Jussi from Finland - Dx 2008 - 30.3.1991 - 23.8.2019 R.I.P.

[D.ap]

Jussi
Glad to hear of your healing .
The residual tumor was still not showing growth ?
The surgery is to remove it later?
Good to hear the good news

[mikko]

The Dental Surgeon´s text message was: "NO recurrence or new spread to the mandible, according to the radiology report"

[Olga]

Looks like a false positive with the previous scan that was ruled out by the additional cone beam CT? what was the scan that initially said suspicious for the the new mets in a jaw bone?

[mikko]

MRI.....false results might have something to do with the ossifying mandible after the tumor resection and wisdom teeth extractions.

[Bonni Hess]

Dear Jussi, I am so grateful and relieved, as I know that you are also, that the cone beam CT scan has ruled out recurrence of your mandibular met and any metastatic spread in your mandible. Will you now move forward with Cryoablation of your liver met with Dr. Littrup, and will you also continue your Sutent treatment while you wait for a response from Astra Zeneca regarding your request for Compassionate Use approval of Cediranib? You are to be commended for your very proactive approach, invincible determination, and great courage in fighting your disease through so many challenges. Thank you for your continued active participation on this Board and gracious shared anecdotal treatment experience and results information which is so very helpful to everyone who shares this very challenging battle with this insidious disease. Take care dear Jussi, stay strong, and know you are held very close in my heart and my most caring thoughts. With special hugs, deepest caring, healing wishes, and continued Hope, Bonni

[mikko]

Does anyone know what are Astra Zeneca´s criteria for giving Cediranib to an ASPS patient?
Jussi´s oncologist Dr. Kononen has now received an applying form from Astra Zeneca. Dr. Kononen said that the questions are quite thorough, for instance; how is the diagnose verified ( the gene tests were completed last week so that is not a problem) and has Sutent been tried ( no problem either).
Dr. Kononen promised to fill the form to the best of his knowledge next week before his holidays and he was optimistic about the results.

[D.ap]

Hello Mikko
Our doctors did all the work for off label compassionate use Opdivo.
However a place to start , if you haven’t already ,is England and it ced trial administators ?
When every one else wakes up I’m sure they will contribute
Look for successs stories like Brittany and certainly bring up how far Jussi has come in his fight and how incredibly successful he has been in that fight .






Posted on April 26, 2014 by Yosef
OPEN NOW: CASPS – A Phase II Trial of Cediranib in the Treatment of Patients with Alveolar Soft Part Sarcoma



Contact: Professor Ian Judson: casps-icrctsu@icr.ac.uk

[Olga]

Include the following articles:
http://ascopubs.org/doi/full/10.1200/jco.2012.47.4288
https://meetinglibrary.asco.org/record/144805/abstract
and ask Pf. Judson for a letter recommending cediranib if the abstracts are not enough (should be).

[mikko]

I forwarded the articles to Dr. Kononen and sent an email to Pf. Judson.
Thank you!

[arojussi]

Got respons from chinese neurosurgeon. 10 tiny new lesions that look like metastases. Looks like another gamma knife treatment for me.

Looks like compassionate use with cediranib will happen.

It is unclear if lesion in my liver is metastase or not and as it is stable I really think we should deal with my brain mets first.

[Disco76lover]

I really hope you get the cediranib Jussi and so sorry to hear of the new lesions / mets. You are in my thoughts.

[D.ap]

Jussi
I’m sorry that the report showed the detail it reported.
Can yoy get a second opinion from your radiologist and oncologist?
Maybe the doctor in China didn’t get all the prior treatments and baseline prior imagatiioning reports?

Before you schedule the additiuonal gamma knife .
It sure seems to be out of character for ASPS tendencies maybe?
My hope is he is wrong
Love and prayers my friend
Debbie and family

[D.ap]

Ps I join with Melanie in hopes that you get
Cedirinib .Compassionate use .

[Bonni Hess]

Dear Jussi, I am so sorry for the diagnosis of 10 suspected new brain mets, but am very grateful that Gamma Knife is a treatment option and that it has been successful in treating your previous numerous brain mets in the past. I am very grateful too that it appears that you are going to be approved to receive Cediranib on a Compassionate Use basis, and I am holding VERY tight to Hope that the Cediranib will be VERY successful in stabilizing the progression of your disease, preventing new mets, and shrinking and destroying your existing ones. You have been through so much in your courageous battle, and I am not personally aware of any other ASPS patients who have experienced as many brain mets as you have. It appears that Cediranib can cross the blood brain barrier to prevent new brain mets as it has very thankfully done for Brittany thus far, so Hopefully it will be effective for you also. In the meantime please know that you are being held very close in my heart and special thoughts, and my deepest caring, healing wishes, warm friendship, and continued Hope are with you as you continue your very determined and courageous battle, Bonni

[arojussi]

As this neurosurgeon successfully treateted my 36 asps brain mets. I am very happy that he thinks gamma knife is still option. 10 mets sounds scary, but as tumors are very small over all volume is next to nothing, so gamma knife for these lesions now isnt very dangerous, but if we wait and volume increases then it is whole another story. As we know from past this chinese neurosurgeon has been able to count my brain mets way more accurately than any finish doctor. And we looked my brain scans together before gamma knife treatment. He was woried about necrosis and now looks like necrotic areas are shrinking.

To me my cancer has behaved like textbook asps. Multiple slowly growing mets in lungs, brains and bones. (Very little mutations.)

As Sutent clearly isnt working and I dont have Cediranib yet me and my dad feel I should swith to pazo again as side-effects from pazo are way easier and I need something for brain swelling. In general side-effects from tki are easier than side-effects from dexometasone.