Amanda M from Canada - Dx 2001

[janette minderlein]

hi i am just updating all our new patients a lot the old ones know about my daughter Amanda she was diagnosed with asps in the fall of 2001 were told lots of different things in the beginning and told that my daughters life would probably be no longer than the age of 21 .. she started aggressive surgeries in Nov 2001 they removed the primary tumour Dr.Kim the surgeon at Toronto sick kids she had a great recovery In jan 2002 she had her first lung surgery were told on that right lung she had only 5 tumours it turned out to be closer to 20 they removed..she had lots of pain and remained a real trouper she recovered after lots of setbacks then she had the second lung surgery a month later in early feb which she lost 30percent of that lung she remained in hospital until june of that year.. she started a clinical trial as after the surgeries it showed she had a few new tumours in her lungs and one had actually grown.. we went home to northbay ont canada and in Aug 2002 we were air lifted back to hospital Mandy was taken of the clinical trial of 800mg celebrex daily and a chemo push every other of vinblastin she was in so much pain she had to be taken off the clinical trial. At this point Amanda was in grave shape and we were told she had infections of 4.5 and that death was 5 but praise god she came back around after several months of bed rest and recouping .. she remained of everything in the summer of august 2003 we met with Dr Oliver Kellar from Ottawa and he told us he couldnt believe the girl he was seeing was in such great health we had spent the summer in my hometown of Cobalt and have since moved here he suggested to put her on doxorubicin and ifosfamide chemo she did three rounds and since the new year of 2004 she finished the chemo she went back for routine scans after the chemo an it showed no new growth and actually most of the ones that were there were gone she has one tumour since then in each lung and last scan this year in july 2007 no changes in growth she was told she would never have children because of the chemo and praise god we have two miracle grandsons micheal-john born 2005 and hunter 2007 she is still having routine scans and mri and once a year sees oncologist

[Olga]

Janette - thank you very much for the update! It is very important to know that Amanda had successful resection of the multiple lung metastases - more then 20 one side and more then that the other side and that she had a recurrence after but after two chemotherapies - clinical trial for the Vinblastine+Celebrex and later 3 rounds of the conventional soft tissue sarcoma regimen AIM her lung mets regressed and two remaining nodules are stable for a few years after - so they might be necrotic after all! And that she was able to have two beautiful sons - people ask often how the pregnancy might influence sarcoma so it seems that it didn't have any adverse effect on Amanda's health and gave her and you a lot of happiness with the boys! Stay with us, keep updating when next scans are done so we all stay connected and collect all the information about ASPS.

[Olga]

This is Amanda's latest update (reposted):

I went for my scan results the beginning of February, dr Kellar of Ottawa is my oncologist... I have 2 nodules in my left lung, that have stayed the same for quite some time... Whether or not these nodules are cancerous or not, I guess I will never know, and really as long as they are staying stable, dont care to know as my health has been awesome.... I will still be going for scans every year, my next scans will be July some time... Hoping this disease remains dead in my body.... Anyone with any information as to what these nodules could be feel anti spam to respond... i mean if they were cancerous, my thought are they would have done something by now.... my positive outlook on life is what i find is my best medicine... I remain a supporter of the asps group, and always will be, it has been an experience i intend to put an end to... Hopefully there is no sequel to this cancer for me... As for everyone else having the ongoing battle with this UGLY UGLY disease, the best of love to u all, my prayers and thoughts are with u... There definitely is hope, thanks to u all

Amanda Minderlein

[teresa]

Hi Amanda,
Thank you for being so brave as to share what you have been through with us.
Teresa & Lawri

[Ivan]

Amanda has only one questionable lung nodule which hasn't done anything within the last couple of years, but other than that she currently lives a normal life

[D.ap]

Amanda and family

This being 2013, I am wondering how you have all weathered to date.
Please let us all know and give us the hope we so need.

Thanks in advance

Debbie

[Ivan]

Amanda continues her regular follow ups and basically nothing has happened as far as ASPS goes for her, as far as I know.

[kurkure]

Hoping this disease remains dead in my body....
Anyone with any information as to what these nodules could be feel anti spam to respond...
This being 2013, I am wondering how you have all weathered to date.
for everyone else having the ongoing battle with this UGLY UGLY disease, the best of love to u all, my prayers and thoughts are with u...

[Olga]

Hi Amanda:)
How are you? Are the nodules you had visible in your lungs still the same size and appearance? They are probably the scar tissue. We have another patient from UK that had chemo plus surgery to remove some mets and the remaining something stays in his lung the same size and appearance for a long time now - more then 10 years? He had doxorubicin and ifosfamide chemo for only two rounds and a thoracic surgery. He works at Cambridge. If you want you can contact him directly.

As I remember you had a thoracic surgery, then clinical trial for the Vinblastine (chemotherapy) +Celebrex (COX-2 inhibitor/anti-inflammation drug) and later 3 rounds of doxorubicin and ifosfamide chemotherapy.

It looks like you forgot your login again, next time just let me know and I'll change your password so you can keep using the same screen name.