Cory from Ohio - Dx July 2012 - RIP Sep 06 2013

Those who lost their battle with ASPS :(
Cory from OHIO
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Re: Cory from Ohio - Dx July 2012

Post by Cory from OHIO »

Thanks so much. I will get on that asap... He just started pazopanib 2 days ago so hopefully it does help. And We only have preliminary results of the spinal MRI so far, so we don't know how big or how involved, but they definitely seen metastasis to his spine. They requested 2 more MRIs for today, of the upper part of his spine now. So yet again, another setback....
Bonni Hess
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Re: Cory from Ohio - Dx July 2012

Post by Bonni Hess »

Dear Angie,
Thank you for somehow finding the emotional strength and physical energy to post an update in the midst of all that you and Cory are going through. I am so deeply sorry for all of Cory's pain and suffering, and for his aggressive disease progression and newly diagnosed multiple mets. Olga has provided you with a good recommendation and referral to Dr. Littrup for possible Cryobablation treatment to help shrink/destroy Cory's largest unresectable lung mets to help improve his breathing, but I understand that you will need to priortize treatments depending on the final results of the spinal MRI and the size of the brain mets. In the meantime, it seems that a systemic treatment like Cediranib or Pazopanib that can cross the blood brain barriar is essential to try to stabilize disease progression and shrink the brain, lung, and spinal mets. However, my concern with at least Cediranib, is that we were told that due to the risk of cerebral hemorrhage Brittany's brain had to be clear of any active brain mets when she started her Cediranib Clinical Trial four years ago. I don't know if there is the same concern/risk with Pazopanib which is a TKI in the same family of targeted drugs as Cediranib, but I think that this is certainly something which needs to be discussed as soon as possible with Cory's oncologist before he continues taking his Pazopanib. Please know that I am holding Cory and you very close in my heart and thoughts and feel the embrace of my caring hugs. Take care dear Angie, keep in touch with the Board as your time and the situation allow, and let Hope continue to lead you through each day.
Reaching out heart to heart to share my deepest caring, healing wishes for Cory, and continued Hope,
Bonni
Cory from OHIO
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Re: Cory from Ohio - Dx July 2012

Post by Cory from OHIO »

Sorry it has taken a awhile to repost, it has been a crazy crazy two weeks! So Cory was released after being in the hospital for 3 days. They told him the spot in his spine was actually on the spinal cord, further complication the situation. Luckily it's only one small spot in the lower spine, but its' accompanied inflammation causing horrible symptoms. In the past 14 days he has gone from being completely fine with walking on crutches, balancing etc etc to being completely wheelchair dependent. He has no feeling or strength in the lower half of his body. he can move his legs yet so i wouldn't say its quite paralysed but its pretty close and extremely difficult to cope with. The day after his release he was barely able, but managed to do his final fitting for the prosthetic leg, and was able to bring it home. Unfortunately the 57,000 dollar piece of equipment is collecting dust in a corner of the house....

They originally planned to attack the new spot in his spinal cord hard with 10 treatments of radiation while also treating his brain with some gamma knife, but the team of oncologists collaborated, deciding that the risks far outweighed the reward in this case, since A) this is such a difficult and rare spot for a met to show up B) ASPS historically doesn't respond we'll to radiation and C) he would have to be off his Pazopanib for a longer period of time and they don't think he can afford to do that considering the last 4 week break seemed to allow for rapid progression of this disease. So because of all that they decided to do one treatment with radiation which was last Wednesday 5/22. The doctor told us that the radiation was being treated as palliative care. They don't expect a cure for the spot, but rather to help alleviate the symptoms. They explained that there simply is TOO MUCH going on throughout his entire body (spots all over his lungs--including 2 large ones--, 13 tiny spots in his brain, one or two other lingering spots elsewhere). Basically trying to pinpoint one spot and taking weeks off systemic treatment is dangerous because of the rapid nature of Cory's particular case. As sad as it is for me to repeat, they told Cory his time was ticking... That they are going to continue trying every way possible to treat with systemic treatments ect, but at this point they want to help improve his quality of life rather than quantity. It doesn't sound like there's much research on whether these drugs can help with spots in the spinal cord so they are optimistically giving that a slight bit of hope, but certainly not much.

As I mentioned, Cory now has officially no strength in his good leg. No control over bladder and bowels and increasing pain in his back. One week and 2 days post radiation if there would be any alleviation of symptoms we would have seen it by now, so that certainly don't look good. I've been in contact with Bonni Hess a little, while all this was going on and have been trying to research as much as possible, but I'm stuck on what they say about there being too much going on to stop chemo and treat one tiny spot. Surgery would certainly set back systemic treatment and I would hate to find out where this disease is gonna pop up next if we don't get him back on chemo NOW!! Unfortunately we have been subjected to the slippery slope of systemic treatments and it is really limiting our options here.

As always I appreciate any and all feedback I can get. THANK YOU

Angie
Bonni Hess
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Re: Cory from Ohio - Dx July 2012

Post by Bonni Hess »

Dear Angie,
Thank you once again for somehow finding the physical and emotional strength to update the Board in the midst of all of the increasing immense challenges and heartaches that you and Cory are going through and facing, and for which I am so deeply sorry and saddened. I understand and agree with the critical importance of Cory remaining on a systemic treatment at this time to try to stabilize the rapid progression of his disease and shrink his multiple and widely disseminated mets. I also know that because of the risk of hemorrhage associated with TKI treatments like Pazopanib that he cannot undergo surgery without discontinuing the drug for a couple of weeks pre and post op. However, is there any possibility that his spinal met could be treated while he is on Pazopanib with non-invasive radiosurgery such as the Synergy treatment that thankfully seems to have been successful in shrinking/destroying Tom's lumbar spinal met? (Please read the information related to this under Tom's topic in this Personal Updates section, and perhaps you could send his wife Kathy a private message to obtain more detailed information about the procedure) The following is an excerpt from Olga's October 6th, 2008 post to Kathy and Tom regarding Synergy radiosurgery. Hopefully the information will be helpful to you:
" I found the information about Synergy which is an advanced new type of the radiosurgery for the spine http://www.neurosurgery.pitt.edu/neuro_ ... nergy.html and it looks very good for me, they say the success rate for the local control is 90 % which is very good. Radiation therapy is not that effective for the ASPS but the radiosurgery is better."
Do the doctors have any concerns about Cory being on Pazopanib with the presence of his multiple brain mets? When Brittany began her Cediranib Clinical Trial, one of the requirements for her being accepted into the Trial was that she not have any active brain mets due to the risk of cerebral hemorrhage with Cediranib, and we were required to have a verification of the status of her treated brain mets from her radiation oncologist who performed her Gamma Knife procedures. However, I don't know if this is an issue with Pazopanib, but it certainly should be discussed with Cory's oncologists to ensure the safety of him taking Pazopanib. If Cory continues taking the Pazopanib, I am holding VERY tight to Hope that it will work to shrink his spinal tumor as it did for a young woman who I follow that was on a Pazopanib/Verinostat Clinical Trial at MD Anderson until she recently heartbreakingly developed four brain mets. As extremely discouraging and frightening as the situation seems right now, try to stay strong, don't give up, and continue to hold on to Hope dear Angie. More than four years ago we were facing a similar situation with Brittany with her disease rapidly progressing to widely disseminated areas of her body including an unresectable/untreatable and Life threatening met in the head of her pancreas. Thankfully, a few months after she started Cediranib she had dramatic shrinkage and disappearance of her multiple and widely disseminated mets, and has now had four years of stable disease with no new tumors. It is my greatest Hope that Cory will also have a very successful response to his Pazopanib, that his tumors will shrink and disappear, and the current rapid and widespread progression of his disease will be stabilized. Please know that you and Cory are not alone in this difficult battle. I and the others on this Board are here to try to help you with strengthening support and any shared information which we may have that may be helpful to you. Know that I am holding Cory and you very close in my heart and my thoughts, and sending my very best wishes and most postive thoughts and energy your way.
Heart to heart with deepest caring, healing wishes for Cory, and continued Hope,
Bonni
Bonni Hess
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Re: Cory from Ohio - Dx July 2012

Post by Bonni Hess »

Hello again Angie,
Apparently the Synergy information link that I gave you in my previous post is no longer available :-(, but you can Hopefully get the necessary information by contacting Kathy either by posting a message on Tom's topic or through a private message.
With more special caring thoughts, healing wishes for Cory, and continued Hope,
Bonni
Olga
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Re: Cory from Ohio - Dx July 2012

Post by Olga »

Bonni, thanks for letting me know that the link is not working anymore. The new one is here:
http://upmc.com/Services/neurosurgery/s ... rgery.aspx
Olga
D.ap
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Re: Cory from Ohio - Dx July 2012

Post by D.ap »

Cory and Angie
My name is Debbie and I am Josh's mom
Just wanted to let you know we are thinking of you both and hoping that you are finding answers to your questions and making progress in your fight ..
With special thoughts and prayers

Debbie , Josh and family
Debbie
Bonni Hess
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Re: Cory from Ohio - Dx July 2012

Post by Bonni Hess »

Dear Angie,
It has been three months since you last posted on the Board and I am always increasingly concerned when people are out of touch for too long. I know that dear Cory was facing some very difficult challenges with his aggressively progressing disease, but am holding very tight to Hope that the Pazopanib was able to stabilize his disease progression and shrink/destroy his multiple and widely disseminated mets. Please know that you are both held very close in my heart and my most caring thoughts, and keep in touch as you are able.
With deepest caring and concern, healing wishes for Cory, and continued Hope,
Bonni
Cory from OHIO
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Re: Cory from Ohio - Dx July 2012

Post by Cory from OHIO »

Hi everybody,

I am sorry to report that on September 6th Cory passed away--14 short months after being diagnosed. I haven't been able to bring myself to posting until now, I am sure you all understand. Since my last post I can say things slowly and steadily worsened day after day. By mid June Cory started experiencing severe back pain which led to another trip to the hospital where I remember him having his first seizure--such a scary thing to witness for the first time. 2 days after he was released from the hospital, and despite what the doctors advised, Cory's mom and I flew out to Las Vegas with him and took a road trip throughout the western US (bucket list stuff)... We made it to the Grand Canyon, Arches National Park, Mount Rushmore, Yellowstone and EVERYWHERE in between. I am convinced that that trip was our miracle! 2 full weeks without even speaking to a doctor or nurse -->must be some sort of record! Don't get me wrong there were many hiccups along the way considering Cory was completely wheelchair bound by that point, had no control over his lower body and his upper body strength too was starting to weaken, but we made it work! My Birthday was a few days before the trip as well and Cory, for obvious reasons, wasn't able to spoil me as he usually would--I remember him saying "I wish I could give you the world" to which my response was "Love is Enough". When we got back to Vegas, just hours before our plane took off, we went out and got a tattoo together with the words "Love is enough" encircled in an infinity sign. Totally out of character for me, though I will forever cherish those words and that trip!

One week after we got back home Cory experienced a seizure that lasted long enough for me to have to call the ambulance and Cory was, again, stuck in the hospital for a week +. Turns out the tumors in the brain were progressing and causing the seizures so the radiologists threw around the idea of more radiation ect ect...in the meantime Cory's pain level was through the roof.. and the visit took a turn for the worse when we were confronted with a team of doctors who told us that Cory was at such a high risk that no doctor would increase his pain medication unless he had signed a DNR.... they told us the repercussions of him slipping into a coma if he was resuscitated, not to mention the unlikeliness of him surviving the resuscitation considering his weakened state...so it only made sense to get him out of the hospital and in the comfort of our own home.... so hospice it was! It was great that he was able to be around his family and friends for the next 2 months and hospice took such a load off my back by making daily visits, filling prescriptions, cleaning his pressure sores, tracking his vitals etc etc. I couldn't be more happy with the support they provided...

Slowly but surely we noticed Cory started loosing energy... he would sleep 20+ hours a day....seizures became routine almost.... his appetite started to wane and finally the day before he passed Cory gave us the most comforting affirmation of all... he was pretty incoherent at the time but told us that his grandma and grandpa were trying to "call him". They had passed away years ago, but we all know they are still here with us and were up in heaven ready to welcome their grandson home.

I again want to thank everyone on this forum for sharing your experiences with the rest of the ASPS community. It has been a great resource for me during this whole process and I cannot thank you enough Olga for coordinating this whole forum. If there ever is anything I can do to help please let me know.
Take care and God bless!

Angie
jenhy168
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Re: Cory from Ohio - Dx July 2012

Post by jenhy168 »

Dear Angie,

I am so sorry for your loss. :*( Glad that he was able to enjoy the western road trip. He's so lucky to have had you by his side and thank you for sharing. May he rest in loving peace.

Kind Regards,
Jen
D.ap
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Re: Cory from Ohio - Dx July 2012

Post by D.ap »

Angie

We are so sorry and saddened to hear of Cory's passing
Time sure helps the healing and we wish you and Cory's family healing

Much love

Debbie and family
Debbie
Bonni Hess
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Re: Cory from Ohio - Dx July 2012

Post by Bonni Hess »

Dear Angie,
It is with the deepest sorrow, sadness, and a broken heart that I read your thoughtful update with the devastating news of your beloved Cory's tragic loss. Cory and you are truly a portrait in courage for all that you endured and the incredible strength and positive attitudes with which you faced his increasingly challenging battle and the enormous heartaches and obstacles that it presented in your young Lives. I am so grateful for the great love that you shared with each other which helped to strengthen both of you on your extremely difficult ASPS journey, and I Hope that the love you shared which will never die, and cherished memories of happier and healthier times shared together with dear Cory will help to comfort and sustain you in your grief. I know that this holiday season will be especially difficult for you and Cory's family without him here to share it together with you, but I Hope that you can somehow find peace and comfort by holding tight to each other and treasured memories of your beloved Cory. Take good care of you dear Angie and know that I am here to talk/listen any time that you may need as you remain a very special part of our ASPS Community.
Holding dear Cory, you, and your family so very close in my aching heart and reaching out to embrace you with my deepest sympathy, shared sorrow, special hugs, most caring thoughts, warm friendship, and love,
Bonni
Last edited by Bonni Hess on Mon Dec 16, 2013 9:17 pm, edited 3 times in total.
Amanda
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Re: Cory from Ohio - Dx July 2012 - RIP Sep 06 2013

Post by Amanda »

Angie :*(
I am so sad to hear this! I was wondering what had happened.. i am so glad you had that special time together! It will remain with you for ever and you can reach back into that and he will be there!

My best friend said things to me when she was also *supposedly* delirious! I believe from what have seen with people / patients that our loved ones wait us an greet an hold us as we pass over!

When your time comes *Make it a LONG time* He will be there for you with others!

May when you are ready find love brilliant an may your life be filled with health and happiness! You so deserve this my dear! He was blessed to have you!

Love to you an him an family an friends! May he rest in beautiful bliss!
Last edited by Amanda on Mon Dec 16, 2013 9:26 pm, edited 1 time in total.
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~

Amanda
D.ap
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Re: Cory from Ohio - Dx July 2012 - RIP Sep 06 2013

Post by D.ap »

Amanda wrote:Angie :*(
I am so sad to hear this! I was wondering what had happened.. i am so glad you had that special time together! It will remain with you for ever and you can reach back into that and he will be there!

My best friend said things to me when she was also *supposedly* delirious! I believe from what have seen with people / patients that our loves ones wait us an great an hold us as we pass over!

When your time comes *Make it a LONG time* He will be there for you with others!

May when you are ready find love brilliant an may your life be filled with health and happiness! You so deserve this my dear! He was blessed to have you


Love to you an him an family an friends! May he rest in beautiful bliss!
Amen Amanda

Angie and family

When you are ready could you share with us a picture of Cory and stories to help us connect ?
Only when you are ready :roll:
With all our love and continued hugs..

Debbie and family
Debbie
Olga
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Re: Cory from Ohio - Dx July 2012 - RIP Sep 06 2013

Post by Olga »

Angie, I am so sorry to hear that Cory lost his life. Thank you for finding the strength to let us know, we appreciate all the details that you were able to share with us - we need that to better understand the beast we are dealing with. It is very satisfactory to know that we were able to provide you at least some support in this hard time of your lives - although I realize that Cory was diagnosed at the very advanced stage and there was very little that could be done to help him. He was lucky to have you by his side.
Olga
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