MJ on Cometriq

[Bonni Hess]

Dear Brian,
In case you didn't see Olga's important post in the Medical Publications topic, I am posting it here for you as it seems to re-enforce/validate the critical importance of resecting the primary tumor to increase the effectivness of systemic treatments by reducing tumor burden. I Hope that this information is helpful to you in making treatment decisions for MJ relevant to her still present primary thigh tumor.
With special caring thoughts, healing wishes for MJ, and continued Hope,
Bonni

Unresected primary tumor reduces efficacy of treatments

by Olga » Mon Jan 20, 2014 5:26 pm

We discussed before that the presence of the primary tumor could be involved in less efficient antitumor activity of antiangiogenic agents. We were mainly talking about the TKI drugs that many of our patients are on with the limited/transient efficacy, and if the unresected primary tumor presence might reduce the efficacy of the TKI drugs (we have some ASPS patients with the unresected primary tumors when it was found at the already metastasized stage, we generally always advocate the primary resection as possible although our suggestions are based on the mostly anecdotal data when people with the primaries resected fare better). This subject is discussed all over diseases spectrum and is addressed in the new article publ. in Ann Surg Oncol. 2014 Jan 14.
" Bevacizumab Efficacy in Metastatic Colorectal Cancer is Dependent on Primary Tumor Resection."
http://www.ncbi.nlm.nih.gov/pubmed/24419756
The authors performed a retrospective analysis of factors associated with overall survival (OS) in a study cohort of 409 mCRC patients and it was found, that addition of bevacizumab to chemotherapy is associated with improvement of OS ONLY in patients with primary tumor resection.
If you find yourself in a situation when the oncologist is not supportive to an idea of resection of the primary tumor, this article might be used as one of the blocks of the logical ground for the primary tumor resection justification before you start any systemic treatment.OlgaAdmin Posts: 1023Joined: Tue Jun 27, 2006 6:46 amLocation: Vancouver, Canada



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[Bonni Hess]

Dear Brian,
It has now been over four months since you last posted an update, and I just wanted to touch base to find out how MJ is doing. I Hope that she is doing well, having a continued successful response to her Cometriq treatment with stable disease, tumor shrinkage and disappearance of her tumors, and tolerating the drug well. I know that you are very busy, but I would deeply appreciate just a brief update when your time and the situation allow as I care very deepy about MJ and your family, and I am holding very tight to Hope that this new drug will be very successful for MJ.
Reaching out to share special hugs, caring thoughts, healing wishes for MJ, warm friendship, and continued Hope,
Bonni

[D.ap]

This is where MJ and Brian have posted prior to here for all who want to follow from before their post to date

http://www.cureasps.org/forum/viewtopic.php?f=45&t=439

[D.ap]

From our family to yours
All our love
Update when you are able
We are all thinking of you both.

Love
The Josh P family

[Brian]

Hello
Just thought I would provide an update. MJ has continued to take a reduced dose of Cometriq, which started Fall 2013. Scans recently revealed some growth in the lungs. Its less than 20 percent, but still concerning given the continued growth over the past year and since the beginning of the medication treatment.
So considering this news and the lack of effectiveness of the drug at a tolerable level, we are probably looking for other alternatives sooner rather than later. Our oncologist mentioned Foundation One (google it), which takes a sample of the tumor and attempts to find possible drugs (both approved and trial drugs) that could be used for treatment. Anyone ever heard of this or utilized the service? There are potential insurance coverage issues, but we will see how it works. Any other options that you are aware of at this point?
Thanks for the response, Brian

[Bonni Hess]

Dear Brian,
Thank you for the thoughtful update. I am so very sorry that the tolerable dosage of Cometriq has been unable to stabilize the growth of MJ's lung mets. I was SO very Hopeful that the Cometriq would prove to be very successful for her. Given MJ's history of being unable to tolerate normal dose TKI treatments and her discouraging lack of significant tumor shrinkage and sustained disease stability with all of the TKI treatments which she has tried, I am wondering if a different type of systemic treatment such as one which targets C-met rather than VEGF has been considered? Also, I continue to wonder if resection of her large primary tumor has been considered to help reduce the tumor burden and strengthen MJ's immune system which may enable systemic treatments to be more effective for her? I am personally unfamiliar with Foundation One, but we had Brittany's tumor tissue tested with assistance from another organization and the results of the tumor tissue testing indicated that Brittany's tumors are high in VEGF but relatively low in Met which may be the reason that she had a failed response to the C-met inhibitor ARQ-197, but yet has thankfully thus far had a very successful and sustained response to Cediranib which targets VEGF. Is MJ being monitored with complete scans including chest/abdominal/pelvic CT scans every 3 to 6 months, and an annual brain MRI and bone scan, or is she only receiving chest CT scans? Please keep the Board updated as you are able on the results of the Foundation One tumor testing if you decide to move forward with it, and also whatever new treament plans are made. In the meantime take care Brian and know that dear MJ, you, and your family are all held very close in my heart and my most caring thoughts.
With special hugs, deepest caring, healing wishes for MJ, warm friendship, and continued Hope,
Bonni

[Brian]

Well its been a while since an update for MJ
She is still taking Cometriq and stable as of her last scan in November after some growth in August. As usual, the disease is very unpredictable. We are getting ready to try a new drug, Crizotinib or Xalkori. Has anyone heard of this drug or any experience with it?

[Bonni Hess]

Dear Brian, It was so good to hear from you with the very good and encouraging news that MJ's November scans were stable following the concerning results of her August scans. Given the stable November scan results with MJ still taking Cometriq I am perplexed as to the rationale for considering discontinuing the Cometriq and starting her on Crizotinib. We do have some ASPS patient experience with Crizotinib discussed and documented on this Board under the "Other Clinical Trials" topic if you'd scroll down midway through the topic. Unfortuately, Crizotinib was ultimately unsuccessful for the ASPS patient who was taking it and she tragically lost her courageous battle late last Spring. I continue to be perplexed about the decision to not remove MJ's primary tumor in her leg since it seems the reduction of tumor burden would enable systemic treatments to provide a more successful and sustained response. Since MJ has unfortunately thus far had only relatively short term disease stability and not very significant results in terms of tumor shrinkage and disappearance from the several systemic treatments that she has tried, it seems that removing her primary tumor might enable her to have a much more significant and more sustained response with the reduced tumor burden. I Hope that MJ is feeling good and tolerating the side effects of the Cometriq well, and that she, you, and your family had a wonderful Holiday season and are enjoying a good start to the New Year. My continued most caring thoughts and very best wishes are with MJ, you, and your family and I will be anxiously awaiting your next update when your time allows. With deepest caring, healing wishes for dear MJ, and continued Hope, Bonni

[Olga]

Hi Brian, they both ALK inhibitors - crizotinib and the next-generation ALK inhibitor alectinib. Is it planned to be a clinical trial or off-label prescription by the oncologist? I am just wandering what is the rationale here, is MJ tumor ALK positive? Or there are some information that they can be useful outside of the ALK positive cancers?
Our community experience with these group of drugs is very limited here, no success stories but it does not mean anything due to a very small number and advanced stage of the participating patients. In addition to a girl that Bonni already mentioned, we had Kevin on crizotinib but it was in the end of his battle
http://www.cureasps.org/forum/viewtopic ... &start=195
and I do not know of anyone on alectinib.

[D.ap]

.

I wanted to share information on my wife MJ and her diagnosis with ASPS

She was diagnosed in July 2009 with ASPS. The initial MRI revealed a 14 x 11 cm tumor in the upper right thigh. A CT scan further revealed mutiple mets in the lungs, as many as 12-13, with the largest at 3.8 cm. After consulting with an ortho oncologist and medical oncologist, surgery did not appear to be the best path. They suggested, along with a radiation oncologist, the Cediranib trial at NCI in Bethesda. We actually live a few hours on the east coast from Bethesda, so the option was pretty easy for us navigate. After several weeks of logistics, we were accepted into the trial at NCI. She began taking the medication 9-1-09. I wanted to share this information and her progress on this site. I have found over the past couple of months that this site has been very helpful for me and appreciate everyone sharing stories and information. I will keep you updated on the progress - We have our first staging scans late in October. The nurses indicate that she is the first person on the trial. It will also be her first course of treatment, as she has had no other treatments since being diagnosed

Hello Brian and MJ
The above quote was from you Cediranib trial link in 2009


Has the primary stayed at 30% less and is it into the bone or just in the muscle?
Have the lung mets been eliminated and or reduced? Have more appeared?

I've been reading and trying to absorb the 2 types of ASPS being discussed to date with the current discussion with the medical field. Muscle or bone maybe as I understand.

Olga's discussion on ALK etc is very relevant and Bonni is accurate wanting to surgically take the primary tumor from the overall picture and thus reducing the sarcoma cells being circulated via blood into MJ's system as a result of the mature vascular tumor in the leg. Only if it can be performed with the negative margins.

Please keep us updated when you are able.
Love
Debbie

[D.ap]

Brian and MJ
I found this website that is specific to ALK
Hope it helps to guide you through some more info that you can use today
Within the site there is an article discussing mutations discover to share with your onc possibly

Crizotinib / Ceritinib mutation study
Posted on June 7, 2014 by admin

http://alkinhibitors.com/?cat=13

Also clinical trial studies in process

"Currently there is an ongoing phase I clinical trial of crizotinib and PF299804 (NCT01121575) originally designed to evaluate the therapeutic benefit of inhibiting MET (crizotinib is a potent MET inhibitor) and EGFR T790M in erlotinib resistant EGFR mutant NSCLC patients. However, our studies suggest that combination of crizotinib and PF299804 may represent a rational therapeutic strategy for at least a subset of EML4-ALK NSCLC patients that develop acquired crizotinib resistance."

To follow preclinical research -


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3278914/
Love
Debbie

[Vega343]

Dear Brian -
I am reading your posts as my 9year old daughter will be starting Ceridinib trial at NIh next week.
I have heard of foundation one and actually talked to someone there, and an ASPS friend that has used them. I know they try to code so insuarance will cover, but it often doesn't. The family I know found it useful - I am planning to try it should the ceridinib trial not work well for us.
Please take care - I hope everything is going okay for your wife.
MJ (my name is MJ too!)