Mum's cancer is active again and she is about to start third line chemo - pegylated liposomal doxorubicin - but it has been suggested that we consider the above cancer trial. If Mum is suitable she would then be allocated to either the chemo alone arm or undergo treatment with chemo and the cytokine NGR-hTNF. I have searched online and these trials have been ongoing for some time now so wondered if anyone has experience of them.
Kind regards, Robert
Hi Rob,
I am sorry that I am not much help with your question but you could give Ovacome helpline a ring and speak to Ruth Payne tel 0845 371 0554 she might be able to enlighten you on the way forward... Best wishes love x G x
Dear Rob
I hope you get some help on this question. What does your Mum feel about going on a trial? Is she keen to try it? If she is then I suggest she takes up the offer. If she's worried about it or frightened then it's best to support her in her wish to stick to known drugs. I would imagine the best person to give an unbiased and informative view would be her oncologist.
If you were asking what I'd do I'd jump at the chance. I looked up the protein therapy on the internet and it's already in Stage III trials in the US but just Stage II here.
Good luck with whatever route your Mum choses. It's a rotten time knowing the tumours are becoming active again and can be a bit depressing looking from the wrong end of a course of chemotherapy.
Please pass on my very best wishes to her.
Love Annie xx
Dear Robert
No experience of this particular one but did go on a different randomised one. It's a funny thing putting what treatment you (or your mum, in this case) decision in someone else's hands. I thoroughly researched and was happy enough that if I was randomised into any of the 3 groups I would be happy with the outcome. You can always apply and then withdraw if not happy with the draw - but I do rather feel that's a bit of a no no, as we all need these trials to happen if research is to move forward. I would say: research all the combinations very well and have a view what your optimal outcome is. I was lucky - I didn't get the one I ideally wanted to be in but the middle group, rather than being stuck with the basic normal treatment. It was a phase 2 trial so already showing good results - yours is even later. So I felt I had increased my odds a little, while helping by participating.
The other good outcome of trial participation is the slightly-more-frequent-than-NHS-could-fund monitoring. I felt that was fair recompense for taking a slight gamble.
Hope that bit of experience adds something useful
Love
Sue xxx
Thank you all for your responses. Mum seems ok with the potential benefits and is keen to try whatever her oncologist recommends. The trial has been running for some time but I cannot see any published Phase II results - earlier stages seem to show promise however.
Seeing Mum's oncologist at 9.30 so we will know more then.
Hi Rob,
Sending you my best wishes to your mum, (she is probably with the oncologist as I write) I can understand your concern as your mum needs to know what she is letting herself in for, when they suggest a trial it is because your mum fits the criteria and while it is admirable to go on trials it is often the case that it is of more benefit to others in the future, so weighing up the pros and cons is difficult...but like it has already been mentioned she will be monitored more. Love x G x
Thank you for your reply. Mum's oncologist actually came up with the option of reverting back to Carboplatin plus Caelyx which Mum preferred the sound of. I will be keeping an eye on this and other trials ahead of any future treatment Mum requires.
Well there you are ...problem solved (at the moment)... it is good that she has been offered something she feels more comfortable with...it is awful to have to make decisions ...and we all feel that we don't know enough ....because we are all so different... I am glad she has gone along with what she feels is right for her... and when trials are offered it is just another dilemma (and guilt trip).
Thank you for letting us know ...best wishes to you all love x G x
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