[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

[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

[Helen H]

I think this is a great idea, thank you so much, meeting other people would be a great help.

Just an idea but what about something on how we can empower ourselves by incorporating certain things into our life? For example some of the ideas put forward in the book, ‘Anticancer a new way of life’, by Dr David Servan-Schreiber. Because the cancers we could all get are so varied but something like that would relate to us all.

[Helen H]

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

[Helen H]

Thank you for this information. Thought I would put on the link to the site about this trial. I’m not eligible because I’ve had cancer less than five years ago but they were very helpful when I rang. The link is http://clinicaltrials.gov/show/NCT01737255
Hope this helps

[Helen H]

Hi Pan,

Not yet. We’ve just found out from Archie’s latest scan that the Wilms tumour on his remaining kidney has grown very rapidly. It looks like the only treatment will be to have it removed as he can’t have any more chemo.
We’ll see what they say in the new year and ask about the gene testing then also.

Helen

[Helen H]

Hi Karen, I’m glad the surgery went well and hope the next 8 months go well too. I remember the relief when I finally had my right breast removed and the reconstruction was amazing.

All the best
Helen

[Helen H]

Thank you that is worth knowing. They didn’t seem to know that. They think he may have fragile DNA as well as LFS. So I’ll wait and see what they find out. Sorry, I don’t explain myself very well, there’s such a lot to take in at the moment.

Thanks again,

Helen.

[Helen H]

Hi everyone, thank you for your replies and support. I can’t believe what you’ve all had to go through, you’re all so strong.
The update on Archie is that he finished his high dose chemo with stem cell rescue during that time he had an episode because of all the drugs so they did a routine head scan. This showed a brain tumour which he had removed about 7 weeks ago now. We had to wait a few weeks for the results but it was a choroid plexus tumour, another primary tumour but it had been treated by the chemo he’d already had. He bounced back from the op remarkably and now we’re on a bit of a break from treatment before his next op.

I wanted to add a bit about what screening I’m having. My main oncologist has started sending me for an annual axillary and thoracic MRI due to the radiotherapy. I also have a 3 monthly chest x ray for the leiomyosarcoma, they say x ray is best for showing up abnormalities in the lung which is where this sort of sarcoma can travel to. My oncologist also referred me to a gyno oncologist to monitor my fibroids and they are now recommending a hysterectomy because of the small chance that they can become cancerous. I’m glad they are being vigilant and I will go down that route once Archie is ok.

The other update is that they are going to now look at Archie’s DNA as he’s had 3 primaries diagnosed in such a short time and that they don’t think that they are tumours that you would necessarily associate with LFS? I wondered if anyone else had come across this?

Helen

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