Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear ASPS Community Friends,
Brittany received her 12th and last Immunotherapy Vaccine Clinical Trial injection at Dana Farber on July 5th, and we just returned from our most recent trip to Boston for her post Immunotherapy Vaccine CT scans and MRI's. The VERY good news is that since beginning the Vaccine injections in January, she has NO NEW TUMORS! anywhere in her body, and extremely minimal, if any, increased growth in her remaining lung mets. Although we were of course Hopeful that the scans would show that all of the lung mets are completely gone, or at least that they are shrinking and disappearing, we are VERY relieved and grateful that there appears to be stabilization of the progression of this insidious disease at this time. We continue to hold tight to Hope that the Vaccine will continue to work in her body, and that it will eventually completely destroy this cruel cancer. In the meantime, Brittany is moving forward with her young Life, and is continuing to live each day to the fullest with her usual incredible positive attitude, invincible spirit, and great zest for Life. We hope that all of the other ASPS patients who have already completed, or who are currently still participating in the Immunotherapy Vaccine Clinical Trial at Dana Farber will take the time and make the effort to update this Web site with information about their Immunotherapy Vaccine experience and their results, as it is SO vitally important that we all actively communicate, share information, and support each other. Please take care everyone, and keep Hope alive that someday we CAN and we WILL win this challenging shared battle.
With special caring thoughts and strengthened Hope,
Bonni Hess

Dear ASPS Community Friends,
Brittany has made an entry in the Personal Updates section of this Forum, but I wanted to also update this section for those who are following the results of those who participated in the Dana Farber GVAX Immunotherapy Vaccine Clinical Trial, which is still open to new ASPS patients and ongoing in Boston. Yesterday Brittany completed two days of complete scans including brain, thigh, and tibia MRI's, chest, abdominal, and pelvic CT's, and a full body bone scan. When her scans were completed we met with her interim Seattle Cancer Care Alliance oncologist ( her former SCCA primary oncologist has now taken a position at Dana Farber), and we received the VERY good and relieving news that there are no new tumors anywhere in her body, and only minimal growth (less than four millimeters since the April scans which were used for comparison) of her remaining lung mets, with one actually shrinking! While we were of course Hoping that all of the lung mets would be gone, or shrinking and disappearing, we are VERY happy with the results and EXTREMELY relieved that there are no new brain, abdominal, pelvic, chest, or bone mets, especially in view of the fact that it has been six months since Brittany's last scans. We are holding tight to continued Hope that the Immunotherapy Vaccine is working to stabilize the progression of the disease and the development of new mets, and that possibly the very small amount of increased "growth" in her lung mets may be instead attributable to necrosis of the lung mets which is causing inflammation that makes the mets look larger on the CT scans. We will continue to vigilantly monitor the situation with continued regular scans every three months, unless heartbreakingly concerning symptoms arise which require earlier scans. In the meantime, we will not pursue any further treatment at this time, but will continue to aggressively search for the effective systemic treatment and cure which we are all so desperately seeking. Thankfully, Brittany seems to be feeling good, is looking wonderful (See her beautiful picture in the Community Picture section of this forum. It was taken during a camel safari in the India desert on her recent five month backpacking adventure), and is full of her usual youthful energy and her incredible passion for Life. I would like to once again strongly encourage the other ASPS patients who have already completed this Vaccine Clinical Trial, or who are still currently participating in it, to update your results or Trial experience in this section of the Forum. Information sharing and networking with each other is critically important in our shared battle with this extremely rare disease. Please take care everyone, and keep in touch with all of us through this Web site as you are able.
Reaching out to share special caring thoughts and strengthened Hope,
Bonni Hess

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Dear ASPS Community Friends,
On May 16th Brittany had her three month scans which included chest, abdominal and pelvic CT's and MRI's of her brain and left tibia. To our great relief, the scans showed no new tumors or tumor reoccurrence in her brain, liver, or tibia and no new tumors or tumor growth of her lung mets. However the chest CT revealed a concerning approximately one centimeter "nodule" in her right breast. In more closely reviewing Brittany's previous chest CT from February 15th, the radiologist noted that the breast "nodule" was present, but it was so small that it went undetected. A breast ultrasound the following day heartbreakingly confirmed that the "nodule" was a tumor of some kind. Fortunately, as a result of Yossi Landesman's very wise shared advice which we are EXTREMELY grateful for, we refused to allow the needle biopsy recommended by the oncologist Dr. Marc Stewart to determine the nature of the "nodule". Yossi warned us that if the growth was a malignant tumor, penetrating the tumor with a needle could possibly spread the cancer cells, and we were obviously unwilling to take that risk. After a consultation on May 25th with the Seattle Cancer Care breast surgeon, Dr. Krisitine Calhoun, she agreed that given Brittany's history of metastatic disease, it was best to proceed with caution and that a resection of the tumor with good margins was the best course of action. However, she was still quite optimistic that the tumor would prove to be a benign Fibroadenoma because she said that it is extremely rare for ASPS and cancer of any kind to metastasize to the breast. Despite the rarity of ASPS metastasis to the breasts, through the invaluable shared anecdotal information afforded us by this wondeful CureASPS Web site, we were aware of two ASPS patients who have heartbreakingly had breast mets, so while we were holding tight to Hope that the tumor would be benign, we knew that there was a possibilty that it could be another ASPS met. Brittany underwent an outpatient lumpectomy at the University of Washington Hospital on June 4th, and during the two hour surgery her tumor was successfully removed with good margins. Brittany was discharged two hours after the surgery and she made a remarkably speedy recovery, maintaining her usual incredible courage, strength, boundless energy, and positive spirit. Devastatingly, the pathology results which we received after an anguished four days of waiting confirmed that the tumor was an ASPS met. Surprisingly, according to the pathologist, the tumor was not encapsulated as is typical of most ASPS mets, but it was "a fairly well circumscribed nodule". While we are of course very disappointed and concerned by the appearance of this new tumor, we are grateful that it was able to be completely removed with good margins, and we are prayerful that no other breast mets will develop. We continue to hold tight to Hope that the Immunotherapy Vaccine is working to help stabilize the progression of the disease given the fact that Brittany thankfully had no other tumor development and her lung mets continue to appear stable in size and number. She continues to feel good and is full of her usual zest for Life, living each day to the fullest with immense passion and great purpose. Barring any further developments, her next scans will be in August and we will update the Web site at that time. In the meantime, we continue to aggressively research and search for an effective systemic treatment and cure, and to actively network with other ASPS patients and their families. We urge everyone in the ASPS Community to do the same, as well as to update your information on this Web site. Without the invaluable shared information which we received through this Web site and the people who participate on it, we would have been naiive about the existence of ASPS breast mets and the critical importance of proceeding with caution and as much knowledge as possible when undergoing any recommended procedure or treatment. Please take care everyone, keep in touch with the Web site, and have a most happy and healthy summer.
With special caring thoughts and continued Hope,
Bonni Hess

Dear ASPS Community Friends,
Brittany just had her three month scans on Wednesday, August 22nd and it is with great relief, much happiness, and strengthened Hope that we received the VERY GOOD NEWS! that her brain MRI and her lung, abdominal, and pelvic CT's showed no new tumors and only very slight, if any, increased growth in a couple of her remaining lung mets. Based on these results we will not pursue any further treatment at this time and will continue to monitor the disease with regular three month MRI's and CT scans, unless concerning symptoms arise prior to her next scheduled scans in November. We will also schedule a leg MRI and bone scan in about six months. We continue to hold tight to Hope that the GVAX Immunotherapy Vaccine is working to stabilize the progression of Brittany's disease. However, we have mounting concerns about the success of the Vaccine with the recent devastating loss of one patient who participated in the Clinical Trial at the same time as Brittany, as well as the heartbreaking disease progression in two other patients who also received the Vaccine during the same time period. We wish that more of the participants in the Clinical Trial would write to this Forum to share their current status and the outcome of their GVAX Vaccine treatment so that we could possibly have a better data base of anecdotal experience and information to try to draw conclusions from since the research team at Dana Farber cannot release any data until the conclusion of the Trial which is still ongoing. We continue to actively communicate and information share with other ASPS patients and their families, and to aggressively search and research for an effective systemic treatment and cure which will be able to completely destroy this disease. With everyone in the ASPS Community working together on this great shared cause, hopefully someday very soon this extremely challenging battle can and will be won. In the meantime, please take care dear friends, continue to regularly update the Web site, and keep in touch as you are able.
With special caring thoughts and continued Hope,
Bonni

Bonni-we are happy to hear the good news and regardless of what was the reason for the stability - the clinical trial or the citoreduction - an active approach to eliminate all discovered metastases as soon as possible or Brittany's incredible positive attitude which may be helps to keep her immune system on a higher level possible - we are so glad that she gets a break from this illness and can enjoy the summer and have her young life back!

Thank you Olga for your very sweet response to my mom's update.... Yes, the good news was incredible to hear. I admit, I was awfully scared for these scans--- I had been having headaches, abdominal aches, and lungs/ribs hurting a bit. The "no new tumors and minimal lung growth" meant that: I have to remind myself that besides being a cancer patient, I am a human being who also gets random aches and pains just from everyday life... and yes, also post surgery aches and weaknesses from previous procedures and operations. I think a lot of us patients forget that not everything means cancer. Don't get me wrong, you should always get your 3 month check ups or whatever, but if you have anything going on you're the slightest bit concerned about--- get checked!---if not just for your own sanity (I know in my mind I go crazy when I suspect I might have a new tumor somewhere)! Anyway, I'm doing well I've got a boyfriend, I've been riding my motorcycle like crazy this summer, I'm feeling good, gonna go back to school in the winter, ---So, I'm just going to continue living my life and be a happy girl, hope no new tumors show up--- if they do, we'll take care of that when it comes up, I'm babbling, I'm sorry. Bottom line: thank you all for your continuous love and support
--thinking of you always--
~Brittany

Dear ASPS Community Friends,
It is with much relief and happiness that we received the VERY GOOD NEWS! results of Brittany's yesterday's scans which included chest, abominal, and pelvic CT's, brain MRI, and full body bone scan. Thankfully the scans showed no new tumors and very little if any increased growth in her existing lung mets. Although Brittany has thankfully experienced only minimal increased growth in the size of her lung mets during the past few years, even the minimal growth of one or two millimeters every three months can eventually result in the tumor becoming too large to safely resect or ablate. Because we feel, and survivability data seems to support, that it is extremely important to take an offensive approach to this cancer in removing/destroying as many tumors as possible before they grow too large to resect or successfully respond to treatment, we have scheduled a consultation appointment on Monday with a thoracic surgeon to discuss resecting Brittany's several remaining lung mets, hopefully with a less invasive thoracoscopy instead of the more surgically traumatic thoracotomy if possible. I will update this Forum when we have more information to share regarding our treatment decision. In the meantime, we will continue to relentlessly and aggressively research, search, share information on this Web site, and communicate and network with other ASPS patients and their families to try to find an effective systemic treatment and cure. I urge everyone in the ASPS Community to do the same as we all need each others help and strengthening support in this critically important and very challenging endeavor. Please take care everyone and try to keep in touch with this Web site as you are able.
With special caring thoughts and continued Hope,
Bonni

Good news indeed! Hopefully, what is happening w/Brittany and Anthony is a repeat of the melanoma vaccine trial where the tumors where 80% necrosis but no shrinkage on the scans.
Scott

Bonni - thank you for the update and congrats on the good results. Now Brittany can have a wonderful holiday season with the lighter heart. Reg. the possible resection of the lung metastases - ask them if they can resect them without use of staples but to sew the seams. If there will be a surgery then we'll know if there are any necrotic nodules as they do a pathology report.

Bonni, I was delighted to read your post.
Olga, Do the staple devices cause distortion on future scans or is the concern with regard to preserving more lung tissue?
Best regards to all, Ellen

When the stapler is used to close the edge of the resection they need to make a straight line - roll the edge and put two rows of the tiny staples (they are not metal), they cut more tissue for this technique and the rolled tissue is useless too. Comparing to the hand stitching much more lung tissue is lost, I know that some of our patient have negotiated a hand stitching when there were multiple mets with the wide spread - when all lobes are affected, to preserve the lung parenchima. When laser is used by Dr.Rolle most of the smaller spots do not require any closure as the edges are fused when nodule is burned by the heat, it is a big advantage when centrally located nodules are resected as there is no edge to roll so they have to cut whole branch or even a lobe to use stapler.