[DONE] Lucio on Cediranib Phase 2 clinical trial at NCI

[Fictional]

I'm sorry - more thoughts.

It did occur to me - don't know whether this is significant. A lot of people think met inhibitors are kind of duds in ASPS, but Cindy's son (is that right?) is still on it and I posted the data which looked like a lot of stability for ASPS (like 70% or something?)

Our history was 6 months on sutent - growth of lung mets - decided to stop the student remove the primary... after surgery (and off sutent) - the lung mets were growing like crazy. Maybe this was the rebound. That precipitated our conventional lung surgery.

Immediately after surgery she got into ARQ197 - and we left the drug after just 7 weeks because it looked as if the little mets were still growing, although were all still small (only 1 was above 1 cm at trial entry if I remember correctly). Then we were surprised that 3 out of 15 or so were necrotic. We went back on ARQ197 as a result - and were on for maybe a total of 9 months.

What I'm trying to say is I wonder if a met inhibitor following a the stopping of an antiangiogenesis drug like Sutent might help transition to stability. It might have been the course of disease and the lung surgeries, but or both - but I just raise this as a possibility.

It may have been we also had a little rebound coming off the R1507. And switching onto Crizotinib quieted things down again. I do not think we saw any rebound off ARq197, on the other hand, but this may be hard to know in our situation since this was around the time of surgeries.

[Amanda]

Hello Lucio and Sky
I am very sorry that the Ced side effects were so strong and that you had to leave the trial. When did they say you would hear back about the approval of Sutent?
Myself and two others are also in the los angeles area.. Please, let me know if you need any help and i will try to be there for you

[Bonni Hess]

Dear Skyflower,
I am so grateful that you found the time to write and update the Board as given the unpredictable nature of this insidious disease I was becoming increasingly concerned about Lucio since there had not been an update since May. I am so sorry that the severity of his Cediranib side effects caused him to discontinue the Cediranib treatment. Was the decision for him to leave the Trial his personal decision or at the recommendation of Dr. Kummar and the NIH Clinical Trial staff? Also, was it a specific side effect like weight loss or increased liver enzymes that precipitated his stopping the treatment, or a totality of all of the negative side effects? Had he experienced any increased growth of his mets at the time that he left the Trial, or did he still have disease stability at that time?
I am very sorry that his recent scans show increased growth of his lung mets, but I am grateful that he doesn't have any new mets.
I think that it would be advisable to contact Dr. Littrup as soon as possible to have him review Lucio's scans regarding the possibility of Cryoablation for his ablatable lung mets. Unfortunately Dr. Littrup may not be able to treat the met that is pressing close to Lucio's aorta since with Cryo it is not possible to precisely control the area of the freezing which could damage the aorta. However, this is a determination which Dr. Littrup will need to make based on his review of Lucio's scans. If Cryo is not possible for the met close to the aorta, it seems that surgery to remove it should be pursued as soon as possible to prevent it from becoming too large to safely resect. Also, laser resection with Dr. Rolle seems like a possible good treatment option if he is able to do it, and if it is affordable for Lucio given your financial concerns/restraints. Dr. Littrup is located in Detroit so this would be a less expensive travel option than going to Germany for Dr. Rolle's treatment. Sutent seems like a good systemic treatment option to pursue to try to stabilize disease progression once the lung mets have been treated, but I personally think that treatment of the lung mets shoud be the first priority since although Sutent may help to prevent new tumors and stabilize the growth of existing ones, based on my research and anecdotal experience knowledge, Sutent does not seem to provide very significant tumor shrinkage (Please correct me 'F' or Olga if you have information/data to the contrary) which I think is especially important in regard to the met pressing against the aorta.
'F' has provided some very good information/recommendations for other possible systemic treatment options, and for applying for financial approval/authorization of medications and treatments from the insurance company. I know that Lucio and you have a lot of important decisions to make, and my best wishes are with both of you for finding the best treatment option. I will be anxiously awaiting your next update. Please take care, tell Lucio that my deepest caring and special thoughts are with him, and keep in touch as you are able.
With special caring thoughts, healing wishes for Lucio, and continued Hope,
Bonni

[Fictional]

p.s. I posted our Money Tips and ASPS on a thread here: http://www.cureasps.org/forum/viewtopic.php?f=40&t=540
in case it's helpful.

There is anecdotal evidence that repeated lung surgeries improves survival.

[skyflower]

Thanks a lot, it's really comforting to know that bonni, 'F' and amanda are there to respond to posts
lucio's decision to stop treatment was a personal one. he had been mulling it over for a few months, and it was due to the compounding of the side effects. we were thinking about going to see dr. littrup, but then when we got home and looked at the scans, the tumor that was near his aorta almost looks like a pacman on the verge of chomping down on a similarly sized dot. so we are not hopeful cryo will be an option.
the sutent decision should come within a few weeks. i think the insurance company is time-limited, but i'm not sure what it is. lucio is setting up to have a case manager (thanks 'F'!). in the meantime it lets us get all the information we need regarding surgeries and alternate drug options.
we have not read that book, but we have read similar diet/health/cancer books. we know that some people are hesitant to change anything about their diet and lifestyles until there is scientific data to back up the claims, but it doesn't hurt to eat healthier and not clog up your system with unnecessary pesticides/herbicides/antibiotics/hormones. and many drugs out there started out as plants anyways that someone wanted to isolate the active components of. i think i will repost this in lucio's personal folder as he is not on cediranib anymore, feel free to delete this post.

[Amanda]

Hello Sky
This and all other posts even decisions to leave a trial are of help to others so I hope it stayes
I was at a point on wild amounts of vitamins and that was the time that they said my scans looked maybe a small amount different so i am a firm believer in food and eating the food that gives health and strong immune systems Are bodies are amasing they clearly know what to do and how to do it i am sure better then many doctors. An keeping are bodies ballanced and also alkaline is important. I have a doctor here that i see and he helps me do this and if you would liek to talk to him mail me off the boards and i will give oy his info Eat well and get outside in the sun and laugh Green cleaning supplies also are important the fumes from the other things can not be dong good to any lung paitent. Also, herbs and some vitamine can actually harm you if done wrong i have sadly seen the after math of this.
I hope thay they get back to you soon with an ok for the Sutent... I still cant get over the wait for an ok from a buissness that thinks they some how know
better then your doctor >< Maybe i should have posted this in your Personal area :/