Patti from Houston TX - Dx June 2012 - RIP Aug 20 2012

[Patti]

Hello All...
I suppose anyone who logs onto this site is doing so with a heavy heart, and more questions than answers. I, too, have just received a diagnosis of ASPS. They removed an orange-sized tumor from my right thigh, and mets are in my bones and lungs. I am strong in my faith, but still overwhelmed with the questions. Along with the big questions, I'd like to know what method of controlling this horrid disease everybody here is using? My oncologist said it doesn't respond to chemo or radiation (and this seems to be largely backed up by all the websites), but he is recommending putting me on Sutent to slow it down. Problem is that MY COST is over $2,600 for a one month supply. WHO CAN AFFORD THAT? I think it's unconscionable that ANY medication cost that much; but that's the American way, I suppose. Is there anyone who has found any co-pay assistance for this that could direct me?? Also, is there anyone in the Houston area? Just wondering where they are going for treatment??

I look forward to reading some of the stories - I'm sure I will find some answers in your personal journies. Thanks, in advance, for any advice or input. God bless you all as you each fight this fight!

[Olga]

Hi Patty, welcome tho this board no one would like to be on.
There are different situations with our patients clinical courses and their treatments. The treatments most often used are local - surgery, ablation, radiation (not the conventional reg. dose type but the radiosurgery, some used neutron radiation before). It is good that your primary tumor removed. How multiple are the mets are in bones and lungs? What are the sizes? Our patients had their bone mets resected or irradiated and the lung mets resected as well. May be you should evaluate all the local options before of proceeding with the targeted chemotherapy treatments, they often produce only time limited response.
About the cost of Sutent. You can try to request an assistance with the co-pay from the company producing it, or to participate in a clinical trial for Cediranib instead - it is a drug of the same class (TKI) that shows even more activity than Sutent. The trial is avail. at the NCI in Bethesda. more info can be found here:
http://www.cureasps.org/forum/viewforum.php?f=45
Read what we have here, ask what you need to know in order get educated. ASPS is a very rare cancer and we often know more about it than the oncologists. Are you treated at the MDACC?

[Bonni Hess]

Dear Patti,
I am so sorry for your recent ASPS diagnosis, and as the mother of a daughter diagnosed with ASPS almost eleven years ago I truly know and understand what you and your family are going through right now. I know that you must be overwhelmed, but I am grateful that in the midst of everything that you found your way to this Web site and Discussion Board which is an invaluable source of shared researched and anecdotal treatment information as well as strengthening support and encouragement for ASPS patients and their families from all over the world.
Because ASPS is so extremely rare and little known even by most oncologists, shared information is one of our most powerful weapons in fighting this challenging disease.
I had written a response to you last night, but somehow it didn't successfully post . What I wrote was very similar to the information that Olga shared so I won't repeat it again, but I completely agree with what Olga has said. If your lung and bone mets are treatable with resection, ablation, or radiosurgery that is probably a better treatment option at this time than a systemic treatment like Sutent which may have a limited time response. However, if your lung or bone mets aren't treatable with any of the options which I've listed, then you may need to pursue a systemic treatment to try to stabilize the progression of your disease and shrink/destroy the mets. As Olga said, Cediranib or Pazopanib may be better systemic treatment options than Sutent because they have shown better succcess for most ASPS patients, and they are available in Clinical Trial so that the drug is paid for by the pharmaceutical company. Are you being treated at MD Anderson, and if so, who is your sarcoma oncologist? I am aware of one ASPS patient who is currently being treated at MD Anderson who is participating in a combination Pazopanib Trial which has provided her with seven months of disease stability and significant tumor shrinkage.
Please know that you are not alone in your battle dear Patti. Those of us on this Board are here to help you with shared information and support, so feel free to write with any questions that you may have that we will try to answer.
Take care, let Hope lead you through each day, and keep in touch as you are able.
Reaching out to share special caring thoughts, healing wishes, and continued Hope,d
Bonni Hess, mother of 30 year old Brittany diagnosed at age 19 in July 2001

[wangcns]

Welcome to the ASPS boards, Patti. I'm relatively new to it as well, my boyfriend Kevin was just diagnosed with metastatic ASPS last week. I'm afraid I don't know as much as some of the others here, but I wish you all the best, plus a healthy dose of love and hope for your battle with this disease. If we learn anything useful, I will relay it on this board, but most of it seems to already have been disseminated by the other users.

Kevin also had his primary tumor removed, but it appears the disease has spread to his lungs. His largest nodule is 6 mm, with innumerable smaller ones in both left and right lungs. We are waiting to hear back from Dr. Axel Rolle in Germany, to see if it's possible to get laser-aided lung surgery. As far as we know, his cancer has not spread anywhere else and fingers crossed, gods willing, it will stay that way. I do highly recommend going through the older posts. It seems that there is no consensus amongst the medical community about how to treat this disease, but constant monitoring and the resection of mets appears to be the most effective treatment.

Hang in there, we're also reeling but I keep telling myself (and Kevin) that we'll make it through this.

-Connie

[Bonni Hess]

Hello again Patti,
I wanted to add to my previous post that it is critically important that you be very proactive, well informed, and as knowledgeable as possible in fighting your disease. Vigilant monitoring of your disease with complete initial scans including a chest/abdominal/pelvic CT, a brain MRI ( NOT just a brain CT which is inadequate to find brain mets at their smallest and most treatable size), and a full body bone scan are essential if you have not already had all of these scans, and then the chest/abdominal/pelvic CT's should be done every three to six months and the brain MRI and bone scan once a year, or sooner if there are any new mets or increased growth of exisiting mets in these areas. The most effective way to manage this disease is to find and treat mets at their smallest most treatable size.
Olga or Ivan who are the Web site administrators will probably move your posts to the Personal Stories and Updates section where they can be more easily followed by other ASPS Community members on this Board.
My continued most caring thoughts and very best wishes are with you, and I will be awaiting your next update regarding your treatment decision.
With hugs, special caring, healing wishes, and continued Hope,
Bonni

[Trixi]

Hello,
My name is Trixi. I am Patti's mother and I am devastated. Our beautiful Patti went "home" this past Monday, August 20, 2012.
We were told that Patti's case was a-typical. The speed with which her tumors and mets spread apparently is not the norm with ASPS. Patti was fine during spring break (in retrospect she said she felt a bit tired). She and her husband along with kids and other family members, cousins, enjoyed a fun mini trip to San Antonio.
Two days after returning home Patti experienced excruciating pain and ended up in the emergency room. Long story short, the pain came from broken ribs and in the span of 2 weeks she ended up with 5 breaks - the breaks were not caused by any kind auf trauma, just normal body movement.
Patti spent the next 6 weeks being tested at Baylor in Houston, but the doctors were at a loss. They looked at all kinds of possibilities, even suggested "at least it's not stage 4 cancer"...(blood tests did not indicate cancer). A pet scan the end of May finally showed a tumor in her groin and many mets throughout her body, skull, bones, and lungs. Once the tumor was diagnosed as ASPS, she transferred to MD Anderson, and her appointment was set for the middle of July with Dr. Patel of the ASPS team in the sarcoma department. Further tests at his request then revealed that from the previous pet scan the end of May until mid July her mets had spread, grown, and multiplied to "too numerous to count". Clinical trials of any treatment was now out of the question. Constantly nauseated, Patti could not keep any food down and became weak. She spent 2 weeks at MD Anderson in the sarcoma department, but was soon moved to palliative care and finally released home to hospice care. Two weeks later her battle was over. From diagnosis to death just two and a half months. She was never treated for ASPS. Never had the opportunity. Unbelievable!!
Patti was 44. Until this disease struck her down, she was full of life - caring, loving, giving, very artsy with many inspired beautiful talents. A godly woman. She was a writer and a painter and created beautiful art. ASPS came out of nowhere and sideswiped all of us who loved her. By God's grace we will get through this.
Patti's memorial service will be Sep. 3 - her 45th birthday (Patti's daughter is serving in the U.S. Coast Guard and is currently on a cutter out in the Pacific and cannot be home before Labor Day weekend, however, thankfully, she was granted a 30-day leave in July to be able to spend time with her mother.)
We are going to ask that in lieu of flowers for the memorial service, donations be made to this site and hope that people will follow through. Research to combat this absolutely horrible disease was Patti's desire. She definitely wanted to contribute to finding a cure.

[Trixi]

I suppose I should have posted this under the RIP category. Unfortunately my daughter's story was not a success story.

[Olga]

I am so very saddened to see that another beautiful life was lost - and I am very, very sorry for your loss. We will respectfully move this to the RIP part of our board where we remember all we had lost to this cruel disease. Thank you for finding the will to let us know what happened to Patti, it is important for us to know everything.
Some comments for you and to other readers to try to clarify why your daughter life ended so suddenly and she was not able to try any treatments. As I understand the situation (I might be wrong of course), ASPS typically forms in a younger age people but usually it grows slowly, sometimes it is a very slow growth that takes decades to be found by giving out any symptoms. ASPS mets may sit undetected for a long time and only when they reach some significant load they manifest themselves - when they grow slowly the body is able to accommodate a lot of them. I suspect that she might have developed ASPS at about 18-20 years old and was having it all time along. The pet scan at the end of May did not reveal all the mets she had just because it is very typical for ASPS mets not to lit up on the PET scan as they do not attract enough glucose that is used to carry the tracer. I suspect that the other scans that were done in the mid July - CT or perhaps MRI - more of her small mets were found that had already spread before. In short - I do not think that her ASPS was faster and more aggressive than usual, it is just she was Dx on a very late stage.
She was lucky in a sense that she could live her life without it being overshadowed by this cruel disease, have kids and be creative. I would love to see some of her works if you could share them with us - may be a picture - so we can place them on this web-site.

[Trixi]

Dear Olga,
I would love to contribute more info concerning Patti's health issues through the years, as you might have hit the nail right on the head, in that she may have carried the disease in her body for a much longer time than she knew. I am doing this in hopes that it helps someone else in the future. Doctors at MD Anderson told us that her case was a-typical. It probably was in more ways than one. You see, Patti had a large tumor on the pancreas when she was 15, 30 years ago. Dr. Jimmy Howell at Houston's Methodist Hospital (at the time on the famous DeBakey team) removed it. No further treatment followed that surgery. The records and the pathology report were still available and we provided them to Dr. Patel's office at MDA. It also was a "vascular" tumor according to the description.
Dr. Patel did not think there was a connection from that first tumor at the age of 15 to the ASPS tumor, because of its location, but we became convinced after her ASPS diagnosis (gut feeling, if you will) that there very probably was a connection.
Patti was never a healthy person, had problems with her reproductive organs, had several adhesion removal surgeries and so on. Through the years she was treated by many physicians who came up with all kinds of suggestions as to what was wrong with her, porphyria being one of them, but mostly every doctor that saw her couldn't quite put his or her finger on the situation. She had a lot of pain in her body, always, but you'd never know it. Despite fatigue that she often felt she worked, she raised her children, was involved in her church and community, created beautiful art, and she never complained. She was full of life and love.

[Trixi]

Dear Olga, I placed Patti's picture on the reply but it looks like it needs to be reformatted. Here is a link to view some of her art: https://www.facebook.com/JustMeGallerie
Thank you for your reply. You may be so right in what you said. We certainly do hope that an early detection will be possible in the near future and, of course, a cure !
Trixi

[Olga]

Thank so much for sharing her picture and her works, the paintings are beautiful although there is some sadness in them, or may be this is me - how I see them. We will re-size Patti's picture to fit.
Also thank for providing some additional details about Patti's health history and about her previous pancreatic tumor. There are few known cases of the pancreatic metastasis of alveolar soft-part sarcoma and the one Patti had might be a met from the primary elsewhere or even a primary, there are some unique locations for this very rare tumor. I am wondering if the pathology slides are still kept at that hospital from that first surgery.

[Trixi]

We collected pretty much all of Patti's health records from the various procedures done by various physicians in the Houston area in the past 30 years and provided everything to Dr. Patel's office in the sarcoma department of MD Anderson here in Houston. I don't know if these records would be of benefit to your ASPS research group. If you think that they are, our family would not mind to release and forward them to you. I am not sure about the existence of the pathology slide from 30 years ago but will check into it.
Dear Olga, as for Patti's art work, I don't necessarily see sadness, but there was a depth that certainly transcends the natural realm. Some, it is true, reflect pain - and victory - experienced from a personal tragedy (not realated to sickness). Many of her pictures are accompanied by inspired poetry.
ASPS is a thief ! Every life lost to this cruel disease is one too many !!
I am happy to say that I already heard from one family friend that they sent a donation in Patti's memory and hope there will be others.
The fight is on, ASPS needs to be stopped in its tracks !!!

[Amanda]

Hello Trixi,
I am so sorry for you an her family! I am heartbroken for her to have gone thru so much in such a short period of time
I am deeply sorry for you're loss

[Trixi]

Thank you, Amanda.

[Bonni Hess]

Dear Trixi,
I just read your heartbreaking entry after being away from the computer and the Board for the past several days and am numb with shock and grief, and deeply sharing the profound pain and sorrow of your beautiful daughter Patti's devastating loss to this insidious disease only a few months after her ASPS diagnosis. I truly know and understand your pain more than most dear Trixi having both fought the very challenging ASPS battle with our precious daughter Brittany, and having devastatingly lost our beloved oldest son in a tragic vehicle accident.
It was so very gracious and thoughtful of you to somehow find the strength and energy in the midst of your profound grief to reach out to share with those of us on this Board this most difficult of news as well as dear Patti's beautiful picture, incredibly talented art work, and the invaluable information about her diagnosis and health history.
I agree with everything that Olga has said regarding the probability that Patti may have actually had ASPS for many years and that it was diagnosed at a late stage since ASPS is typically a very indolent disease. In my eleven years of experience with ASPS I have only personally known about two other patients who lost their battles within a couple of months of diagnosis, and their tragic losses were, I believe, caused by the toxicity and effects of their harsh chemo treatments rather than by the disease itself. As extremely upsetting and inexplicable as it may be that Patti's ASPS diagnosis was not made much sooner and possibly many years ago, I also agree with Olga that it may have been a gift since she was able to Live her Life more fully without her Life being turned upside down by the immense heartache, fear, and challenges that come once an ASPS diagnosis is made. There is a saying that the best gift one can leave the World is a Life well Lived, and though tragically MUCH too short, it is obvious from what you have shared that Patti's Life was very well Lived and touched many other Lives. Her beautiful legacy will Live on in her children, her artwork, the cherished memories she shared together with you, family, and friends, and in the thoughtful donations being made in her memory for critically needed ASPS research to Hopefully help find a cure someday very soon and prevent the tragic loss of anymore precious Lives to this monstrous disease which has already taken far too many.
As you begin the difficult grief journey, I would like to suggest that you may want to contact Compassionate Friends which is a wonderful international support organization for parents and families who have lost a child of any age to illness, accident, or any other cause. You can access their Web site at CompassionateFriends.org. Through Compassionate Friends you can meet other parents who truly understand the depth of your pain as those who have not lost a beloved child may not be able to, and Hopefully through them you will find some peace and comfort from shared understanding and dialogue.
Please know dear Trixi that I am holding you, your family, and your beloved angel Patti very close in my aching heart, and that my most caring thoughts, deepest sympathy, and greatest shared sorrow are with all of you. We will continue Patti's courageous battle with her bright spirit leading and inspiring us on our journeys, and keeping her always in our loving thoughts and memories.
Reaching out heart to heart with deepest caring and immense sorrow,
Bonni