Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I just wanted to let folks know that I started the trial at the NIH this past week and that my family and I are very grateful to be able to participate since it seemed like the most promising option for us. I have been fighting ASPS for 7 years and now for the first time we are trying a systemic treatment, since surgery at this time is not an option. The folks who post and all who support this site are angels and we are so grateful for the information and kind words.
As of now almost a week in, the side effects that they described are very real and at times difficult for me to readjust my normal pace but I am dealing with it and my wife and daughter remind me to be strong.
I will post how things are going once I know a little more.
Eric

Hi Eric,
I am sorry that you now have to move to a drug but this drug seems to be darn good and is helping people. Seven years almost to the 15 year + club
http://www.cureasps.org/forum/viewtopic.php?f=4&t=494

Hey Eric:

Just passing by and saying HI, let me know if you have any questions about Cediranib. We have a pretty active Cediranib thread, you are always welcome to send a pm too.

Adios;

Mario E. Arevalo

Dear Eric,
It was so very good to hear from you again as it has been quite awhile since you last posted. I am so sorry that surgery is not a treatment option for your disease right now, but I am so grateful that the very promising new systemic treatment Cediranib is available and that you have been able to enroll in the NIH Clinical Trial. I am grateful too that you posted an entry on this thread, and I will look forward to your updates. In the meantime, please take care, know that my special caring thoughts and my very best wishes for a successful response to the Cediranib are with you, and keep in touch with the Board as you are able.
With deepest caring, healing wishes, and continued Hope,
Bonni Hess

Good luck with the cediranib, Eric, I firmly believe it is saving my son's life...

Eric,
Welcome to the wonderful world of Cediranib. It certainly does take a while to figure out what works and what doesn't for the side affects as they seem to change.
My daughter, Jordanne was only dignosed a year ago and was able to join the trial in January. We see that as nothing less than a miracle. I think that if you perservere you will be rewarded, so hang in there when you feel discouraged. This forum is an invaluable tool for information on what seems to work and what doesn't for those side affects. I suppose that it is also a great thing to know that others are going thorugh the same things so you won't feel so alone.
My prayer is that you will enjoy each day with your family and have to think about your disease as little as possible.
God Bless,
Dotty

Thank you all for the kind words and encouragement I just returned from my first mid-cycle check up and all is going well. After some early side effects I am doing well, mostly dealing with fatigue and occasional sore throat. So after two weeks I am trying to figure out how much exercise I can do, maintain weight due to new diet protecting my liver, and how much work I can reasonably do without taxing myself too much.

My family and friends are all praying and sending me go thoughts and energy and optimism that the Cediranib will work for me, I feel very confident and hopeful.
From San Francisco
Eric

Hi Eric

I am glad you are feeling pretty well. When cediranib kicks in, and you tumors shrink (hopefully ) you should resect them when it becomes possible. Although we've had some members who had prolonged success on the drug, ASPS usually develops resistance to this class of drugs - hopefully after a long while.

Hey folks just wanted to let you know that our first result were positive no new growths and 10% reduction in the larger mets they are tracking in my liver. Also, since I started on the trial seems like the harshest side effects were at the begining, now mostly minor effects compared to others I have read about. Also my labs have been improving particulary those that track liver function, I truly believe improving my diet has helped improve my liver function and minimalized side effects. Not to many folks write about diet but I feel strongy it is very helpful, I suggest a very good cook book "The Cancer Fighting Kitchen" by Rebbeca Katz.
Anyways hope all are enjoying the Thanksgiving Weekend we are very thankfull for this web site and all of you who contribute your vast knowledge and experience.
from San Francisco
Eric

Hello Eric
I am so happy to hear this great news!
Being positive is hard at times but i am glad that you have such great news and that should make you very positive!
Happy holidays to you and your family!
I am checking out this book and it looks great! Thanks!

Dear Eric,
Thank you for your thoughtful update and for sharing the wonderful news regarding the very encouraging results of your two month Cediranib status scans. I am so grateful that you are having a positive response to the medication and that your initially harsh side effects seem to have already lessened and become more tolerable. When your time allows, can you share with the Board what tumors other than those in your liver (if any) are being targeted for measurement, if there are other targeted mets such as possibly ones in your lungs, if those have also shown shrinkage, and what size the liver mets were when you began the Trial? In the meantime, please take care, travel safe on your bi-weekly Clinical Trial trips to Maryland, and keep in touch with the Board as you are able.
Sharing your good scan results with happy hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

Eric,
I'm very happy to hear that your initial scans are showing shrinkage of the tumors. It seems like most see up to 30% shrinkage by about the 3rd round and then stabilize. Hopefully, you can be one to jump past that mark! Either way, any shrinkage is a step in the right direction.
The trip across country every couple of weeks is pretty draining, so hopefully you'll get to the once a month trips soon. We fly out of Seattle so know what you're experiencing. The only good thing is that we get to go to the front of the security line due to her usually needing a wheelchair at the airport.
Jordanne has been off of the Cediranib for about a month now while she had surgery for a broken leg. We fly back tomorrow for more scans on Mon & Tues so please keep her in your prayers. We expect that they will be able to get her started back on Ced. within the next couple of weeks if all looks good. She has been eating as much dairy as she can while she's been off because the drug seems to make her lactose intollerant. Maybe things will change with this round, as some of the side affects come and go.
Have a blessed Christmas,
Dotty

Thank you all for the words of encouragement, I have asked for a written report of my restaging but have not recieved once I do I will share more details, just going on what they told me after the restaging. I will be at NIH on the 21st of Demember I am always on the look out and hoping to meet other asap patients.
Peace and happy holidays
From San Francisco
Eric

Eric, in your opinion, what part of your new diet has helped improve your liver function? We had some people taken off this trial because their liver function has never come back to a normal numbers so it might be interesting to hear (although we never know if it really worked or you body did that).

Olga,
Mostly we have reduced the amount of protien I was eating, I have now gone totally vegitarian, and almost vegan. I have cut out all processed sugars. After losing some weight initialy I have stabalized, I also stay away from taking any other drugs so as to not tax my liver with having to detox other stuff, obviously including any drinking, I used to drink some wine and beer now and again but have not drank since disease progression to my liver. I also try to drink lot's of water and have begun to excercise regularly again although lightly. When I eat at home and don't get away from preparing our own food, seems like my lab results for liver function get better, when I travel or get to busy they tend to go up.
Thanks for asking, while I don't believe that my diet will cure my cancer I am convinced that by eating in the most healthy way possible it increases my chances to minimize side effects and keep my body strong to survive the cancer and the treatment.
thanks for all the great work you do on this site it makes a huge differnce and offers us patients so much hope.
Eric