Amanda from New Zealand - Dx 2014 @ 46 yrs of age

[Olga]

Debbie, it is obvious that the tumor was considered a neuroendocrine tumour in Egypt and later was reclassified as ASPS in NZ, it is not rare for sarcomas to be misdiagnosed and reclassified.

[Amans]

Hi Debbie

Sorry for my late reply. When my lump was found to be a tumour we were living in Egypt. The biopsy and pathology were done in a laboratory connected with a Centre specializing in breast cancer. Indeed, they got it wrong but I don't hold it against them. They had to work fast in a city of 19 million. Here, in NZ, with the evidence of aggressive secondary spread which did not fit with a neuroendocrine tumour and more time to do a proper diagnosis, they were able to get it right. It took them three weeks as they had never seen this before.

Cheers
Amanda

[Amans]

Thanks to Bonnie, Ivan and Amanda for your posts. You provide a lot of advice I will begin to take on board. They also provide me with a number of questions to ask my doctor, especially about the availability of different drugs and procedures.

I have started taking Sunitinib and so far so good about side effects. Long may this last. Also will have a baseline CT scan next Friday.

Cheers
Amanda

[D.ap]

Hi Amans

No need to apologize. Glad to hear from you. I was hoping we hadn't scared you away..
How is the suit nib treating you to date ?
We were offered it right off the bat but chose to not take it as Joshua's ASPS was limited to his lungs .
He has since had laser surgery in Germany on the lungs and has had over 140 tumors resected.

Is the hope to keep the tumors from growing any larger?

Write when you are able
Love
Debbie

Ps. Must not of "refreshed " my iPhone forum
At 2oclock our time

[Amans]

Hi Debbie

Not at all. Wow! I can't even begin to envisage how laser surgery is done and how long it would take to remove 140 tumours. I get the feeling I am in the too hard basket with so many lesions in my lungs and liver. Perhaps we do not have this surgery here or perhaps I am not the best candidate. They don't want to remove my primary tumour as it is so large the margins that have to be removed may mean that I will lose mobility. It is not giving me grief except the odd twinge. But I can understand that it would be good to remove it to avoid further spread.

Perhaps that is why I am on Sunitnib; to halt any growth or spread. I can live with that.

Cheers
Amanda

[Bonni Hess]

Dear Amanda,
Thank you for the additional information. I am grateful that you are tolerating the Sunitinib well thus far, and I am holding very tight to Hope that it is providing disease stability and shrinkage of your primary tumor and lung and liver mets. If the Sunitinib shrinks your primary, Hopefully the doctors will then move forward with resecting it if good margins can be achieved without affecting your mobility. My best wishes and positive thoughts are with you for very good results from your upcoming scans and I will be anxiously awaiting your next update when your time and the situation allow. Take care Amanda and keep in touch as you are able.
With special hugs, caring thoughts, healing wishes, and continued Hope,
Bonni