How are you all doing? Just coming on here for some support I guess and advice and to give you all an update about my mam. I have only written a few posts about my mums journey so far since she had been diagnosed in January this year. Only 4 month since diagnosis and after 3 chemo sessions, her consultant has said the chemo isn't working and she is platinum resistant. They aren't offering any more chemo or any further treatment at all really, they gave her a little hormone tablet to take daily that might 'keep it at bay' but that doesn't sound very promising, so they've basically said there is nothing more they can do, we mentioned Avastin to them but they also said it would be related to the platinum? As I have mentioned before my Mammy is stage 4 with spread to areas around heart, peritoneum, omentum etc.. We just can't believe this and are completely devastated - she had been perfectly well up to December last year with no symptoms so to hear this is nothing we would have imagined. She has had good and bad days along the way, probably mostly bad to be honest. At this stage she is very tired and weak most days, some days has more energy than others and can be out and about. Finally went to the hospice over the weekend last week to have the fluid drained, this is the first time they were able to do this in 4 months (due to pockets of fluid being too small) and although she got some relief its almost too little too late as she has quite a lot of nausea now anyway and has no appetite so can't even enjoy a meal out even if she had the energy.
Really struggling at the minute, my and my sisters are only in our 20s and can't believe we aren't going to have our Mammy, we at least thought she deserved some luck to have some time.
Hope you are all having more luck than Mammy and continue to stay strong.
Della
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DellaTee
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Go and get a second opinion! They can give single chemos such as weekly Taxol Gemzar or Caelyx on its own there’s no need for them to say it’s not working already! So go and ask for it and don’t take no for an answer if a different oncologist from a different hospital says the same then go into the palliative care talk but exhaust all other options first xxx
Hi Della, As callmemum said go for a second opinion ask for a referral if you need to go your GP for one.
When I was diagnosed I was told I would not last 12 months that was near 4 years ago, I'm on my 6 chemo treatment, today I had my appointment with my oncologist and i asked her if this does not work were do I go and she said I still have opinions.
With all the new trials and different chemo being used you will need to be pro active and push for her treatment.
Go for the second opinion you are entitled to one, even if for peace of mind ..take care Lorraine xx
I agree with Callmemum get a second opinion pretty dam quick there are other chemo drugs and treatments that may help!!
Where are you based? Try another area and a specialist cancer centre such as Christie in Manchester or Royal Marsden in London! Don’t give up , keep strong and we are all here to support you x
Totally agree with other ladies. Seek a second opinion. Sending you and your sisters a hug. I lost my mum when I was 46, I can't imagine how you are feeling having to possibly lose your mum when you are all so young. We are all here for you all. Take care. Kathy xx
So sorry to read your post - it must be heartbreaking for you all. Please take the other Ladies' advice and seek a second opinion, I just can't believe they have no other options for you. Please, don't give up!! . Maybe somebody running this site can help- I'm not sure, but I think there are nurses here online you can speak/chat to. Lots of love and hugs. Christina xxxx
DellaTee, there is no reason to not give Avastin and I would try to pair it in combination with a chemotherapy drug. Two examples are Avastin with Doxil and Avastin with weekly Paxlitaxel. Platinum resistance has nothing to do with getting Doxil or Paxlitaxel as while they are chemotherapy drugs they are NOT platinum based. I have never heard of Avastin not being effective because someone is platinum resistant, in fact you have to be platinum resistant in order to get it covered by the health care system where I reside. You seem to not be getting accurate advice. The variations of what people are told is astounding to me. That is why all the advice to get another opinion elsewhere makes sense.
Really feel for you and your family Della, you are so young to have to cope with this. Must be awful seeing your mum so poorly. As I was reading your post, I was thinking go for a second opinion but lots of ladies already suggested this already. Take care, Jo xx
I was in a very similar position to your mum earlier this year, although without the fluid, and I was put onto steroids this bought back my appetite and gave me an energy boost which got me out of bed.
Avastin is not a chemo so platinum sensitivity is not relevant. However it depends whether you are treated under NHS England as to whether it is funded for you. I have had to pay privately because mine is for recurrence and they only fund first line.
The symptoms for recurrence vary hugely but that’s not the problem you’re faced with now so it’s best to put that to bed and concentrate on what can help your mum and you and your sisters.
You need straight answers as to her options available now and what they will offer her in terms relief
I also think you should speak to the hospice about support for yourselves as they really are the experts
My daughter is 19 and they are happy to offer her help as she needs it.
I think there is an element of facing your fears so you know what they are then you can identify the help you need. I personally, from my experience, would start with the steroid route and then see what is suggested from there
Oh Della, how sad and frightening for you all. I can only echo what all the others have said, go for a second opinion. My cancer Nurse told me that there's no need to feel embarrassed about asking for one. It's perfectly normal. She suggested I get one when I first had a lymph node affected above my collar bone ,when my Onco said no to me having more Chemo. She had said I would have Chemo again. So when my Onco said no, she arranged for me to see another Onco, who also said "no" to having more treatment. It was reassuring, although I did wonder whether I had the same answer because the second Onco worked at the same hospital so would maybe have been embarrassing to disagree. I now have a very nice different Onco as my original one retired.
Don't give up yet. If your Mammy wants to try for more Chemo do get a second opinion quickly. You could also speak to our Ovacome Nurse on this site for advise. Thinking of you and sending love and hugs to you all,
Chemo didn't work for me and I paid for a private consultation at the London clinic which I got within a fortnight. I am now on a clinical trial. Definately get another opinion.
As others have said go and get a 2nd opinion, your Mam (and family) need an Onc and team behind you that will work with and for you. Look, they may be right, but for yourselves you need that 2nd opinion....
My wife had an Onc that basically gave up on her and said 'nothing is going to work' bla bla. We asked for a particular chemo (gem/carbo) She said 'it wont work'. We badgered her into giving us a referral to the Marsden and the Prof there said 'I think you should try gem/carbo'.
Well for 16 months or so until fate took us back to the original Onc all was fine...... Go get a 2nd opinion and good luck!
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