Alveolar Soft Part Sarcoma

Hi NZL 

Hi I normally hang around on our Soft tissue sarcomas forum but saw your post and wanted to reach out to you. My wife has Leiomysarcoma and it is metastatic in her lung - long story - but I don't think anyone has even attempted to count numbers.

For my wife the doctors tried Doxorubicin - which was perhaps slightly too successful in that it killed cancer cells that at the time formed the wall of her lung - and caused the lung to collapse. Once they had repaired that the suggestion was to try gemcitabine and if seems to have stopped the cancer growing - she has had stable cancer now for over 6 years and is in really rather good health.

As well as our site here another useful source of information and support can be Sarcoma UK 

Where are you being treated? We are lucky to live close to Oxford and one of the best (IMHO) sarcoma centres in the UK.

<<hugs>>

Steve

Hi NZL 

My daughter has suspected ASPS. We’re still waiting for a formal diagnosis. She is only 11 months old. Her biopsy was over 6 weeks ago and we’re still no closer to anything formal. Do you mind me asking which hospital diagnosed this? As we see her oncology team on Monday and i’m losing faith in the diagnosis as her biopsy has been sent to several hospitals already without success. 

Im sorry to hear of your diagnosis, it must be such a shock as it has been for us. It also seems incredibly rare so it’s difficult to find people who relate. I know you posted this a long time ago, so do let me know how you’re doing

Thanks for your message Steve, sorry it has taken awhile to respond. I hope your wife is going strong still? It sounds like she has had two effective treatments.

There's no pharmaceutical treatment for my cancer. I have gone to a clean natural diet, liposomal vitamin C and working on mental and spiritual health.

Omg, I dont know what to say that is so young. I live in New Zealand. I got surgery in Auckland and am under the Wellington team now. 

Mine metastasized to my lungs and I haven’t started a trial drug. I hope you get seen soon by the oncologist team. Please let me know how you go.

Hi NZL 

My partner has recently been diagnosed with the same. He had the tumour removed in his leg and his recent follow up scans have shown 20 tumours in his lung. We are hopeful he will get on a trial for some combination drugs but here in the UK his tumours are too small for him to qualify at the moment and they won’t remove them as they’ve said there are too many

How have you been feeling? There’s so little out there about this type of tumour. Very hard to wrap our heads around it and know next steps. Have you had any further treatment since your post 10months ago. 

I hope you are keeping well 

Have a look at this, if you haven’t already. I discussed it with my daughter’s oncologist but because she is only 1 year old, there’s no data or research to support a child so young being able to try this treatment. But have a look, it may be useful. I am sorry for your partners diagnosis, cancer is scary anyway but this rare cancer is a daunting experience.

 www.cancerresearchuk.org/.../a-trial-of-sunitinib-and-nivolumab-for-sarcoma-immunosarc2-0

Thankyou. This sounds like the trial the doctor discussed with us last week but we are waiting for him to be eligible due to the size of his lung nodules being too small at the moment. 
Yes it has been a very daunting experience and not something I would wish on anyone.

I hope your daughter is well and there are some options for her. I can’t even behind to imagine how frightening it must be for you as a parent

I'm sorry to hear about both your loved ones.

I still have 33, celebrate the small wins, they have all enlarged and one is potentially causing a cough as it's up against the airway (I think anxiety is some if not most of it) I am going to try radiation on the one by the airway as I have experienced some coughing up blood which is likely from this tumor and sunitinib wouldn't be a good choice with this active tumor. I hope opted to start an immunotherapy drug. I'm waiting out to hear which one I can get in NZ.

Are either of you trying any natural remedies?

Sorry to ask but are they growing quickly? 
why isn’t sunitinib good for an active tumour? Have you been on that already and it’s not worked? 
I hope you manage to start on the immunotherapy drug soon. 
my partner hasn’t tried any natural remedies but to be honest I think we would try anything. People have suggested intermittent fasting/cold therapies/supplements but haven’t done any research into it. 
It’s funny what you end up celebrating with cancer isn’t it? 

I hope you are well and radiotherapy helps with the airway tumour.