17 yr old daughter from Alberta - Dx July 2017

[D.ap]

So incrediblably happy to hear of clear margins!
Love and continued prayers for recovery !!
Love , again ,
The Pearson's

[arojussi]

Thanks for sharing good news. I had multiple surgeries and mutipe times learning to use my body parts again after losing muscles and bones. Based on my experience after you figure out how to move damaged limp just a little pit rest will come suprisingly fast. Recovey will continue long. After my primary tumor surgery I continued to experience improvement years after surgey until I didnt notice any difference between my operated and not operated shoulder. Of course my surgery wasnt as intensive as your child. Physical therapy should be started as soon as surgeon feels it is save.

[gray12]

Thanks guys! Appreciate everything!

[Bonni Hess]

Dear gray12, Thank you so much for taking the time to update the Board on the very successful outcome of your dear daughter's primary tumor resection with the VERY good news of clear margins and her now being at Home recovering and getting lots of important rest so that she can begin to regain her strength and energy . I am so grateful that the surgeon was able to surgically repair the part of the shoulder joint which he had to remove to obtain good margins and that it appears that your precious daughter will be able to regain shoulder movement. Once she has recovered well enough to physically tolerate scans, I am glad that you are going to move forward with requesting and obtaining full scans which need to include chest/andominal/pelvic scans, a brain MRI, and a full body bone scan to help manage her disease. I echo Debbie's wise advice to you on the ASPS FB site to be sure to request a copy of the post op pathology report. Also, you should always request and receive written copies of radiology reports of all past and future scans so that you can have them in your personal records for future comparison and review. I am looking SO forward to our being able to personally meet soon when we are in Alberta for Brittany's upcoming scans, as I continue to hold your dear daughter and you VERY close in heart and thought. Sharing the great joy of your dear daughter's successful primary tumor removal with special caring thoughts, wishes for her speedy healing and full recovery, warm friendship, and continued Hope, Bonni

[Ivan]

Congratulations on the surgery!

Your daughter is the same age I was diagnosed back in 2003. Since she is young she should be able to rehab and do extremely well.

Has the next lung CT been scheduled? If those are metastases, early treatment via cryoablation can keep things under control with minimal discomfort.

[gray12]

Hi Ivan,

Thank you so much! I have read your story, gives me so much hope! She had her first CT scan done August, (after the PET/CT scan) so they will schedule her in in November. It will give her the month of October to get back to grade 12 and some normal teenage life! I will definitely be inquiring about cryo... I even think it may be available in Vancouver! We will wait and see what those little devils are doing in her lungs, and go from there.

[Ivan]

Yes Dr David Liu here in Vancouver does cryo. He treated 3 tumors in my left lung this past February. If there is a few larger ones only, I would consider cryoablating when they get to around 1 cm in size.

[gray12]

Hello everyone! We had our CTscan and bone scan done in November and had follow up this past Monday. Bone scan came back clear and Ct Lungs came back unchanged! We had to move her brain MRI, will be done at the end of December...Dox/Ifosfamide chemo was brought up again, but they even said they don't recommend it at this time. We are on the wait/watch approach. Next scan is scheduled for Feb/March, will be hopeful that we get same results as this one! I did ask about whether they thought we should be starting a systemic treatment, like sutent, but they said it was expensive and it isn't prescribed for this sarcoma? He also said that in order to get the systemic treatment, she would have to do traditional chemo first, and if that doesn't work, then we would be able to get something else? ... I am somewhat frustrated with the lackadaisical approach, however, understand that they have a lot of patients and maybe they have something in mind for my daughter when and if we need it. I will be contacting Toronto or Vancouver here in Canada, as well as Dr Wilky to see what they say about our next step.

My thoughts and love go out to all the new people here, as well as to everyone already in this fight!

[Olga]

You should request the second opinion from Dr.Razak who is the head of the adult sarcoma oncologist team at the PMH in Toronto. It is incorrect that sutent can only be given after the traditional chemotherapy is given (for ASPS there is a different procedure in place). But even sutent night be nit the best option. What about the clinical trials? I think there is a pediatric atezolizumab trial open in Calgary and may be something in Edmonton to? But they all are based on the progressive disease I think, so if everything is stable, there is probably nothing needs to be done.

[Bonni Hess]

Dear gray12, Thank you for your thoughtful update with the VERY good results of your dear daughter's recent bone scan and chest CT Did she also have an abdominal/pelvic scan which is critically important in adequately monitoring this disease? I am grateful that an also critically important brain MRI has been scheduled soon and am holding VERY tight to Hope that the results will be clear. Based on your daughter's current stable disease, I agree with the wait/watch approach (but with regular and appropriate scans including every three month chest/abdominal/pelvic scans and an annual brain MRI, full body bone scan, and Echocardiogram) since it doesn't seem that a systemic treatment is necessary at this time. I am perplexed that your oncologist continues to discuss use of the traditional harsh doxirubicin/Ifosfamide chemotherapy treatment which has been notoriously unsuccessful for the majority of ASPS patients treated with it, and his inexplicably/inexcusably erroneous and false statement that Sutent isn't prescribed for ASPS!!... which indicates to me a significant and concerning lack of knowledge on his part about ASPS and ASPS treatments. Based on that, I would recommend that you try to find a more knowledgeable Sarcoma oncologist, although I understand that there may unfortunately be roadblocks to doing so with your medical system. I am so grateful that you are so proactive, knowledgeable, and resourceful and that you are reaching out beyond the limited and erroneous information provided by the oncologist and his seemingly lackadaisical approach to managing your dear daughter's disease. I am grateful too that you are proactively reaching out for additional treatment advice from Toronto, Vancouver, and Dr. Wilky because with this unpredictable disease it is always important to have a possible treatment option in mind and available if the need arises with disease progression and/or new mets. Your dear daughter, you, and your family continue to be held very close in my heart and my most caring thoughts, and I will be anxiously awaiting your next update. Take joy in the great happiness and relief of the good scan results, and have a MOST beautiful and wonderful Holiday season as you move forward into the New Year with healing Hope in your heart for your dear daughter. Sharing the VERY good and encouraging scan results with great joy, and reaching out to embrace you and your dear daughter with happy hugs, special caring thoughts, healing wishes, much love, and continued Hope, Bonni

[gray12]

Thank you so much Olga and Bonni for your quick responses! We will continue to seek your guidance and support, and we are so grateful for it. I am glad you picked up on my frustration, and support my want for better care for our girl! I did ask about clinical trials, but that too was pushed aside. I can only think that it is because everything is stable right now.. but I am a planner and need to know that there are options out there!