more energy (we travelled a bit and did a lot of sports, which was great!), some of her hair colour came back, and her skin started to look more or less normal again.

Unfortunately, a CT scan in late August showed that several lung mets had grown by 3 to 4mm; a few more small ones have also appeared. I guess this does not correspond to what could be called a real rebound effect, but obviously it is still enough for us to want to do something about it. In the absence of a better solution, Elisa has now been taking half of the initial 800mg dose of Pazopanib, and we are hoping very much that this will be sufficient to, at least, stabilize the disease once again, without all the side effects.

What has also been discouraging lately is the very significant pain that Elisa periodically has in her thigh, where the large (and now larger) primary tumour is. She always had a feeling of awkwardness and some pain, but sometimes the pain now gets so bad, mainly during the night, that she can’t sleep nor relax for several hours. It’s worth noting that an MRI done in June, so before she took a break from the drug, showed some increase. We are now reconsidering surgery, although it’s clear that it would be almost impossible to remove everything in the thigh, and we fear that she would lose much more muscle strength that she could regain through rehabilitation. She'll have another MRI done next week, so perhaps we'll know a bit more then.

Finally, we have been in touch with a team in Ottawa, where a trial testing one of their oncolytic viruses will open soon, namely a Phase I/II Study of MG1 Maraba/MAGE-A3 (MG1MA3) with and without Adenovirus Vaccine. Apparently sarcomas could be included, although it would first have to be confirmed that the tumour expresses the antigen MAGE-A3. To be followed…

We were wondering, once again, whether doing some additional profiling of the tumour would be useful. Would you know if anyone has had his/her tumour checked by a company like Caris, and whether this has been useful?

I hope all of you are doing and feeling well!

With my very best wishes,
Johannes

[Bonni Hess]

Dear Johannes,
Your thoughtful update and detailed shared information are once again deeply appreciated and an invaluable contribution to this forum. I am sorry that Elisa's Pazopanib side effects became so severe that she needed to discontinue the drug for two months, but am grateful that she did not seem to experience significant rebound and aggressive disease progression following her discontinuation of the Pazopanib, and that she has now been able to resume taking it, albeit at a reduced dosage. I continue to be very concerned about Elisa's growing and now symptomatic primary tumor in her thigh, and still feel that resection should be a consideration to help alleviate the pain and discomfort now being caused by the tumor, and to reduce her body's tumor burden and possibly better enable systemic treatments like Pazopanib to be more effective in stabilizing the progression of her disease and shrinking her mets. Regarding your question about tumor tissue testing, Brittany had her tumor tissue tested in 2008 and it tested low for MET and high for VEGF-R which may be the reason that she had an unsuccessful response to the ARQ-197 Clinical Trial drug which targets
C-MET, but has thankfully thus far had a successful and sustained five+ year response to Cediranib which targets VEGF. I am not personally familiar with the MG1 Maraba/MAGE-A3 (MG1MA3) with and without Adenovirus Vaccine which you are exploring as a possible new treatment for Eisa, but I will look forward to hearing and learning more about it. My very best wishes and most positive thoughts will be with Elisa and you for good news results on her upcoming scans, and I will be anxiously awaiting your next update. In the meantime, as always, Elisa and you continue to be held very close in my heart and my most caring thoughts. Take care Johannes, give Elisa and yourself special hugs from me, and keep in touch as you are able.
With deepest caring, healing wishes for Elisa, warm friendship, and continued Hope,
Bonni

[Johannes]

Since Elisa stopped taking Pazopanib, the next post is in the personal updates forum:
http://www.cureasps.org/forum/viewtopic.php?f=4&t=884