Questions to ask

[Helen H]

Hi All,
I haven’t posted for quite some time since our son passed away, I apologise for that.
I had Breast cancer 2006 treated with surgery, chemo, radio and herceptin, leiomyosarcoma 2011 on left shoulder treated with wide excision
I have recently had surgery to remove an adenocarcinoma from my left lung. The results have also shown ‘bits’ of leiomyosarcoma.
I am now being referred for an appointment at The Royal Marsden (most of my treatment is at New Cross, Wolverhampton) so that I can see a doctor who specialises in sarcomas and genetics. The idea is that they can suggest the best treatment and any clinical trials that might be suitable.
Do you have any suggestions for questions I might ask?
Many thanks,
Helen

[PanP]

Hi Helen.

I am so sorry to hear about Archie. Losing a child is so unbearable – and to be faced with your own illness on top…

In terms of next steps I hope that they do have something. I would ask if it is possible to attack the bits of leiomyosarcoma using radiofrequency ablation or similar technique. In terms of clinical trials it will all depend on what previous treatments you’ve had. I would also ask whether there are metronomic chemotherapy options available. Please feel free to email me directly (pan.pantziarka@tp53.org.uk) if you have questions before or after seeing someone at the Marsden.

Good luck and keep us posted.

Pan

[Helen H]

Thank you so much for that information Pan, I will certainly look into that.
Helen

[Helen H]

Thanks for your help Pan.
The chemo on offer is Docetaxel and Gemcitabine, because the tumours tend to be resistant to chemo they are going to monitor for the time being to see if there is any growth to the small areas that might still be tumour.
I could have the chemo if I wanted but there is is no evidence to suggest it would be of benefit at this time. Trabectedin would be the next line of treatment and Panzopanib is no longer funded.
So I’m back at work and getting on with it.
I’ve been referred to the Marsden again to the Sarcoma team, so I might hear something from them.
Trying to see the positive side of not having to have chemo,
Best wishes,
Helen

[PanP]

Thanks for the update Helen. One other option might be low dose metronomic chemotherapy – Paul Waldron, who had LFS and leiomyosarcoma was on this along side the anti-diabetic drug metformin for a while. I think he may even have posted on it in this forum at some point. For the record low dose cyclophosphamide does not work like a conventional chemotherapy drug – you get none of the nausea, hair-loss and so on. Instead it works to get the tumour blood supply under control so that the tumours can’t get the nutrients they need to expand. If you want to know more let me know and I can email some papers you can share with your oncology team.

Pan

[Helen H]

Thanks Pan, some more information would be great as I’m seeing them again on Friday.
I had read about Metformin but wasn’t sure if they would consider it, I will ask about that and the metronomic chemotherapy

Best wishes

Helen

[PanP]

OK – it’s probably easier if I email these to you…

[Author]

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