javelin 200

[bigmomma1]

marian here, has any one else been on the javelin 200 trial I have just come off 7 months of one trial, I became so ill, I really couldn't stand it any longer. I had no quality of life, so the oncologist has mentioned this trial. Does anyone know what the side effects are. I do think sometimes, the doctors don't understand how ghastly some of the treatment is for us patients. I am going to Mount Vernon this morning to discuss this, but will ask for time to think it over.

[TACorguk]

Speak to Dr Henry Mannings at Star Throwers, he doesnt make any charges. You may need to go and see in person with your notes etc but he's an ex- NHS oncologist so will be able to best recommend any treatment for you. Google Star Throwers in Norfolk

[LorraineD Partner Roy Castle]

Hello Marian

Sorry you have had such a tough time on your trial and understand why it is not right to continue.

The clinical trials information should be available on the Cancer Research website, they detail all open trials in the UK. Hope the discussion with your oncologist went well.

best wishes

Lorraine

@Roy Castle

[Jenco]

Sorry that you have had such a tough time. I agree that the doctors' are not aware of how dreadful the various treatments can make you feel. I have recently stopped part way througha course of standard palliative chemotherapy because it made me so ill and every minute was awful. It has taken a good eight weeks to get out of my system and I have since found out that if I had continued with it and it had been successful it would have only extended my life by a few weeks. We have decided to enjoy the time I've got while I am well enough. The horrors of the treatment are too great. I know that this doesn't answer your question but I am so glad that I have said 'no'.

[Yhp22]

I wish someone had told me and my sister how the vicious treatment (combined chemo and radiotherapy) which my sister endured would rob her of what life she had left and probably hastened it. It was pitiful and wrong for her and her situation and whilst it reduced her tumour it left her lifeless and seriously poorly in other ways and it had already gone to her brain and nobody even checked that before putting her on the road to such misery. So wrong and left us with such anger and loss. The whole situation was shocking and even now 2 years on I still can't deal with it.

So bless you for taking your remaining time to do what you want and I hope you have plans in place to make your departure peaceful and calm as we didn't even get that. We were let down from beginning to end. Yvonne

[Jenco in reply to Yhp22]

Dear Yvonne

I am so sorry that you and your family had such a awful time when your sister was so poorly and at her subsequent departure.I, too, had combined chemo and radiradiotherapy but only had half the initial chemo. I as it made me so ill.

I am starting to feel better after this last lot of chemo (never again) and yesterday I went out for lunch with a friend and we had a laugh. It was so nice to do something normal.

All the way through my illness I have had fantastic support from our local hospice and they and the palliative care team and my GP will be looking after me 'til the end. I am hopeful that I will have a 'good' death not only for me but for my family.

Have you contactd your local hospice for support since losing your sister? Thay often provide a lot of bereavement care and in my experience are lovely people. I do so hope that you are able to find some peace. Your sister must have been so pleased that you were there for her.

With love

Jenny

[LorraineD Partner Roy Castle]

Yvonne

It sounds like you and your sister had a rough experience. I am so sorry that her care and choices were not better explained or considered. It can be difficult to come to terms with an "investment" in gruelling treatment if it reduces the wellbeing of someone when their time is limited.

If you want to private message me with more of your story, we would be happy to support you as best we can. Not sure if you have had any time or support since you lost your sister? I am sure your support meant a lot to her,

best wishes

Lorraine

@Roy Castle