:(

Mum2bellaandwilliam

Hi ladies,

I have been away for a while , mum managed to complete the 6 rounds of doxil , but the numbers are creeping straight back up again. We are not surprised, but still shocked to hear it none the less.

The onc gave us three options .

1 do nothing, ( not an option !!!!)
2 topotecan , in mums case it only has about a 15% chance of working.
3 clinical trial.

I asked why he would do nothing, basically , he said the chances of this working are so low may be we were better to do nothing. Mmmmmm I will take the 15 % chance rather than no chance thanks.
With the clinical trial there is the chance it may not work and then she may be to sick to go onto have topo.
It all seems like a gamble, if only it were money and not a life.
Them I went to ask him about gembicide as he didn't once mention this as an option, he said yes we can do that but It has an even lesser chance than topo and he had to look at his ' figures' I don't think he meant about the cost but at the chance of it working......well matey if there is even a tiny chance of it working then it is worth a shot.

Mum has decided to press on with the topo, fingers crossed it gives her another few months of quality life.


Liz xxxx

kellyh33

So sorry
Hi Liz,
First let me say I am feel very badly for you and your Mom. I know how heart breaking this disease is.
My Mom did 7 rounds of carbo/taxol and it stopped working for her. Also Mom's surgery was not successful due to the location of her tumour. It was wrapped around her cardiac line and therefore could not be removed. We were told Sept 2010 Monday had 12-18 months, she made it survived 11 1/2 months.
When it stopped working Mom did 13/15 weeks of a clinical trial. When they first did a Ct scan in April there was no change to the size, 6 weeks later the tumour had grown a cm..
Next Mom did 4 treatments of doxil. It did nothing for her, by the time we realized it was too late to try anything else. This was August 5th, Mom was scheduled for her next treatment Aug 8th and the doctor was willing to do it but Mom was not.
So I guess if I knew then what i knew now I would have told Mom to forget the clinical trial go with something tried and true.
Just my two cents worth. I hope I am not scaring you but I wish someone had given us this same advice although it mom's case it probably wouldn't have mattered what she did.

poopergirl14052

kellyh33 said:

So sorry
Hi Liz,
First let me say I am feel very badly for you and your Mom. I know how heart breaking this disease is.
My Mom did 7 rounds of carbo/taxol and it stopped working for her. Also Mom's surgery was not successful due to the location of her tumour. It was wrapped around her cardiac line and therefore could not be removed. We were told Sept 2010 Monday had 12-18 months, she made it survived 11 1/2 months.
When it stopped working Mom did 13/15 weeks of a clinical trial. When they first did a Ct scan in April there was no change to the size, 6 weeks later the tumour had grown a cm..
Next Mom did 4 treatments of doxil. It did nothing for her, by the time we realized it was too late to try anything else. This was August 5th, Mom was scheduled for her next treatment Aug 8th and the doctor was willing to do it but Mom was not.
So I guess if I knew then what i knew now I would have told Mom to forget the clinical trial go with something tried and true.
Just my two cents worth. I hope I am not scaring you but I wish someone had given us this same advice although it mom's case it probably wouldn't have mattered what she did.

fight
maybe the next round of chemo will lower the numbers. I hope your Mum is feeling well and enjoying the fall weather. Praying for you and your Mum...val

Cafewoman53

So Sorry
You and your Mom are in a tough place but there is nothing in your drs figures that will tell him if you are in the 15% so do what you feel is right.Good luck.
Colleen

Mum2bellaandwilliam

kellyh33 said:

So sorry
Hi Liz,
First let me say I am feel very badly for you and your Mom. I know how heart breaking this disease is.
My Mom did 7 rounds of carbo/taxol and it stopped working for her. Also Mom's surgery was not successful due to the location of her tumour. It was wrapped around her cardiac line and therefore could not be removed. We were told Sept 2010 Monday had 12-18 months, she made it survived 11 1/2 months.
When it stopped working Mom did 13/15 weeks of a clinical trial. When they first did a Ct scan in April there was no change to the size, 6 weeks later the tumour had grown a cm..
Next Mom did 4 treatments of doxil. It did nothing for her, by the time we realized it was too late to try anything else. This was August 5th, Mom was scheduled for her next treatment Aug 8th and the doctor was willing to do it but Mom was not.
So I guess if I knew then what i knew now I would have told Mom to forget the clinical trial go with something tried and true.
Just my two cents worth. I hope I am not scaring you but I wish someone had given us this same advice although it mom's case it probably wouldn't have mattered what she did.

Kelly, thanks for the
Kelly, thanks for the advice, I love this board there is always someone who has been there and done it , mum is going to try the topo, if that fails then she may have the chance of the trial if she is still well enough. At least she still has options left.
This disease is just heart breaking , it has been relentless, she has never had a rest from chemo or from having ascites and the endless paracentisis that go with it, ggggrrrrrrrrrr , I hate this b*****d

kellyh33

Mum2bellaandwilliam said:

Kelly, thanks for the
Kelly, thanks for the advice, I love this board there is always someone who has been there and done it , mum is going to try the topo, if that fails then she may have the chance of the trial if she is still well enough. At least she still has options left.
This disease is just heart breaking , it has been relentless, she has never had a rest from chemo or from having ascites and the endless paracentisis that go with it, ggggrrrrrrrrrr , I hate this b*****d

You Mom
I hope your mom gets the some relief from the topo. My Mom also never had a chemo break, one surgery, and 24 treatments in 14 months. Strange enough the ascites never returned once mom had 2 litres drained during surgery Sept 2010, the only thing new was her feet began to swell in May. The oncologist told us not to worry about it, I believe she knew was losing the battle but didn't want to upset Mom any sooner than necessary. I thank her for that.

Tina Brown

Hi Liz
I have only just read your post and I would like to give you a bit of hope. I'm on Topotecan and it is amazing stuff for me. Straight away after the first infusion I felt better My CA125 results are also amazing. It began at, 1,750 ish and after 2 treatments went down to 991 and today after my 3rd treatment it is 327.

I know you posted this a while ago - please tell me how she is getting on.

Lots of love to you and your mum, Tina xxxxx

Tina Brown

Tina Brown said:

Hi Liz
I have only just read your post and I would like to give you a bit of hope. I'm on Topotecan and it is amazing stuff for me. Straight away after the first infusion I felt better My CA125 results are also amazing. It began at, 1,750 ish and after 2 treatments went down to 991 and today after my 3rd treatment it is 327.

I know you posted this a while ago - please tell me how she is getting on.

Lots of love to you and your mum, Tina xxxxx

Hi Liz again
Topotecan is working better for me than the Carbo/taxol ever did. I really hope it does the same for your mum xxxxx

Mum2bellaandwilliam

Tina Brown said:

Hi Liz again
Topotecan is working better for me than the Carbo/taxol ever did. I really hope it does the same for your mum xxxxx

Hi Tina,
Mums not doing very well on the topo, she has been really poorly, and keeps being sick despite different concoctions of anti sickness meds. And today we found out her platelets are to low for her third lot tomorrow However she has only has two treatments,from the first cycle, she has hers for 3 weeks then a week off.
I hope it works for her , and they can get the sickness under control , because at the moment she is miserable, she is on morphine patches because she is suffering from pain, and the ascites is still ever present and has to be drained every 3-4 weeks, I think this is why she is pain.
But she lives to fight another day xx Liz xx