Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi. I'm Michele O'Neill. Mom of Nathan. He's 20 now and was diagnosed with ASPS, stage 4, August 2009. Started in the groin area, deteriorating part the pelvic bone, and his lungs had too many to count, nodules. He had a trial of 2-chemo cocktail in Nov. 2009 thru January 2010 with not enough success to continue. Now he is an out patient at National Cancer Institute in Maryland area, in the USA. He is currently taking Cediranib, since March 2010. So far, along with prayers, group healings and positive intentions, from thousands around the world, there has been 50% shrinkage in the size of the lesions in the lungs (that are being tracked) and the small ones are gone. The pelvic area tumor is shrinking as well. We all stay very positive and our lives have really changed a lot. I'm interested in hearing what is working for the side effects and other stuff that has been helpful with ASPS. Currently Nathan has no appetite and other uncomfortable side effects in the stomach and bowels. I'm a big health nut and believe in supplements but the NCI forbids supplements. I'm open to and invite you to correspond with me.
Sincerely with Brightest Blessings, Michele O'Neill

Hello Michele,
Welcome to the forums!
I am so sorry that your son has ASPS but you are in a very good place now for help and suport!
Please become a member of the forums and post in are Cediranib area! We have other there they are sharing information and helping eachother and it is wonderful I am sure that you get alot of replies.

Till then i am I am very happy to hear of the shrinkage he is having! Many are being helped by this new drug and yes the side effects are tuff ....

Have you read are other folders.. In are personal area and it showes how some with this that are alive and doing well at 15+ years An yes they had alot of ASPS and it allways makes me feel better when i read that... Tell him to read that post

Again i am sorry that ASPS has entered your life but very happy you found this forum!
I dont think i would be where i am at this moment with my diagnosis if i had not found this forum and posted and gotten so much help!
I also didnt feel so alone and thats a HUGE help

Hi Michelle (and Nathan, if you are reading)

Welcome to the forums. I read the message you sent me. It's great to hear that the tumors are responding well to cediranib. As for me, read my thread http://cureasps.org/forum/viewtopic.php?f=4&t=66 and this post http://cureasps.org/forum/viewtopic.php ... t=45#p2557 which contains an up-to-date summary.

Can you list all the tumors he currently has, and their sizes? That way we can offer our opinions, and options for you to consider. I cannot offer any advice regarding dealing with cediranib side-effects (because I've never taken it), but I know that others definitely will. Weight loss and appetite have already been discussed here http://cureasps.org/forum/viewtopic.php?f=45&t=520

I think it's very important for you to make a treatment plan going forward. While cediranib is working, and tumors have shrunk, I would look into resecting (or ablating, etc) them as much as possible, depending on your situation. Aggressive surgery is probably still the best treatment for ASPS. Cediranib's effects may wear off, so I think most people would agree that removing as much of the disease as possible while it is down is the best way to go.

Dear Michelle,
I am so deeply sorry for your son Nathan's ASPS diagnosis and all that I know he and your family are going through, but I am grateful that you found your way to this Web site and that you have reached out for information and support. I am very grateful too that Nathan has had such a successful and encouraging response to his Cediranib treatment thus far. As both Amanda and Ivan have mentioned, there is a specific Cediranib thread on this Discussion Forum under the ASPS Clinical Trials subject section where you will be able to find helpful shared information about other ASPS patients who are receiving Cediranib treatment, including my daughter Brittany who has been on a Cediranib Clinical Trial in Edmonton, Alberta for the past seventeen months. There certainly are some negative, but mostly tolerable, side effects from the Cediranib treatment, the most common of which seems to be severe and chronic diarrhea, nausea, loss of appetite, weight loss, mouth sensitivity, fatigue, and hand/foot syndrome. These side effects have been discussed by the Cediranib patients in the Cediranib topic section and I would encourage you to read and follow their entries. I also encourage you to cut and copy your entry in this section and post it in the Cediranib section and then you will be able to update it with information about Nathan's treatment experience and results so that others can follow it and respond to you. Please feel free to ask any questions which I or others may be able to try to answer for you. In the meantime, please take care Michelle, know that Nathan and you are not alone in this battle, give Nathan my very best wishes, and keep in touch with this Discussion Board as you are able.
With special caring thoughts, healing wishes for Nathan, and continued Hope,
Bonni Hess, mother of 28 year old Brittany who was diagnosed nine+ years ago at age 19

Welcome Michele,
My daughter, jordanne, was diagnosed last September. She is currently in the NIH trial as well.
First of all, let me say that in my opinion you started in the right place...Prayer.
As for the debilitating side affects, Jordanne had some severe weight loss for a few months, mostly from no desire to eat because of the severe diarhea. She has been able to get a better handle on it by avoiding dairy and using metamucil. Mix it with not too much water and take often. For diarhea you also have to almost think backwords of the normal good health advice. think white. White bread, white rice. Jordanne also drank 1-2 Boosts a day when she was having the most problems.
I agree that as soon as possible, Nathan should have his primary removed if it is resectable.
This forum truly does help you to know that you are not alone. Every story is different and lots of differing opinions. That seems to be the way with a disease as rare as ASPS. Although, it is very sad that those suffering from this disease are so young. But the upside is that young people heal quickly from surgeries and usually have an invincible attitude. So, you will find that most on this forum are family members rather than the patients. They're out living their lives the best they know how.
May the Lord bless you and keep you,
Dotty

Some excellent news about Nathan. Here is a part of an update we received from Michelle -

He then was accepted at the NCI and has been taking Cediranib for a little over a year. The lung lesions that are being tracked have had 59% decrease in size and the small ones are gone. The groin area tumor is decreasing as well. His health is great! He is currently staying with his Nana in So. California and started college in February.

Hi Ivan,
I am so grateful that Nathan's mother contacted us to update Nathan's status, and I am so appreciative of sharing it with the Board. It is wonderful news and very encouraging that Nathan has now had over a year of stability since beginning the NIH Cediranib Trial and that he is having signifcant shrinkage of both his lung mets and his primary tumor in his groin, as well as total disappearance of some of his lung mets! Perhaps you could move Nathan's updates to the Cediranib topic section on the Board so that those who are following Cediranib treatment experiences and results can more easily access it there. Hopefully Nathan will have continued and sustained disease stability and tumor shrinkage/necrosis, and his mother will write to update the Board on his continued results and any side effects that he may be experiencing.
Sharing the great joy of Nathan's successful Cediranib response with deepest caring and continued Hope,
Bonni