Is this the end of the road? Please can anyone offer any suggestions?

[SusanC]

My Mum aged 71 has had OC since Oct 2010, she had Carboplatin 4 rounds then debulking surgery 7th Feb 2011, followed by another 3 rounds of Carboplatin. She relapsed within 6 weeks and started Taxol, 2nd infusion she passed out as soon as they started the infusion so they stoped this line of treatment. She then went on to Caelyx but has suffered really bad reactions with her hands and feet so red and the skin cracking, because of the reactions they ordered another CT scan and found the chemo had not worked. ( she has a copy of the results but so far has been unable to pluck up the courage to read them ) Yesterday they advised she take 2 months off while they try and get funding for Taxotere. Mum now feels that she has reached the end of the road, she is normally so brave and confident that to hear her say this is awful. My main question is, has anyone else been in the same position? Anyone been refused Taxetore and if so what were you offered? Waht other drugs are there available? Just really need any advise? Does the fact they she was not told to contact macmillan mean that they have not given up on her yet? Sorry for all the questions but feel so isolated and unable to help her.

Should she ask for a second opinion?

Thank you in advance for any help you can give.

Sue

X

[BusyLizzie]

Hi Sue,

My feeling is that is never the end of the road until your Mother wants it to be or until her body can take no more. That is certainly my attitude, and I have not responded to first line chemo (or second line yet - I have had round 1 of caeylx only).

These are the drugs I know about beyond carboplatin/taxol together. I also note Taxotere which you had mentioned - I had not come across this before for Ovarian cancer, but having googled it, I shall add it to my list!

Weekly Taxol (number 3) is obviously off your list.

>1) Topotecan

>

>2) Topotecan / Thalidamide

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>3) weekly treatment with paclitaxel

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>4) Avastin (drug not chemo - approved but not on NICE list)

>

>5) Gemcitabine

>

>6) Hormone Treatments

>

>7) etoposide

>

>8) trabectedin (approved but not on NICE list)

>

>9) Treosulphur and Gemcitabine

Look on the cancer research site for any ongoing trials which may be applicable. But note where they are being held, as your Mum may need to travel.

I had a Macmillan nurse as soon as I was diagnosed with oc. So I think the lack of one is not an indication of anything except you are missing out on some good mental and practical assistance.

If you do want a second opinion and are prepared to travel I can give you some names of top ovarian cancer specialists on the NHS.

Good luck to you and your Mum. A lot of women on this group get remissions or respond well to treatment. Unfortuinately, some of us do not and for us the battle is relentless.

Love Lizzie

X

[wendydee]

Hi Sue,

So sorry to hear that your Mum has had such an awful time of it lately, she must be feeling very down and unsure of things, as must all of her family and friends. The fact that she's been given a Macmillan number to ring doesn't mean it's the end of any further treatment or that she can't enjoy a good few years yet. There are a lot of ideas on this site for living well, even if a terminal diagnosis has been given. We are all different in the way we react to treatment and drugs, and quite a lot of women have kept going for a good long time after treatment seemed to be exhausted. Macmillan are a good idea, brilliant support, as they will help all of you to talk around any thoughts, feelings, emotions etc. It will ease things for all of you, especially your Mum. They can also advise on any financial matters, benefits, drug reactions and support that your Mum may need to get things adapted for her to live independently (no idea what her circumstances are ...) They will also allow her to talk through any thoughts and questions she may have, that she's unable to talk through with those who are really close to her. They do this for people at lots of different stages of their cancer journey. I work with a Macmillan survivorship group who give help for all the issues after having cancer, so it's definitely for the living!

I do hope you will find the support you and your Mum need. Macmillan is a great place to start, but do get back on here and ask any questions, no matter how daft they seem. There's a great bunch of women who are really helpful and will cheer you up when you're feeling unsure

All the best to your Mum, and you, of course!

Love, Wendy xx

[RuthPOvacome]

Dear Sue

I am one of the support nurses at Ovacome and am so sorry to hear about all that has been going on with your mum. It sounds as if your mother does need a break from chemotherapy as the treatment is causing so many side effects and making her feel so unwell. Her immune system needs a bit of a break. If Taxotere is not available it maybe worth asking if there are any trials which would be suitable or thinking about getting a second opinion If you would liek to discuss this further do please give us a ring.

All the best Ruth