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

[arojussi]

Thanks. We only had regular Mri neurosurgeon just made picture pigger with computer. I have sometimes done this myself when I looked my scans. It is not 100 certain that these tiny lesions are mets, but unfortunately with my history mets are most likely possibility. I will ask about Ny-eso-1, but unfortunately my asps has very low mutational load so vaccine is unlikely to work. I saw few Papers about NOTCH-inhibitors. My oncologist found some genetic margers supporting sutent use, so Ceridanib is currently most interesting systemic treatment option to me. Response rate of 35 percent and stable disease of 60 percent and disease control rate of 84 percent.

[Bonni Hess]

Hello again Jussi, Olga and Debbie have offered an excellent new systemic treatment option suggestion, but with your history of brain mets it will be very important to determine if NY-ESO-1 can cross the blood brain barrier which was one of our requirements when we selected Cediranib for Brittany due to her history of brain mets. Is Cediranib available in Finland or would you need to go to another country where it is being used in Clinical Trial? With more special caring thoughts, healing wishes, and continued Hope, Bonni

[arojussi]

Some asps patients have received ceridanib with compassionate use, so getting ceridanib will most likely be very difficult, but it shouldnt be impossible.

[D.ap]

page 246, paragraph 4 talks of" how targeted therapies may kill a cell population resistant to radiation" as we know how ASPS is radioresistant.

This is the source article that goes more into detail---

http://ascopubs.org/doi/full/10.1200/JCO.2014.55.1366

page 248 talks about renal cell carcinoma and melanoma and their radioresistant challenges ..and using susfenib and or sutent to increase success with gamma knife

[D.ap]

At the risk of cluttering your post, I'd like to extrapolate

ABSTRACT
Brain metastases are the most common intracranial malignancy.
Many approaches, including radiation therapy, surgery,
and cytotoxic chemotherapy, have been used to treat patients
with brain metastases depending on the patient’s disease
burden and symptoms. However, stereotactic surgery (SRS)
has revolutionized local treatment of brain metastases.
Likewise, targeted therapies, including small-molecule inhibitors
and monoclonal antibodies that target cancer cell
metabolism or angiogenesis, have transformed managing
systemic disease. Prospective data on combining these
treatments for synergistic effect are limited, but early data
show favorable safety and efficacy profiles.The combination of
SRS and targeted therapy will further individualize treatment,
potentially obviating the need for cytotoxic chemotherapy or
whole-brain radiation.There is a great need to pursue research
into these exciting modalities and novel combinations to
further improve the treatment of patients with brain
metastases.This article discusses reported and ongoing clinical
trials assessing the safety and efficacy of targeted therapy
during SRS. The Oncologist 2016;21:244–251

This is from the "The Rationale for Targeted Therapies and Stereotactic Radiosurgery in the Treatment of Brain Metastases"
This is what I was getting at with the spots on your Mri
Residual keytruda working with gamma knife, then sutent

Farlex 2012


synergistic
/syn·er·gis·tic/ (sin″er-jis´tik)
1. acting together.

2. enhancing the effect of another force or agent

[arojussi]

If I could have found results from trial that compares ceridanib and sutent I could easily say that there is scientific evidence supporting me starting ceridanib. But currently I only found ceridanib placebo controlled trial. Ceridanib trial was lot bigger than sutent trial. I think ceridanib trial had 43 asps patients and sutent trial had 9 patients. So there is definetely more scientific evidence supporting Ceridanib use compared to sutent.

[D.ap]

I'm trying to research what I found to be comparable to cedirinib in crossing the brain barrier , compared with sutent ?
It was a manufacture comparison back when Josh was having brain SRS treatments
We opted for temadore as a systemic Med , if you will
2014, late 2015

If my memory serves me correctly , it was more than recommended so please don't quote me.
However the 2 month scan should give you basis to make desicions to make adjustments.
I'd research how gamma knife has helped in the immune therapy and utilimately the useage of sutent to systemicly treat possible residual issues?
It's systemic in of itself ..bolus like , huh?

[arojussi]

My logic is that ceridanib is most effective tki medication for asps, so it is my best change to destroy microscopic tumors or prevent them from becoming macroscopic. If keytruda is working with radiation and sutent then I am making a big mistake, because that
Kind of reaction can be very specific for sutent only and switching to ceridanib could eliminate abscopal effect. My theory there is that tiny new lesions are most likely growing asps mets. I had to stop keytruda because there were clear growth in one tumor and one new bone met while I had used it more than 6 moths and bone met was clearly living tumor and not inflammation. Unless inflammation grows similar blood vessels as asps met. Most systemic treatments like ceridanib works better for smaller tumors, so if I wait until tumors grow it might be too late to destroy them with ceridanib. All clearly visible tumors in my brains are most likely dead and remaining mets are most likely smaller than 1mm.

[arojussi]

Plus I think 3 weeks before I started keytruda I had my first round of srs. No abscopal effect. Changes of me having abscopal effect now are pretty small, so I assume that new lesions are not an inflammation but mets. I base my treatment decisions highly uncertain information, so I might very well make a mistake.

[Bonni Hess]

Dear Jussi, I wish that I had a magic answer for you but truly ASPS treatment decisions are extremely difficult and there don't seem to be any definitive answers regarding which treatment is best since there is currently no known permanent cure for this very challenging disease. All that you can do is make the most knowledgeable and informed treatment decision based on extensive research, active communication and networking with other ASPS patients/families, and discussions with your doctors who are Hopefully Sarcoma specialists, as you have so admirably been proactively doing. My most caring thoughts, healing wishes, and continued Hope remain with you, Bonni

[arojussi]

2 moths after gamma knife effects of radiation finally hit me. Headaghes, vomiting dissyness and hair loss. Had to start dexometasone with dose 4.5 mg a day. Now I am starting to lower the dose.
Had scan yesterday. Most likely reluts will be mixed as most of the radiated tumors are most likely dieing because of radiation alone and if sutent is working there just isnt any new tumors. Last time finish radiologist report wasnt wery detailed. (This lack of detail is understandable considering that my brains are treateted like my lungs, so naturally surgeon who performed gamma knife operation is best to state the state of my brains at the moment.) We naturally have to wait report from gamma knife hospital's beurosurgeon to know exactly what we are dealing with.

As I stated before I would prefer to swith from sutent to ceridanib. As asps grows slowly oncologist can easily mistake natural slow growth as treatment effect from sutent and want me to stay on it. Ceridanib should be availlable as off label use for asps and as it is most studied and effective drug for asps I really dont see any reason why I shouldnt try to get it next.

[Olga]

I think that Ceridanib is not approved yet and is still in clinical trials? so no off label avail. You can try pazopanib again, sometimes it works again after the wash out period.

[mikko]

Dr. Kononen told us that Cediranib is approved ( not for ASPS of course) and is available.

[Olga]

It is interesting, probably it is approved in Europe and not in US/Canada.
The side effects from the radiosurgery increasing now might signal that the body developed the tolerance to sunitinib and it may be does not work to reduce edema anymore?

[arojussi]

It is indeed possible, that my body is developing tolerance to sutent resulting in worsening neurological symptoms lately. It is unusual for side effects from radiation to slowly start developing 2 moths after operation. Last time these effects started way sooner about moth after operation.