Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hey all!!! This is Brittany writing from my Mom's name because she was on and I wanted to post this--- I had my lung and abdominal CT's, and brain MRI yesterday. I had my tibia and thigh MRI's and full body bone scan today. Great news! No new tumors anywhere!!! I believe that 2 of my lung nodules grew from 8mm to 11mm. But, one of my lung tumors shrank, and everything else is stable! I'm just so glad that there's nothing new anywhere. I think the vaccine may have just worked! I mean, when I went backpacking through South America in 2004, I came home and had brain and liver tumors growing rapidly, and that was only after 2 1/2 months without a scan. This time, I was in England, Wales, India, Thailand, and then back to England again... gone 5 months (6 months with no scans)... I was scared to death to come home for scans, but no worries, all is well! Thank you to all that were thinking about me over the past few days. We all know what a scary time it is for us patients around scan dates. Anyway, I'm home now, and will be back to being an active member on here--- so sorry I've been so out of touch, but I had to go out and live life a bit! Love you all!
~Brittany

Brittany, you and Ivan and Anthony have to invite all of us to a party these days! You and your family set an example for all of us how far can metastatic ASPS patient go if he stays on the top of the disease and does everything to remove and destroy all of the new mets. I would be very grateful if you post in this tread full story of your ASPS battle starting from when if was Dx so new people who are coming here could see what can be used for ASPS mets and that there are tactical advantages when dealing with the mets as they go and not adding them up.

Dear Brittany,
Those are very good news.
My love to you and to all our ASPS patients.
Wish for a full cure - very soon.
Yossi

Dear ASPS Community Friends,
Following a consultation appointment today with Dr. Michael Mulligan, a highly qualified and very experienced thoracic surgeon at the University of Washington, to discuss possible resection of Brittany's remaining 7-8 lung mets, we have decided against proceeding with surgical removal of the mets. Because several of Brittany's mets are located very deep in her lungs, Dr. Mulligan feels that in order to successfully remove all of the mets it would require several very difficult thoracotomies which would result in the loss of a substantial amount of lung tissue including an entire lobe, and most likely permanent post operative debilitating side effects caused by the extensive surgery and tissue loss. Because Brittany thankfully seems to be feeling good at this time and has experienced only very minimal increased growth in her lung mets during the past few years, Dr. Mulligan and we agreed that surgical resection of the mets is not an option which we want/need to pursue at this time. However, because of the relatively small number of lung mets which are all less than one and a half centimeters, and their safe location away from blood vessels and organs, he feels that Brittany would be an excellent candidate for the minimally invasive and lung tissue sparing Radiofrequency Ablation treatment which has already proven successful in previously treating her ASPS liver and tibia mets. Dr. Mulligan highly recommended Dr. James Luketich at the University of Pittsburgh to us since Dr. Luketich has extensive experience in treating lung mets with RFA. We are now in the process of trying to arrange a consultation appointment with Dr. Luketich, and I will keep this forum updated on the outcome of the consultation and our treatment decision. In the meantime, please take care everyone, enjoy a most beautiful and blessed Holiday season, and keep in touch with this Web site as you are able.
With special caring thoughts and continued Hope,
Bonni Hess

Dear ASPS Community Friends,
Following a review of Brittany's most recent chest CT, Dr. Luketich thankfully feels that Brittany is a good candidate for the RFA procedure to try to destroy her visible 7-8 lung mets. Because her mets are located in several lobes of both lungs, it will require probably three different RFA procedures to treat all of the mets. We will be going to Pittsburgh for the procedures where the first RFA will be performed at the University of Pittsburgh Medical Center on Wednesday, January 9th and then the others during the next two to three weeks, with Brittany unable to fly Home in between RFA treatments to prevent the risk of pneumothorax while her lungs recover from each procedure. We are very appreciative of this relatively new technology which allows minimally invasive tissue sparing treatment of her deeply located multiple lung mets, and we are holding tight to Hope that the procedure will be very successful in completely destroying the treated mets. I will keep this forum updated on Brittany's RFA experience and the outcome of her treatment. We Hope that the Holiday season will be filled with special, beauty, peace, and joy for all of you and your families, and that the coming year will bring to all of us the finding of a desperately needed effective systemic treatment and cure for this extremely challenging disease.
With Happy Holiday and Happy New Years best wishes, special caring thoughts, and continued Hope,
Bonni

Bonni, I'm sorry for just posting this now, but I just thought of it. FYI: I just learned from our oncologist at Seattle Childrens, Doug Hawkins, that Dr. Fredric Hoffer has joined UW radiology. According to Hawkins, he is a world's expert in radioablation for lung tumors in children and was heavily recruited from St. Judes. I'm sorry I didn't tell you earlier - I've been a little stunned since our own bad news last Friday.

You've probably already made plans to go to Pittsburgh, but even if this doesn't change your immediate plans, it is helpful to know he is now a local resource with expertise in radioablation. Here is one abstract by him: http://www.thieme-connect.com/DOI/DOI?1 ... 004-828943

Because I don't know how regularly you check this board, I'll copy this note and also send it to you by your personal email.

Blessings to you and Merry Christmas - 'F'

Dear ASPS Community Friends,
I have written an update about Brittany's January 9th Radiofrequency Ablation treatment for two of her lung mets in the RFA thread of the Lung Metastases section of this forum.
With special caring thoughts and continued Hope,
Bonni Hess

Bonni, I've opened an additional topic for this occasion and moved your post there so it will be easier to follow the case. I am very grateful (as I am sure everyone here) that you are willing and able to share the details of the procedure with the community. You guys an example for everyone here. Tell Brittany that we are rooting for her!

Dear ASPS Community Friends,
Brittany had her three month brain MRI on Wednesday, February 26th. It is with great relief and happiness that we received the very good news results that the scan showed no new tumors and no renewed growth of her two resected brain mets which were surgically removed in March 2005. Because of the nature of ASPS brain mets to appear and grow quite rapidly, we will continue to be vigilant in scheduling brain MRI's every three months, but due to increasing concerns about the amount of radiation exposure to Brittany's body from regular CT scans during the past six and a half years since her diagnosis, we are going to begin scheduling her chest, abdominal, and pelvic CT's and her bone scans every six months, unless symptoms or problems develop which dictate more frequent scans. As always, we will continue to aggressively and relentlessly search, research, and network for an effective systemic ASPS treatment and cure, and to hold tight to Hope that one will be found sometime very soon. Take care dear friends, and please keep the Web site updated. We all need each other.
With special caring thoughts and continued Hope,
Bonni

Dear Hess Family,
We all share the joy over your good news! I loved seeing the picture of you on your travels. Thanks for sharing!
We are well in Tampa.
Ellen

Dear ASPS Community Friends,
On Thursday, April 24th we received the devastating results of the MRI which was done to evaluate the cause of Brittany's recent upper right back pain and area of swelling. Heartbreakingly, the scan revealed that she has a large 5.9 cm x 3 cm x 2.6 cm. mass in her spinal muscle which has grown to intrude through two vertebra and is nearing the spinal cord. Thankfully the tumor is not yet compressing the spinal cord which could cause paralysis, but we must proceed very quickly in arranging for the surgical removal of the tumor to prevent this from happening. Because of the well known radioresistant nature of ASPS with large tumors, radiation is not an option, and because of the close proximity of the tumor to the spinal cord, Radiofrequency Ablation is also not an option. We are scheduled to meet with both an orthopedic spinal surgeon and a spinal neurosurgeon at the University of Washington on this Tuesday, April 29th, and will Hopefully be able to schedule surgery to safely and completely resect the tumor some time this week or next. Additional scans have been ordered to determine if there is any nerve or bone involvement, and also a complete spinal MRI to determine if there are anymore spinal area mets. Prayerfully these scans will be negative. If the surgery can be done, it will be a very difficult, extensive, and lengthy surgery which will involve the removal of several vertebrae to access the tumor, and then replacement of the vertebrae and insertion of a rod. This is a very frightening and challenging situation and we are all deeply worried, but Brittany is handling it with her usual incredible strength and courage. We were very perplexed and concerned about the apparent uncharacteristic rapid growth of this tumor which seemed to come out of nowhere since Brittany only began to experience pain and the swelling about a month ago. To try to determine the rate of growth of the tumor we requested to look at the previous scans and were dumbfounded and infuriated to find that the tumor was clearly visible in both the August and November 2007 chest CT's, but was inexplicably and inexcusably not noted in either radiologist report nor was it observed by the oncologist. We had been told at both follow-up scan appointments that Brittany had no new tumors and very little if any increased tumor growth of her lung mets. We always request to look at the scans and insist on receiving a copy of the radiologist report. The oncologist told us that the scans were not yet available for viewing, but we did obtain a copy of the radiologist report, and since both the oncologist and the radiologist report said that there were no new tumors, we unfortunatley trusted their "expertise" and did not pursue trying to be able to personally review the scans as we usually do. Tragically this appalling medical negligence has resulted in this tumor now growing dangerously large which will require a much more difficult surgery, and puts Brittany's precious young Life at much greater risk. Although the tumor was very visible on previous scans, we had no way of knowing about it until it became large enough to create the pain and swelling symptoms which Brittany began experiencing about a month ago. I am sharing this information with you to make you aware of the fact that dangerous medical mistakes can be, and are made, and the importance of being extremely pro-active, vigilant, and knowledgeable. We felt that we were doing everything possible in this regard, but yet we are still now tragically faced with this increased challenge. Although I am only personally aware of two other ASPS Community patients on this Web site who have heartbreakingly had tumors develop in their back, it is extremely important for all of you to know that this insidious disease can metastasize to the back, to make sure that your oncologist and radiologist are diligent in reviewing all scans for any new mets, and to be aware of any concerning new symptoms such as unexplained back pain. I will try to keep you updated on the outcome of Brittany's further spinal scans and surgical consultation this week as time and the situation allow. In the meantime, please take care everyone and keep in touch with the Web site. We all NEED everyone's shared anecdotal information and updates to try to be as informed as possible about this monstrous disease so that we can better try to fight it.
With a very heavy and worried heart, special caring thoughts, and continued Hope,
Bonni

Praying for Brittany and you all. Please let me know if there's any way for us to help. ASPS is moderately radiation resistant, not completely resistant. There may still be options there.

p.s. We have really been impressed by the Sarcoma surgeons at UCLA. They have the most extensive experience with sarcoma on the west coast and probably the largest collection of ASPS here.

We are doctors, but I have been impressed that Fritz has always called us at the time he is reviewing 'K''s scans.

If there is any question about the difficulty of surgery, I would FEDEX them to Fritz Eilber, head of the Sarcoma group there.

Email off list if you wish. Also you may call me at home (I think you still have my number). I don't know if you check this forum frequently. I'll send a copy of these posts to the email address I had from before.

Dear Bonni, I am so sorry to hear this disturbing news. I am praying for Brittany with all of my heart and soul - she is a strong young lady and she can beat this. I agree with 'F' that asps is not completely resistant to radiation -- I believe that the studies I've seen which show sarcomas to be radiation resistant are dated older than the newer radiosurgical machines they have -- I don't know I think radiation as follow-up to surgery could possibly help. please see my update on my son -- God knows how difficult it would be but maybe Brittany can get gleevec/taxol or gleevec/abraxane? my prayers are with you, Beth

OUr prayers are most definately with brittany and of course, her strong army (family) behind her.... it is very disturbing to hear this. You guys have already endured soo much, but i know u will keep your heads up, your family gives ours soooo much inspiration... your in our thoughts and prayers Brittany and Hess family....
Lots of love
Mandy