MJ on Cometriq

[Brian]

Hello

Its been some time since I last reported on MJ. She was diagnosed in 2009, and been through a number of treatments, including Cediranib at NIH, Sutent, Pazopanib, among other clinical trials. After nearly one and one-half years of stability on Pazopanib, she has had disease progression. She was recently approved through insurance to begin Cometriq, and will begin treatment in a couple of weeks. I am anxious to see the results. Has anyone else had experience taking the drug, including 140mg dosage?
I will keep you up to date on the progress.
Regards, Brian

[Amanda]

Hello Brain,
This is OT but i am happy you are back I was concerned and that she is going to try another med soon...

I wish you both the best an send her huge ASPS sister hugs from me!

[D.ap]

Brian
Hope and hugs to you both
Where can we read of MJ's story
Sincerely
Debbie
Ps Josh is our son in the personals

[Olga]

Brian thanks for posting about MJ going for Сabozantinib and at least some update - it was a hard time for both of you so we understand. About your inquiry - I suspect there are no other patients here on the board on this drug yet, it was just recently approved and we are very hopeful it will show the same intriguing results in ASPS soft tissue and bone mets and primary tumors as it did in other diseases soft and bone mets. Please keep us posted when she starts and when the scanning is done.

[Bonni Hess]

Dear Brian,
Thank you so much for your thoughtful update. I have been so worried about MJ having not heard from you for so long, but know how very busy Life can be especially with the demands and challenges of fighting this insidious disease. I am so sorry that MJ has now developed disease progression despite her Pazopanib treatment, but am grateful that she at least was able to have a year and a half of stability with the treatment. Unfortunately, Pazopanib has thus far not proven to be very successful in providing long term sustained disease stability for those ASPS patients who have been treated with it with several patients who I am personally aware of ultimately developing resistance to the Pazopanib and having aggressive disease progression. I am so glad that MJ will be starting treatment with Cometriq (Cabozantinib) which sounds like a very promising new drug, and I am holding very tight to Hope that it will be very successful for her in stabilizing the progression of her disease and shrinking/destroying her tumors. Does MJ still have her primary tumor in her thigh, and if so, are there any plans to try to resect it to reduce the tumor burden in her body so that the Cometriq can possibly be more effective in fighting her disease? I Hope that MJ tolerates the Cometriq well and I will be anxiously awaiting your next update. In the meantime, please take care, give MJ and yourself special hugs from me, and know that my very best wishes and most positive thoughts are with you for a very successful outcome to the Cometriq treatment.
With deepest caring, healing wishes for MJ, and continued Hope,
Bonni

[Jorge]

Does it need to do immunohistochemical before taking Сabozantinib? I notice it just covers 2 targets--cMET and VEGFR-2. If there is no high expression on cMET or VEGFR-2, it's really high risk to try Cabozantinib.

[Jorge]

Hello Brian,
I hope MJ is doing well and wish Cometriq works for her. Please give us an update when you're available.
I'm also considering Cometriq as I know it can go through the Blood Brain Barrier on some Lung cancer patients.

Best wishes to you both.

Lynette

[Bonni Hess]

Dear Brian,
It has now been over three months since you last posted about MJ starting Cometriq. I Hope that she is having a very positive and successful response to the Cometriq and that she is tolerating the side effects of the drug well. I assume that she has by now had some status scans to determine if the Cometriq is working to stabilize her disease and shrink/destroy her tumors, and I am anxiously awaiting an update from you when your time and the situation allow. In the meantime, please know that MJ, you, and your family are all held very close in my heart and my continued most caring thoughts. Take care and keep in touch as you are able.
With deepest caring, healing wishes for MJ, and continued Hope,
Bonni

[Brian]

Hello
Its been a while since I have posted. A brief history, MJ was diagnosed in July 2009, and has been on various treatments, mostly TKIs, off and on since diagnosis. Her primary is in her thigh, with multiple lung mets, and an adrenal met. MJ started taking Cometriq in the fall 2013, with a dose of 120mg daily. The side effects were quickly too much to deal with, and the drug was stopped in early October. Scans were done after about a month on the medication, and they showed stability in all tumors. The drug was restarted in November 2013, at a significantly lower dose of 40 mg per day. The side effects were fautique, stomach pain, some dizziness/confusion. A brain scan was performed, and it was clear. Once the drug stopped, the side effects of course stopped almost immediately. She has been able to tolerate the lower dose now since November. Scans were completed this week, and showed stable tumors for the most part. There is an adrenal tumor that continues to appear slightly larger, but overall stable. MJ has always been very responsive to the various TKI drugs, and she has pretty much had them all. The problem has been the ability to maintain the drug for an extended period of time, beyond 12-16 months ( we feel very fortunate for these periods of stability). All have become ineffective after this time period, and therefore a switch to the new one ensues. She has never experienced a rebound effect after stopping any of the drugs (period of rapid growth). Here is to hoping she will maintain an extended treatment period of Cometriq! I will keep you posted after the next scan in three months.

[D.ap]

Dear Brian,
It has now been over three months since you last posted about MJ starting Cometriq. I Hope that she is having a very positive and successful response to the Cometriq and that she is tolerating the side effects of the drug well. I assume that she has by now had some status scans to determine if the Cometriq is working to stabilize her disease and shrink/destroy her tumors, and I am anxiously awaiting an update from you when your time and the situation allow. In the meantime, please know that MJ, you, and your family are all held very close in my heart and my continued most caring thoughts. Take care and keep in touch as you are able.
With deepest caring, healing wishes for MJ, and continued Hope,
Bonni

Hi Brian and family
Thanks so much for the update
How was the adrenal met discovered if I can ask ?
Sincerely
Debbie

[D.ap]

Ps
From our family to yours Love and hope
Especially to MJ

[Brian]

D.ap

The adrenal met has been showing up on the CT scan for a while (more than a year ago). It continues to increase in size, although at a pretty slow rate. I have found that some mets can increase, while others are decreasing. I had previously been told that all the mets would go the same way if a medication was being effective, but not the case.

[D.ap]

Hi Brian

Our family is new to the forum. 2012.
With the TKI's it was your understanding that if a drug was working it would work on all mets? Shrinking wise?
With every tumor that shows up ,as I understand it ,the tki is only as good as it's targeting vascular inhibitor chemical .
The ASPS begins as one type of sarcoma then possibley travels and changes in chemical makeup to create another place of a sarcoma somewhere in the body.
I could be totally wrong in my understanding so maybe Olga or Yosef could help us out

Is the plan with TKI's to stabilize and shrink all tumors ? Lungs adrenal and primary ?

I see that MJ has been on a host of TKI's. What does your oncologist say about the shrinkage ?

I can't begin to understand how incredible hard this is for you both but please be assured that all of us are here anytime you need an ear.

Sincerely,

Debbie and family

[Bonni Hess]

Dear Brian,
I am very appreciative of your update which I have been anxiously awaiting. I am so grateful for MJ's continued disease stability despite the significantly lower dose of Cometriq and I am very thankful that she is tolerating the side effects of the drug much better with the reduced dosage. This is wonderful news , and it brings encouragement and strengthened Hope regarding the potential for Cometriq as a promising new systemic treatment for ASPS. Since MJ has had a successful but not sustained response to all of the TKI's which she has been treated with, I continue to wonder if her primary tumor were resected if it would reduce her tumor burden to the point that she might have significant shrinkage of her remaining tumors and longer disease stability. As you may or may not know, during the first couple of months of Brittany's Cediranib treatment she had stabilization of her disease, but was only experiencing very minimal shrinkage in her multiple and widely disseminated mets which was concerning to her Clinical Trial oncologist Dr. Sawyer. She had a small superficial abdominal met which was continuing to grow and Dr. Sawyer described it as "not being a team player", so he recommended that she have it surgically removed. She discontinued the Cediranib for a week prior to surgery due to the risk of hemorrhage associated with TKI use, had the met removed in an outpatient surgery, and then resumed taking the Cediranib a week later. Following the removal of the abdominal met, she began to have dramatic shrinkage and disappearance of her remaining multiple and widely disseminated mets and has thankfully now had 56 months of sustained disease stability. Have MJ's doctors addressed/discussed resection of MJ's primary tumor? Also, since the adrenal met "continues to appear slightly larger", perhaps Cryoablation should be considered to shrink/destroy it. Again, as you may or may not know, ASPS patient Ivan on this Board recently had an adrenal met successfully ablated by Dr. Littrup so it is certainly something which would be worth discussing with MJ's oncologist.
As always, my continued most caring thoughts and very best wishes are with MJ, you, and your family, and I will look forward to your next update. Take care Brian, give MJ and yourself a warm hug from me, and keep in touch with the Board as you are able.
With deepest caring, healing wishes for MJ, and continued Hope,
Bonni

[D.ap]

Hello again MJ and Brian,

One more thought as the sunsets here in the Midwest
We're considering some type of chemo prior to our next surgery. The reason being that we can truly assess how well the systemic treatment acted on the tumors AFTER we've been on the selected drug
Otherwise a patient is speculating by the scan results. The necrotic results from the surgery are more definitive than an educated guess by measuring on the scan .

I hope this makes sense ?
Anyway Good night to you both

Debbie