Lisa From China - Dx 2014

ASPS patients post updates here, including tales of success :)
Lisa
New Member
Posts: 10
Joined: Thu Aug 28, 2014 3:04 am

Re: Lisa From China - Dx 2014

Post by Lisa »

Hi everyone,

Having been busy recently and It's been a long time from my last post. Just want to go back here to share the results of body examinations done last month. It has been more than 5 months since I stopped Pazopanib.

I did lung CT scan, abdomen CT scan and brain MRI, and all of them are clear.
I also did breast ultrasound last month and it showed a 8mm nodule which is 6mm in March. The doctor said 2mm growth shown in ultrasound does not have any meaning since it could be the error. I will do the breast ultrasound maybe 3 months later to see if it continues growing.

Best wishes to those who fighting with ASPS!
Olga
Admin
Posts: 2349
Joined: Mon Jun 26, 2006 11:46 pm
Location: Vancouver, Canada

Re: Lisa From China - Dx 2014

Post by Olga »

Hi Lisa,
it is very good to hear that you are continue to have no new/visible lung mets since you stopped Pazopanib 600 mg after they disappeared. Regarding the suspicious nodule in the breast - we have few ASPS patients who had breast mets, successfully resected, so keep that in mind. May be ask for an MRI of the breast? With TKI class drugs the response sometimes is different in the same patient - we have seen the cases when the mets in soft tissue do not respond and grow and in the same time they stable or disappear in the inside organs, it is called heterogeneity of response between the organs (site specific response). In that case they need to be surgically removed.
Olga
Bonni Hess
Senior Member
Posts: 1678
Joined: Mon Aug 14, 2006 11:32 pm
Location: Sammamish, WA USA

Re: Lisa From China - Dx 2014

Post by Bonni Hess »

Dear Lisa, It is so good to hear from you and especially good and encouraging to hear that your most recent scans showed stable disease with no new scan visible chest, abdominal, or brain mets despite your discontinuation of your Pazopanib treatment :) I agree with Olga that an MRI should be done to more accurately and definitively evaluate the status of the ultrasound visible breast lesion, and it should be surgically removed. Given the nature of this disease, it is unfortunately most likely an ASPS met and it makes no sense to just continue to monitor it. It needs to be removed at the smallest size to ensure a successful outcome with the least surgical impact. Brittany had a small ASPS breast met successfully surgically removed in a relatively simple and easy outpatient surgery several years ago. The doctor had recommended a pre-op biopsy of the lesion to determine if it was ASPS, but we refused because of the concern/ risk of possibly spreading the tumor cells with a biopsy, and no matter what the lesion was, we strongly felt that it needed to be removed from Brittany's body. As we suspected, the post-op evaluation of the lesion confirmed that it was an ASPS met and the pre-op biopsy would have been totally unnecessary. I Hope that you will continue to closely monitor your disease with regularly scheduled chest/abdominal/pelvic CT scans, a brain MRI, and an annual full body bone scan all of which are critically important to manage this unpredictable disease. My very best wishes are with you for continued stable disease and a successful treatment of your concerning breast lesion. Take care dear Lisa and keep the Board updated as you are able. Sharing the great relief and joy of your very good and encouraging scan results with immense happiness, special hugs, healing wishes, and continued Hope, Bonni
Vega343
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Posts: 66
Joined: Wed Aug 26, 2015 9:09 pm

Re: Lisa From China - Dx 2014

Post by Vega343 »

Lisa, thanks for sharing your story! It is so encouraging to our family, our 9 year old daughter has just been diagnosed and had primary tumor removed today... Softball size in her pelvis. We will be developing further treatment plan this week, but your story is outstanding! So happy for you!
Mj
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