Option suggestions please

Hi

I was diagnosed in Dec 2012, have had carbo/taxol, debulking, weekly taxol followed by weekly Topotecan with almost no break in between.

Just recently the bloating and pain has returned and a scan has shown that the disease has progressed in all areas. I believe I am still stage 3 though.

Because I have had no remission they are not offering any further treatment.

Obviously I am not taking this lying down.

I shall contact Ovacome today for second opinion suggestions.

I would like to ask for recommendations for treatment centres who you think would be willing to take me on.

Also suggestions on alternatives such as turmeric would be appreciated , e.g brand names, quantity and where best obtained. A quick google results in confusing myriad of names etc.

Thanks

Sheila

9 Replies

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  • Dear Sheila

    This is a horrendous situation for you to be coping with. It all sounds so dismissive. I would suggest you ask for a second opinion. This is your right. Check with some of the members on this site who they'd recommend. I know the Marsden has an excellent reputation.

    I'm fighting for you too. I'm outraged.

    I'll be posting up my experience of consulting a homeopath next month. Others have loads of advice on various complimentary treatments.

    Take care. x

    Sending love and better care.

    xxxx Annie

  • Thanks, dismissive isn't the word

    I was told over the phone by the specialist nurse as the chemo specialist was ill and then going on holiday!

  • Dear Sheila, Don't give up. Get a second opinion. Try every avenue.

    Sending all my love xxx Annie

  • Hi Sheila,

    I see by your profile that you were fortunate enough to be offered Avastin is there any chance that you could take them up on this now? also you write that you are going on Topitecan later on aren't they going to give you this now? It would be a good idea to have a second opinion you could ring the helpline and speak to Ruth Payne tel 0845 371 0554 I am sure she will be able to point you in the right direction.

    Best wishes love x G x

  • Sorry I see that you have had Topitecan already love x G x

  • It's hard to be told something very sensitive and important as you have by phone when you aren't in a position to speak to your oncologist about other possibilities. Many people here praise the Marsden. I can see that you're not taking things lying down and neither would I. A second opinion from another specialist in your disease would be a good thing. Lots of doctors take second opinions themselves when they or their family members become ill so i think it's a reasonable thing to ask for and something they would come across very often. Did your oncologist say why you have not responded in the way you might have? Maybe you need a different medication. I have Stage 4 disease which is across the abdomen but the cells are growing very slowly so I'm not having further treatment under I start to show symptoms again.When I was last at an appointment, my oncologist said there were new targetted treatments coming out all the time but you only seem to have had carbotaxol and Topotecan. Since your doctor has gone on holiday, if i were you, I'd ask to speak to one of the team asap. Big hugs to you. x

  • I'm appalled by this, particularly the dismissive manner in which you were told. There is the Rotterdam regime, which is used to treat women with platinum resistant disease. I know it's used at The Christie in Manchester and UCL in London. But please call the Ovacome advice line because they can offer more concrete suggestions.

    My thoughts are with you. Cx

  • Oops, I meant Dec 2011 when first diagnosed, not 2012.

    I have just returned from speaking to the palliative care pain specialist.

    He was very helpful and reassuring.

    He is going to arrange a second opinion either at Oxford or Birmingham.

    Thanks for all the replies, I was in a bit of a state this morning

    Sheila

  • Hello

    I am glad that the palliative care pain specialist has given you hope. I was outraged at the way you have been treated by your hospital. To be told such news over the phone is absolutely unforgivable. We were told something similar to you a few months ago by an oncologist at Royal Surrey who was extremely dismissive, cruel and uncaring. We were shattered. However, we were referred to Royal Marsden and were told that there are options. My sister is now having weekly taxol for 18 weeks (a two week break every six weeks) and it is grueling but thank god - it's doing the trick as this horrid disease is shrinking. I wish you the very best - stay strong.

    SA100 x

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