Sandeep from UK - Dx 2008

[Arch]

Hi,
I'm sorry to hear this. When we consulted at the University of Michigan(they see quite a few sarcoma patients) before starting cediranib, the options that they discussed in addition to cediranib were interferon and trebectedin. There is a trial of RAD001 in sarcomas and is available in Europe and a trial of dasatinib, another TKI here in the US, both these specifically mentions ASPS. I am not aware of anyone who has been on any of these trials, just pointing at things that you might want to discuss with your doctor. Did the doctors at NCI suggest anything ?

Take care and best wishes
Arch

[Bonni Hess]

I am so deeply sorry and saddened to hear this heartbreaking news regarding Sandeep's continued disease progression which has resulted in him now being taken off of the NIH Cediranib Clinical Trial. As I discussed with Sandeep in previous postings, I have had continued concerns about him not having had his primary tumor in his thigh resected and his brain mets resected or Gamma Knifed because having a large tumor burden could reduce the effectiveness of the Cediranib and make it difficult for it to successfully shrink his tumors. I am not a doctor, but personally I think that removal of his primary. removal or Gamma Knife of his brain mets, and removal or ablation of his liver mets if possible should be a priority as soon as possible to reduce the tumor burden so that any new systemic treatment might have a better chance of success. However, concerningly at this point rebound and aggressive disease progression from being taken off of the Cediranib might be a risk, so there may not be adequate time to be off of the Cediranib for two weeks prior to surgery and then to complete the surgery and recovery before/if rebound occurs. Did Dr. Kummar offer any other treatment options or suggestions? Pazaponib is another tyrosine kinase inhibitor similar to Sutent and Cediranib which has shown some promise, but it may have an active brain mets exclusion because of the risk of cerebral hemorrage. which would disqualify Sandeep from receiving it until his brain mets are resected or destroyed with Gamma Knife. I wish that I had more suggestions to offer, but Hopefully Olga, 'F', or others on this Board will be able to share some other possible treatment options or ideas. I do think that It is critcally important that Sandeep aggressively research all available information and consult with another experienced sarcoma specialist immediately so that he can move forward with a new treatment, whether surgical or systemic or both, as quickly as possible. Please give him my best wishes and keep this Board updated as you are able.
With special caring thoughts, healing wishes for Sandeep, and continued Hope,
Bonni

[Olga]

I am very sorry to hear that.
As I understand Sandeep did not have a good response on sunitinib so him not having a good response on cediranib is not a big surprise, usually people respond to the tyrosine kinase inhibitors give consecutive when they had good response on the first one, then the resistance to the first one - then moved to the second one and get the response again (until the resistance).It is hard to say what is the reason for his tumor non-responding to the TKI, may be they lack the target.
I would really look into starting gemcitabine weekly as we had an amazing response in the patient who's been on it for a long time (18 months?). But she did not have brain mets, it might not really cross the blood/brain barrier. So I would start gemcitabine and in the meantime I would treat the brain met and if possible the spleen met by the radiosurgery. The brain met needs to be treated by the GammaKnife, I know it is hard to get a treatment in UK when it is decided by the treating oncologist that it is not going to be offered, but I would not settle on it and have done it for my own money in Germany, it is cheaper there and they accept patients when they think it is a right way to go, they have quite a few radiosurgery places, I would start from Dr.Vogl asking him what he can advise.

[Fictional]

Gemzar only is a possibility as suggested by Sarah's experiences here: http://www.cureasps.org/forum/viewtopic ... lit=gemzar

Perhaps relevant though is that Sarah did not have any disease beyond the lungs and her disease was more limited I think (1cm lung nodules if I remember correctly).

You may want to look into molecular profiling. Also, with our recent discovery that our daughter's met resected after 5 months on Crizotinib was 50% necrotic (initially we heard 40%, but the final report says 50%) - you might also want to consider the Crizotinib clinical trial. At least in the US Crizotinib is thought to have a high likelihood of approval. It seems to have a dramatic response in a small subset of non small cell lung cancer (85% response rate with some complete remissions) Some patients have been on it > 2 years.

The Crizotinib trial (also known as PF02341066) is for refractory solid tumors. It may be available in the UK.

[sanbhar]

Thanks Bonni for trying to get in touch with me through Olga!
I am reasonably ok. Currently waiting for my repeat CT after nearly 4 months off cediranib. I am currently being screened for a new trial here in the UK-at the Royal Marsden hospital, London. This is OSI-027 trial using a PI3 kinase inhibitor. Fingers crossed. So I am still hanging in and remain hopeful!!
Best wishes to all and thank you Bonni, Olga.
Sandeep

[Olga]

Sandeep, hi, thank you for checking in. Did you ask them if your brain met could be treated by the radiosurgery? It is usually easier to get while you are between the clinical trials and not restricted by its rules.

[sanbhar]

My single brain met is only 10mm in size and has remained so since diagnosis over 2 yrs ago. it's not causing any symptoms. While it remains stable and have not had any direct treatment to it, my trial options are quite broad. I have been advised not to interfere if things are stable and especially when the treatment itself carries a risk. Pretty conservative approach but rightly or wrongly I am happy with it. Despite the progressive disease I am enjoying a fair quality of life. My body scans from yesterday will put me in the picture.
I have to say that both Sunitinib and Cediranib made me more Ill than the ASPS itself. The last 4 months of my life (off treatment) have been the best since the diagnosis. However, I do realize that it won't last forever.
Each one of us is going through a lot!! It takes a very brave person (and hats off to the kids who go through this ordeal) to go through the psychological and physical trauma of the illness and the treacherous treatments!!

With love
Sandeep

[Ivan]

My single brain met is only 10mm in size and has remained so since diagnosis over 2 yrs ago. it's not causing any symptoms. While it remains stable and have not had any direct treatment to it, my trial options are quite broad. I have been advised not to interfere if things are stable and especially when the treatment itself carries a risk. Pretty conservative approach but rightly or wrongly I am happy with it. Despite the progressive disease I am enjoying a fair quality of life. My body scans from yesterday will put me in the picture.
I have to say that both Sunitinib and Cediranib made me more Ill than the ASPS itself. The last 4 months of my life (off treatment) have been the best since the diagnosis. However, I do realize that it won't last forever.
Each one of us is going through a lot!! It takes a very brave person (and hats off to the kids who go through this ordeal) to go through the psychological and physical trauma of the illness and the treacherous treatments!!

With love
Sandeep

The best treatment outcomes are always when mets are dealt with when they are asymptomatic. If I was in your place, I would get rid of the met before it starts growing.

[Bonni Hess]

Dear Sandeep,
Thank you for your thoughtful response and update. I am so grateful that you have been feeling relatively well since discontinuing the Cediranib. My very best wishes are with you for good results from your Thursday's scans which will Hopefully show no new tumors and no increased growth in the size of your primary tumor and your multiple mets, and I will be anxiously awaiting your update about the scan results and your next treatment plans. For all of the reasons which I have discussed in my previous entries, I continue to be concerned about your not having had your primary tumor resected and your brain met resected or treated with radiosurgery. I respectfully disagree with the very conservative medical advice which you have received regarding not doing anything about the tumors unless/until they become symptomatic, but this is of course your decision to make. I only know that at least five ASPS patients who I am personally aware of who chose not to have their primary tumors removed for various reasons, tragically lost their courageous battles, and three who currently still have their primary tumors are heartbreakingly experiencing progressive disease and failed systemic treatment. You are very fortunate that your brain met has not grown during the past two years, because based on my personal experience with Brittany's brain mets, as well as extensive researched and anecdotal information, this is certainly not typical of ASPS brain mets. One ASPS patient had such aggressive growth of his brain mets during a five month time period between scans that his mets tragically grew too large to be resectable or treatable and he devastatingly succumbed very quickly to the disease. Does your oncologist think that there is a possibility that your previous Sutent treatment may have killed the brain met, and that what is seen on the brain MRI is just residual necrotic tissue? Have your doctors provided any data regarding the treatment outcomes thus far for ASPS patients participating in the OSI-027 Trial? My research of this Clinical Trial indicates that it opened in June 2008 and is scheduled for completion in February 2011, so apparently it has been extended, or possibly a Phase 2 Trial is going to begin? If you do enroll in the Trial and begin treatment, it would be deeply appreciated if you will keep the Board updated on your OSI-027 treatment experience, side effects, and results. In the meantime, please take care Sandeep, know that my continued special thoughts and healing wishes are with you, and keep in touch with the Board as your time and the situation allow.
With deepest caring and continued Hope,
Bonni

[Amanda]

Hello Sandeep
I am glad that you are feeling well while you are off the drugs and that the 10mm brain tumor is staying stable.
Though i hope soon you will look at treatments like some of the new drugs others are on right now. It is very important that you have this time of healthy feelings also! It sucks to feel bad all the time i did after my last surgery and though it was not what you went thru it was still a difference in feeling good to dam bad!
I hope that you are having a wonderful time and keeping your eyes in the forums at the new treatments others are trying. An at one point think about the 10mm thing being removed

However, I do realize that it won't last forever.

what if it does? What if they say you are stable all over?
Then you can go get some stuff out and recover and feel good again
We do not know with this cancer how to kill it when we need to 100% and we also do not know why some just stay stable and live 100%
Please, don't say things like that it seems like you are planing I did this also! Plan to go to the beach next year and still feel good and that maybe you will have the 10mm thing removed and feel better shortly after. But, please don't plan not feeling well like it is looming soon in your future. I did that so i wouldn't be crushed at new news, then i thought about it and realized that the crush maybe less on me then living with cancer problems looming. We all deal with this bastage differently. But, i see you in the sun and happy as i do with everyone with cancer and i hope soon that you see yourself there also.. Much love to you! <3