Saskia Dx April 2019 - on Cabozantinib since May 2019

[Saskia]

Hello,

just to inform you about my treatment:
Dx in April 2019, ASPS primary in my leg/femoral (12x7x3cm) plus around 100 small lung mets, I'm on Cabozantinib/Cometriq since 17th of may with a daily dose of 60mg.
Side effects so far: sometimes stomach cramps, getting white hair and having some pimples in my face, sometimes photosensitive.

Saskia

[D.ap]

Hello Saskia
Is there any pathology reports you can share , and or scan reports? They were able to use a MRI?

It’s vital to see where the rather large tumor has invaded , in my humble opinion .
Thank you so much for checking in with us.

[Saskia]

Dear Debbie,
thanks for your reply.
My pathology report is in german. Several MRI have been done except spine. Brain, abdomen and pelvis are clear. Did you see my last post under personal stories with more details.

Saskia

[D.ap]

Hello Sakia,

I did miss your last post on your discussion with Nhi on your molecular profile determining the MET an VEGFR2 findings.
Did your primary scan show or mention the possibility of bone invasion? With the primary being 12cms suspect that there maybe that possibility.

How are you doing with the cometrique side affects?

You should send Bonni Hess a personal message as Brittany . Bonnis daughter, she has been on a TKI (cediranib) for over 10 years and has had to contend with nausea and lots more side affects.

viewtopic.php?f=45&t=400
By clicking on the , click on the upper left hand where the replier( Bonni Hess) is and it takes you to Bonnis profile. From there you can PM her.



Also Mario has been on cometrique in the past and he is always willing to give advice.
He is the next post down from your post.

[Saskia]

Hello Debbie,
I had MRI on both legs. Do you think this is enough to discover bone mets? Or what do you suggest?

My sideeffects are bearable. My next big check will be on 1st of August with CT lungs, MRI primary tumor in my leg and MRI abdomen/pelvis.

I hope of a remission of lung mets or stability.

Saskia

[D.ap]

Saskia

The Mri's should show if there is bone involvement. Ask your oncologist .
Looking forward to hearing of your scnas on August 1.

[Olga]

Saskia - Deb is asking if your primary had invaded the bone, because you posted initially "Dx in April 2019, ASPS primary in my leg/femoral" - femur is a bone. Did they resect the bone with the primary?

[D.ap]

Thanks Olga
Does a vegfr2 molecular profile ,denote a possible bone met , if detected in the lung and or the leg biopsy?

[Olga]

not really bone or tumor specific (if at all related to bone):
In adults,
VEGFR2 is expressed prominently on vascular endothelial cells
VEGFR2 is the premier receptor mediating VEGF-A activity on endothelial cells
VEGFR2 activity on vascular endothelial cells in tumors promotes tumor angiogenesis(K. H. Plate et al., 1993, Millauer B et al., 1994). For the effects of VEGFR2 signaling on different cell types, see Table 2.
http://atlasgeneticsoncology.org/Genes/GC_KDR.html
this is why inhibiting this in tumor blood supply would also affect the other body parts and functions.

VEGF Signaling Inhibitors:
Strategies employed to target VEGF signaling are multifocal, consisting of monoclonal antibodies for both the ligands and VEGFRs, recombinant VEGFR extracellular domain fusion proteins (Table 3), and small molecule receptor tyrosine kinase inhibitors (Table 4)

[D.ap]

Olga
Thank you !:)
What a great link but what ALOT to absorb :/
Saskia our love and support here and now
Love ,

[Saskia]

Hello Olga and Debbie,

thank you for all the information which I try to understand.
Sorry for the confusing about the wording femoral. My primary tumor is in my upper leg and growing along the muscle. MRI is not showing bone invasion. At the moment I have the impression that the tumor shrinks and aparts from the muscle but let's see on 1st of August.

Hugs,
Saskia

[Saskia]

Hello again,

I tried to upload my MRI leg and reports of the pathology but all photos are too large.

[D.ap]

Morning from the USA, Saskia ,

It sounds very hopeful of the tumor softening .
I bet you are correct with your observation .

Have you talked with a sarcoma surgeon about looking at your scan to see if the tumor could at some point be surgically removed ?
Here's a discussion started by Olga back in 2016, on the importance of resection. It include some supporting articles to look into and discuss with your team.
viewtopic.php?f=22&t=1234&p=13718&hilit ... sive#p9241
Also there is an article I found recently that talks of using surgery along with immunotherapy meds to attack the ASPS systemically. Which is the thought to why you are on Cabozantinib..for systemic attack.


Does your study allow for surgeries and or other treatments ?

In my 7 years of following posts of treatments with TKIs, stability to some reduction I've seen. However with the immune suppression that the TKI brings to the table ASPS tends to overcome and rebound eventually, so its always good to know what the next step needs to be if and when that happens.

I’m posting your personal post link here so others can read.

https://www.cureasps.org/forum/viewtopic.php?f=4&t=1744

August will be here before you know it.
Keep the faith, and be assured that we are living in an excellent age of knowledge about ASPS.

You and I can especially be thankful for this forum and all it has brought to our table of knowledge in treating our rare sarcoma,
Much Love,

[D.ap]

Hello again Saskia

Question--is cabozantinib given on a continuous dose or do you have days off with your prescribed dosage?

[Saskia]

Hello Debbie,
according to my primary tumor I already talked to sarcoma surgeon (Prof. Dr. Schwarzbach from Frankfurt). It would be best to have the tumor smaller because it needs to remove a little from the main nerve of the leg. For R0 resection there still need two muscle strains to be removed.
Priority is to have remission of lung mets.
Of course I'm very keen to remove the primary tumor.

Do you know if TKI and radiation works at the same time?

Except the TKI Cabozantinib my doc already requested approval at insurance for ICI as a second line treatment. She suggests to change to ICI in case TKI does not work anymore.

I take a daily dose Cabozantinib of 60mg at the moment.

Getting nervous for thursday right now.

Big hugs,
Saskia